From the Beginning: 2008 Posts
Updated: Jun 15
The Beginning: August 24, 2008
Headaches, headaches, headaches. That is why Heather went to the doctor. She had changed jobs and there was a lot more computer work and some reorganization going on, so we thought she needed to see her eye doctor. Once the eye doctor said her eyes would not cause the type of headaches Heather had, she decided she needed to see our family internists (Dr. Daryani or Dr. Denman). Heather's appointment was on April 16; our doctor sent her for an MRI that afternoon. (As a side note: We believe her quick decision may be what eventually saves Heather's life! Many doctors play around with "maybe it's migraines" or "maybe it's allergies" or "maybe. . . " But our doctor goes for the worst first, and then works backwards.)
Heather immediately knew something was wrong. The MRI tech started acting strange and would not allow Heather to leave. Finally, the tech told Heather, "I have to see what your doctor wants us to do before you can leave." That's when Heather called us. I don't know how fast we drove, but I know we reached her in record time! Once the tech told her she could leave, we went to Heather's house and tried to act as if the tech had made some horrible error.
The next day, Heather called me at work. The words I heard: "It's a tumor. Come home." Chills still run through my blood as I remember those words. Our doctor was so supportive! She called Heather, gave Heather her personal phone numbers, and told Heather to have me call her. I did. The news did not change.
Friday, April 18 we are sitting in a neurosurgeon's office (Dr. Long). We see the MRI and we see the tumor. We also see another tumor in her brain stem! We again hear the words "brain tumor" and now the word "cancer." We hear the word "surgery." It is a lot to take in.
The following week brought many more MRIs and the first of two surgeries. Thursday, April 24 was Heather's first. Our neurosurgeon felt fairly good about the results. The next morning's MRI supported his results, and he seemed upbeat.
Recuperation from this surgery is surprisingly quick. Heather was released on Sunday, April 27 to come back to our house. She obviously had to take life slowly and could not lift or bend over. Work was put on hold for 4 weeks and then only 1/2 days.
But on Tuesday, May 12, we again heard the words "surgery" and "cancer." We knew the pathology report had come back with "diffuse astrocytoma." We spent many hours researching and learning about that particular type of brain cancer. We knew Heather was "lucky" that diffuse astrocytomas are "only" Stage II, but we also learned that Diffuse Astrocytomas are slow growing but almost always develop into a more aggressive form. Dr. Long felt he needed to perform surgery again. He said that since she tolerated the first one so well with few problems, he could be more aggressive and retract more of the tumor. Her second surgery was scheduled for June 12.
June 12 was almost identical to April 24. The results were certainly more positive because more of the tumor had been retracted. Heather again tolerated the surgery well - maybe a little more problems with her left side, but still OK. After PT and time, she still favors her left side a little. Sometimes she seems to forget to use her left hand. But again, no big problems!
The follow-up appointment left us a little unsettled. Basically, Heather was told that she will have MRIs every 3 months to see what happens. If the cancer starts to become more aggressive, it would be caught early and then more aggressive treatment would take place. Heather's cancer has intertwined with her good brain cells; therefore, removing the cancer is impossible. As for the inoperable tumor? There is nothing we can do but wait and see. She has her next MRI and neurosurgeon appointment on September 15. Although I respect our neurosurgeon and believe he is a "doctor's doctor," I have always felt a second opinion is always a good choice.
We are lucky to have a friend who is a neurosurgeon on the west coast to help us with questions and answers. He even visited with Dr. Long and feels Heather is in good hands. But getting that second opinion just kept calling me!
I continued to research as I wanted to find out more. What's being done for brain tumors? What are the treatment options for diffuse astrocytomas? What is the life expectancy? So many questions. After hours and days and weeks of research, I found one of interest to me. I just felt good about it. Dr. Susan Chang from UCSF Medical Center. I contacted her and she wrote back. Heather sent information, and she wanted more. Finally, we sent everything - from all MRIs, operative reports, pathology slides, etc. We will be meeting with Dr. Chang on Wednesday, August 27 to see what she thinks Heather's treatment options are. I know Dr. Chang is completing a Phase II trial using the drug temozolmide, which is a chemo drug that is used to stop the growth of cancer cells and even shrink tumors. Now we just need to see if this is something that can benefit Heather and the many others who have this devastating disease.
So, a short story for such a long time in our lives. After our trip to San Francisco, I will write an update. Keep praying for a LEAP for a CURE!
The SF Trip: August 29, 2008
We wanted better news. We planned for better news. We never expected bad news. We went to UCSF Med Center with hopes of Heather becoming a part of a clinical trial - Phase 2 trial - for patients with Stage 2 Astrocytoma. Dr. Susan Chang is heading such a trial.
However, after a new MRI and a subsequent meeting with Dr. Chang, we learned that Heather's pathology report shows some characteristics of Stage 3. That means that she cannot participate because Dr. Chang feels Heather would be "under treated" with just Temozolomide; Dr. Chang feels Heather needs radiation and chemo treatment. I must have asked her three different ways before I actually understood: No, Heather does NOT qualify!
So, the news isn't good, but our hopes are still high. We LOVED Dr. Susan Chang! Heather has a long, bumpy 15 months ahead of her. She agreed to join a study about the genetic links to brain cancer. Since my father died of primary brain cancer at the age of 43, Heather's involvement in the study might be of some help in the future. If she has whatever the study needs, my girls and I will be next. Then, my sisters and their children.
After three days, we are back in Omaha and already met with Heather's oncologist. Next week we will meet with a radiation oncologist and her regular oncologist as well. I have a lot of questions regarding radiation to the brain! Omaha does not have neuro-oncologists, I guess. I have heard that from two doctors and another brain cancer family. I think that is odd.
I have called a brain tumor support group. I think it is time we join - Heather too. Knowledge is power; and the more we learn, the more we can be proactive. Most importantly, Heather needs to talk with others who are sharing her experiences. I know that depression is something to keep an eye on, so the sooner we get involved, the better.
Tonight, I feel depressed myself. I am a helpless mother who cannot protect her child. My husband and I know what we should say to each other, but we don't. We both handle emotions differently. I have to be strong because Heather needs me to be. I have to be strong because my husband needs me to be. So, I will fight on Heather’s side and wish that is I who is undergoing the treatment.
Next week we will learn more - too much more! We will learn all about brain radiation. We will learn what all the numbers mean. We will learn about blood counts, medications, etc. - knowledge that I wish I never had to know.
Next message will contain some of our "funnies."
The Next Step: September 3, 2008
I thought this would be some of our funny family stories (mostly Heather's funnies), but today just doesn't seem appropriate for them. Maybe next time.
We met with Heather's radiation oncologist today. Tomorrow is the regular oncologist. For the first time we heard "anaplastic," which is another word for malignant astrocytoma Stage III. I have spent the last three months learning everything I could about Diffuse Astrocytomas - Stage II, which means low grade. Today, it's "anaplastic" and "aggressive." I have much more to learn.
Before radiation treatment can begin, Heather will need a CT scan and another MRI with contrast. Then, a team of people will blend the two together to create the perfect plan for Heather. She will begin 3-Dimensional Conformal Radiotherapy (3D-CRT), which combines multiple radiation treatment fields to deliver precise doses of radiation to the brain. The idea is to tailor each of the radiation beams to the patient's tumor, allowing coverage of the brain tumor itself but keeping radiation away from nearby organs, such as the eyes. She will probably begin this treatment on Monday, September 15 if all goes well.
Along with radiation, Heather will be taking daily doses of Temador (chemotherapy) for six weeks. After her six weeks, she will get a break for about three weeks before she begins a year of chemotherapy. We will be heading to San Francisco during her "break" to see Dr. Chang again.
Hopefully, tomorrow will bring us more information and maybe a sense of better news. No matter what news we receive, we will continue to be hopeful and grateful for all the support we have received. Heather is our #1 concern, and she gets the BEST!
Wig Shopping – September 5, 2008
Heather is almost ready to begin her treatment. As I mentioned before, she will have an MRI and CT Scan Monday, September 8. That is the last appointment we have until her radiation / chemo treatment begins.
We met with Dr. Popa, the oncologist, yesterday. Heather has two nausea medications and two anti-acid medications that she will need to take along with her chemo and radiation treatments. She has to take them at specific times in conjunction with the chemo and radiation. I asked Dr. Popa if Heather would get sick, and the doctor said yes. She also said at the very least Heather will have thinning hair, but probably she would lose most of it.
Heather has been very organized and has taken ownership to managing her insurance and her medication. Of course, she IS 29, so she SHOULD be able to do this. But when I look at her, she is MY LITTLE girl. I want to hold her in my arms and rock her as I used to. So watching her handle this situation makes me very proud of her for being so level-headed. And, she has not lost her sense of humor either. In fact, yesterday when she had to pay another $40 copay, she said to the receptionist, "Brain cancer is an expensive little disease." The response, "Yes, it is."
After her pneumonia shot and blood work, we were off to go wig shopping. Heather has been told by many people to go now before she starts to lose her hair. It isn't as dramatic that way. She tried on many different styles and colors and finally narrowed it to two. I couldn't say, "Pick one"; I bought both! They come in next week. Michele and I had to try on a few as well. Michele looked great in one; I looked like a freak show in the two I tried on!
I received an email last night from a man in Omaha who was diagnosed last February with Stage IV brain cancer. He lifted my heart as he is doing well with no signs of his tumor returning. He and Heather share the same surgeon, same radiation oncologist, and Estabrook Cancer Center. Their treatments seem to be alike - at least in name and procedures. Instead of a support group, he may be the person Heather can talk to. He is about 6 months ahead in the treatment plan. In addition, he is planning to become involved with Leap-for-a-Cure, so I am thrilled!
Until next update, remember that "All growth is a leap in the dark." We are certainly in the dark, but we are learning more each day about ourselves and about brain cancer. We will fight and win this war against Brain Cancer!
Time to Thank You: September 10, 2008
I just returned from my somewhat monthly dinner with a group of friends - very special friends. Somehow we started calling our group of nine the "Ya Ya's" - not real original, but it works for us. We have been meeting for about 10 years, I think. When I think of all the "thank yous" I owe people, my "Ya Ya's" are at the top. From food, to hospital visits, to support, to gift cards, to grading my papers - my "Ya Ya's" have been there. We started donating money each month for a worthy cause; everyone chipped in $10 and then one person used the money to help a person in need. I'm not certain when it started and I am not certain when we stopped, but tonight, they all chipped in their money to support Leap-For-A-Cure. Our "Random Acts of Kindness" has hit home. One of us is a person in need. I can never express my gratitude to these wonderful friends who are always there. Thank you.
So, on my way home from dinner, I began to think about ALL the people who have been so kind and supportive. My work place - Millard North High School - has been fabulous! Starting last spring after diagnosis, my school has embraced Heather and my family with kindness and genuine concern. My English department colleagues will always have a special place in my heart for their understanding and patience with me. From my tears to my laughter to my asking for help, someone has always been there willing to lend a hand - or tissue. Last spring my school donated over $1,000 in gift cards to Heather and our family. Upon return this year, the Mustang Mart sold "Heather t-shirts" with profits going to Leap-for-a-Cure. And it isn't over yet! Another fundraiser is September 29 for the Powder Puff game. Thank you.
Tricia - my best friend from high school - your support and shared knowledge (Alan) has been incredibly important and special to me. Alan made me feel so much better when he gave me confidence in Heather's doctor, support for San Francisco, and encouragement to ask him any questions that we may have. Just knowing that I could call him and you at any time for help has been a blessing. I can hardly wait for our next reunion :)
Kathy and Ted - you know all that you have done for Heather and for us. Without your support, we would have another problem with which to deal. I can never thank you enough for loving Heather as you do. Thank you.
Jean (one of my "Ya-Ya's") - you have almost the same passion as I have with Leap-for-a-Cure. Sometimes you push me more than I push myself. I am tired. I am drained. But then you come along with enthusiasm and new ideas. You have been my rock! Thank you.
Bob and Robyn - you know the inspiration that you give to Heather, which in turn is good for all of us. Without Bob as a role model, Heather may not have the courage she needs to fight. She knows what she must do to win, and thanks to you, she knows it is possible. How can I ever thank you enough for that? And Robyn, when you fire off all your ideas, I love it! I feel your excitement and that makes me want to work harder at getting the word out. Thank you.
To Heather's Aunt Jill and Aunt Annie - thank you for showing Heather how much you love her. Aunt Annie's continued creative cards and ideas are always special. The Angel bear is a gift of love, and we all felt it - even though Robyn could not figure out how the "membership" worked :) And Aunt Jill, you offered us laughter at a time that I thought I could cry myself out of tears. Your family pulled through and provided what we needed: an escape from reality with Rock Band, Ping-Pong, and cards. Thank you.
Mike - We love you! What else can I say? You are the love of Heather's life and together the two of you will make a future. I am so proud of your support and understanding and love for Heather. You are there when she needs you and when we need you. Thank you.
Finally, Michele and Amy - you two have given me the support I need from two wonderful daughters! You have been there for Heather the entire time, and you also find time to support me when I need a little boost. Through tears and laughter, we have made it! Dad and I cannot be happier with our children, and you two have demonstrated how a family's love can be stronger than fear. Thank you.
And to all the other people that I have not mentioned by name - Heather's cousins, aunts and uncles, and her special friends - please know we know how much you care. And all the other people in our lives who have made a difference with phone calls, cards, emails, and prayers - THANK YOU!
Heather had her first radiation therapy yesterday - Monday, Sept. 15. She was supposed to take her chemo 1 hour before, but her chemo never arrived. What I thought was a disaster yesterday is OK today. I did not think that her first day would "hit" me as it did. So when I found out the "mail order" package did not arrive, I think anything that happened after that did not really matter. I was going to cry regardless. Crying in itself is OK, but when someone cries in front of a group of students during study hall - that is . . . difficult. The harder I tried to cover it up, the more my tears "backed up." And then I was OK until a nice student said, "Are you OK?" There is hope in the future. These students were genuinely kind and concerned - or maybe just scared that I was going crazy. I prefer kind and concerned.
Anyway, Heather managed the first treatment just fine. She did not feel as claustrophobic as she thought she would in her mask, which keeps her head from moving. The mask was molded to fit her head last week. She had some X-Rays and minor adjustments - then her 10-minute radiation. While she was starting, she heard EJ from The Kat radio station in the background. Instead of music, EJ was talking about Heather and Leap-For-A-Cure. That HAS to be a good sign! We talked with her neurosurgeon - just a quick visit as he was in the area - and we were off to pick up her wigs. One wig looks great; the other we left at the store. But, every girl needs two, so Heather ordered another one just like the one she likes :)
Radiation Day 2
Today was Day 2. As I entered the area, I saw a woman who appeared lost or confused. She asked me if I was there to attend the cancer support group. I told her I was not; I was there waiting for my daughter to take her treatment. The woman said, "Will you give me a hug. I really need support right now." Without hesitation, I hugged her and she started crying. She is scared and alone. Her support group IS her support group! She was afraid that she had missed the meeting because no one was around. I went to find her help, and shortly a social worker took over. The woman still met with her group; she was just 30 minutes early :) The receptionist thanked me over and over for helping this woman. It made me so sad to know that some people really are alone in this world, no matter what. I then looked at Heather and reminded her that she will NEVER be alone!
As Heather swiped her card to enter the radiation area, a family was leaving. The elderly woman told me, "We share special moments in there." It is a "family waiting room" for those who have loved ones in radiation. I think I will miss getting to know her. This week is her husband's last week.
I know each day may or may not be different from the day before. At some point, Heather may look like the others who leave through the door. She may be sick; she may be pasty; she may not have all her hair; and she may be extremely tired. BUT - she may not! She may continue to come out smiling. She may continue to think it isn't that bad. She may continue to wonder if things will get worse. Wouldn't that be GREAT! Heather is a fighter; I can tell she is going to make it.
4 Weeks Left: September 27, 2008
So far, so good! Heather's radiation and chemo treatments have not affected her too much so far. She is beginning to be a little more tired and her scalp is beginning to itch and to feel a little "sunburned," but she is doing well. She has reported that her coordination is a little off and she may be forgetting a little more than usual, but she still feels in control and happy and hopeful. She keeps a daily journal and she records everything of importance - from medication to headaches to nausea to important information at work. She does not want anything to be forgotten. She will always have her journal to check. What more can a mom ask for at this point? Every Monday Dr. Popa checks her blood and every Friday Dr. Huang checks with her about her radiation. She is in good hands. We are going to San Francisco in mid-November to visit with Dr. Chang again. Once we see Heather's updated MRI, we will obviously know a lot more.
It seems odd to me that so little is ever shared about brain cancer. Since our family has gone through this, I have heard from so many people who are either battling with it now or who have lost a loved one to it. If this cancer is not one of the "biggies," I feel Omaha must have more than its share of people who have been affected with it. Through this website, I have heard from three people I have never met. Through our "Wear Gray for a Day" campaign, I have heard from five people who have been or are currently affected with it. And through word of mouth, I have heard of another four. I think that is A LOT considering I don't know that many people. Then I was thinking about all the people that I have not heard from or about. Too many, just too many. Why has there not been more improvements in treatments for brain cancer? The funding just isn't there! More reason to spread the word. What if there were two or three hospitals in the country that just focused on ONE type of cancer cure? And another two to three that focused only on another type of cancer. Eventually, they would all work together to find a cure for each specific type instead of a little research here and a little research there. Are all cancer cells different? Why can't there be a cure for cancer in general? I know so little.
Our fundraising efforts seem to be going well. I am impatient. I think big and sometimes have to realize that baby steps come first. But, I am so proud of what so many people have done in such a short amount of time. I am trying to wait until the end of December to see how much we have raised. As donations go to the foundation, I do not know about them. I can get that information whenever I ask for it, but I just have not done that yet. I am waiting for our three October fundraising events for sure: Pampered Chef, Monster Bash, and Old Chicago's event. Maybe then I will ask. My next effort is to start writing grants for matching funds. I found out that I have to prove we can raise money on our own before we will even be considered for a matching grant in most cases.
I talked with Jeff Daley today, and Old Chicago restaurants in Omaha are doing a fundraising on Thursday, October 30. All five locations are going to donate 100% of all cookies sales for that day to Leap-For-A-Cure! Heather worked at three of the locations in younger years, so I am thrilled that Old Chicago is going to participate in a fundraising event for brain cancer. Let's all go out to eat at Old Chicago on Thursday, October 30 - and order a cookie dessert!
Tonight Heather fell out of the hot tub - well, maybe she tripped or slipped? Although we all laughed, I am concerned about those "little" falls in her life right now. I am always asking myself if it is the radiation or just a normal off-balance fall. She has had three in one week though. At least she finds humor in them :)
We are now also putting a cream on sore spots on her head. So far she only has about two areas that drive her crazy with itching. But we put cream on those spots and then her hair is greasy. So, back to the hair scarves. Without the scarves, she looks like a cockatoo because her hair from surgery is growing back - straight up in the air!
My friend told me today about a new trial with laser that is being done at the Cleveland Clinic and University Hospital in Cleveland. So far, only one person has completed the trial; next week two more will. The laser's heat burns the cancer cells and avoids all other brain cells, so allegedly good cells are not bothered. But the trial is just starting and only with Stage IV patients. Maybe there will be some promise for the future though.
Tonight Heather and I decided she needs to show Dr. Popa her (Heather's) left eye. It is all red. We thought it may be Michele's cat - we are currently Humane Society West - but Heather has stayed away from Tuffy-Kat for two days, and it is only her left eye. I told her to keep her head elevated and to make certain her journal is up-to-date so that she does not forget to share this with Dr. Popa tomorrow. I hope we are concerned for nothing except allergies. Funny, we never ignore anything with Heather anymore. Everything could mean something. In fact, Mike has been a little sick, so Dr. Daryani told him to stay away from Heather. She moved back in with us last week until he is on the mend. Even a little cold is a BIG cold to Heather. Every time one of my students "hacks up a lung," I cringe and reach for my hand sanitizer! The other day I asked a student if he was okay because he kept coughing and coughing up phlegm. He said, "No, I have been sick for two weeks." I wish he would stay home or go to the doctor.
We were able to enjoy the wonderful weather this weekend. Heather, Mike, Jon, and I went to the Husker game Saturday night. We had a small tailgate party with Jon's dad and cousins before the game. I'm so happy Heather enjoyed her day, but she paid for it today. She slept four hours this afternoon. She really needs extra sleep now.
Thank you for reading the blog. I think it offers some therapy for me.
Mid-Treatment: October 4, 2008
This week - the middle of the road for radiation - has brought another journey to our lives: Heather losing her hair. I have always read that people just wake up one day and their hair starts falling out in clumps. Well, that's true. Heather's hair started to fall out in the shower one morning, and it hasn't stopped since. As with all her other experiences in this journey, she has handled it with grace and optimism. Her take on what she goes through is that it is temporary. She feels our world is too superficial and plastic anyway, and hair only adds to that. Besides, she hopes her hair grows back thicker :)
Seriously, she did have some tears and fear when the clumps landed on the shower floor, but her dad was there to add some comfort. She called me and said, "I want it all cut off!" We went to radiation that day and visited with another patient who has already lost her hair. She shared with us that if it all doesn't fall out, there will be strands left in spots. That grossed out Heather, and she was even more adamant to get hers cut. So, on Thursday, October 2, Heather sat in Penny's chair and said, "Cut it." Again she amazed me. Penny offered a private room, but Heather wondered why. With a cute twist, she reminded us that she has nothing to hide. The cut is short, but stylish and cute.
Every day she loses more hair and is now wearing head scarves in public. Jon always uses his thinning (bald) spot on the top of his head as evidence that his daughters have stressed him too much; now Heather uses her bald spot as proof that her father has given her too much stress! She named her spot DAD.
Sometimes Heather will lie on the couch resting her head on my lap as I hold her and rub her sore head. She isn't much for melodramatics, but she still needs her mom sometimes. I tell her that I remember her as a beautiful bald baby and she is now a beautiful semi-bald woman and I couldn't love her any more than I do. There really is something about a parent's love that cannot be defined.
We met with the radiation oncologist on Friday, and he and his nurse think Heather is doing very well. She has begun taking steroids to relieve some swelling due to the radiation but may taper a bit as early as next week. I don't like her on the medication, so I can hardly wait until she can get off. The swelling decision was made because of some uncharacteristic coordination problems - falling and tripping in the last week. Michele tried to convince the radiation oncologist that Heather has always been clumsy; Heather and I think Michele is goofy. I'm certain he thinks we are all nuts.
And, we are still fortunate to have time for play. So, off to Thunder Alley on Saturday night to watch NU football with friends. By halftime the NU game was a dud and we had eaten all our stomachs could hold, so Heather thought ending the night with our traditional fierce laser-tag competition - girls against the boys - would be appropriate. And, the girls finally won! No matter how many times we play, we always laugh ourselves silly! And laughter is wonderful medicine.
Ready, Set, Shave: October 14, 2008
It's gone - all gone. Heather's patience with her hair, rather the lack of, drove her to have me shave her head. If I thought Jon would be reading this, I would never tell this story. We shaved her head with Jon's electric razor. We don't have clippers, and Heather did not want to wait another minute. It's a good thing that Heather covers her head with hats and scarves when in public. How can a shaved head have divots?
She is almost finished with her 5th week of radiation and chemo. She remains in good spirits, good health, and relatively good moods. She has been told that her 5th and 6th weeks of radiation will probably be her worst for being tired; however, so far so good. She may be dragging a little, but not enough to interfere with work or life in general.
I may have spoken a little too early. I started the entry Tuesday night while at parent / teacher conferences. When I came home, Heather was not feeling well. She said her chest felt heavy, her head hurt a little, she had begun to bruise, and she went to bed. Wednesday she began to feel worse and left work early to come home and nap. By Wednesday night, she was weepy with discomfort. Thursday, the doctor's office scheduled an immediate CT-scan - possible blood clot. Good news - no blood clot. Blood tests will hopefully give us a clue. Tonight, she feels better.
Next week is Heather's last week of chemotherapy and radiation. Yeah! We head to San Francisco November 12 for a follow-up to her six-week treatment. I am so looking forward to hearing that the tumor has shrunk!
When Heather was lying in bed feeling ill, I saw her little hairless head peeping from the covers. I held her, rubbed her head, and told her how much I love her. As I watched my little girl become scared for the first time throughout this horrible ordeal, my tears welled, and my composure melted. We have been so lucky so far. She has tolerated everything so well; I am completely selfish now. I never want her to suffer!
I know when she begins her new chemotherapy regime beginning of December, it will be an all new "game." The Temodar will be doubled from what she takes now. I know it will be a miracle if she does not get sick or have bad days. In fact, I am expecting it. I just don't want to think about it.
Pre-Monster Bash: October 25, 2008
Tuesday, October 28, is a day we are all looking forward to. We have worked to promote the evening and we have a good feeling about its success. Heather is getting so excited, so that also makes me happy. She and I spent the afternoon buying balloons, table clothes, raffle tickets, etc. for the event. We are so ready . . .
Last week Heather was told she has Monday, Tuesday, and Wednesday radiation treatments left. We had planned that Friday would be her last day, but she is doing "boost" right now, and that requires her to have three more days of it. We will celebrate her first radiation free day at Old Chicago and buying cookies for a cure! (Thursday, October 30)
So far, she has tolerated everything so well. She is no longer sick; she went back on her steroids and that took care of the headaches and body aches. However, Dr. Popa told her to try to get off them if she can as the steroids will affect her stomach. She is trying.
Sometimes I look at her and forget she is sick because she is doing so well. Her coloring is good; her health is good; her blood work is good; and her attitude is good. She IS going to beat this.
When she is finished next Wednesday, she is free of all medical appointments until her Wednesday, November 12 MRI in San Francisco. As I have said before, I can hardly wait to get good news. Then, we will be off to Hawaii for a week and then she starts the year-long chemotherapy (Temador) at much higher doses than she takes now. But, we are still hopeful she will tolerate it all well. We are ready to handle anything that happens - good or bad - and move forward. As Heather always says, "It's temporary."
Heather has been such an inspiration to me. Her attitude and decision to take charge of her situation has been a lesson for me. I learn from her every day. I try so hard NOT to dwell on unpleasantness, negative situations, and difficult experiences. Life is not perfect, and we can only deal with what is given to us. I have always told my children that it isn't WHAT happens; it is HOW we react to WHAT happens that makes us who we are. If that is as true as I believe, Heather is going to be a role model for so many people. She has handed this situation with such grace and dignity. I know I have said it before, but I cannot ignore this truth.
Next time I will devote time to Leap-for-a-Cure and the successes of our efforts. That is something else for which I am proud.
End of Radiation Road: October 30, 2008
33 rounds; 33 trips; 33 visits. It's over! For as happy as Heather and all of us are to have radiation completed, the last day left us a little sad. Saying good-bye to the technicians, saying good-bye to the other patients - it's just a little sad. You visit with people every day and become very interested in their lives, their journey, their personal battle. We wish everyone the best of luck in their fight. But we will never really know how they do.
Heather is doing well. She had her first full day of work in over 6 weeks today, so she is tired. She is so grateful to her employers for being understanding and supportive. Because of their support, Heather did not suffer extra stress about her job. Currently, her head is tender, much like a sunburn, so she does not like to wear anything on her head. Getting ready in 10 minutes is a plus as well. And, she has a great shaped head, so she looks pretty good bald. However, she might get cold this winter :)
I said in my last entry that I would talk about some of our fundraising events. First, after our "Wear Gray for a Day" event in September, Reagan Elementary School had a Penny War among some of its classes. Students also sold gray wristbands. Both ideas raised about $1,200! Because of Reagan Elementary, my department decided to have a Penny War among our English classes during homecoming week. Our students raised $8,200! Then our DECA students raised another $1,000 during the Powder Puff game. Student Council and a "Miracle Minute" added some more. Together, Millard North High School raised $10,500 for Leap-For-A-Cure!
Monster Bash was so fun! We think about 200 people attended and I met so many new people -some who have a connection to brain cancer and some who just want to support our cause. We are already thinking about next year's bash :) We have some ideas to make the event better as well as what we want to keep the same. I know - I just need to relax a little. I only have 12 months! Thunder Alley hosted the event and I cannot thank Ted and Kathy enough for all their efforts to make it a success. In addition, the classic rock band "Charlie in the Box" played for the event and donated the time. Everyone helped to make this a special awareness event.
Today is Old Chicago Restaurants' "Cookies for a Cure" day. Old Chicago has been a wonderful support for our cause. First, three of the restaurants each donated 8 pizzas to reward the winning teacher's classes for the Penny War at Millard North. Then the restaurants planned for the "Cookies for a Cure" fundraiser. I'm proud to be involved with this fine organization! Plus, I bought a lot of delicious cookies :)
The next event is November 15 at Mid-America Center. The Lancer Hockey team has purchased special brain cancer jerseys. After the game, the jerseys will be auctioned, and all proceeds will go to Leap-For-A-Cure. Another fun evening is approaching. . .
We have been so fortunate to have so many people supporting Leap-For-A-Cure. From students and staff at Reagan Elementary and Millard North High School, to Thunder Alley, to Old Chicago, to Lancer Hockey - we are so lucky to be surrounded by so many wonderful people.
I will continue to fight for the cause no matter how long it takes to find a cure. It has been too long without new steps, and I am getting impatient. I met so many good people the other night, and each one deserves to live his / her life to the fullest. Each one has a story. Each one has a fight. Our story and our fight is no different. However, this story has hit home - my home. We are no longer someone else.
From SF to Hawaii: November 13, 2008
We just returned from San Francisco, and we feel the news is good - if "status quo" is good. Heather's tumor has not grown, so that is good. From what we were told, the tumor never "shrinks"; the cells just die. When the cells begin to grow again, the Temador attacks / kills them. The trick seems to be to make certain the Temador is taken when the cells are starting to grow. I think it is time for more research. We always learn so much with each visit! We will return to San Francisco the end of January - and I am certain we will return with more answers, but with more questions as well.
Heather seems to be doing well. She is happy with "status quo" - as we all are. For some reason this trip was really bothering her. She had a few bad days thinking about the trip; I think because she heard bad news the last time we were there maybe she was fearful she would hear bad news again. But, with a sigh of relief, we went to lunch to celebrate with my sister Jill and my best friend from high school, Tricia.
Saturday (11/15) the Omaha Lancer Hockey Organization held a fundraiser for brain cancer. The players wore special "brain cancer" jerseys designed by Bill Nervig (Lancer's trainer). Each jersey was auctioned off during the game. These jerseys were really "sweet." Obviously, I have never seen a jersey designed for brain cancer! I wonder if these are the first ones made for it? Unfortunately, the team lost in a shoot-out, so that was the only downside to the benefit. Once again, we have been amazed at the support the community has given to our cause.
Heather's cousin Aaron is doing great work in Lincoln promoting Leap-for-a-Cure. I hope to have more news on his efforts soon.
I don't think there will be much to write about until after our Hawaii trip. Heather is so excited about the trip, which we think is going to be special before she starts her chemotherapy. We learned that she could be on Temador for 2 - 3 years if she tolerates it. Wow, that is a long time! Of course, we think she will handle it well as she handled radiation and low-dose chemo very well. Our fingers are once again crossed for her health, happiness, and safety.
From Hawaii to Reality: Dec. 4, 2008
Hawaii was a special treat for our family! (Although we missed Amy, we will make certain she is able to join us on our next vacation.) Heather was able to relax and sleep and sleep and sleep. The radiation finally caught up with her, and she remains very tired. Dr. Popa said today that Heather's reaction to the radiation is normal even though it is a bit "later" than some peoples. She was not tired during the last two weeks of radiation as many people are; but about a week after it, she became very tired and still sleeps a lot. Dr. Popa also said that since Heather tolerated the low-dose Temador with her radiation, she feels Heather will also tolerate the higher dose of Temador. Heather's dose of Temador during radiation was 180, but she will begin her regime with 285 for the first 5 days and then go to 380 (I think). She will take her Temador for 5 days and be off for 23 days; then it starts over so it is a 28-day cycle. Tiredness is the most common side effect along with nausea. However, Heather will take anti-nausea medication an hour before taking Temador and will take the Temador about 1 hour before bed. Hopefully, she can sleep through any sickness she may encounter. She will have her blood checked weekly for any signs of other side effects. Dr. Popa also reinforced the idea that Heather could be on Temador for over 3 years if she tolerates it. Along with Temador, Heather must once again begin her anti-acid, anti-nausea, and antibiotics and continue her vitamins. She has been so happy not taking all the medications throughout the day; now she realizes it could be for another 3 or more years if all goes well - sounds ironic to me. But, her attitude continues to be "whatever it takes" to become cancer free!
We are planning our next San Francisco trip for January. UCSF Medical Center has a different MRI machine - one that Omaha does not have. If all goes well, we may not return to San Francisco for 4 months after January. Dr. Popa is perfectly OK with us going to San Francisco, and that makes us all feel more comfortable. I am feeling more and more relaxed with Dr. Popa and more and more confident with her as Heather's oncologist. It isn't easy "turning over" your child to someone else - even a doctor. But I have no choice, so I must find confidence in the person who is treating her. I cannot explain how important that is - it has to be a feeling of belief and hope.
So far, Heather is back at work full-time. She is grateful to her employers (Ted and Kathy) and all the people she works with who are supportive of her absences from work. She hopes that she does not miss more work because of her Temador regime and will only have to miss work because of her San Francisco trips.
So, now that we have returned to cold and snow, we reflect on our wonderful time in Hawaii as a family having fun in the sun. We were able to relax, read, share, sleep, and escape our reality. Our daily routines have returned and worrying and thinking about Heather is a part of that. As hard as I try, I very rarely skip a minute without Heather entering my mind. But, because I always hold her close to my heart and mind, I am always researching for new approaches to brain cancer. I continue to learn and continue to ask questions. I will NEVER give up hope because I know that someday there will be a cure and that Heather will be a recipient of that cure!
Downside of Chemo Treatment: Dec. 13, 2008
Heather has just finished her first 5 days of Temador; and although it could have been worse, it was no picnic for her. She takes the pills at night before bed to help avoid being sick, but she was sick all night her first night anyway. The following day (Tuesday) she slept off and on between being sick. But, she had to take the pills again at night. She came to our house on Tuesday so that she was here in case she got so sick again. Tuesday night brought another night of being sick and achy. By Wednesday, she was miserable, so off to Dr. Popa's we went. We found out that she was dehydrated - even though she drinks water nonstop. In addition, she was low on potassium. So, she had a 2-hour saline with potassium and more anti-nausea medication infusion. I learned what a dehydrated tongue looks like as well as veins. We are all rookies at this rodeo, and we know we have a lot to learn.
Heather returned to work on Thursday, but she continued to feel very tired. Friday was the same. She slept from Friday night at 9:00 until Saturday at noon. She was up for about 1 hour, and then she slept another 3-4 hours. She just needs to sleep and sleep and sleep. And, she is not eating. She ate about 2 bites of applesauce and a few sips of soup today. She is not eating because she is not hungry and feels sick if she does. She has begun to lose weight, but I think once the initial chemo has run its course, she might feel better for a couple of weeks before it all starts again. After her 23 days off, her next treatment will be 390 mg instead of 285. In addition to her chemo treatment reactions, her Raynaud'sphenomenon is driving her crazy! Her feet and hands are itching, and last night Heather was miserable with it. The Raynaud’s usually does bother her more this time of year, but on top of everything else, it is one more annoying issue.
After her next round, we will be headed to San Francisco for another MRI. We hope to learn more between now and then so that we have more questions in our quest for answers - answers that will someday help Heather.
Our next big fundraiser is going to be February 6 and 7 at the UNO hockey games. The players will wear special jerseys for brain cancer and those will be auctioned during the game on Saturday. In addition, during January and February 6 and 7, we will raise money with people putting money in players and coaches' jars to see who raises the most money. That person will have his head shaved at center ice after the game. More details will emerge soon, but I think it will be a fun event.
I don't know if I will write again before the holidays, so I wish you all a happy holiday season!
Whew! January 12, 2009
Heather has just finished her second month of Temador. YEAH for her not being sick! She has been tired and sleeping, but I don't think she has slept as much as last month. However, this time she had fluid - along with anti-nausea, electrolytes, anti-stress, and white blood cell "stuff"-infusions Day 1 and Day 3. Originally, she was supposed to begin on Monday, but Dr. Popa felt Heather needed another MRI because of some concerns with Heather's left side. The MRI revealed some edema around the brain. In addition, Dr. Popa wanted Dr. Long to view the MRI and compare it to the previous one from San Francisco. Because of her left side "issues," Heather is doing physical therapy and occupational therapy every week. Dr. Long feels what may look like tumor growth is actually dead cells from the radiation - necrosis, I think. We will learn more when we return to San Francisco on January 20.
Although Heather has handled this round much better, she was too tired to attend the UNO Maverick Hockey / Leap-For-A-Cure event this weekend; but hopefully she will be able to attend in two weeks for the second of three weekends. Speaking of the weekend, LFAC has teamed with UNO hockey to promote brain cancer awareness. I am so excited about this event. Mike Kemp, head coach, has set a $30,000 goal. If the goal is met, all players and coaches will shave their heads Center Ice after the February 7 game. Although it sounds like a lot - and it is - Omaha seems to support good causes, and this is a good cause. This fundraiser is a wonderful opportunity for Brain Cancer Awareness and for UNO Maverick Hockey to get involved. The players are now going to visit Methodist Estabrook Cancer Center on Monday, January 19. Community work is vital for connectedness.
I just received notice today that the National Cancer Institute has made a preliminary decision to slash funding by 50% for the Adult Brain Tumor Consortium. That means research will lose funding, Trials will be cut, and brain cancer patients will suffer. Brain cancer patients and family rely on the hope of research; without research, treatment cannot advance. I think it is time for a check and balance on all funding - for everything! I don't care about "bridges to nowhere," nor do I care about flies mating. I just want a cure for cancer - ALL cancers!
As I mentioned earlier, I am so excited about UNO Maverick Hockey, Methodist Estabrook Cancer Center, and Leap-for-a-Cure's teaming together in the effort to fight brain cancer. Planning has been in the works for months, and now it is here. The first of three weekends is over, but I think the event will only get better. Some special people who have supported and organized and helped make it work: Mike Kemp, Michele Roberts, Shirley Fey, Robyn Sitzman, Jean Koerten, and Ryanne Hastings. Of course, others have helped, but these people have made the commitment as a committee to work extra hard and to share their talents. THANK YOU!
It seems as if I am always eager to go to San Francisco as there is always something new to learn. As always, I will have my list of questions and will keep my fingers crossed for GOOD news. Since 2008 is over, I am believing in 2009!
I Don’t Know: January 25, 2009
So often I hear myself saying, "I don't know." I try very hard to be informed and to look up everything I may not know or understand about Heather's situation. However, even after asking questions and researching everything that I know to ask and research, I still say, "I don't know" too often for my liking.
We went to San Francisco for Heather's January 20 appointment. Because we did not think about bringing her January 5 MRI disc with us, Dr. Chang could not give us much information. Heather's brain was quite swollen then (January 5) and she went on her steroids, which did reduce the swelling a ton. But Dr. Chang could not see the comparison without the disc. She told us there was obviously "something there" that was not on the November MRI taken in San Francisco. But, knowing that Heather's brain swelling symptoms had diminished and her strength had returned to her left side, Dr. Chang felt comfortable that the steroids were working. But, the "something" was still there. So, upon our return to Omaha on Wednesday, we immediately "one-day" delivered the disc to UCSF Medical Center in hopes Dr. Chang would be able to present it to her Thursday morning tumor board meeting. Of course, our $60 "one-day" FedEx delivery wound up being a two-day delivery, so we need to wait until next Thursday.
Basically, Dr. Chang called and told us that she wants to see Heather the week of February 23 if the tumor board agrees the steroids are working and the "something" on the MR is from swelling. If the tumor board feels it might be something other than swelling, Dr. Chang will want to start another type of treatment before Heather's scheduled Temador treatment in two weeks. Heather also has some "leakage"; when I asked if that was normal and just part of the radiation, Dr. Chang said leakage is "nonspecific." I have tried to research this, but so far have not had much success. However, Dr. Chang reaffirmed that the swelling is from the radiation.
Because I see Heather almost daily and talk with her several times a day, I believe all is good. I refuse to think we have anything to worry about at this time; however, Heather is feeling a bit stressed right now. I think she believes if all was well, she would not have to return to San Francisco until the end of March. Because Dr. Chang wants to see her within a month, Heather is a little uncomfortable about it.
Heather's hair is beginning to grow in places, and only the top of her head remains hair-follicle free. I think she is excited about her hair starting to show some growth. She will, however, continue to shave her head as long as the top of her head is bald.
One somewhat funny situation: When Heather started her steroids, she started eating non-stop. We all knew the steroids would do that, but she was really eating a lot! She also had tons of energy, and needed little sleep, which is NOT normal for Heather. Well, come to find out, she was accidentally taking double dosage for 10 days! I think even though Heather was not happy with herself for making such a mistake, she was happy to know that she won't be uncontrollably eating as much.
As always, we continue our prayers and efforts in our fight against brain cancer! Please join the fight.
Just A Quick Update: Feb. 3, 2009
We are headed to San Francisco in February. The radiologist, Dr. Chang, and the tumor board feel that the "something" could be new tumor growth, or active cancer cells. Thank goodness we are on top of the situation so little time is being lost. Heather will start her chemo tomorrow night (2/3) for 5 days, then on Feb. 25 she will have an MRI/MRSpectroscopy, which will help determine what the "something" and "leakage" is. Even though the pathology report states "consistent with new tumor growth," the report could be wrong. We will all feel better once we visit with Dr. Chang.
Heather's steroids have certainly taken a liking to her. She gained 12.5 pounds in one week! When she told Dr. Popa that her knees and ankles ache, Heather was expecting to hear, "That's a side-effect from steroids." Instead, Heather heard, "That's because you have gained so much weight"! They both got a chuckle from that.
Woo-Hoo! Feb. 6, 2009
The UNO/LFAC event was very successful! We raised about $45,000 for Methodist Estabrook Cancer Center. I am so grateful for all the support from friends and businesses and the community. Without all the volunteer time and every single dollar donated, we could not have reached and exceeded Head Coach Mike Kemp's $30,000 goal.
Michele - without you, this event would not have been. We know your plate is full, but you still found time to make certain everything pulled together. We love you and thank you for always being you!
Amy - although you were unable to attend, your constant words of support helped us feel we were always doing well. You have always been very positive with our cause and have celebrated our successes. Thank you!
Good News Wednesday: Feb. 28, 2009
Our San Francisco trip left smiles on our faces and strawberry margaritas in our tummies! What looked like new tumor growth and active cancer cells was actually residual swelling from the radiation. Heather's MRI displayed the swelling had all but disappeared, so no new tumor growth. The MRS is a good baseline for her next visit, which does not happen for two months - April 21 to be exact.
We had all been on pins-and-needles for the last month after being told what Heather's MRI suggested. I think we all prepared ourselves for bad news and had been thinking about what the next step forward would be. We did not talk about it as much as think about it. Because only positive thoughts enter into our lives, we could not allow our fears to take control. But when we all sat in Dr. Chang's office on Wednesday, our legs were shaking, our smiles at bit forced. Then Dr. Chang wheeled around in her chair with her smile, and I think we knew, but just had to hear the words: Your MRI looks good.
So what does this mean? It means Heather still has her tumor, but it does not appear to be growing. That may not sound like great news, but it is. Heather will always have this stupid tumor and it will someday start to grow again. The cancer cells will become active again; however, if she is on her Temador and it starts to grow, the Temador is designed to attack it. If the tumor grows while she is on Temador, the treatment will be changed. However, so far so good on Temador. And the radiation is designed to work for several months after the treatment ended. So, the swelling was most likely from the radiation (normal) and the radiation could still be killing off some of the tumor, creating dead cells.
She is finally being weaned from her steroids. Once again, we have found some humor in the face of something not in our control. Heather has led the way to acceptance, and I guess humor is one way to deal with it. Her puffy face and extra weight gain from her high dosage will soon disappear - well maybe in about three months.
Of all the things that Heather has gone through, the puffy face - and maybe the mustache that came with it - has bothered her the most. Mike, her boyfriend of 2 - 1/2 years, has been by her side and has helped to let her know she is beautiful know matter what. Every time I look at her, I see beauty, but I am her mother.
Heather's blood work is fabulous. She has that checked every week. All her doctors - in fact all the medical team treating her - is so proud of her attitude and her inner strength. She has emerged as a role model for anyone who is facing a life-threatening disease. She continues to view this as a bump - OK, a mountain - in the road of life, but she is going to drive over it to see what lies ahead. We remain incredibly proud of her and thankful that she is our daughter.
Day by Day: March 18, 2009
Sometimes the days seem to slip by smoothly and I forget to update. When things go well, we keep busy and move forward - almost sidelining our situation. However, one little disruption, and everything comes to a halt - only to keep us on our toes.
Slowly, Heather has been weaning from her steroids. All has been going well, including her swollen face slimming a bit. She was down to 1 mg a day when she became light-headed and vision in her right eye was "weird" (her description, not mine). Dr. Popa increased her steroids to 2 mg, which doesn't seem like much. But tonight, stomach discomfort began, much like what Heather experienced in January. Back then she had a CT scan to make certain she did not have a blood clot. She recovered with some medication, so we are hoping the discomfort once again goes away and she can continue her steroid weaning.
Heather continues her positive attitude, which is remarkable and a model for all. She keeps busy with work and her house and has even shown interest in making cards / crafts with me.
It is difficult to believe that the one-year mark of Heather's diagnosis is just weeks away. What a year we have had, but we have survived and believe 2009 is the year for only GOOD NEWS!!
Happy Easter / Passover: April 11, 2009
Today is Easter. Even though my children are all adults, I still do the Easter baskets. I just finished; it is after midnight; and I am reflecting on many things right now. It is a good time to write.
Heather did not feel well this round of chemo. She was sick with a respiratory infection during her chemo week, so she had to wait a few days. She received her fluids three times instead of the usual two, but she still was nauseous and very tired. I was able to go with her to see Dr. Popa on Friday, and Heather's white cell count is down. We are hoping it is from the chemo and respiratory issues. She seems to feel OK now, so we are crossing our fingers that she beats this, and her cell count goes up by next Friday.
She and I are headed to San Francisco again on Sunday, April 19 for the Tuesday, April 21 appointment. Since we always include two travel days along with her UCSF appointments, we are always gone for at least three days. So, we are leaving on Sunday so that we can have another "Fun-day Monday" as we had three months ago. Last time was Santa Cruz for the day; it will be difficult to beat.
Heather's hair is growing back. If you remember, she lost her hair from the radiation, not the chemo. She still has a bald spot on the very top of her head, but the fuzz is there. I asked her today if she wanted to shave her head one more time, but she said no. I think she is planning on the top to fill in sooner than later. I suggested spray paint.
She is currently off all steroids - 5 days to be exact. Now we are closely monitoring any changes in her coordination, her eye sight, etc. The symptoms that lead to the steroids proved to be from brain swelling, but we are choosing to believe that issue has been handled and is over.
I think we will feel better - as always - once we hear the words "status quo" in San Francisco. I have quit hoping for the word "shrinking" because I have accepted that it won't happen. But, "no new growth" is good news for us. There are some new treatments on the horizon, and we plan for Heather to benefit from them.
As this season of renewal begins, I pray for new hope and new beginnings not only for my daughter, but also for all who suffer from illness, fear, and despair. I pray for belief in what may seem impossible, for we all know that miracles do happen.
Status Quo: April 24, 2009
Another UCSF Medical Center trip with "status quo" results. I've come to realize that starting about the week before our SF trip, I start feeling anxious and weepy. I've always heard that people's lives flash before their eyes in life-threatening situations. My life with my children is relived with details nightly, especially the week prior to our trip. I just never want that life to be taken from us.
Heather's two-hour stint in the MRI machine about drove her crazy. Her regular MRIs take about 45 minutes, but adding an MRS adds about another 45 minutes. This trip the machine broke, and Heather had to add another 30 minutes. As most people know, patients must lie perfectly still in an MRI machine. Yuck! She wanted to move, scratch, twitch - but she couldn't if she wanted to get out.
Off to Dr. Chang's office to anxiously await the news of the MRI. Although Dr. Chang did not greet us with a smile as she has done in the past, she did tell us that the MRI suggests no real change. She thinks Heather is sensitive to radiation; therefore, the slight change in the MRI is probably due to radiation effects. The MRS results take a few days.
Upon our return home, Dr. Chang called to tell us that the radiologist also sees some slight changes, but both are believing it is from the radiation for now. So, there will be no changes in medication yet. Dr. Chang will see Heather again on June 5. Every time we hear the word "change," I am worried / concerned. CHANGE is not a good word for us, so until Dr. Chang is 100% confident that this slight change is from radiation, I will continue to stress a little.
But we also had some GREAT hope cross our path. As we were leaving Dr. Chang's office, we wound up in the elevator with a man and his wife. The wife said to Heather, "brain tumor?" Heather nodded, I said brain cancer, and the husband removed his hat to show us his surgical scars. But, his surgery was almost 15 years ago! Diagnosed with GBM, he was given 18 months to live - but 14 years and 7 months later, he is fine and still working as a software engineer. This family has added more hope to our situation. They too have faced this diagnosis with optimism and humor - much like we have. I believe we were destined to meet this wonderful couple. My sister Jill and I quickly gave them each a Leap-for-a-Cure wristband and a heaping helping of THANK YOU and STAY STRONG. Michael logged on to our website and left a quick message on this blog. I am so happy to have met some new hope and people on our journey.
As I end this entry, I keep thinking of all the wonderful people I have met through LFAC. Some day I will have to sit down and figure it all out, but it seems overwhelming to me right now. I struggle with always being tired - maybe a sympathy feeling for Heather? She is always tired because of her medications.
I am confident that the MRS will be fine, so hope that there will not be a new entry soon. We always send our blessings to all who are currently battling this disease and to all who have lost loved ones because of it. Research is so close; I believe better treatments and a cure are on the horizon.
Spirit of Philanthropy: May 15, 2009
On April 28, 2009, Leap-For-A-Cure was honored at the annual "Friends of the Foundation" event. At first, I was not certain what it was all about, but the more I learned, the greater my appreciation.
So many people are deserving of such awards, and in our first year of fundraising, we were one of three who were honored. As I looked around the room, the magnitude of the event finally reached its peak. All I can say is "WOW!" Soon the DVD will be downloaded to our website.
Heather is doing well. She finished her chemo and has been off for two weeks. Her white cell count is down, so she had to have another Neurpogen shot, and Heather HATES shots! She is tired all the time, but she still functions in a daily routine for about two weeks a month. During her chemo (5 days), she is exhausted and sleeps about 18 hours or more a day. Then she remains tired for about 10 days, begins to perk up for about 7 days, and then is good for about 6 days when her chemo starts over again.
One minor concern is that Heather is starting to have some headaches, but the oncologist thinks they are from sinus issues, not from brain cancer. Her next MRI is in about 3 weeks, so that is reassuring.
We head to SF in early June for a fun-day Thursday before the Friday of medical appointments. The trip is short as we return on Saturday. Our trips have become routine, so our biggest job is deciding what to do and where to go the day before the appointment. We are currently in our planning stages for this next visit. Michele is going to join us as well.
My friend Robyn and I are in the beginning stages of planning a "Bike for Brain Cancer" for the 2010 fall. We THINK we understand the amount of work behind it, but once again, we are probably naive, which in our case is good. I will have to keep you posted on this endeavor!
Thank you to the faithful who read about Heather's journey. I still feel it is part therapy for me to share my thoughts and ideas. I also pray that this blog continues for YEARS and YEARS to come because I won't stop until Heather is cured.
Blessed Again: June 7, 2009
Our trip to UCSF Medical Center could not have been better - which is relative, I know. Dr. Chang told us that Heather's tumor does not appear to have changed. In addition, the enhanced area around the tumor seems to be smaller than two months ago. With that said, there is always caution involved; however, we are VERY pleased and happy with that information.
Another good piece of information: Heather has only six months of chemo left. We were told by another doctor that some people remain on Temador for 4 - 5 years if their body can handle it. Somehow, the conversation lead us to believe that was the goal for Heather. Anyway, Dr. Chang told us that Heather is being treated aggressively, so we will hopefully be able to remain on Temador for one year if her body tolerates it. She has completed 6 of the 12 months. She will also continue to see Dr. Chang every two months. After she is off Temador for two months, she will again see Dr. Chang in two months. Then, if all goes well, Heather will start seeing Dr. Chang every three months.
Now, what does the future hold? Heather's type of brain cancer will grow again one day. However, as I wrote and told Casey William (a young MWHS graduate who now lives in LA and has just been diagnosed with glioblastoma multiforme) last night, that day does not have to be soon! We believe that new successful treatments are just around the corner. We believe Heather will beat this. We believe it is brain cancer's turn for a cure!
As I read Casey's blog, I became motivated once again to spread the word about brain cancer awareness. He too is asking that we spread the need for awareness. I feel LFAC has that mission covered, so we better get going again.
As always, thank you to those who faithfully read about Heather's Journey. I am going to start closing each entry with some brain cancer information: Gliomas arise from the glial, or supportive, cells in the brain. There are different types of gliomas. Astrocytomas are gliomas arising from “star-shaped” cells called astrocytes. Oligodendrogliomas arise from “fried-egg shaped” cells called oligodendrocytes. Ependymomas arise from “corn-kernel shaped” cells called ependymal cells. When the specific tumor diagnosis is made by the pathologist, the tumor is also “graded.” This number grade is based on how normal – or abnormal – the tumor cells appear when examined under a microscope. Grade I tumor cells look slightly unusual when compared to normal brain tissue cells. On the other end of the scale, grade IV tumor cells appear to be very abnormal. In this four tier system, grade I tumors are called “benign,” grade II tumors are called “low-grade,” grade III (or anaplastic) and grade IV (or glioblastoma) tumors are called “high grade” tumors.
Heather’s Turn: June 18, 2009
Oh, the lessons we learn in life! As many already know, Heather's place of employment closed its doors on Monday, June 8. The people who have been so supportive, so flexible, so everything - Ted and Kathy Baer - could not keep the doors open. Heather felt - and still feels - so sorry for them. They are the hardest working people she knows, other than Bob Sitzman (who will be a part of this in a bit). I think Heather felt as bad for Ted and Kathy as she did for herself not having a job - and of course, INSURANCE! OK - panic for a few days until we found some insurance that she cannot afford, but mom and dad can. Because the doors closed and the business is no longer, COBRA was not an option. Now, Heather is pounding the streets - well, sort of - to find another job. She has had two interviews for the same position and will know next Tuesday if we can celebrate. Otherwise, there has been little to no activity. YIKES.
But, once again, we look at this situation as just another curve ball. Life is filled with them and it is how we react to those balls that make us who we are. Laughter, togetherness, commitment, prayer - they all work wonders, especially in times of need. How does this make it "Heather's Turn"? Jon's best friend in the world and our girls' "second dad" - Bob Sitzman - is going to go through his cancer battle again. He survived mantle cell lymphoma treatment - a chemo cocktail and bone marrow transplant almost 5 years ago. But today, he received the diagnosis that it has returned in his stomach. Bob and Robyn have been there for us and for Heather every step in our journey, much like we were there in Bob's last journey. Bob gave Heather the courage to fight her cancer and the support of knowledge about treatment. It is now Heather's turn to support Bob again, but this time she knows so much more than she did before. He has been her mentor; now she must show him what she has learned from him. Their bond is strong.
Jon and I know so much more this time around as well. Where we may have fallen short last time, we will not fall this time. Morning - noon - night: we will be there for Bob and Robyn!
As Heather begins her next round of chemo on Wednesday, she and Bob will be facing it together. As we pray for Heather's success, we also pray for Bob's. Both of these people deserve to share their special gifts with the world for many years to come.
Now, for some brain cancer information: Gliomas arise from the "gluey," or supportive tissue of the brain. There are several different types of gliomas. The type of glioma is determined by the cells that give rise to the tumor. Astrocytoma, oligodendroglioma, glioblastoma, oligoastrocytoma are all examples of gliomas. Glioblastoma multiforme, anaplastic astrocytoma, and higher grade oligodendrogliomas are referred to as "high grade gliomas."
Good News is Sometimes Relative: July 3, 2009
Heather finished her June chemo, and she actually handled it quite well. Her white blood cell count was a bit low again, so another shot. The shots make her bones ache, so her back suffered a bit. However, it is now Friday - 5 days from last chemo pill and 4 days from last shot. She seems to have managed both, but she is tired (slept until 11:00 this morning!).
Her left side continues to be a bit weaker - a bit less coordinated? - than her right side. As she and I were walking the other night, her dog Sky started running from firework noises. Heather tried to run - OK, it was funny in a sick way - but she looked something like the Hunchback of Norte Dame. Thank goodness she kept it all under control!
Her good news is that she got a job! She begins the paperwork on Monday, July 6 with training to follow. I know she is excited about where she will be working, but the pay is low. So, she has started free-lancing and seems to enjoy it so far. We will see.
Our dear friend Bob, whose situation was noted in my last entry, finally received his updated cancer information. Again, good news is relative. His lymphoma is in his stomach and right kidney. Yes, it could be worse; for that we are all grateful. However, it could be better; for that we are sad. Our entire "clan" will be there supporting Bob and Robyn.
As July 4 approaches tomorrow, we celebrate our independence and once again thank all past, present, and future military personnel who protect it.
Brain Cancer Information: Brain tumors are unique because they occur in the skull -- a confined space with rigid walls. A brain tumor takes up space normally allocated to the brain. As the tumor continues to grow, it pushes aside or compresses the brain. This can cause a buildup of pressure in the skull that leads to symptoms such as headaches, seizures and strokes. Brain tumor treatment is designed to eliminate the tumor or reduce tumor size, thus allowing the surrounding brain to resume its normal functions.
July 24, 2009
On August 5, Heather heads to San Francisco again for another appointment with Dr. Chang. As always, now is the time that I start to think too much about it - this time even more. For the first time, I won't be going with Heather. And, it is already driving me crazy. However, Jon will be with her the entire time, so she will be in good hands, but I want to be there too. I don't feel I can miss the first two days of school without getting far behind before we even start, so I opted out this trip.
Heather's white cell count was low again; in fact, the lowest for her yet. But the nupergen shots seem to work so far, so the chemo can continue. Her red count is also down, but that just means she will sleep more. Today she had a problem with her infusion - arm swelling from vein popping - so she was a sad sack for a while. But, the trooper that she is - off to work after a quick recuperation at the oncology infusion site.
Speaking of off to work, she has been in training for about two weeks now. I think she will be "cut loose" soon to tackle it on her own. The best part of this job? She works with the two doctors who I continue to praise for saving her life: Dr. Denman and Dr. Daryani.
While it is sometimes easy to slip into a routine, we are always reminded of the fight so many people are battling every day. Heather is one of millions who have a life-threatening disease, and one of thousands who is battling brain cancer. From young to old, cancer of all types attacks its victims. Brain cancer has had few new treatment developments in over a decade, so it is "our" turn to see some new advancements in diagnosis and treatment.
As for LFAC, we are in the beginning stages of our 2009 - 2010 fundraising efforts. WEAR GRAY FOR A DAY is September 18. Anyone wanting a sticker to wear for the day, please contact me (email@example.com or firstname.lastname@example.org). We will send the sticker and information to anyone who is interested in participating. Monster Bash is being planned as well. Soon, more information will be posted on the events link. Another UNO Hockey event is in the works - who can we get to shave his / her head????? The car show crashed this year, but I think we can get one going for June 2010. And, a bike ride is being planned for fall 2010! We won't stop until a cure is found.
Instead of posting brain cancer information this time, I am going to close with a link that has a ton of information / stories about brain cancer: http://www.greyribboncrusade.org/ LFAC is a proud member.
Cure Cancer: Aug. 7, 2009
Once again, we are blessed with good news. Heather's tumor has not grown, and the scar tissue is not as enhanced as before. Dr. Chang said, "This scan is the best I could hope for." We will take it!
For the first time I did not go to San Francisco with Heather; Jon went instead. School has resumed and I had some meetings I should not miss - new technology that is generations ahead of me! Anyway, even though I knew she was safe with Jon and my sister, I wanted to be there. Once I was on speaker phone and heard Dr. Chang's message, all was good. Then I wanted to be there to help celebrate. Oh well. . .
The plan remains as last time: Temador through December. I am very nervous for her to go off Temador because things are going so well on it. In fact, she handled her tiredness better this time, I think. She will see Dr. Chang in October, December, February, and then every three months instead of two if all goes well. That will be another adjustment for us.
In the meantime, we continue to pray for new advancements in treating this aggressive form of brain cancer. I know there are studies and trials all the time, but we need one that WORKS! So I'm thinking, a cure for ALL cancers would be awesome! Never settle, so let's go for the best.
Heather likes her new job and the people with whom she works. She is so lucky to have a job and to work with such a great group of doctors, nurses, and medical support staff. She feels at home.
Some other exciting news: Old Chicago (downtown) is sponsoring Monster Bash Thursday, October 29. Doors open at 6:30, $20 per person, appetizers, live band, costume contest, raffles, and silent auction - it should be tons of fun! In addition, instead of drink tickets this year, we are offering a special brew (made just for Monster Bash) and it will be free! Can't beat that offer. More information will be posted on the "events" link on the website soon. Old Chicago is preparing posters and t-shirts.
Other good news: "Wear Gray for a Day" on Friday, September 18. If your business would like to participate, let me know. LFAC will provide stickers to wear and raffle prizes for the office. Someone in Atlanta is promoting this same event, so it's our first step for a national effort. WEAR GRAY on September 18 and show your support for brain cancer awareness!
Again, we are so excited about Heather's report. She is fighting to win this war, and I think she will succeed. Have you tried to cross her before? I don't think even brain cancer wants to do that! Thank you for all your prayers; please keep them coming. I believe in the power of prayer, and I believe it is working for Heather. And as you are praying for her, please add Bob Sitzman to your list. He is currently fighting his battle with recurring lymphoma, and he needs the power of pray to work for him too. Pray for a cure for cancer.
In closing, I find a spark of hope in the following:
The different ways that patients respond to drugs make brain cancer hard to treat, but a new way to analyze brain tumors could help pinpoint which patients will benefit from a newly-approved drug. Bronnie McNabb underwent surgery, radiation and chemotherapy to fight brain tumors, but he always developed new ones. Since taking the new drug Avastin, however, his tumors are gone. "This is probably the best I have felt since this (cancer) first came on," McNabb said.
Although Avastin worked for McNabb, about half of patients with recurring cancer don't respond to it. A new way to analyze brain scans, developed by researchers at the University of California-Los Angeles, could help determine which tumors might respond to Avastin. Some glioblastoma tumors – the deadliest form of brain cancer – are more solid, while others contain more moving water, according to researchers' findings published in the July issue of Radiology.
"What we're looking at is the movement of water molecules within the tumor," explained Dr. Whitney Pope, director of radiology resident research at UCLA. "And what we've found is that tumors that have a lot of water molecules due to the death of cells within the tumor, those are tumors that respond well to Avastin."
Glioblastoma strikes about 12,000 Americans a year. When every day counts, knowing if tumors will respond to certain drugs is critical. "I've gone several months beyond what they told me would be my outside length of time to survive," McNabb said.
Researchers hope that one day they'll be able to tell exactly which tumors will respond to Avastin and other cancer-fighting drugs.
RIP: August 30. 2009
It's been a month since I have added to this blog, and a lot has happened since then. First, Heather is fine. She has the monthly low white cell count followed with her Neupogen shot, or as in some months - shots. She is getting so much better getting those. The last two months she has begun to battle low platelet counts, but she always seems to get those back up. If all goes well, she only has four more months of Temador. However, I have now begun to worry about the "what next?" phase of our life. Heather's next visit with Dr. Chang is October 7, so we will once again be waiting with bated breath for good news.
With Ted Kennedy's passing, a new surge in brain cancer awareness has risen. Our "Wear Gray for a Day" event has taken a life of its own - from Omaha, to St. Louis, to Atlanta, to many other areas, September 18 may see a lot of gray everywhere! Proudly wearing gray and letting people know why we need to spread the word that awareness and research is a must for brain cancer. No insurance plan in the world is good enough if a cure is not found.
Instead of ending with brain cancer information, I am going to end with a reflection. This past month has brought our family some sadness. Jon's father passed away on Saturday, August 29 after brief complications from various aging issues. The weeks have been stressful for the family as we tried to provide comfort for the pain and reassurance for the unknown. His father has always been "feisty," and he lived that until the very end. We will all miss the family patriarch and one of Heather's constant supporters. He loved her - and all his grandchildren - very much. RIP Charles Marvin Roberts!
What Next, or Where to Begin? September 21, 2009
So much has happened in the past four weeks that I'm not certain I can write in a logical manner. All has happened since my father-in-law's passing or started during his illness.
Heather and Mike have decided to get married. We are thrilled that they will be taking the next step in their relationship. They have certainly shared more intimate challenges than many couples have to face for years and years, so I believe they are a strong couple. Planning a "simple" wedding is starting to be fun and certainly takes our minds off the brain cancer. These two deserve something fun and memorable and positive to plan. Date will either be July 31 or August 7. We are waiting for another couple to decide on their date at the UNO Alumni House. Mike and Heather are 2nd in line for July 31. We should know by Wednesday. Next? Heather has chosen her wedding gown and attendants' dresses - at least her first choice. Flowers: Gerber Daisies. The colors should be so bright and hopeful.
During all this excitement, we have been working on Monster Bash, which is Thursday, October 29 at the downtown Old Chicago Restaurant. Check out the "events" link on our website for more information. Jon has been working hard to obtain Silent Auction items, and he has done well. In addition, we obtained free garage parking for the evening when Monster Bash attendees present a voucher. The band "Chasing Daylight" will be playing; and good food, a special brewed beer, costume contest, and raffle prizes will be available. We are so excited for our 2nd Annual Monster Bash.
On October 4, Bike Masters at 129/Fort will be hosting a bike ride in memory of Seth Embrey, who lost his battle with brain cancer last spring. Interestingly, Seth and Heather went to elementary school together. The bike ride is a 100, 62, or 30 mile ride. Entry is free, but LFAC donations are suggested. LFAC is honored to support another meaningful event for brain cancer awareness. For more information, see the "events" link on our website.
"Wear Gray for a Day" celebrated its second year on Friday, October 18. From Omaha to Atlanta to several other areas in the United States, the event was honored. Many cancer groups and organizations tweeted about this event for weeks prior. I heard from one person today who has asked to be become involved after her friend wore gray on Friday. Another business contacted us about supporting our cause. Time will tell how many people may have been touched, but one person more is a step forward.
Heather has been feeling fairly well. However, her platelets and white cell counts were too low last week for her chemo. So, she was supposed to try again today, but she came down with the flu late Saturday night. She was sick all Sunday and began running a steady fever early Sunday night. After a phone call to the oncologist, we were off to the ER. SIX HOURS later (4:30 am to be exact) we were home. She received a Nupergen shot, another antibiotic, and Tamiflu - but no pneumonia. They tried to do a flu test on her - tube inserted through the nose to goodness knows where - but Heather did not fare too well. We decided that we did not care what flu she has since all Type As are treated the same. The fever remains, so no work for a few days. She must remain fever free for 48 hours. I did not feel so great when the medical personnel looked at me and said, "You will be getting this." We are all on Tamiflu.
Lastly, my friend wrote on my Facebook: Stop asking, "What next?" I think I am going to adhere to her advice. My sister's husband, Matt, is undergoing testing to determine what is going on with his eyes. He has been told anything from an infection to an autoimmune disease to ocular lymphoma. The infection has been almost 100% ruled out, but the other two remain the focus. As Matt said, "I don't know what one I'm hoping for." This situation has been very stressful for my sister and her husband - obviously. Waiting seems forever, but in the medical world, "it" has been moving quickly. Five weeks has seemed like five months. Now they have to wait another two weeks for all tests to be analyzed and reported. Heather and I stay with them while we are in San Francisco, and now Matt is also going to UCSF. In fact, his doctor is the office directly below Heather's doctor.
I think that is about "it" for now. As I mentioned, Heather and I head to SF on Tuesday, October 6; her appointments are on October 7; and we return on October 8. I have several new questions to ask as we begin to think about Heather ending her chemo in December. I think it will be bittersweet. Ending the chemo and beginning a normal life again, but also ending the chemo that has kept the tumor from growing - as I said, "bittersweet."
Updated Information: An experimental drug derived from cottonseed proved effective in hindering the growth of the type of brain cancer that caused Ted Kennedy’s death. The drug completed Phase II clinical trials under the direction of researchers at the University of Alabama at Birmingham (UAB).
The American Cancer Society estimates that 21,000 Americans are diagnosed each year with brain tumors. Of these about 10,000 are glioblastomas. A glioma is any tumor that forms in the glial brain cells, the most abundant cells in the central nervous system. Glioma is not a specific type of cancer but a category of brain tumor that includes glioblastoma multiforme, astrocytomas, oligodendrogliomas, and ependymomas.
Good News; Scary News: October 10, 2009
Good news is always easy to handle - usually. The good news is that Heather's scans this month are again stable. Her tumor is not active and the area around the tumor looks good. The Temador has done its job, which has provided us security. However, Heather's body is starting to react to the chemo. Each month her white cell count and platelets dip lower. Her October chemo had to be postponed. Therefore, Dr. Chang feels it is time to stop the chemo. WAIT! Stop what is working? To me, that is scary. I told Dr. Chang, "I'm scared to have her stop chemo." Dr. Chang's simple and firm reply: "I'm scared to have her stay on it."
The compromise? Monitor Heather's blood weekly and make the final decision in 4 weeks. Of course, Heather is elated to be finished, and who can blame her. But I love my security blanket. The next step if she is finished with chemo is to continue MRIs and MRSs every 2 months and then slip into every 3 months. What? Another step away from another security? Even Dr. Chang doesn't like losing that security, but eventually it is what we want - I guess. It means good news, not bad. But it is scary.
Interestingly, we again met someone by chance who knows about brain cancer and Dr. Chang. We were looking for the vision clinic for a future appointment for my brother-in-law (which is another scary situation) and we (my sister and Heather and I) were somewhat lost at UCSF. We finally found the ocular-oncologist's office but could not find our way out. We bumped into a nice woman who helped us out of the maze. As we were walking, she asked the usual questions and found out we had originally seen Dr. Chang. She shared with us that Dr. Chang kept her husband alive for 17 years with Anaplastic Astrocytoma. I did not ask when her husband died, but I did hear "alive for 17 years"! In 17 more years, I firmly believe there will be a cure and Heather will be BEAT this ugly monster!
Speaking of "monster," we are prepping for the 2nd annual Monster Bash. We are so pleased to have Old Chicago (Rock Bottom in some areas of the country) host this event and to have Chasing Daylight provide the live entertainment. Thursday, October 29 will be a big night for Leap-for-a-Cure. I will certainly be writing about it next blog. If you are interested in attending, just go to the "events" tab on our website for more information.
Our church - Hope Presbyterian - will be having a special cancer service on Sunday, October 18. We were honored that Pastor Dave asked for our input. I know the services will focus on hope and miracle, which is exactly what cancer patients and the families need.
This summer Dr. Chang has agreed to come to Omaha for a conference. She will be presenting to two different audiences: one for doctors and one for lay people. I will be working with Methodist Hospital and Estabrook Cancer Center for this BIG event! More on that later. But what brought a gulp and some tears was when Dr. Chang asked that we schedule it around Heather's wedding so that she can attend the wedding. If I could only begin to share my gratitude to and admiration for Dr. Chang . . . I will NEVER forget her and will ALWAYS admire her conviction to curing / treating brain cancer.
Until next entry, I wish everyone health and happiness. Today, I leave you with a poem that is fitting for all who have been diagnosed with cancer:
Cancer is so limited. It cannot cripple love. It cannot shatter hope. It cannot corrode faith. It cannot destroy peace. It cannot kill friendship. It cannot suppress memories. It cannot silence courage. It cannot invade the soul. It cannot steal eternal life. It cannot conquer the spirit.
What chance does cancer have with so many limitations?
Chemo Over, Monster Bash, What Next? Oh My! November 4, 2009
Heather is officially finished with her chemo treatments for now. The standard treatment is 6 months on the Temador schedule after 6 weeks of radiation, and Heather lasted 10 months on it before her body said, "No more!" She is thrilled; she now saves $400 a month, and she won't have the infusions on Day 1 and Day 3 of her cycle, and she won't have side effects. Both Jon and I are so happy for her, but taking her off something that has worked is very difficult for us as well. Heather's cancer has been treated aggressively, so I don't think we can ask for more - right now anyway. We return to UCSF December 8 for her first MRI/MRS not on chemo.
What next? As for Heather's treatment plan, we just wait. I don't think there are any plans to do anything right now unless something inside her little head starts to change. Right now her blood count is good; her MRI looks good (still a tumor, but it isn't growing); her life is good. She can sit back and enjoy spending her parents’ money on her wedding instead of medical bills. Even Jon and I like that :)
Monster Bash - what fun! Even though the weather worked against us, people supported the cause. Pictures will be posted on the site soon. It was a good night of fun, fabulous music, awesome people, and yummy food. What more could we ask for? Costumes were quite detailed and unique. I think almost half of the guests worse costumes, which added to the atmosphere.
Every year I meet wonderful people who have been stricken with brain cancer in some form - either as a care giver, a friend, a spouse, or a patient. I am also amazed at the strength these people have. This year, two people who lost their husbands to brain cancer donated time and support to the evening. Susan M. lost her husband almost three years ago to GBM; and Joey E. lost her young husband last spring to it as well. In fact, Joey's husband is the young man who went to elementary school with Heather. Also in attendance were four people who are currently surviving brain cancer: Heather, Courtney, Matt, and Ryan. They are the faces of those who are winning the battle. And of course, there were moms, wives, fathers, and so many friends who all supported an evening of fun, laughter, music, and a costume contest :) With the 50 plus raffle prizes and the silent auction items, we were busy all night. Old Chicago certainly knows how to host an event! Chasing Daylight knows how to play for an event! And, Mark Kresl knows how to photograph an event! We had it all!
What next? First, we are planning another November "national" Pampered Chef party. Michele needs to get busy with that ASAP! In January and February, LFAC will host another fundraiser with the UNO hockey team. More on that later. Spring time? We hope to add Hy-Vee to our list of supporters and have a car show in June. Then it will be back to Wear-Gray-for-a Day and Monster Bash.
So, with Heather in-check, our focus returns to our good friend Bob. He has to remain positive as he continues his battle with lymphoma. He beat it once four years ago, and now his enemy returned for Round 2. This time, it is stronger, so Bob must fight harder. We are all praying and remaining positive that he will continue to light the way for Heather and she for him. She looks to him for her strength to beat the odds, so their tag-team is a unit. Not a night falls without some serious praying in our home, and some nights long conversations with Him go well into the night.
Once again, I end with hope for the future, blessings for the present, and learning from the past. Men may give up, doctors may give up, but God never gives up. We must remember never to give up!
LFAC Is Spending Some Money: Dec. 1, 2009
After another successful Monster Bash and another successful Pampered Chef Open House, Leap-for-a-Cure is finally going to spend money! Several doctors, including Dr. Long - Heather's neurosurgeon - have asked to purchase an fMRI (Functional MRI). This technology helps to further examine the anatomy of the brain and helps to determine precisely which part of the brain is handling critical functions such as thought, speech, movement, and sensation, which is also referred to as brain mapping. The fMRI monitors the growth and function of brain tumors and helps to guide the planning of surgery, radiation therapy, or other treatments for the brain. Before Heather's first surgery, she had to go to another hospital for this procedure. Although the purchase decision is not final, the doctors are working together to purchase a machine to help with brain tumors.
In addition, a summer conference / seminar is still in the planning stages. Again, several doctors, including all of Heather's, are involved. Again, the keynote speaker will be Dr. Susan Chang, Heather's neuro-oncologist in San Francisco.
In an age where science seems to do the unimaginable, only three new brain cancer treatments have been FDA approved in the past 25 years. This must change. For the patients living with glioblastoma, the families that support them, and the doctors that treat them, finding improved treatments is not an option—it’s a necessity. Although there are probably many research ideas that I do not know about, I have heard of two which provides some promise.
First, the Ivy Glioblastoma Atlas Project will show which genes are active – or not functioning normally – within a glioblastoma tumor at a level of detail not previously possible. The development of better therapies depends on understanding the key molecular changes that drive brain tumor behavior. Since glioblastoma is a highly heterogeneous disease—meaning that brain cancer manifests itself differently in each person—it is challenging for researchers to discover effective treatments. Each treatment plan needs to be highly personalized and the development of better patient therapies depends on an improved understanding of the differences in brain tumors. This detailed information from the Ivy Glioblastoma Atlas Project will move us closer to making personalized medicine a reality.
Second, a vaccine for treating a recurrent cancer of the central nervous system that occurs primarily in the brain has shown promise in preliminary data from a clinical trial at the University of California, San Francisco. The vaccine actually provokes a tumor-specific immune response that is patient specific. T-cells, the killer compound of the immune system, track down the cancer and try to kill it. The vaccine concept is not new, but until now, it has been used as a treatment of last resort, reserved for patients whose brain tumors showed evidence of reoccurring. UCSF used the vaccine at the beginning of a patient's brain tumor treatment regimen. It was a quick injection that will be followed up with others in the weeks to come. So far, so good. The idea is to combine the tumor vaccine early, while the cancer is being weakened by chemotherapy and radiation. The hope is patients will then be able to manage the disease using their own immune system. "The best outcome would be that...we convert this deadly cancer into a chronic disease, like diabetes or hypertension. Something a medication can take care of, that's our goal." WOW - we could happily live with that!
Wedding update: Plans are moving forward for Heather and Mike's big day: July 31. Her wedding dress is hanging in one of our closets and will be altered later this spring. All the bridesmaids' dresses are ordered, the church and our minister have been secured, the band and photographer are good to go. I know we have much work yet to do, but I feel we have a good start. We will be meeting with the caterer and deciding about the cake sometime in January. Of course, there are so many little things - things I will probably forget - that need to be done. No matter what, the day will be SPECIAL!
Heather and I head to San Francisco on Sunday for her bi-monthly appointment. Because she is no longer taking chemo, we are a bit more anxious than usual for a good "status quo" report. I will keep you posted. As always, please keep Heather in your prayers.
“Status Quo” = Good News: December 12, 2009
Another trip to San Francisco, and we were blessed with another "status quo" report. At this time, Heather's tumor does not appear to be growing and appears to be surrounded by dead cells. We cannot ask for any better news.
We had a discussion with Dr. Chang regarding the vaccine that seems to be doing well in trials. Currently, UCSF is participating in a trial using the vaccine. However, unless Heather needs another surgery someday, she will not be able to use the vaccine because the vaccine is made from the patient's tumor. In addition, there is only one direction that Heather's tumor could grow for her to even be eligible for surgery. So, no growth = no surgery anyway. I'm all about keeping it "status quo."
We return in two months for another MRI and check-up. Someday we will have to wait three months between visits, but I don't know if we will ever stretch it longer than that - at least not for a LONG time from now. I know how blessed we are that Heather is doing well right now. I know others who are not doing as well, and my heart aches for them. But no one is without hope, and I believe researchers are making strides in the fight against brain cancer.
Heather has taken a little break from wedding plans, but we will start again after the holidays. Speaking of holidays, we are almost ready. I started my shopping with a specific list and before Thanksgiving, so I am almost finished. The house is decorated, the presents are wrapped and under the tree, and a few treats have been made and are in the freezer. I feel good :) I love the holidays - the lights, the music, the shopping, the decorating - everything! And getting good news is always a blessing.
Amy comes home late on December 23 and leaves on December 27, so our family will once again be together for the holidays. No matter how many gifts are under the tree, the best gift of all (other than health) is family being together. We truly appreciate and honor our gift of family and good news for this holiday season. From our family to yours, we wish you a happy and safe season of love, peace, and togetherness.
Stomach Pit: Jan. 5, 2010
When a mother receives a phone call from her daughter stating that "some symptoms are back," the daily routine comes to an abrupt halt and the pit engulfs in the stomach. I guess I always have the pit, but sometimes it is less noticeable. Right now, it is ready to crawl up my throat and spew from my mouth!
So, tomorrow - Wednesday, January 6 - Heather is scheduled for an unexpected MRI because of her unexpected and certainly unwelcomed symptoms. I'm sitting here deciding what my next move is - to cry or to remain calm. To fight or to prepare. To believe or to question. Well, I have chosen to remain calm, fight the pessimism, and believe that God won't let the MRI be bad news. Our positive beliefs and actions have taken us this far; I refuse to think we are headed in a different direction.
Just received a call - MRI tonight at 5:30. I will keep you posted.
Such an abrupt ending, but I needed to do something other than write about my fears. I needed time to clear my head. I needed time to get back into focus.
We met Heather and Michele at Methodist Hospital for Heather's 5:30 MRI. Unfortunately, we all waited until 6:05 before Heather was called into the room. About 40 minutes later, Heather appeared. The technician could not /would not tell us anything - of course - but I did try to "trick" him into telling us something. He was too good. He did say to make certain we bring in San Francisco’s disc tomorrow morning because the radiologist will need to compare the two. Obviously, that means something is there, but it could be what was there on Dec. 8.
If I have learned anything these past 20 months, I have learned not to predict. First, medical science is unpredictable and most importantly, no one can predict what God has in store for us. Which takes me back to my positive beliefs, actions, and trust in God.
Within the next 12 hours, I believe my fears will be put to rest, we will laugh at our overly concerned behavior, and we will once again be thankful for the strength God has given us.
January 6, 2010
Well, good news for the Roberts' family :) Heather's MRI report came back "stable." We cannot ask for more than that! We are not certain why Heather had issues with her left hand yesterday, which remains somewhat disconcerting, but we will happily take "stable" for now. Amy says Heather's left hand is suffering from the weight of her new "bling." She and Mike are officially engaged - beautiful ring to "seal the deal."
The report has been sent to Dr. Chang, but just to make certain, we also sent the MRI disc to her as well. Can't hurt having two people read it.
Omaha is currently suffering from the coldest and snowiest winter in 60 years! I think I understand the term cabin fever better now than I did before. I want to start so many "things," but I never know if there will be school the following day, so I don't want to take out everything. I should have as we are now missing another day tomorrow.
Again, we have been blessed with good news. I cannot thank people enough for their prayers and support - even when we can't always "see" it; we know it is there, especially when we receive such good news. We are beginning to understand how scary this journey can be - never knowing what little or major "issue" may actually mean something. That's OK. I told Heather she can NEVER ignore any possible signs; we always have to keep on top of it.
Tonight, we will all sleep a bit better -
UNO / LFAC Team Together Again: January 30, 2010
One year ago, we were going crazy trying to prepare for our first UNO / LFAC fundraiser. Fast forward - we are doing it again. "Stache-for-Cash" will be starting Friday, February 5, and continue through the month of February: 2/5, 2/6, 2/12/, 2/13, 2/26/ and 2/27.
Instead of participants shaving hair off this year, they are currently trying to add some to their faces. Participants are sporting facial hair, wearing pins that say, "Ask me about my Stache," and trying to raise money so that they remain in the competition. After the first series, five participants will be eliminated. After the second series, ten more will be eliminated. The last series will determine the winners: Most Bushy, Best Effort, Most Original, Best Stache / Face, and Mr. Omaha (whoever raises the most money).
Along with "Stache-for-Cash," special raffles and a jersey auction will take place. On Friday 2/26, LFAC will distribute 2,000 wristbands; and on Saturday 2/27, Methodist Hospital Foundation will distribute 5,000 key chain flashlights for a special lighting ceremony before the game. Brandi Petersen and Jeff Degan will be the emcees again this year. In addition, each game will honor a brain cancer survivor / patient as he/she ceremoniously drops the puck. After last year's $44,000, our sights are set high. The goal is $50,000 this year.
LFAC is set to purchase a Functional MRI (fMRI) for Methodist Hospital. fMRI is becoming the diagnostic method of choice for learning how a normal, diseased, or injured brain is working, as well as for assessing the potential risks of surgery or other invasive treatments of the brain.
Physicians perform fMRI to: *examine the anatomy of the brain; *determine precisely which part of the brain is handling critical functions such as thought, speech, movement and sensation, which is called brain mapping; *help assess the effects of stroke, trauma or degenerative disease (such as Alzheimer's) on brain function; *monitor the growth and function of brain tumors; and *guide the planning of surgery, radiation therapy, or other surgical treatments for the brain. Although brain tumor patients will definitely benefit, so will other brain trauma patients.
February will be busy and memorable. We will be busy, busy, busy with the fundraiser; and the one weekend UNO is not in town, we will be celebrating Heather and Mike's engagement with a wonderful party. Every weekend will be filled with excitement and energy.
Then March will come and we will head to San Francisco again for another visit with Dr. Chang. Until then, we will enjoy our weekends and plan for a wedding.
Cancer is so limited that: It cannot cripple love It cannot shatter hope It cannot corrode faith It cannot destroy peace It cannot kill friendship It cannot suppress memories It cannot silence courage It cannot invade the soul It cannot steal eternal life It cannot conquer the spirit
I'm feeling positive tonight!
Omaha Did It Again: March 1, 2010
Who would have ever thought that LFAC's "BIG" fundraiser would have another successful year? When we raised $44,000 last year, I never thought we would top it. But leave it to Omaha to support a great cause once again in 2010!
When the final horn sounded to end the game on Saturday (2/27), we had our "estimate" for the announcement: almost $50,000. We are still counting all the money, which is coming from several directions, and we are now just barely over $50,000. I think I am still in shock. So many volunteers helped to make this dream come true: Michele, who has a vested interest in both UNO and brain cancer; Bob and Robyn, who have made brain cancer their personal cause even though Bob is battling his own fight with lymphoma; Jean and Jeff, who continue to support LFAC; Kate, who is now known as our very own "ticket master"; and all the people who supported us during the six games. Each game we had about 30 volunteers, some of whom worked more than one game.
Jon and I are exhausted but feel so proud to announce that LFAC will be able to purchase the Functional MRI (fMRI) for Methodist Hospital and Estabrook Cancer Center. We created LFAC to make a difference, and now we have. But, without all the support from our family, friends, and Omaha community, that would not have been possible. So, THANK YOU!
Someone asked me, "So, now what are you going to do?" My response: "Going to plan our next event [car show, I think]!" I'm certain we can continue to help in some manner.
Currently, Heather and I are preparing for her UCSF medical appointment next week. Unfortunately, Heather is sick with bronchitis and an ear infection. She has been miserable for about two weeks. With a new dose of antibiotics and steroid breathing treatments, hopefully she can shake the bug.
Brain Cancer Update from The National Cancer Institute: In 2009 = 22,070 new brain cancer diagnoses; 12,920 brain cancer deaths. TOO MANY!
Belief in Hope: March 17, 2010
San Francisco's trip resulted in another "status quo" for the tumor. Heather continues to do well, considering part of the dumb thing is still in her head! Waiting for Dr. Chang to greet us in the waiting room is always difficult: I notice that my legs twitch, I can't sit still, and Heather is a bit "short." I look around the waiting area and always remind myself that EVERYONE is in that waiting room because of a brain tumor. I begin to make-up my own stories about all who are waiting; and in my stories, they all survive because Dr. Chang saved their lives. Eventually, Dr. Chang comes out and gives Heather her hug and we move to the inner room.
Dr. Chang sits at the multi-screen computer and begins her report. We have been so fortunate that her reports - other than the first one she delivered to us - have been good. I always feel odd saying we received "good" news when Heather has a freakin' tumor in her head, but "status quo" IS GOOD NEWS! No change = GOOD NEWS. We are lucky :)
We had to ask Dr. Chang some questions that were a bit uncomfortable because it meant we had to also discuss the tumor, the Grade 3, the current prognosis - all the UGLY stuff that comes with having brain cancer. It's those subtle reminders that can knock the wind out of you, but then you realize that we are still planning for the future because we believe in the future. We believe in better treatments; We believe in miracles. We believe in a cure.
From the moment Heather was born, I knew she had a purpose in life. She was 3 weeks late (and I was as swollen as a anyone would be after carrying a child an extra three weeks in Nebraska during the summer!). But what made her birth date more special was the date itself: September 13. The same date my father died from brain cancer in 1962, Of course, I had NO vision of what was to come, but I just knew she was special. So, I have always believed her diagnosis just means that she will be around for a cure. The circle of life will be completed with her receiving the treatment that my father could never even dream of. So, through those questions and answers that we shared with Dr. Chang, comfort came when we could say: "We never know when that cure will be here, but it will."
Heather had to see a neurologist Thursday (3/18). Dr. Chang thought Heather might be having some motor seizures on her left side, particularly in her left hand. In addition, her left side seems to be a bit weaker, so she is back into Physical Therapy. The neurologist, Dr. Diesing, believes her issue is more spasmodic, not seizure related. However, she will undergo an EEG on April 2 to make certain. She will forever need to maintain muscle therapy, which she is already learning in physical therapy. He really explained how complicated her surgery was and how well she is doing for such a task. Apparently, we never knew the full extent of her surgery. We have been told before that there is no way surgery could ever get any closer to the motor skills area because there is NO room. Dr. Long performed the surgery right on the line with NO room to spare. I guess hearing it again was good for us.
I cannot think or a more appropriate way to end this post: In memoriam of Nathan Waggoner, a very courageous 17-year-old who lost his battle with brain cancer this morning (3/19/2010). We honor him for his fight, and we honor him for his courage. As a mom, I don't even want to think about what Monica and her family are going through right now. Our heartfelt sympathies and prayers go to the entire family and the friends Nate has left behind. God Bless.
Breakfast to Begin the Day: April 15, 2010
I just returned from our 2nd Methodist Hospital Foundation / Estabrook Cancer Center breakfast. Last year, the breakfast celebrated the support from the UNO Hockey Team and the Community for raising $44,000. This year, we celebrated the same groups for raising $50,000. WOW! To finally be able to personally thank the team, coaches, doctors, community members, and friends who all made it possible started my day like a good breakfast :) Of course, a wonderful breakfast was served, but I just enjoyed the energy provided through seeing so many great people sitting in one location.
LFAC was honored to be able to recognize the efforts of the UNO Hockey team - players, coaches, trainers, managers, and staff. Without their commitment, we would not have had an event. In addition to recognizing the UNO side, I was also able to recognize two people who have stood by my side throughout the entire process: Robyn Sitzman and Jean Koerten. Their creativity and tenacity have certainly helped LFAC to succeed. And the Methodist Hospital Foundation team - so supportive! And we were so honored to have so many medical personnel in attendance as well. Dr. Poppa (Heather's oncologist) even took the time to speak to everyone.
The most fun part of the morning being able to finally announce the winners for the "Stache-for-Cash" fundraiser: Best Effort: Terry Broadhurst (#17) Most Original Face: Matt Smith (#2) Most Bushy Face: Jawed and Mark VonBrokern (#4) Best Stache: Dr. Lydiatt and Eddie DelGrosso (#7) Community Spirit: Coach Mike Kemp Omaha's Face (raised the most money): David Scott
Special recognition went to Ron Brasel for his support throughout the event. He made certain LFAC was on the dasher boards - gray ribbons and our frog logo.
Again, the morning is one that I look forward to because I can say THANK YOU to so many people!
As my husband said this morning to the group: There is a different between donating money and philanthropy. UNO and all the people who made the event successful were involved in philanthropy!
May is Brain Tumor Awareness Month: May 8, 2010
Another MRI, Dr. Chang visit, and blessing: "no change." What better Mother's Day gift could I ever, ever receive?
Heather and I took the train from San Jose to San Francisco this time. We actually enjoyed the experience very much. Surprisingly, there were no glitches - of any kind. While on the "baby bullet," Heather and I shared funny stories and future possibilities. We always seem to be able to make certain we make the best of all situations, and this time was no different.
After the MRI, we headed to the shuttle for our UCSF visit with Dr. Chang. Two transfers later, we're there. Unfortunately, someone was not hearing good news, so Dr. Chang was running late. Instead of sitting there, we headed for the sunshine - and wind - outside. People watching in San Francisco is always a treat :) The farmer's market offers such sweet strawberries, and the fresh flowers tickle our senses, so sitting outside helped to clear our heads and give us the strength to enter the office on 8th floor once again.
Once again our legs and feet started twitching and then we met the couple from Idaho. She has Glioblastoma (Grade 4); Heather, Anaplastic Astrocytoma (Grade 3). Her husband found UCSF while researching; I found UCSF while researching. Neither one of us liked the options that were given to us "way back then." We have all come so far. All of us know we are in the "right' place; and because of UCSF, we are able to share life with our loved ones. Nothing is more important than that!
Dr. Chang finally emerges, apologizing for running so late. Never, Never would we be impatient with that. I'm so thankful we aren't the ones hearing the news again. I'm so thankful we get to see Dr. Chang's smile when she greets Heather. "No change." Yes, those are the best words ever :)
May is Brain Tumor Awareness month. PLEASE say a prayer for a cure. PLEASE pray for someone with brain cancer. PLEASE do something to make May be heard: BRAIN CANCER sucks! We need a cure! We need HOPE!
Summer Happenings: June 17, 2010
It has been awhile since I have written, and I think that must be "good" news. May ended my 25-year teaching career, so I was very busy preparing for my next "career": retirement.
My nephew is trying to make changes to the website, but he is having some technical problems. Currently, the site is not up-to-date and I cannot fix that. I am eager to get it fixed because I have some good news to share. Dr. Susan Chang will be coming to Omaha August 26 - 27 for the first Brain Tumor Symposium at Methodist Estabrook Cancer Center. LFAC is sponsoring the event, and I'm going to work to make certain it is a success. I met with several people to help organize the two-day symposium. August 26 will be dedicated to patients, family, friends, and caregivers. Topics will include the following: Diagnosis, gliomas (low and high grade), radiation, surgery options, trials, vaccine, and a question / answer session. Dr. Chang will spend the entire day with this audience. I'm so excited to offer her expertise to such a special group of people. August 27 is a medical symposium for medical personnel. Again, Dr. Chang will share her expertise and other medical doctors will deliver up-to-date information to the medical community regarding brain tumors. Methodist Estabrook Cancer Center will be promoting this event, so I will keep people posted. We are so excited about this opportunity!
Heather is doing well - so far, so good. She just moved into her new house, so she is keeping busy unpacking and decorating. We are so happy that she now lives close to us - about 8 blocks from us. We can take walks, help her with her dog, or help her with anything she may need. It is so convenient. She continues her physical therapy twice a week. I think it helps to keep her left side strong. The past month has been difficult for her for many reasons, and she continues to amaze me with her strength and her determination to face adversity head on. She is not going to waste her life, that is for certain! She remains my role model.
I have a special thank you to shout out: THANK YOU ROSARY! This lady has been sending Heather cards regularly for over two years. We have College World Series seats by Rosary, and we only see each other during the CWS. But she has made a lasting impression on our family with her continued support through prayer and cards. So, thank you, Rosary.
The third annual Monster Bash for Brain Cancer is scheduled for Thursday, October 28. Mark your calendars now. The KAT radio station is sponsoring it this year, so we are hoping planning the BEST Monster Bash yet: silent auction, door prizes, raffles, costume contest for adults and children, live band, and more. As always, all money raised goes directly to help with diagnosis, treatment, awareness, etc. for brain cancer at Estabrook Cancer Center. It remains our mission to make a difference.
I was watching Dr. Oz the other day, and WOW - he was doing a show on cancers. He discussed the 5 leading cancers. He started with symptoms and had someone try to guess the cancer. Well, brain cancer was #4 on his list of 5. As a reminder: A constant headache that is worse in the morning than later in the day or a headache that includes vomiting / nausea, a new seizure in an adult, unsteadiness or imbalance - especially with a headache, gradual loss of movement or sensation in a limb, or speech difficulty can be a sign of brain cancer. Get it checked out and demand an MRI if not satisfied. And don't forget about the second opinion.
Letter to Cancer: July 15, 2010
I read a wonderful blog entry from a young husband and father who has brain cancer. He wrote a letter to cancer, with no intention of publishing it; but he changed his mind, and I am so glad he did. I read his letter and found strength in his determination to make his brain cancer take a back seat to his life. This man thanked cancer for giving him a new life - a better life. He now knows his God and he knows what is really important in life. He does not expect cancer to win in the end. Neither do I.
Heather is much like this man. She has not written a letter to cancer, but she has not given it a chance to rule her life. She put this demon on a back burner and never plans to use that burner again! It is O - V - E - R!
Next week we head to San Francisco for her bi-monthly Dr. Chang visit. As you know, I begin to start my jitters about two weeks prior, so I am in full-swing now. Actually, we are waiting an extra week this month because of Dr. Chang's schedule, so the anxiety is a little stronger this time.
But, sometimes things work for the best. My mom - Heather's grandma - passed away July 12, which would have been either a travel day or the day prior to travel if our schedule had been on time. Losing a loved one is something no one has to try to explain. Simply put: It hurts like HELL! I am so thankful I was at her side, so I'm happy our UCSF trip is a week later than normal.
Heather is doing very well. I think the steroids are finally OFF! She is working hard at her physical therapy, eating very healthy, and exercising regularly. I think good habits will equal good results.
She has settled into her new home and seems to be enjoying the new location close to us :) She and I try to walk our dogs together every night, which is a perfect "mom and daughter time." I am so blessed.
Please keep Heather in your prayers as we head to UCSF. I have learned our new way of life - waiting, waiting, waiting. But, when I hear Dr. Chang say the words "stable" or "no change," all the waiting is worth it. I turn to Heather, our smiles meet, and the hugs begin!
Bundle of News: August 30, 2010
So much has happened since my last post. My wonderful nephew has been working hard on updating the website and helping me manage it by myself. In the process we have been out-of-commission.
I am excited to share with you that Heather's July visit to San Fransisco went very well. Once again, no tumor growth. In fact, Dr. Chang moved Heather to once every three months for her visits. Yes, that is good news, but a little unsettling as well. There is some comfort in having Heather checked every eight weeks, but there is comfort in her graduating to every three months as well. Our next visit is mid-October. My emotional clock will have to readjust.
Our Brain Tumor Conference was a success! Dr. Chang was fabulous with the patients and families on Thursday. I was in "awe" with her presentation, and so was everyone else! In fact, I think one family is headed to UCSF for a consultation. So many Methodist employees could not believe that she took her time with people and spent five hours talking /sharing information. The Friday symposium was a filled session, which was also impressive. Dr. Chang was the keynote speaker, and she pulled in the participants again. I'm so proud that LFAC sponsored the conference and I remain indebted to Dr. Chang for coming to Omaha to share her knowledge with everyone. All I can say is "WOW!"
With the conference over, our next event is the Mud Run on September 12 followed with the "100 for One" Bike Ride on September 18. Both events support LFAC, which in turn supports our community. And October will bring Art-in-a-Bag and Monster Bash. Please check out leapforacure.org for more information.
Summer is winding down and fall will soon emerge. I always think of fall as the beginning of a new year, not the end. So I am looking forward to new happenings, new advances, new hopes. Heather remains stable, and we cannot be more pleased. However, she knows that someday her tumor will grow, that someday she will face surgery / treatment again, that someday her life will face new twists and curves. But she will bravely face those challenges just as she has in the past. Every day we are waiting for "the" cure, "the" advancement so that brain cancer will no longer be what it is today.
Cancer Sucks! September 25, 2010
We lost a good friend and Heather's cancer "mentor" to mantle-cell lymphoma. Bob Sitzman fought a long, hard battle for six years, and he and his wife Robyn never gave up hope until the very end. Bob never complained and continued to be the most unselfish person we have ever known. People often say, "the world lost a great one today," and that is so true of Bob Sitzman.
For 40 years Bob has been a part of our life, and the one who gave Jon balance. We will miss him beyond words. They were truly friends to the end, and the memories and lessons learned from Bob will last a lifetime.
Heather is suffering from another perspective. Both Bob and Heather "promised" each other that they would beat the monster. He was there for Heather when she was diagnosed, during and after her surgeries, and for support through treatment. They would share stories and share their hopes. I truly believe Bob decided only one of them will win, so he chose it to be Heather. She has big shoes to fill, and I know Heather will do it. She will win the battle and will mentor others who are in the fight. She learned a lot from Bob as well, so his legacy will continue in many ways.
Bob's son wrote a very moving message about his father, and I can only paraphrase it: Titles, material possessions, and money cannot be the yardstick of one's accomplishments. Bob is testimony of that!
SF Here We Come: October 13, 2010
I can always tell when our SF trip is around the corner: Heather begins to worry about headaches, bumps, and bruises. I can't sit still and I notice my legs twitching. Yes, we are days away from our trip.
I'm watching the miners being released: #21 to be exact. I'm so happy for them all and feel that prayers have been answered. I know there is so much good that happens in the world, and this story is a good illustration of that. Another "good" is all the attention that PINK gets in October. Sometimes I am so jealous of that. Where is the GRAY in May? But I need to remember that God has a plan; we just don't know what it is or when our prayers will be answered. So, patience and faith are needed.
We are working hard on our 3rd Annual Monster Bash for Brain Cancer. Again, good is prevailing. So many businesses have generously donated to our cause. And many have even provided sponsorships of the event. Please go to the "Sponsors" tab and the "Supports" tab to view these wonderful people and places of business. I am updating almost daily :)
Heather is excited about her new home. The landscaping company is there right now doing some updating work. And tomorrow her basement will be framed as she begins the process of "finishing her basement." Her excitement is a blessing. I love seeing her happy! She has been so brave with everything that has happened to her in the last 2-1/2 years; she deserves GOOD in her life.
Our family misses our special friend, Bob. We celebrated his birthday Monday night with a dinner and releasing balloons. The evening air drew those balloons straight up, and we could see them for a long time. We all had time to reflect and remember Bob's gift of life he shared with us. He will be in our thoughts forever.
Please say a prayer for "good" news on Wednesday, 11/21/2010. Heather deserves continued "stable" results so she can continue to rebuild her life and enjoy her new blessings.
You can now leave comments, so don't hesitate to do so. Next entry will be late next week.
Stable = Woo Hoo! October 23, 2010
I'm beginning to love the word "stable." What more could a mom ask for?
For some reason, Heather and I were a little more anxious this trip. As I mentioned before, this trip was 3 months instead of 2, so I'm certain that had something to do with the nerves. Heather had headaches off and on for the week prior, and headaches are never good in our world. But, in the need, the MRI showed that her tumor is stable.
I wish I could explain how the world of normal is so different for us now. Of course we live our lives as anyone else does, but we have the added pressure of the tumor. It is so exciting to hear the good news; it is almost like a "high" of some kind. But as time goes on, the anxiety begins to build until we hear "stable" again. It's crazy, but it is our life.
Dr. Chang is so good. She reassures us with the new trials and the research that is being done. She says that the longer Heather's tumor is "stable," the better chance we have of a new breakthrough when the tumor decides to grow again. Even though I'm nervous, I feel comfortable that miracles are in the stars.
Tonight the two Elkhorn high schools played each other, but they did more than that: the two schools had a "gray" out for the game. The schools played each other for the first time, and what a memorable event. I'm amazed that the young people gathered, organized, and accomplished such a memorable night between the two schools. And, I'm impressed that the school administrators supported it. WOW! All the money raised supports childhood brain cancer research. Congrats to Elkhorn students.
Our fall has been so beautiful this year. As October comes to an end, the sun is still shining and the weather is still warm. I love it! So, of course, I'm hoping for great weather for this year's Monster Bash. Last year's weather was miserable. We are working hard to host the best ever Monster Bash to support Brain Cancer Awareness. Pictures will be added to the "Photos" tab next weekend.
That's it for now. Bless you all!
Monster Bash 2010: November 3, 2010
All the planning, begging, seeking, and practically selling our souls - we did it. Success! Yes, another Monster Bash is over and it is time to start planning for Monster Bash 2011. The weather was perfect, the venue was fabulous, and the people superb. What more can we want for a perfect evening?
So many people are responsible for such a fun event - from our volunteers, who are our friends, to our sponsors, to the businesses who donated to our raffle and silent auction, we say THANK YOU. Please check out at our "sponsors" tab and our "supporters" tab to see those businesses who helped us.
The costume contest was so fun - for kids and for adults. So many talented people who created such fun costumes - it's amazing. Jeff and Pam Daley and Brian Lichter were awesome judges. Thank you! And my volunteers - Jean K., Vic and Ruth L., Joey E., Lindsey, Faith, Kelsey, Moncia W., Jan A., Beth J., Amber R., Sue K., Ron and Connie B., and Kath and Ted B. - THANK YOU!
Chasing Daylight - my favorite local band - is incredible. They will have to stay together for a long time because Monster Bash needs them :) They are so good and so easy to work with. And Face Painting by Debbie - the kids had such a fun time! And finally, the Omaha Lancers - thank you for being a part of the evening's festivities.
Something that most people probably never thought about was how many people were in attendance who are Brain Cancer patients. I personally know of six, and I would guess there were some more. We tried to create an event that helped recognize the gray ribbon, but we wanted the event to focus on family and fun - not the devastation that has crept into so many lives.
And Reagan Elementary School presented LFAC a check for $2,600 that the students and staff collected from Penny Wars. Kate K. and Jody F. are two teachers who have worked hard on this for 3 years, and LFAC is honored that they are helping to spread the word that "gray matters." Thank you Reagan Elementary School!
Photos will be uploaded soon. And, please think Monster Bash 2011! Our goal is to make Monster Bash a "must attend" event.
As always, prayers for all brain tumor patients and families.
Another Fight: November 15, 2010
OK, this "fight" is not nearly the size of brain cancer. It is not the size of anything that is life-threatening, but it is another fight: Graves' disease. Heather has been diagnosed with it and will see an endocrinologist on Nov. 22.
One day about two months ago, Heather asked me if I thought her eyes were "buggy." I took a good look at her and said, "Heather, you just got new glasses. All eyes look bigger with new glasses." Obviously, I had no idea what I was talking about, but she believed me.
Another day she commented about how easy it has been to lose weight. She said something like the following: "If I had known all I had to do was eat better and take walks, I would have started this a long time ago." Now, one would think that I would have started to put things together, but I didn't. She has lost 50 pounds since June - and she hasn't been trying very hard. We kept attributing it to late steroid weight loss, stress, and good habits. Again, all I can say is "Really?"
And there were a few other symptoms. I had no idea that if I put them all together Graves' disease would pop out. Thank goodness for a very observant doctor who noticed her eyes and ordered a blood test. After the result of that test, she was scheduled for some nuclear testing which confirmed the diagnosis along with a goiter.
We do not know for certain what is next, but we are thankful Graves' is treatable. Because Graves' is an autoimmune disease, I know stress plays a role in its activeness and aggressiveness. Heather has been under a ton of stress, so eliminating the stress will become important. We will do our best to do that.
And, as always, her strength and positive attitude amazes me. We both were upset with the diagnosis - for selfish reasons. At first, Heather became frustrated that she had one more doctor, more medication, more tests, more to her daily routine, and one more medical problem. She even cried. Then, she woke up and has not looked back. She knows it could be worse, so she is thankful. Again, Graves' is treatable.
So, when Monday, Nov. 22 comes around, we will be sitting in yet another doctor's office learning about a disease we know nothing about. However, this time we will be comforted knowing that even though the diagnosis comes with life-changing routines, it also comes with a happy ending.
Tis the Season: December 15, 2010
Blessings everyone! Yes, it is the season to count blessings, and our cup runneth over. Heather is feeling well, despite her current sore throat, her Graves' disease, and, of course, her brain issue. Amy is preparing for our trip to see her. She is working hard to fulfill our requests, or as she claims - our demands. And Michele continues to try to make us all happy by being so thoughtful and caring. Of course, Jon and I are as ornery as ever, so I guess it is all well.
Three big changes this year to our holiday celebration: my mother passed away July 12, our best buddy in the world - Bob - lost his cancer battle on September 23, and Mike and Heather parted ways when Heather called off their wedding in early June. Even as we miss these people and what they brought to our lives, we will celebrate life and blessings and remember the "reason for the season," and that is what is important.
We are so excited for this coming Friday (12/17)! The Functional MRI (fMRI) that LFAC purchased for Methodist Hospital is ready for use. Heather will be the first "patient" to demonstrate the machine during a celebration Friday morning. So many people were involved in making this happen, and I cannot begin to thank everyone personally. However, THANK YOU to everyone who has sent blessings, offered time, and donated money to Leap-for-a-Cure. We could never have accomplished this without you.
And, this is too cool: Someone who works at Sam's Club heard about LFAC and wrote a grant through the company. And, that someone was granted $250 for LFAC! Sam's Club has supported Monster Bash the past three years with a gift card, and now this. Thank you Sam's Club!
The new year will begin with a medical "bang." Heather will begin the new year being "radio-active" as she begins her Graves' disease treatment. Then she and I will head to San Fransisco for her medical check-up in mid-January.
Leap-for-a-Cure and the Omaha Lancers are planning a January 8 fundraising event. The Lancers will be playing the Lincoln Stars and LFAC will be raising money. Our Mascot will drop the puck at the game. More details will be posted on Leap-for-a-Cure on facebook (http://www.facebook.com/#!/pages/Leap-for-a-Cure/142574853174) and Twitter (http://twitter.com/#!/leapforacure) as soon as plans are finalized.
And, UNO will be working with LFAC during the February 25 and 26 games against Denver. Prior to that, UNO and LFAC will be selling "light up" flags for $5.00. More on that later; but if you go to a hockey game in January, make certain to purchase your flag before they are sold out. Only 5,000 were ordered.
From our family to yours, we wish for everyone to stay safe, happy, and healthy. Remember to follow LFAC on Facebook and twitter.
Hope = Everything: January 21, 2011
We just returned from our UCSF trip and we are celebrating another good report: NO CHANGE in Heather's tumor :)
As always, Heather and I sat in Dr. Chang's waiting area with our feet and legs rockin' and rollin'. We watch the other people in the waiting area and wait with such anticipation for our news. But I also look at the other patients and wonder what their news will be. Everyone is there because they have a brain tumor or they are supporting someone who does. This time we are the lucky ones once again. Dr. Chang, who almost always comes out to greet her patients and walks with them to their examine room, met us with warmth and smiles. She comforts us immediately.
Heather always begins the day with her MRI at China Basin. We were a little stressed because traffic was unusually backed-up on 101 because of an accident. If we were too late, would Heather miss her MRI? After 20 minutes of concern, we made it with no time to spare. The technicians and office personnel know Heather and are always helpful and kind. I think that helps to calm Heather's morning before waiting for the afternoon "news."
As we enter Dr. Chang's examine room, we see the MRI results on the screen. Of course, my eyes are fixated on the screen while we all wait for the words "No Change." Heather and I can finally exhale, relax, and smile.
I know we are able to celebrate when others may not, but for the moment I am selfish. My daughter has more time for a cure. But then the dreaded conversation interferes. Dr. Chang reminds us that Heather's tumor WILL grow someday - "when" is the unknown. Heather's face falls as she has convinced herself that her tumor will remain "stable" forever. My heart is heavy. So, I immediately begin discussing new treatments, trials, vaccines, surgery procedures, etc., and we once again feel hope. Even though funding is being cut, which will severely affect brain cancer research, we hold tight to the HOPE that the future holds. I remember the saying, "He who has hope has everything." And we have hope!
Heather remains focused on her new life and new beginnings. She is in a good place. She is having fun, spending a lot to time with friends and family. She is working on her house and having such a good time finishing her basement.
Looking forward to spring and summer, Heather knows that in life we have no guarantees. She knows that each day holds treasures and that we need to cherish those treasures. Even what seems to be solid may melt and crack. And statistics are no different. Heather will beat the odds and she will survive the beast.
A New Beginning: Posted on February 15, 2011
How can I even begin to share my pride for Heather's ability to tackle adversity, move forward, and hold her head high while doing so? Heather has battled so much in the last 2 years 10 months: her brain cancer diagnosis, her radiation and chemo regime, her weight gain from steroids, the loss of her job when the business closed its doors, the loss of her grandfather, the loss of a beloved family dog, Heather breaking off her engagement two months before her wedding, the loss of her grandmother, the loss of her Godfather, and her diagnosis of Graves' disease. Through all of these situations, Heather has found humor through her tears and fears. She lives with the belief that everything happens for a reason and people should not sweat over the stuff they cannot control. When I look back at these past years, months, and days, I see hope because of Heather. She remains my mentor. If she can face her adversity with such grace, I can continue to fight to make a difference. My weapon is Leap-For-A-Cure.
Fun Times Posted on March 15, 2011
We just returned from a wonderful family vacation. The memories will last a lifetime - and I think I will be paying for those memories the rest of my life as well We began with an overnight stay in Tampa because we did not want the weather to affect our sailing date on Sunday. Sunday morning, we boarded the ship, Ms Ryndam (Holland America), to begin our 7 days of luxury, relaxation, and fun. From Sunday to Sunday, we were pampered, we were overfed, and we laughed and laughed. As we packed, I remembered Heather's most recent MRI report / disk. We have been told to always bring the most recent "just in case," so even though I did not want to think about it, I brought it with us. Thank God we never thought about it again. From cave tubing in Belize, to ziplining through the jungle in Honduras, to a jungle "Rhino" ride in Mexico, we had fun on our excursions. On the ship we enjoyed the sun, sun, and more sun. And, Heather became a "Bingo Brat." She won twice; Michele once, Amy once, and I once Now, who can complain about that? If you have never had a hot-stone massage, you need to try it. However, do not be alarmed if one of the stones winds up in a "strange" plac. Our next trip will be to San Francisco early May. We are waiting 4 months this time as Dr. Chang is out-of-the-office mid-April. It seems sooooooooooooo long, but I know it will be OK to wait that extra month. Heather is doing well. She will be treated with radioactive iodine soon to treat her Graves disease, which has become a bothersome condition but a manageable one. Lastly, I want to thank the UNO Maverick Hockey fans for their 2011 support. We raised over $30,000 this year selling UNO Fury Flags, having a silent auction on UNO hockey jerseys, and on crowd donations. UNO fans have been one of our biggest supporters. But without the steady help from some very special people, we could not have done it! So to RyAnne, Robyn, Jeff, and Jean - THANK YOU for always being there. And of course thank you to the many others who help us throughout this event and other events. Until next time, God bless and good wishes of health and happiness to all.
Quick Update Posted on April 5, 2011
Heather made it through her radioactive iodine treatment and is as good as new! Once her thyroid is handled, she will be like millions who take daily medication for their thyroid. We have used this experience to once again find laughter in unpleasant times. Her diet sucked for two weeks, but she did it. She returned to work today. I really think our faith is stronger now, and I believe Heather is finding strength from so many sources - and her faith is one of those sources. As she says, "All things happen for a reason." If faith is one of those reasons, it is OK with me. Even though it is a bit early, mark your calendars for the 4th Annual Monster Bash. The date has been set: Thursday, October 27 at Georgetown Club. Planning begins soon! We head to San Francisco in mid-May, and I will post an update then. Sue
Graduation – Again Posted on May 11, 2011
Tis the season for graduations, and Heather is celebrating her own: She just graduated to every 4 months for her San Francisco check-ups. Woo-Hoo! I have a love/hate relationship with our SF trips. I absolutely LOVE the time Heather and I spend together. We always have our "fun day," and that day always fills us with laughter and funny stories. I absolutely LOVE the "high" we get when we are reassured that her tumor has not changed. And, I absolutely LOVE returning home to jump back into our normal routine.
On the other hand, I absolutely HATE the reason we go to SF. Enough said - the "hate" trumps the "loves." I remember we once met a husband and wife in SF. He was - and still is - a rarity in that he has survived Glioblastoma for 17 years. When we met them on the elevator, I remember thinking God placed us together so that this stranger could represent the message of hope for us. I have since heard from him and he is still a survivor.
Well, I feel that Heather and I were able to be messengers to another couple this trip. They were waiting to meet Dr. Chang - it was their first meeting with her. The wife has had two surgeries, has completed her radiation and her chemo, and participated in the Novacure trial prior to FDA approval. Her tumor returned and could not be completely retracted. So, they were sitting in Dr. Chang's office waiting for hope and a plan. Although we could not offer medical opinions, we could offer confidence and promise with Dr. Chang. We had an intense, yet friendly and supportive, conversation. Although we were in and out before they met Dr. Chang, I pray that we were able to provide a bit of hope and comfort just as we once received.
And, for some reason Heather and I were not seated next to each other on the plane from Denver to Omaha. When Heather switched with someone, she later realized she had been in the wrong seat. So, yes, Heather became "one of those people." Confusion is uncomfortable. Once we were all seated where we belonged, she had the option to move next to me, but she was embarrassed and decided to remain in her seat. Why did all this happen? Again, I think God works in ways we cannot imagine. Heather wound up sitting next to a couple from a small Iowa town. During the conversation, the woman told Heather about someone from her small town of about 800 who has been diagnosed with brain cancer. I think Heather has the ability to spread hope and optimism, so again she served as a message.
On another note: We are in the beginning stages of our Monster Bash planning. The date is Thursday, October 27 at Georgetown Club again. And, Chasing Daylight will be playing for the 3rd year. Please mark your calendars and plan to make October 27 a date!
Leap-For-A-Cure continues to support Brain Cancer Awareness. May is Brain Tumor Awareness month, and we are hosting a nation-wide Pamper Chef party. Proceeds benefit Leap-For-A-Cure in its effort to provide treatment support, education, and awareness. If you feel the need for some Pampered Chef, please support LFAC. Go to (1)www.pamperedchef.biz/shirleyfey (2) Click “Shop online.” (3) Enter “LFAC” or “Leap for a Cure” or “Sue Roberts” in “Option 1.” (4) Your online order will be shipped directly to your home. It is THAT easy! And it is safe!
The 3rd Annual Seth Embrey Memorial Bike Ride -"100 for 1" - will be in September. I will post more information soon, but PLEASE plan to participate. Whether you ride 5 miles, 10 miles, 20, or more, there is a ride for you.
As I begin to end this entry, I am so thankful that Heather and I took an early flight home. As a severe thunderstorm moves through right now, I don't think I would like being in the air bouncing around. I know that it's a mess out there right now. Thank you all for your thoughts and kind words. We are blessed that Heather is doing well and we can continue to be a happy family. Lives can change in the blink of an eye, but sometimes the changes can add new dimensions that offer positive twists. I'm thinking the positives always outweigh the negatives.
July 2011 Update: Posted on July 7, 2011
Looking at the title suggests things are going well for Heather. Physically and emotionally she is in "tip-top" shape! She has conquered Grave's disease, which sounds worse than it is. She is clinically surviving her brain tumor, which proves miracles happen. She heads back to SF to see Dr. Chang on her birthday in September. I believe she will receive the BEST gift of all: Status Quo.
Last week Heather reflected upon some of what she has learned in the past three years. First, she is stronger than anyone - even herself - ever suspected. I always told my children that it isn't what happens to us in life that makes us who we are, but it is how we handle what happens that shapes us. If that is true, Heather is a shining example of strength, hope, and promise. In the last three years, she has accepted her brain cancer as a war she will win, she was a model for living through radiation and chemo, she has battled and survived Grave's disease, she has found love and lost love, she has lost two grandparents with whom she spent a lot of time, she has lost a job and found another one, she lost her Godfather, and she lost her beloved pet. In addition, she is currently dealing with her ex-fiancé leaving town and stopping payment on the car she co-signed for him. Yep, he stopped payment on it, so Heather has the monthly payments for a car she does not have nor knows of its location because Mike won't tell her! And, that is the tip of the lies he has told to Heather, us, and others. Unbelievable! But in the end, she is surviving.
She is living. She is happy and gracefully moving forward. She is a better person - stronger to conqueror the world! She is ready to help with a support group for cancer patients at our church, which is a step forward for her. I'm so proud of her!
We are in the middle stages of planning Monster Bash 2011. Plans are going well, and I think Monster Bash 2011 will be the best yet! So, please mark your calendars for Thursday, October 27. More information will be shared later, but the date will not change. The doors open at 6:30. And please follow Leap-for-a-Cure on Facebook and Twitter. I’m in the process of updating the website, so hopefully I will get caught up soon! Thank you for reading and following Heather's Journey.
August 2011 Update: Posted on September 16, 2011
No news is good news on the health front. Heather seems to be doing well – no clinical signs of any changes in her tumor. With our San Francisco appointment right around the corner (September 13 to be exact), I always start to get jitters a few weeks out. Leap-for-a-Cure donated $50,000 to the Tissue Bank for Estabrook Cancer Center. We are proud to support such an important aspect of cancer care. The Tissue Bank will store tissue samples from all cancer types, but brain cancer will benefit as well. Dr. Long, Heather’s neurosurgeon, strongly supported such a donation. In three short years, LFAC has spent its donations on the following: the purchase of a Functional MRI (fMRI) and a StealthMerge (neurosurgical brain tumor software); has hosted Estabrook Cancer Center’s first Brain Tumor Symposium; and has donated $50,000 to the Tissue Bank for Estabrook Cancer Center. After a meeting with doctors and medical personnel last week, we have decided to raise more funds to update the intraoperative equipment in the surgical suites. This endeavor will take a lot of work and probably years to complete, but it is a crucial necessity to maintain state-of-the-art treatment. Trust me, once someone is placed in the unenviable predicament of cancer care, only the best will do! I am working on updating our website – again. My nephew has done an outstanding job with it so far, but I want to make it more user friendly and update the layout a bit. So, I’m taking training and hope to be able to present the “new and improved” website mid-September. I’m so excited. Please mark your calendars for the following LFAC fundraising events: (1) Tuesday, September 20, the Central High School volleyball team will be hosting a special game for LFAC. (2) Thursday, October 27 will be the 4th Annual Monster Bash. Please mark your calendars for this special family-friendly event. (3) Saturday, January 8, 2012 will be the LFAC Night at the Lancers, who will be playing the Lincoln Stars. (4) Saturday, May 19 will be our first “Walk and Bark for Brain Cancer” at Chalco Hills. Plan to bring your leashed fury friend to this run/walk. Specific information for each event – and any event added throughout the year – will be advertised on Facebook (Leap-For-A-Cure) and twitter (leapforacure). Please follow LFAC on those social networks. Special prayers to our friends who are battling brain cancer: Ryan, Evan, Brinkley, Kelsey, Jason, Matt, Colleen, Shirley, Bob, and Mike. Unfortunately, there are so many more, and I know there are so many who have lost in their brave fight. Remember, every three minutes someone is diagnosed with a brain tumor in the United States, and every hour someone dies from brain cancer. Please join us in our fight against this deadly disease. Sue
Music to My Ears: Posted on September 16, 2011
Who would ever think "no change" is a beautiful melody? Well, I do! I have two favorite phrases: "no change" and "tumor is stable." Our trip to San Francisco was crazy busy. We arrived a few days early and rented a car to dive up to Sacramento to see family. Heather enjoyed her visit with her two cousins Dayna and Adrian, her Aunt Karen, her two great uncles - Roy and Joe - and other family members. She even met three of my former elementary classmates whom we met for coffee. Then we headed back to San Jose to spend time with my other sister Jill and her family before heading to UCSF on Tuesday. Dr. Chang said we will have one more 4 months check and then we might be able to graduate to every 6 months. However, I let out a gasp, and she said, "or another 4 months." I have not become used to every 4 months yet! It is just very difficult. I want an MRI every day! Heather and I travel well together. We make certain to have fun and laugh. No one and no situation is exempt from our frolics - and mostly we laugh at ourselves. This trip added another funny story to our repertoire: I have what is called "post surgical" contacts. They are bigger, more expensive, and suck to the eye. They are sometimes difficult to remove. Well, I tried for three hours to remove my left contact. I pinched. I poked. I scratched. I even tried taking an eye plunger (which you are never supposed to do) to remove the contact. I thought that maybe the airplane had affected the contact suction. When the plunger stuck to my eye, Heather went crazy laughing and wanted to take a picture. I, on the other hand, began to worry about ever removing it from my eye. Yes, it looked funny. No, it wasn't funny - ESPECIALLY when I found out that my contact was back in Omaha! I never had it in my eye from the start. Long story - but my left eye is so bad I did not really notice. I usually see out of my right eye anyway, I think! Then on our way back to Omaha, an elderly man had what I thought was my seat on the plane. He had 9B, but I had 9B. I know those things happen, but his traveling companion looked at my ticket and told me I was supposed to be going to Eugene. Personally, I thought it was his lame attempt at being funny. So, I took my ticket and HOLY CRAP: It said Eugene! So everyone began thinking I was on the wrong flight and they kept telling me, "This plane is going to Omaha." When the flight attendant heard the commotion, she asked to see my ticket. She thought it odd that I got on the plane, but she was even more confused when she noticed my ticket said, "John Stone." All I could think about was that some poor John Stone was trying to get to Eugene on a ticket with my name and Omaha on it. Never a dull moment
Leap-For-A-Cure has a busy month ahead: Sunday 9/18 is "100-for-ONE" Seth Embrey Memorial Bike Ride; Tuesday 9/20 is Central High School Volleyball for Brain Cancer; and Thursday, October 27 is MONSTER BASH! As always, we are in the fight for more awareness, education, and support for all brain tumor patients and families. Hopefully, our voices are heard.
Monster Bash 2011: Posted on October 20, 2011
Wow, I cannot believe that our 4th Annual Monster Bash is almost here - in 7 days to be exact. We started last May with the first of many committee meetings. Having a committee has been fantastic! I love my committee! Monster Bash is a family-friendly event that appeals to everyone - from small children to adults without children present. There is truly something for everyone. I'm so proud of what the committee has put together this year: (1) Live Music with Chasing Daylight. Chasing Daylight is a fantastic local band, and we are honored that the band will be playing again this year. (2) Children's Corner - this is our 2nd year with this activity. When children come to Monster Bash, they have several options - face painting, balloon twisting, tattoo applications, coloring fabric treat-or-treat bags, games, and a Bounce House. All activities are included in the admission price! (3) Costume Contests - one for adults and one for children. With the support of Old Chicago, the adults costume contest winners will receive Old Chicago gift cards $100 (1st), $75 (2nd), and $50 (3rd). The children's contest winners will enjoy fun prizes as well: Splash- N-Stay for 4 at Coco Keys (1st), Aqua Racer (2nd), and Educational Calendar and $20 Mama's Pizza (3rd). (4) Fabulous food (taco bar). (5) Awesome silent auction items - from a Bernhardt Queen Platform bed to Halloween decorator plates - this silent auction has a lot to offer (NU/IA football package, Family Fun package, Birthday Party package, holiday decorative plates, UNO hockey season tickets, Dog package, Shooting package, and more!) (6) Raffle items - $1 for 1 or $5 for 6 - fun items from which to choose. So far, we have 22 contest items and they are all good! (7) Lancers! The team will be participating throughout the evening - from autographing posters to volunteering to mingling with the crowd. And, every person who attends Monster Bash will receive a game voucher to use in 2011. Love those Lancers! Admission is affordable: $25 pp and $15 for children 3 -10. All activities (including food and one drink ticket) are included. Additional drinks (beer, wine, soda, water) are $3. And, our sponsors are incredible: Baer Foundation, DARMCO McDonald's Corporation, Methodist Hospital Foundation, Omaha Lancer Hockey, Complete Security & Investigations, Control Services, KAT 103.7 (media sponsor), Union Bank & Trust Company, Vetter Foundation, Woodhouse Family Auto, Midwest Neurosurgery, PC, Nebraska Technical Services, Old Chicago Restaurants, Security National Bank of Omaha, THG Benefits. THANK YOU! All proceeds support Leap-for-a-Cure in its effort to benefit brain cancer awareness, education, and treatment in the Omaha community. The Omaha community has been generous to this cause: over $300,000 has been donated since July 2008. Because of this generosity, LFAC has been able to purchase a Functional MRI and a StealthMerge, host a Brain Tumor symposium at Methodist Estabrook Cancer Center, and donate $50,000 to the Tissue Bank for Methodist Estabrook Cancer Center. For questions, contact Sue@leapforacure.org or visit Leap-for-a-Cure (nonprofit) on Facebook. I better get back to working on Monster Bash. . . time is quickly ticking away!
A Good Day: Posted on November 8, 2011
It's been 10 days since Monster Bash, and I finally (I think) have everything under control again. Over 200 thank-yous have been written and mailed - almost. The last 20 will be mailed tomorrow. I wanted to meet and greet and thank everyone who attended, but that plan was soon put to rest. Then I decided to send everyone who attended or donated to Monster Bash a personal thank you, so I did. However, those who paid cash at the door unfortunately were excluded from that idea. But, I have tried to reach everyone. So, IF you were at Monster Bash and I have not thanked you yet - Please accept our sincere appreciation for your participation! With only a few glitches (my mistakes), the 4th Annual Monster Bash was a huge success. And, our committee has already met to make plans for next year's. We will wait until spring for another meeting, but things are already in the works
Heather is doing well. She had a virus of some kind this weekend and today, but other than the normal ups and downs, she seems to be doing very well. I was lucky enough to meet someone who attended Monster Bash who has the same situation as Heather: Grade 3 Anaplastic Astrocytoma. She, too, had surgery and radiation. And, thankfully, she is on year 6 of "stable." Ah, that beautiful word that I will never tire of hearing. S.T.A.B.L.E. Love it! Sometimes when no one is around, I often find myself weepy. I begin to think "what if the next time I don't hear 'stable'?" I can honestly share that I gasp and fight back tears. That sick feeling in my stomach tries to take over and my heart skips a beat. Just before I let loose with tears, I yell within myself: "STOP IT!" Stable is the only word I will accept - the only word Heather will accept. I am far too weak - and God knows that - to accept anything less. Then I follow with a silent prayer of thanks - surrounded with a bit of pleading. I thank God for all the blessings in my life and realize it is God who sent me to San Francisco. It is God who gave us our miracle when we needed one. It is God who will continue to hold our hands throughout this journey. So, I have nothing to fear.
I'm looking forward to a quick getaway in a few days: LA with my girls, a friend, and my sister and nephew. We will have such a good time visiting Wheel of Fortune, Jay Leno, Universal Studios, and attending the LA Kings hockey game. As a reminder to us all: Keep Heather away from Silent Auctions. That's how this trip was planned from the beginning. Just a reminder: January 7 will be Lancers / Leap-for-a-Cure night and May 19 is the first 5K9 Walk and Wag for Brain Cancer. And we are currently working on our annual UNO / LFAC night as well. More on those events later. Enjoy Thanksgiving 2011. I hope everyone remains thankful for all the goodness in our lives.
Thankfulness: Posted on November 17, 2011
How many times have we all read or heard, "For what are you thankful?" People are posting on Facebook all their "I am thankful for . . . " thoughts. TV hosts are asking people, "Why are you thankful?" And I have noticed contests for which people either video or write explaining why they are thankful. Yes, it is that time of year. Sadly, we should be thankful every day, but for some reason, it is THIS time of year that we seem to focus on it. So, today I am sharing why I am thankful. First, of course I am thankful for my family, our freedom, our blessings, etc. Beyond the obvious, if you know me, you know that I am so darn thankful for the word STABLE. And, I am so happy every time I hear it, especially in reference to Heather's tumor. Second, I am thankful for all the medical care we have been blessed to receive. There are so many "ifs" involved, but those "ifs" lead me to finding UCSF and Dr. Chang. Need I say more? But today I added another THANK YOU to my list. Heather has Grave's disease. Even though she has undergone successful radioactive iodine treatment and is now on her daily thyroid medication, she still has the bulging eye issue. Of course, I don't notice it much, but she does. For several weeks we have lived with the fear that her eye sight was in jeopardy and that extensive ocular surgery was inevitable. We were given 4 scenarios, and we lived with the preliminary diagnosis that suggested she had a combination of all of them. We were warned about the extensive surgery, about the weeks of missed work, about the icky details. And, we were scared. But today I am THANKFUL that we found out Heather does NOT have a combination of all the scenarios. In fact, the ONLY problem seems to be the bulging eyes - with no other related medical issues. Eye lid surgery we can do! If her eye lid can be lowered to cover the white of her upper eye, Heather will be happy and not so self-conscious about it. She has naturally beautiful eyes, so our wish is to have her appreciate them once again. My wish is for us to remember the little things in life that make us happy and not forget them when we count our blessings and identify for what we are thankful! Happy Thanksgiving everyone
Good Bye 2011; Hello 2012: Posted on December 23, 2011
As 2011 begins to see its final days, I often find myself reflecting on what the year will leave behind. It is so easy for me to sound negative, depressed, and basically like a "Debbie Downer" sometimes. That might be because in our "brain cancer" world, we hear many sad, frustrating stories. I meet so many people via the cyber world and follow so many journeys. In the end, I feel such a sad loss when some of our warriors lose their battle. A piece of my heart goes with them. On the other hand, there are also many stories to celebrate! So many are still in the fight - the fight of their lives - and they are winning - meaning they are still fighting. For clarification, brain cancer never goes into remission. Brain cancer never goes away. However, people can live with "no change" in a tumor. People have hope every time a new trial begins. And, brain tumor / cancer patients are warriors on many levels. Through trials and new procedures, patients help to pave the road to discovery for the newly diagnosed. So, there is much to celebrate! Our personal celebration is that Heather appears to be doing well. We head to UCSF to see Dr. Chang in January. I never want to take for granted what we have been blessed to hear for several years, but I am expecting the same: "No change." Positive attitudes, I believe, help to keep us healthy on several levels. And that is certainly true for Heather. I don't know of anyone else who has more positive thoughts than Heather does. She is filled with hope, future, and promise. She decided from day 1 that she will beat the odds. Between her focus and my nightly prayers, how can we lose? I think NOT! Our family is so blessed. We love to spend time together - mostly laughing. We truly are friends and family. We continue to plan family vacations, and we have some exciting ones coming up in 2012 and 2013. Other than adding another year m my age, I can hardly wait for some of those trips! So what will 2011 leave behind? The loss of two special people - little Brinkley and Robert Gibbs, founder of Miles-for-Hope. The biggest battle for little Evan, who needs a miracle beyond medical possibilities. (Side note: Evan just lost his battle.) And hope. Yes, hope. Hope that 2012 will be "the" year for a cure. Hope that those in the fight will WIN. As we celebrate this holiday, please take the time to celebrate your family's health. “He who has health, has hope. And he who has hope, has everything.” Happy Holidays and Cheers for the new year! Sue and family
Next UCSF Visit: Posted on January 14, 2012
Heather mentioned the other day that I had not written for a while. But I thought I had. So, I checked and sure enough, it was not posted. And, when I looked in the drafts, I had only saved the first sentence. I guess my tech skills are not as good as I thought. In fact, I'm taking another lesson next week because I have uploaded Monster Bash 2011 and Lancer/LFAC night pictures, but where are they? Somewhere within the dark abyss of this website. Last weekend (January 7), the Omaha Lancers hosted the annual Lancers/LFAC night. We are always so thankful for support; and I have to say, the hockey community has really done that. First, the Lancers ordered special jerseys for the auction. Second, Lawlor's ordered special "Hockey Fights Cancer" t-shirts. Third, volunteers helped distribute handbills and collect donations. Fourth, the fans donated, bought t-shirts, and bid on the jerseys. With everyone's support, LFAC added about $8,000 to its cause. Because we added the text option for donating, we won't know the exact amount for another month. But the evening was a success, and we are so grateful. THANK YOU Omaha (and anyone from another community) for all the support! To build on that good news, LFAC has been selected for a "Wear Yellow Nebraska" $2500 grant. I wish there was a way I could express our gratitude. Without ALL the support from SO MANY, we would not be celebrating as often and benefitting brain cancer patients as much. So, because I cannot think of something better to say, THANK YOU will have to do for now. As Heather and I ready for her next UCSF appointment, I remain positive that we will again hear "good" news: No change. As I have mentioned before, I think God knows I am too weak to hear anything else. I will never take good news for granted because I know all too well others do not get that news. But on Tuesday morning, Heather is the only person I will be thinking about and praying for - then it will be back to opening my heart and prayers for others. I hope that does not sound too selfish. Until next time.
No Change + Stable = Good News: Posted on January 27, 2012
Our whirlwind trip to San Francisco resulted in a wonderful "Funday Monday" followed with continued blessings: STABLE! Heather and I always go a day early so that nothing can interfere with making the early MRI and then doctor appointment. Because we go a day early, we have always created a "Funday" the day before her doctor appointment. Although we always go to San Francisco, we rarely actually experience it. This trip we completed a few fun experiences in the 7 square mile city.
First, we toured the Golden Gate Bridge. Heather hates heights, so getting her to walk across the bridge was not easy, But, she did. I had to laugh because as my sister and I were visiting, I looked up and Heather's head was down and she definitely had an extra pep in her step - only to get to the other side quickly. She did stop long enough for me to snap a picture or two though.
Our next adventure was to what we call "little Italy." There is no "Little Italy" in SF, but the colors on the lamp posts and the restaurant options suggest other. So, "Little Italy" it is. After spending over 30 minutes trying to find a parking place, we enjoyed our lunch at the Stinking Rose. Yum!
From the Stinking Rose, we headed to Chinatown. Our mission was to find the "naughty" fortune cookies. And, we did! But. . . they are really naughty, and we did not know that until we gave them to people. Oops!
Our final stop: Fisherman's Wharf for some small purchases. We found what my sister and I referred to as the "original" Fisherman's Wharf, so that was fun. Memories from many years and trips to the wharf brought laughs and smiles. Since northern California is my hometown, it is always fun to return and share memories. Although none of our adventures were "firsts" for me or for my sister - and actually, not for Heather either - every Funday brings new memories, new laughs, and lots of smiles. I enjoy our Fundays more than I can possibly share. So, this whirlwind trip was EXCELLENT for many reasons, and I'm so thankful for more blessings to add to my life.
Omaha Fashion Week: Posted on March 16, 2012
I have to admit; model and Heather are not usually used in the same sentence. However, next week Heather will be one of the Omaha Fashion Week models representing Methodist Estabrook Cancer Center. I'm not certain how many cancer patients / survivors will be participating, but I think about 40. What a tribute to each and every patient who has been through so much. Without a doubt, each model will bring his/her experience to the runway in a "fashionable" manner. When Heather was first asked to participate, she said "No." Size: 0. Height: 5'10". Weight: 100 lbs. None of those fit Heather. But once she learned that the models were going to be truly special, she reconsidered. Her only requirement: No heels! Next came the call from an Omaha World-Herald reporter. Unexpectedly, she grabbed his attention and suddenly. she was asked if a story about her journey would be OK. That story is planned to appear in Monday's edition (3/19). I will post the link on Monday. Of course, we are so proud of Heather who continues to sparkle. Her unwavering commitment to beating the beast is motivation for all. To have her father attend a fashion show is testament to that! Besides that fashion show, I have to reflect upon the "Frog Fling." Once again UNO hockey and the Omaha community supported LFAC in grand fashion. I will have the video on the website soon (I need help doing it); however, the website for the video is the following: mms://media.bestcare.org/Marketing/LFAC Frog Fling.wmv Without our volunteers, fan support, UNO, and Methodist Health System Marketing, the event would not have been so successful. So, THANK YOU to ALL!
Modeling a Will to Live: Posted on March 18, 2012
As I mentioned in my last post, the Omaha World Herald featured a story on Heather in Sunday's (3/18/2012) paper. I'm not certain how long the link will be active, but currently the following link will direct readers to the story: http://www.omaha.com/article/20120318/LIVING/703189952/0#survivors-model-will-to-live Yes, we continue to be proud of Heather and her amazing outlook. We have heard from so many - many of whom are new "friends" to our mission. Thank you for all the positive comments, phone calls, and messages. In one week Heather will undergo another surgery, but this time for her eyes, not her brain The eye surgery is a result of her Grave's disease and is not "life threatening." However, because she has to remain awake during the surgery. she thinks it could become just that! Heather and her sister Amy will be front row on the April 14 Saturday Night Live! Amy was able to secure AWESOME tickets from a wonderful woman whom I was able to meet and thank while in Park City. While the tickets may not be anything to some, to Heather and Amy, these tickets are a "once-in-a-lifetime" experience. Both girls LOVE their SNL! And, they will be attending the SNL after-party as well. Yep, I expect tons of pictures. So why is this in the same paragraph as the eye surgery? Well, Heather will have two back and blue eyes as well as a swollen face for this "once-in-a-lifetime" experience. Her pictures should be awesome. Again, thank you for all your support. It means so much to all of us! Sue
SNL and More: Posted on April 15, 2012
A very exciting weekend for Heather and her sister Amy: NYC and SNL! Amy scored SNL super tickets - meaning front row and backstage tickets - and she invited Heather to share in the experience. As Heather and Amy checked in for SNL, Heather received a note from Jason Sudeikis who said he is honored to meet her and invited her backstage after the show! (Side note: Heather thinks that sometimes people look surprised that she looks "normal" yet has brain cancer. She said she thinks Jason Sudeikis was expecting a frail person.) April 14 found the two of them having a blast with the cast and watching first-hand the "live" part of SNL. Heather is now on her flight back home with memories and pictures to share. Can't wait!
Heather's eye surgery a few weeks ago for her Grave's disease went well. Woo-Hoo! In fact, when she went for her one-week check, the surgeon said her recuperation looked like a six-week recovery. All restrictions were lifted and now she is waiting for the scars to heal. No more swelling. No more black and blue. With all that the situation could have been, she was very lucky. Darn Grave's disease.
Omaha escaped the severe weather that hit other areas last night. So sad for many but very thankful Omaha was spared. I feel as if I am constantly thanking God for so much. Heather's diagnosis is 4 years this month. It is difficult to believe that she has been through so much in 4 years: brain cancer, surgeries, a lying fiancée, death of a grandfather and a grandmother and her Godfather, Grave's disease, a new job, insurance battles, and so much more. But even she will admit that she has so many blessings: survival, an EX-fiancée, great memories of her grandparents and Godfather, eye surgery that could have been more serious, a job, insurance, and so much more. As I have mentioned many times, she helps to keep us all in check with what is important, which leads me to the following story. “Treat each day as a celebration!”
I found myself sharing that with a woman whom I will never see again. As we both were in the waiting room during outpatient surgeries for family members, I noticed her sitting alone, but with a look suggesting she wanted to talk. So, I went over to her and made small talk. What we had in common – sort of –was that her husband has the same scar on his head that Heather has. It was obvious he, too, at one time had a craniotomy. I did not realize it was so fresh – just 2 ½ weeks from surgery. But she shared so much more. In the last three weeks, they found out he has lung cancer and colon cancer, and one of those had spread to his brain. All I could do was listen to her. I suggested she take advantage of the many services found through Harper's Hope at Estabrook Cancer Center and then suggested she “treat each day as a celebration.” She repeated that over and over. When I left, she again repeated “treat each day as a celebration” and thanked me for listening to her and for giving her such good advice. I’m not certain what I offered was such great advice, but I am certain that each day IS a celebration of life and that sometimes I forget that. I waste too many days. So, I plan to take my advice and “treat each day as a celebration” and thank God for His gifts because I have so many.
FYI: Leap-For-A-Cure's first K9 Bark and Walk is scheduled for Saturday, May 19 (weather permitting). For more details, check on our events tab, on Facebook, or email me at email@example.com. And, Heather's next UCSF appointment is May 23. Please pray for continued good news. Thank you for all the prayers and continued support.
May: Posted on May 28, 2012
It's Memorial Day. First, thank you to ALL our troops who have fought and to those families who have paid the ultimate sacrifice. Our freedom is costly, and we often forget that. And we need to stop taking freedom for granted. Second, thanks be to God for another "stable tumor" report for Heather. We are always anxious before our SF trips, but this time we were scared. Heather has been having some headaches and slight dizziness for about a month. At one point I asked her if she wanted an MRI here in Omaha, but she declined. She had some fun things coming up and she did not want to ruin anything by knowing "something' could be going wrong. So, we waited. But as we approached our SF appointment, my nerves were working overtime. Sleep became more than usual restless. Then it was time. Even during Heather's MRI, she had a headache. So, the short wait became almost unbearable. When we heard, "Everything looks good. No change," I almost cried. Heather and I had a moment of shared relief that no one else could understand. So, the headache culprit? Probably allergies! This year is uncommonly bad for allergies, and even those who do not usually suffer from them are - and Heather must be one of them!
We celebrated Brain Tumor Awareness month with our first "K9 Bark and Walk for Brain Cancer," and the success was overwhelming. With over 150 participants and nearly $9,000 raised, we will host another "K9 Bark and Walk" next year. We learned a lot about hosting a walk, so next year will be even better - providing the weather cooperates again. Thank you not only to the walkers and their well-behaved dogs, but also to ComeSitStay, Petco, Mark Kresl Photography, The Green Spot, Key-to-Omaha, Smart Betty Omaha, No Frills Supermarket, Boy Scout Troop #408, LFAC volunteers, Great Plains Pointer Rescue, and Pugs Rescue Omaha. Leap-For-A-Cure truly appreciates all the people and businesses who helped to make the walk a success. Pictures will be posted soon and are currently on our Facebook page. Finally, on this beautiful day, I again thank those who have served and those who are serving and those who will be serving. Without you, we might not be able to enjoy days like today.
Clichés: Posted on June 26, 2012
Cliches - I hate to use them, but today's entry will be filled with clichés. First, yesterday brain cancer took the life of a wonderful man: a husband, father, son, brother, uncle, and friend to many - Ryan Fawcett. As a Sarpy County Sheriff, Ryan protected and served. As a husband and father, he protected and served. As a son, brother, and uncle, he protected and served. And when he entered our lives, he protected and served Heather - even though he probably never realized how important he was to our lives. We were not close friends - we just met him 4 years ago. However, his profound influence on our lives measures much longer. Ryan was the first person we met on our journey, and he remained hopeful, positive, and genuinely unselfish throughout. His attitude helped to mold how Heather has faced her personal war. So, Brain Cancer, you may have won this battle - taking Ryan - but you will NOT win the war. A cure will be found before you win too many more battles! Rest in peace, Ryan. It is our turn to protect and serve. I know I focus on brain cancer, but ALL cancers are scary.
The old saying, "Together We WILL Win" is true. I think of cancer as the rude neighbor everyone wants to evict. Or, think of it as "It takes a village to raise a child." We HAVE to work together to find a cure. When I learned about an "old" friend of Michele's (Joel) whose wife (Ginger) has just been diagnosed with breast cancer, my heart fell a bit. Oh, how I pray that THIS IS the year for the cure! Sometimes I believe things happen for a reason. I learned of Ryan's passing yesterday. I learned of a friend's brother passing yesterday. It was Michele's birthday yesterday. It was my nephew's birthday yesterday. Many emotional ups and downs yesterday - that is for certain. Then I read an uplifting email I received. I needed that email! Without sharing names (because I do not have permission to do so), I will share the email: "It was in my Junior year at Millard North that I became aware of your grassroots Leap-For-A-Cure organization helping to raise not only awareness but support for those affected by brain tumors. Now, almost four years later, Leap-For-A-Cure has become an invaluable resource for myself and many others in my life. In October of 2011 my roommate’s father was diagnosed with brain cancer that needed immediate treatment. It wasn't long after that I learned my closest friend, only 19 years of age, had been diagnosed for a second time with brain cancer. Even though we live over 500 miles away from Omaha, Leap-For-A-Cure has offered me many resources in not only researching and learning more about brain cancer but also how to offer support to my friends, even though the scariest of times. Your blog updates are such an inspiring message of hope and I am so happy to hear that Heather is doing well and living such a "normal" life full of so much support. Thank you for all that you have done and continue to do to touch the lives of those affected by brain cancer and move forward in treatment, awareness, and research." I needed that yesterday! Thank you!
Just a quick update on Heather: She had her appendix removed early June. Although the appendix was "gangrenous with diverticulum and acute serositis," she managed to heal quickly and was back to work in a week. As Heather said, "I am so lucky." And she is - we all are. Today I say thank you. Thank you, Ryan for being the perfect role model for Heather. We will miss you, and Heather will continue to carry your strength. Thank you "former MNHS student" for the email that could have not come at a better time. And thank you to everyone who continues to keep Heather in their prayers.
Blue Day: Posted on July 31, 2012
Today is what I call a “blue” day. The sun is shining and it is hot outside, but I can’t quite grasp the joy in it. I know that sounds pathetic, but it is what it is. Jon and I spent the weekend in Chicago visiting my step-brother, who is blind and living at Friedman Place (a home for the visually impaired) and attending the American Brain Tumor Association’s annual Brain Tumor Conference. We were so thankful that we could attend the conference while also attending to other responsibilities. Every time I leave Friedman Place, I thank God for so many blessings. Living a life without eyesight has so many challenges, and I too often forget about others’ needs. And while I am so appreciative for what I have, I am still battling with what I don’t have: a perfectly healthy child. This weekend brought hope, yet realism. Looking around the conference, I realized EVERYONE had a story. EVERYONE had been affected by brain cancer. Young. Old. Black. White. Rich. Poor. Brain Cancer does not discriminate!
Of course, I knew that before this weekend, but I actually SAW it in action for the first time (a twist of irony considering my other task in Chicago). Fear, Anger, Optimism. We experienced all emotions this weekend. Some people are living in fear: “How long will I have with my children?” Some are angry: “Why is there no cure? Why are people not talking about MY cancer?” And then there was hope: “I believe I am going to beat this diagnosis.”
So, why am I blue today? Well, I don’t really know. Our family has always fallen into the HOPE category, and that has not changed. We believe Heather IS going to beat this beast. We believe a cure – or at least an improved treatment plan – is just around the corner. I think, however, that I can’t forget the others that I experience: fear and anger. Fear. I am scared. I have been scared every day since April 2008. Anger. You bet I am pissed. I am angry that Heather’s new normal will always include brain cancer since part of her tumor is still in her head. I am angry that Heather has to overcome the side effects of this beast. I am angry that funding is low for brain cancer. I am angry that I have to live with this disease again in my life. I am angry that too many people have lost their battle with it. My anger list is apparently long.
But I am Thankful. I am so thankful for all the support we continue to receive. I know Heather is on so many people’s prayer lists. I am thankful for Dr. Susan Chang and all the other experts who believe in the need for updated brain cancer treatment. I am thankful for Heather’s desire to swim rather than sink in this battle. In fact, Heather created a t-shirt that reads: "I made cancer MY bitch!" I am thankful for the love and support of my family – Jon, Michele, Amy, and Heather – as we all share in this fight. Our bond is strong; our fight solid. So, I think I will look at this day a bit differently now. It is not a blue day of sadness; it is a blue day with sunny skies and the sun's warm blanket (although we really need rain!). It is a great day to enjoy as every day is a blessing!
San Francisco Bound, Again: Posted on September 20, 2012
It's six days out from Heather's next SF appointment, so my anxiety is working overtime. While I know we will hear "stable" again, I always think the "what if?" But, I also know that I can live with the anxiousness I feel as long as "stable" hits ours ears - FOREVER! Yep, that's my plan. Live with the uneasiness every 4 months for the rest of forever and hear the word "stable." We can do that! Unfortunately, Heather has another cancer battle on her hands: her beloved dog Sky has nasal cancer and will begin her chemo treatment tomorrow (Thursday, September 20). For some people, this may seem crazy. But Sky is Heather's partner and has supported her through everything, so Sky is her constant companion. We hope that first, Sky can tolerate the chemo; and second, that the treatment will work and give the two more time together. As Heather and I always do, we think of a "fun day" the day prior to her Dr. Chang visit. This trip will be no different; in fact, we have added some extra days of fun. We are Park City bound to see Amy for a few days and then San Francisco for a Giant's game before the doctors' appointments.
Monster Bash (Thursday, October 25) is fast approaching, and I think we are on track. Invitations have been mailed and responses are arriving daily. Our sponsorship list grew by two this week, and we are so honored for all of them: Affordable Closets, Baer Foundation, Home Instead, McDonald's/DARMCO Corporation, Methodist Hospital Foundation, Mid-Continent Irrigation, Inc., Midwest Neurosurgery, P.C., Milio's Sandwiches, Nebraska Technical Services, Omaha Lancers Hockey, Ragazzi’s Pizza, Security National Bank, The KAT 103.7. THG Benefits, Trade “N” Post, Union Bank & Trust, and Vetter Health Services. THANK YOU! This year we have added a magician who will travel from table to table entertaining guests while our favorite band, Chasing Daylight, is playing. And once again, The KAT 103.7 DJ EJ will emcee the event. The usual Children's Corner - with games, face painting, balloons, crafts, and bounce house - will keep the little ones busy before the children's and adult costume contests. The photo booth will be available from 6:30 - 9:30. People will once again enjoy a nacho bar and drinks ($2 beer and wine). Dessert has been added this year thanks to a wonderful donation. And as always, we have a list of great raffles and silent auction items. Monster Bash is filled with fun - for children and adults - so come and join us for a great evening and support a great (and personal) cause: Brain Cancer! Doors open at 6:30. Tickets are only $25 for adults; $20 for children 3-12. Hope to see you at Monster Bash 2012: Georgetown Club, 2440 S. 141 Circle, Omaha, NE.
Hip, Hip, Hooray! Posted on September 28, 2012
Quick update: MRI = Stable tumor. Our San Francisco trip was awesome! We are so blessed with this news. Every 4 months brings a new level of anxiety, but as I have said many times: I can live with it as long as I hear the word STABLE! Our trip to Park City, Utah was so fun and beautiful this time of year. Heather and I had a wonderful time with Amy, her boyfriend Geary, and her two special 4-legged companions Boston and Stanley. Between hiking for moose, hiking for nature's beautiful fall colors, and shopping, our trip was packed with fun memories - and a new suitcase to load up our new and unexpected purchases. San Francisco added more fun with a Giant's game and Fisherman's Warf. And of course, the best part of the trip: STABLE! Now, we are putting on the finishing touches for Monster Bash.
Once again, I want to thank all our sponsors: Monster Level sponsors: Baer Foundation and Mid-Continent Irrigation, Inc. $1000 Spook Level sponsors: McDonalds/DARMCO Corporation and Methodist Hospital Foundation $500 Ghost Level sponsors: Home Instead, KAT 103.7 radio, Nebraska Technical Services, Union Bank & Trust, and Vetter Foundation. $250 Goblin Level sponsors: Affordable Closets, Midwest Neurosurgery, PC, Milio's Sandwiches, Omaha Lancers, Ragazzi's Pizza, Security National Bank, THG Benefits, and Trade N Post Along with our sponsors, MANY local businesses have donated raffle and silent auction items. I will share all of those businesses once we have all items collected. Celebrate life, family, and friends. Be grateful for every day - we certainly are. And, mark your calendar for the 5th Annual Monster Bash on October 25!
Thanksgiving: Posted on November 13, 2012
In less than two weeks, Thanksgiving 2012 will be here. Turkey. Dressing. Potatoes. Green Bean Casserole. Watergate Salad. Yes, the traditional dinner. It's actually the same dinner we have for every major holiday. Our family has few "must haves," but that dinner is one of them. Another "must have" is to share our thanks because no matter what, we are blessed. One "thanks" I have this Thanksgiving is that we are still celebrating our September "stable" news. What could be better? Another "thanks" I have is the solid family we have. We love to travel together and build memories. Simply put, we laugh, cry, celebrate - all together. The list can go on and on, but I think my family and Heather's stability is more thanks than many have. For that, I am very thankful!
Monster Bash was a success, raising over $30,000! We are so grateful to Chasing Daylight who reunited for Leap-For-A-Cure. Such an honor! (Another "thanks") along with Chasing Daylight, there are sooooooo many that helped to make this year's event so successful. All the sponsors, the donors, the attendees - THANK YOU! The Monster Bash committee - WOW - such a great team! THANK YOU! And the volunteers - without them, I'm not certain what we would do. Even though that night is always a blur for me, I know that so many make the night flow. In just a short 6 months, we will be begin planning for Monster Bash 2013 - the 6th Annual Monster Bash!
Amy, Heather, and I just returned from a quick 48-hour NYC trip. So fun! Central Park. Shopping. Eating. More Shopping. Saturday Night Live. Even had fun when Heather's contact popped out of her eye during rush hour on the subway. Yep. Nothing like finding it on the floor. Yuck! Lots of sterilization later, the contact was good to go. And of course, being scammed by the "Hat Man" makes a person feel quite dumb but adds to our memories.
is doing well. Her dog Sky is struggling. Sky has been her loyal companion for 12 years, and sadly she is battling her own cancer. Sky is taking her chemo, but it may not be working. A rescue dog, Sky found all the love and patience she deserved when Heather met her at the Humane Society. After living in two abusive homes, Sky entered Heather's life a little "messed up." But Heather proved her love and the dog learned to trust. I'm hoping Sky's chemo works, and the two have a few more years together.
Currently, my sponsors and pictures on this website are not up-to-date. I'm frustrated because I keep forgetting how to do it! I thought I had everything in order, and then. . . BAM. . . . NOTHING! Whatever made me think that doing the same thing over and over again would work, I have no idea. So, tomorrow is my day to figure it all out, or I'm back at class - AGAIN - learning the same thing I learned the last time I was there. Enjoy your Thanksgiving and celebrate the "thanks" in your life.
2012 Blessings: Posted on December 18, 2012
As 2012 begins to end, recapping Heather's year seems appropriate. We feel blessed again this year because Heather's tumor has remained stable. We measure everything on that gift! But there are other celebrations that bring joy as well. A winter cruise with awesome experiences, memories, and laughter. Watching Heather mingle with the sea turtles and swim with the dolphins certainly offered fabulous photo-ops! A fall trip to Bora Bora added to those photo memories. Swimming with stingrays and sharks was the highlight for all of us. And watching Heather drive a jet ski like a crazy woman - well, I laughed but did not ride with her! Her sisters are saints as they took turns as her passenger.
Leap-For-A-Cure continued to make a difference in 2012. Our May K9 Bark and Walk was such a success that we are planning the 2nd K9 Bark and Walk for Brain Cancer. Please plan to attend - with or without a canine. More information will be posted on FaceBook, on Twitter, and on this site soon. Another success? Monster Bash 2012! The Monster Bash committee is one of the reasons for such a great event. So once again, thank you Kathy Baer, RyAnne Hastings, Nick Heinrich, Jean Koerten, Michele and Heather Roberts, Robyn Sitzman, and Darbi Warden. Another reason for a successful Monster Bash? Our sponsors! Please note the sponsors at the bottom of all pages on this website. Thank you. Some upcoming LFAC events: January 19 at Ralston Arena: Omaha Lancers/LFAC night. Come support the Lancers and LFAC! Plans are in the works and final plans will be posted on FaceBook soon! March 3 at CenturyLink Center: UNO Hockey/LFAC night. Meetings have just begun for that night, so details will be announced later. Saturday, May 18 at Chalco Hills: 2nd annual K9 Bark and Walk for Brain Cancer.
So many times I hear myself say, "Don't sweat the small stuff" or "There are far worse things that could happen." I know I drive my family and friends crazy, but I truly do believe it. But my friend sent me the following, and it sums up exactly the way I see the world. Please hug your family and share your love with them. Make memories and laugh together. And, read the following:
A professor stood before his philosophy class and had some items in front of him. When the class began, he wordlessly picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was. The professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was. The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous ‘yes.’ The professor then produced two Beers from under the table and poured the entire contents into the jar effectively filling the empty space between the sand. The students laughed. ‘Now,’ said the professor as the laughter subsided, ‘I want you to recognize that this jar represents your life. The golf balls are the important things—-your family, your children, your health, your friends and your favorite passions—-and if everything else was lost and only they remained, your life would still be full. The pebbles are the other things that matter like your job, your house and your car. The sand is everything else—-the small stuff. ‘If you put the sand into the jar first,’ he continued, ‘there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff you will never have room for the things that are important to you. Pay attention to the things that are critical to your happiness. Spend time with your children. Spend time with your parents. Visit with grandparents. Take your spouse out to dinner. Play another 18. There will always be time to clean the house and mow the lawn. Take care of the golf balls first—-the things that really matter. Set your priorities. The rest is just sand. One of the students raised her hand and inquired what the Beer represented. The professor smiled and said, ‘I’m glad you asked.’ The Beer just shows you that no matter how full your life may seem, there’s always room for a couple of Beers with a friend. From our family to yours, Happy Holidays and Happy 2013!
On the Road Again: Posted on January 20, 2013
A short four months ago we were in San Francisco, and we can't believe it is "that" time again. On Tuesday Heather and I leave for her UCSF appointment, which is on Wednesday. If the airlines would cooperate with timing, it would be a bit easier. Frontier quit flying into San Jose, the airport we use because my sister lives there and San Jose is about 50 minutes from SF. So, we switched to Delta. Now, Delta has changed its time schedule and we cannot get back to San Jose in time to catch the last flight out on Wednesday. So, Southwest it will be with a longer flight pattern so a later arrival home. Oh well; our stop is in Las Vegas
We continue to meet some wonderful people on our journey. Some I only meet via the computer and some we actually meet in person. Two occasions this past week offered such opportunities. We are always amazed at everyone's journey. Each has a story to tell and a nightmare to live. And today in church, I learned of two more people with a brain tumor! What is going on? This past weekend LFAC had its first 2013 event with the Omaha Lancers. This local USHL hockey team is awesome! The entire office has supported LFAC since the beginning. Heather used to work for the team, and the organization has continued supporting her and LFAC's efforts. Ben Robert, the owner, even shared at another event that LFAC will always be #1 with the team. Honestly, that means so much to Heather, our family, and LFAC. With the special LFAC hockey jersey auction, the 50/50 raffle, donations, and t-shirt sales, LFAC raised over $12,500 in an arena with 3500 people. Thank you, Omaha Lancers! To tag on that above thank you, I have to mention the volunteers who helped LFAC - AGAIN. I swear, we are so lucky to have such good friends and supporters. First, to our friends Jean, Jeff, RyAnne, Robyn - THANK YOU for always being there. Then Darbi and her family and Liz and her family - THANK YOU for always stepping up and helping. And your children are the best little helpers ever! And to Miss Omaha, Miss Douglas County, Miss Douglas County Outstanding Teen, and Miss Omaha teen - THANK YOU. These young women volunteered on their own without anyone asking. And last but not least to Heather's good friends Mallory and Brett, Angie and Dave, and Ashley - THANK YOU! Your efforts helped to secure donations and 50/50 Raffle participation. And a special thank you to Hockey Stick Putters who donated an LA Kings Stanley Cup Putter for an auction. Without volunteers, no event would be successful.
LFAC just announced its next purchase: A SteathMerge upgrade. This $300,000 upgrade purchase is close due to a matching sponsor gift. LFAC is about $15,000 short of the necessary $150,000 required to meet the matching funds. WOW! Anything that can help ONE person is worth every penny. So, as Heather and I head to San Francisco to prayerfully hear the word "STABLE," we continue to think about and support everyone we meet on this journey. We may face bumps in the road along the way, but we have faith that nothing will stop us. Heather remains filled with positive energy and appears clinically free of any problems - other than her "normal" issues The LFAC upcoming events are March 1 (UNO/LFAC night); May 18 (2nd Annual K9 Bark and Walk for Cancer); July (date unknown, but a Bar-B-Q cook-off is being planned); and October 24 (6th Annual Monster Bash). Mark your calendars and follow Leap-for-a-Cure on Facebook for details.
Oh, How We Love Stable! Posted on January 31, 2013
Yes, that is correct. "Stable" was the word of the day on Wednesday, January 23! In the words of Dr. Susan Chang, "You cannot ask for a better scan." True, but I want to scream at the tumor in that scan, "YOU, Mr. Tumor, will NOT win this war!" As we always do, Heather, my sister, and I have our "Fun Day" prior to the appointment. And, FUN DAY it was. Off to Capitola Beach (next to Santa Cruz) for a little dining on the beach at Zelda's and shopping. We have not been there for a while, so it was fun to return and find our "favorite" shops. The weather was a perfect sunny 70+ degrees. We laughed as we remembered the first time we took Heather there. She was on steroids, a little on the "heavy" side, and hungry nonstop. All she could think about was getting cookies from the bakery. Times have changed - no cookies but lots of other shopping We had our celebratory strawberry margarita and then worried about jinxing the tradition with a "before appointment" one. But, the strawberry was not good, the bartender agreed it was awful, so we traded for another drink. I take that as a sign NOT to celebrate before the appointment.
Our return flight had a layover in Las Vegas. If you know Heather, you know the slots were calling her. However, after losing our $20 limit, we sat to enjoy our quick trip. In 3- hours we had landed in San Jose, traveled to Santa Cruz, visited San Francisco, and were now sitting in Las Vegas. Fun! And the best part - STABLE! As we continue to celebrate our good news, we know that 500 people will be diagnosed TODAY with a brain tumor. We know that every hour someone dies from a brain tumor. And we know there are 600,000 people living with the beast. We pray that this is the year for a cure.
Sky, Heather’s Beloved Companion: Posted on April 1, 2013
As parents, we try to protect our children from suffering and disappointment. To that, I have failed. In the last five years, Heather has endured more than her share. Yes, we are blessed that she will be a five-year survivor later this month. Enduring a brain cancer diagnosis should be enough for one person, but along with brain cancer, Heather has faced obstacles that may have made her wiser and stronger but has also put her in the “not fair” category. First her diagnosis. Two craniotomies. Daily radiation. Eleven months of chemo. Steroids. A year of physical and occupational therapy. Constant (and costly) MRIs for the rest of her life (every four months). Left side deficit. And a stupid tumor that is thankfully STABLE. Next – and not in chronological order because some overlapped – a failed engagement that came along with bills that Mike McCreary left her to pay. Many don’t realize that when he skipped town with his new girlfriend, he owed Heather over $10,000. Now, that may not sound like a lot, but for someone who is budgeting for medical bills, it is! And, this is money HE owed, not Heather. (Remember the wiser part from paragraph #2?) But in Mike’s typical lying character, he ran instead of being responsible and honorable. Once he was out of her life, she could rejoice in knowing that calling off the wedding was the best decision she could have made. However, that did not mend her broken heart at the time. Nor did it pay her the money he still owes her three years later! When her place of employment closed its doors and Heather was out of work, she did not waste time finding a new job with medical benefits. While others may have taken time to lament “Why me?”, Heather wasted no time in applying for positions to begin a new career. Within three months she was hired and moving forward once again. Heather also learned she has Grave’s disease. Although the name sounds worse than the actual disease, it still caused eye problems along with the need to “kill off” her thyroid. But that diagnosis did not deter Heather from facing the situation in a positive light. She just thought of it as another hurdle to clear, and she did. Throughout the last five years, Heather has been the beacon of hope for us all. She has been strong and determined to win her war with brain cancer. Humor has helped with her mission, and grace has been her road map. But she has also experienced losses. While facing her own cancer diagnosis, she lost two grandparents: Grandpa Roberts and Grandma Swinney. Both losses were difficult for all of us. She lost Ryan Fawcett, who was her mentor on this journey. She has met and lost Nathan W., Mike L., Rick S., and others. And she has met survivors: Angela J., Matt M., Coleen K., Caleb G., and others. Through it all, Heather has been “Heather,” keeping her positive outlook as her first line of defense.
But now, as she has to say “good bye” to the one constant companion through it all – her beloved Sky – I fear she may crumble in despair. Cancer has taken Sky from Heather – and our entire family – and it is not fair. Any other disease would have been bad enough, but cancer? Heather fought for Sky – all the chemo treatments, tests, medication, etc. She fought for Sky when she rescued this dog from two previous abusive homes. She gave Sky a loving home and demonstrated the patience needed to teach Sky love and trust. Sky returned the love with dedication and loyalty. Heather did what she could to save Sky, but it was not enough. Just as my love for Heather is not enough to save her from this heartache. I have failed to protect her from life’s cruel twists. So as we begin to celebrate Heather’s 5-year survival mark, we have to let go of Sky. As Leap-For-A-Cure prepares for its May 18th Annual K9 Bark and Walk for Brain Cancer, Heather knows Sky cannot be with her. But she also knows there are other dogs like Sky who need a loving home and the opportunity to trust again.
In honor of Sky, please join us in the 2nd Annual K9 Bark and Walk for Brain Cancer and visit the five canine rescue groups who will have special dogs available for adoption. When: Saturday, May 18, 2013 (registration begins at 12:00; walk begins at 1:00) Where: Chalco Hills, Omaha, NE Contact firstname.lastname@example.org; visit Leap-for-a-Cure on Facebook; or check out the “Events” link on this website for more information. Until next post, please keep Heather and all cancer patients in your prayers.
Five-Year Celebration: Posted on April 24, 2013
Putting life's challenges in perspective: On Thursday, April 17, 2008, an MRI revealed that Heather had a brain tumor. On Thursday, April 24, 2008, surgery proved her tumor was brain cancer. FIVE YEARS later, Heather is a survivor living with her STABLE tumor! With celebratory strawberry margaritas later today, three cheers for our girl! We are blessed. Just a quick reminder: Join us for the 2nd Annual Bark and Walk for Brain Cancer on Saturday, May18 at Chalco Hills (Omaha). Registration begins at 12:00; the walk begins at 1:00. Five canine rescue groups will be there sporting their beautiful dogs who are in need of "forever homes." Great family event - even though KGOR's Lucy Chapman will be walking NAKED to support brain cancer awareness! LFAC accepts pooches and donations of all sizes! Check out our "events" tab for more information. Or, contact email@example.com. Hope to see you on Saturday, May 18!
Spring Has Sprung – Finally! Posted on June 1, 2013
If you live in the Midwest, you understand the title of this entry. And as I sit to write, I am listening to CNN and the new tornado hitting Oklahoma. The fear must be unbearable for those who lost so much just a short time ago. So what do we learn from such tragedies? So many need our prayers and support. And, I am reminded to be thankful for what is really important in life. With that said, I am also reminded that Heather and I head to UCSF next week. I never want to be complacent - always knowing our journey could easily take an unwelcome turn. However, physically Heather is doing so well, she is happy, and her personal life is going well. Heather has met someone and has opened her heart again. Andrew is so good for her and treats her as she deserves. Not long ago, Heather commented that she now understands what a healthy relationship is and appreciates being able to experience one. Welcome, Andrew
Leap-For-A-Cure hosted the 2nd Annual Bark and Walk for Brain Cancer on May 18. We were humbled once again: over 200 walkers and $13,500 donated. We lost dog count somewhere during the day. LFAC now has its own "Harlem Shake": http://youtu.be/RySuT0OxazQ We had five canine rescue groups sharing their available rescue dogs: Basset and Beagle Rescue of the Heartland; Golden Retriever Rescue in Nebraska; Great Plains Pointer Rescue; Northern Plains Boxer Rescue; and Pug Partners of Nebraska. If looking for your "furever" friend, please check out a local rescue group. So the day was good, the people were great, and the dogs happy.
Speaking of rescue groups, Heather fosters Carter. Poor Carter - well, not "poor" anymore. Rescued from Illinois, Carter came to Omaha seeking a loving home. Heather just happened to be available to offer him food, love, safety, etc. Carter's life has not been easy - broken pelvis, scars, starved to name a few. However, he has gained at least 15 pounds and his coat is much better. His tail never stops wagging. Seriously! He has learned to use a dog door and loves, loves, loves Heather! Yep, I think she will be a "foster failure."
Again, as I celebrate the good in our life, I am listening to the devastation and fear in Oklahoma. Prayers that the news sounds worse than it is.
But I cannot conclude this entry without adding the following: Please continue your prayers for Heather's STABLE report. Until next time, we conclude Brain Tumor Awareness month (May) with blessings to those who have lost their fight and those still in the fight. Let's make 2013 the year for the cure!
Short and Sweet: Posted on June 6, 2013
How much shorter and how much sweeter can the following word be? STABLE! Every time we sit in Dr. Chang's waiting room, I think an earthquake is hitting San Francisco. Heather's and my legs are both shaking and moving at lightning speed - well, human lightning speed. We fidget. We stare out the window. We cross and uncross our legs. We tap our feet. We watch people enter rooms and exit rooms - some with smiles; others with tears. Every single person in that waiting room is sitting with someone who has a brain tumor. Sometimes it is easy to identify the patient and other times it is not. Every single person in that waiting room has a story. But for those minutes that we are there, it is our story that surrounds us. I guess that is selfishness in us. I am reminded of the people we have visited with and those we have consoled in the past, but we seem to prefer to be alone for those minutes. But I think everyone else in the room feels the same. Eye contact is done with a quick reassuring smile - almost a "I'm so sorry you are here" smile. Then "your" name is called. Someone comes to you and says your name. Sometimes putting one foot in front of the other is difficult. Then. . . the nerves are at their peak. This begins the moment when personalities come out. Heather and I seem to get the giggles. We begin to laugh at the dumbest things. It helps the time pass before Dr. Chang enters the room, turns on the computer, and says, "Everything looks good!" AMEN.
Five Years for LFAC: Posted on July 31, 2013
Here it is - July 31, 2013. I can hardly believe Leap-For-A-Cure is five years old! Yes, my family founded LFAC in July 2008. I remember it well: Michele and I were in Hy-Vee. We were thinking about what we can do for brain cancer awareness in the Omaha area. We had no idea, but we knew we had to think of a name. And we knew the name had to revolve around a frog - Heather's nickname. I remember walking to the car with groceries, and Leap-For-A-Cure evolved. I do not remember who said it first, but we both knew that was the name.
Five years and close to $500,000 later, LFAC has made its mark in the Omaha area. I have the privilege knowing that the Functional MRI and the Stealth Merge have made a difference in lives. I have the privilege knowing that Dr. Susan Chang's visit and the brain tumor symposium made a difference in lives. And I have the privilege knowing that the $50,000 donation to the Pathology Center at MECC made a difference. What more can a foundation ask? If the mission is to make a difference in lives, LFAC is on the right path.
Today I had the pleasure of visiting with a 32-year brain tumor survivor. For those of us who live for survivor stories, this one is a keeper. Sometimes I believe survivor stories come to me when I need them the most. I was just thinking about Heather's October UCSF visit (need to buy airline tickets). I was thinking about how I pray daily for her to remain the miracle she has always been. I was thinking about those newly diagnosed brain tumor patients I have just learned about. And then I visit with a 32-year survivor! Love it! I have faith; I have hope. And I have some new energy to focus once again on the 6th Annual Monster Bash for Brain Cancer.
Yes, the Monster Bash Committee is working hard to make this year the best yet - which is our goal every year Stay tuned for more information; but so far, 2013 WILL be the best one! Thank you once again for the support you have given to LFAC - whether it be from reading this entry, to following us on Facebook, to donating your time, talents, or money to LFAC - we THANK YOU! Enjoy the rest of the summer and say a prayer that "this" is the year for the cure.
Hip, Hip, Hooray – Again: Posted on October 4, 2013
How does someone share good news and thankfulness? Heather's MRI revealed "NO CHANGE" yesterday. I just don't how to express our relief. As the time approaches, we are always on edge. The weeks, days, and then minutes hang over our heads and tease us with worry. But the relief to hear "NO CHANGE" or "STABLE" is worth every fret and fear we experience. And. . . Heather has graduated to every 5 months. Yesterday I met a mother and father whose daughter was preparing for her 3rd surgery. Her scans had been clear for 8 years, and now she has to start the fight again. But I feel good that she will win. I saw her positive attitude and the fight in her smile. So, even though we know that someday we will probably hear the same news this family just heard, we also know that those are just battles that come along with the war. In the end, someone has to win, and I know Heather will!
Now, for Monster Bash. Thursday, October 24 is approaching. I feel as if we are so ready, yet so far behind. I'm getting excited, yet nervous. The weather is always a factor, and that is something I cannot control. We have so much planned! The Monster Bash committee has once again done an awesome job! So, thank you Kathy Baer, RyAnne Hastings, Jean Koerten, Nick Heinrich, Robyn Sitzman, Darbi Warden, and Michele, Heather, and Jon Roberts. Everyone has worked so hard. Monster Bash is a family-friendly - yet fun for adults - event. Doors open at 6:30 to live music (JR Hoss), taco bar, children's corner (bounce house, face painting, and crafts), photo booth, magician (roving and stage performance), costume contests with prizes (children's and adults') - all included with admission. Tickets are only $30 for adults and $20 for 2-11 (2 and under free). Optional participation in an "In-House Poker Run," raffle, and silent auction is also available. Come join the fun and support a great cause!
Oops: Posted on December 15, 2013
I cannot believe I never posted regarding Monster Bash 2013! I know that I have not uploaded pictures (mainly because I always forget how to do it), but I never thought I did not update "Heather's Journey." Well, Monster Bash 2013 was a huge success! We raised over $40,000 with the help of sponsors, donors, attendees, and Reagan Elementary School (who held its annual Penny Wars and raised over $2,000 once again). I met new people, said hello to others, and remain grateful for everyone who supported LFAC at Monster Bash this year. Currently, we are working with Methodist Hospital for a new therapy pool for post-surgical brain tumor patients. It's a process, so we are waiting for final approval. As the season of giving continues, we remain thankful for all the good wishes many have sent our way. We remain humbled that so many have not forgotten Heather's fight. She fights daily to maintain her positive attitude and to beat the beast. We are so blessed! So once again, from our grateful family to you and yours, Happy Holidays and many, many blessings for a Happy New Year - which I hope will be the THE year for a cure! Sue
Difficult Post: Posted on March 8, 2014
Our usual "stable" report has been altered with regrowth and the new growth is inoperable. So, that's the bad news, and it's now out of the way. Plan A was surgery, but since that cannot happen, Plan B is in the works. As of this writing, we don't know for certain, but Plan B looks like two weeks of radiation with 5 days on, 2 days off, and 5 days on; then Temador in conjunction with Avastin. We are waiting to make certain that Heather did not have the maximum amount of radiation almost six years ago. Of course, we were waiting for the conformation today (Friday), but the call never came. The next 48 hours waiting will be painful. We remain confident that Plan B will shrink the tumor and kill it! Heather remains positive, supporting others in her time of turmoil. We remain in awe of her strength and determination. I have vowed that my tears will stop so that I can focus on all the good thoughts for Plan B! It worked almost six years ago, so I expect our attitudes to Kick Cancer's Butt again!
SF Update: Posted on March 25, 2014
We are ending day 10 of our 19-day San Francisco treatment journey. A lot has happened since we arrived. First, we love our apartment! It's in Noe Valley and is a perfect location for all of our needs. Actually, San Francisco is not too difficult to maneuver and Jon is doing an excellent job driving while I navigate as his sidekick. Thank goodness for our trustworthy GPS! We met Heather's Radiation Oncologist (Dr. Sneed) on Monday, March 17. As worried as I was, my fears subsided quickly at our meeting. She's good! After meeting Dr. Sneed, Heather had blood work and other tests and then fitted for her radiation mask. After two days, the daily radiation began on Wednesday, March 19. On Friday, she had her first Avastin infusion followed with her chemo (Temador) Friday night. Until today (Monday, March 24), she was feeling great. However, radiation has kicked in so she is getting more tired. And then today, she began to suffer some chemo sickness. As I looked at her medication "suitcase," no wonder she is tired and sick!
Heather and I met two new patients on this journey. We will see them every morning until we are finished, so I'm certain more will be shared. However, being able to share information, provide support, and show a smile seemed soothing to them. We are almost 6 years into this journey, and I feel it's important to offer a shoulder and ear to those just beginning it. I want to spread hope, eliminate fear, and share positive thoughts.
While we are here for Heather's treatment, we have also been able to enjoy some adventures as well. Every day we have managed to see or do something fun in San Francisco, and we spent the weekend in Santa Cruz and Capitola (love that place!). We have also traveled to San Jose a couple of times to watch my nephew play baseball and to visit my sister's family. All is good. Amy is coming on Friday to see Heather, so we will enjoy time with her.
I feel we can breathe a bit more than we could almost 3 weeks ago. It seems forever ago that we heard the word "inoperable," yet it stings fresh in our minds. Although Plan A was replaced with Plan B, we are not throwing in the towel. Heather remains a fighter. She charges ahead at every corner, twist, and turn like a warrior on a mission. This mission is NOT impossible! Our treatment journey is on the downside, so time is with us. We'll be back in about 7 weeks from now for Heather's follow-up MRI. That MRI will show if the Plan B treatment plan is working - hopefully. Think we will be a bit nervous and anxious.
Lastly, Head-for-the-Cure, a national brain cancer foundation, is hosting its first Annual Omaha 5K Walk/Run on Sunday, April 27 at Lewis and Clark Landing. Leap-For-A-Cure has been selected as the local charity to receive 20% of all proceeds. The remaining 80% will benefit the Brain Tumor Collaborative through MD Anderson Cancer Center. LFAC is excited to participate in this event! To register, go to www.headforthecure.org or email me for details. Along with the 5K Walk/Run, please remember to mark your calendar for the 3rd Annual K9 Bark and Walk for Brain Cancer on Saturday, May 17 at Chalco Hills in Omaha. More information will be shared soon and updated on LFAC's Facebook page.
Thank you for all your support, positive thoughts, and prayers! Being in the fight is difficult but having so many on our side is encouraging.
Round Two Begins: Posted on April 24, 2014
It's been awhile. Currently, I feel as if we are breathing again and even smiling and laughing. Life appears normal at times. Looking at Heather makes me smile. She is such a warrior! Last week she had her head shaved - the "comb over" wasn't working anymore. First, she looks beautiful! Second, I feel she regained her "power" and is back to being Heather. Heather's work has been awesome! Working for doctors in a medical setting is probably a plus, but everyone has been so good and so thoughtful. And Heather does not abuse the generosity. She goes to work every day and tries to work a full day, but most days she remains too tired to make it until the end. However, yesterday she finally made it until 5:00! Problem is, today she started her Chemo Round 2, so she will probably begin to be tired again. Keeping all the medications and infusions in order is not an easy task, but I'm certain it could be more complicated - so I'm thankful an AM/PM medication container and calendar work! With Avastin infusions every 3 weeks, chemo 5 days on and 28 days off, hydration and anti-nausea infusions on days 1 and 3 of chemo, prophylactic antibiotics M-W-F, and more, it can be confusing. But once again, Heather seems to have it all under control. On May 7, Heather will have her follow-up MRI. We are expecting GOOD NEWS. We expect to hear the treatment is working. Honestly, we won't accept anything less. We continue to thank everyone for the prayers and support. We believe in the power of prayer! Thankfully, we have so many who have been praying for Heather to kick cancer's butt again. This is a journey no one should travel alone, so thank you for being by our side. Sue
Bumps in the Road: Posted on May 25, 2014
So much has been going on that I have really fallen behind in my "Heather's Journey." As a recap, in March we learned that Heather's tumor was no longer stable. We always knew that would happen one day, but we quickly learned you cannot prepare yourself for that news. After a week of planning, we "moved" to SF for three weeks and she completed 10 treatments of specialized radiation, had her first Avastin infusion, and started her Temador again. The first week was good. We actually had fun and at times "forgot" why we were there. Then the second week "hit," and Heather was sick and very tired. Finally, the last days were good again. Even though she was starting to be tired from the radiation, she was no longer sick from the chemo. After six weeks at home, we returned to SF to learn that her MRI showed some improvement. For the first time, we shed tears of joy - something Heather said she had never done before in her life. The day before the MRI, we were able to tour Google, which was such a treat.
On Saturday, May 17, Leap-For-A-Cure hosted its 3rd Annual K9 Bark and Walk for Brain Cancer. With perfect weather, we were able to rasie just over $11,500. Proceeds supported the American Cancer Society's Hope Lodge Omaha - something we felt LFAC should support since we could have used such a facility while in SF had one be available. Pictures will be posted soon, but they are available on Leap-For-A-Cure's Facebook page now. So many thank yous to so many people - from rescue groups, to volunteers, to participants, to vendors, to donors = THANK YOU! RESCUE GROUPS: Great Plains Pointer Rescue, Helping Hand for Animals, The Pit Bull Partnership, Pug Partners of Nebraska, Town and Country Humane Society, Northern Plains Boxer Rescue, and Taysia Blue Siberian Husky Rescue RAFFLES: Dapper Dog Omaha, Elkhorn Animal Hospital, Mission Village Animal Clinic, Nature Dog, Petco (120/L), Robyn Sitzman, Waggon Tails, Soggy Paws, and Beer Paws VENDORS: Clearview Pet Care Center, ComeSitStay, Best Care Pet Hospital, It Works!, Nature Dog, Omaha Lancers, Paws and Whiskers Photography, Pawsitively Royal, VCA Animal Hospital, Waggin Tails Ranch Special Thank You: Tim's Body Shop ($200 Sponorship), Milio's Sandwiches (sandwich donations), Tim McGee Realator at Catalyst Group (water donation), Paws and Whiskers Photography (Indoor Photo Shoots), and Mark Kresl Photography (outdoor photos), VOLUNTEERS: Amy Roberts, Andrew Griffith, Angie Graham, Anne Koerten, Beth JohnsonDarbi Warden, David and Kara and Sam and Matthew Bacon, Heather Roberts, Holly Carlson, Jeff and Jean Koerten, Jon and Sue Roberts, Liz Rayl , Mary Camperud (Tim’s Body Shop), Michele Roberts, Pat Hastings, Robyn Sitzman, RyAnne Hastings (Methodist Hospital Foundation), Sandy Drummond, Terri Phillips (Omaha Lancers), and Tim and Kate McGee (The Catalyst Group).
With the dog walk over, I thought things would settle down a bit as the following week meant another chemo round and Avastin infusion. I never thought I would welcome such normalcy when it did not happen. Heather suffered a mini stroke on Monday, May 19. After blood work, a CT Scan, an MRI, and an EEG, we learned her platelet count was too low for her chemo on May 21. After the EEG showed no change in six years, a seizure was ruled out. However, a stroke means her Avastin infusions have ended, but we have not heard for certain on that. During the 24 hours following her stroke (which happened in the middle of a Walgreen's while she was by herself), we tried to overnight via UPS her Omaha MRI to UCSF. Unfortunately, UPS missorted it and sent it to Florida! Therefore, the scan was not to UCSF in time to be uploaded and read prior to the Memorial Day weekend. However, UCSF sent its MRI (yes, we forgot to get a copy of the latest MRI while in SF!) to Omaha and the radiologist at Methodist seemed to think her recent MRI looked better than the one three weeks ago in SF. Confusing? Sorry. We are still waiting for Dr. Chang's opinion.
So, what does all this mean? We have no idea, really. We are hoping Heather's platelet count improves this week so she can start her chemo again. I'm certain we will hear from Dr. Chang about her decision regarding Avastin. And Heather will begin PT and OT next week. What we do know is that Heather encountered an unexpected bump on this journey, but we are fighting to regain what she may have lost. Her spirits plunged - mostly from fear, I think. Thankfully, she has laughed and smiled a bit in the last couple of days. We will never give up hope or lose our fight. And someday soon, I pray the "C" word means CURE!
Happy Times: Posted on June 17, 2014
I'm thrilled to report that Heather is happy again! She has recovered from her "bump in the road" which occurred on May 19. Whether it was a stroke, a seizure, or brain swelling, it does not matter now. She has recovered and is moving forward. Heather’s resolve is a lesson for all of us: be positive, love life, and fight like a girl!
Since May 19, more medications have been added to her daily routine, but she hopes to be kicking those out soon. Her steroids (which keep her from sleeping - and if you know Heather, that seems impossible!) have been dwindled to one a day, and her anti-seizure medication should be completed in 2 - 3 weeks. She can hardly wait to end the steroids even though this time around she has not gained as much weight nor has her head grown as much. However, she will soon celebrate losing some of the extra that comes along with steroids. As of today (June 17), she has not been able to have an Avastin infusion. Good news: She was able to have her port surgery because she had been off Avastin for the required 28 days. Bad news: She has now been off Avastin for 6 weeks! Last week she was hoping to have the infusion, but her port incision had not healed enough to start Avastin again. Hopefully, tomorrow brings good news. Once she is cleared and there is no negative effects, she will start bi-weekly Avastin infusions. Good news: Her chemo (Temador) went very well last time. With the routine is in place, she had no ill side-effects. So for Heather, hydration Day 1, 2, and 3 along with Aloxi on Day 1 and Day 3 followed with boosts from Emend, she was not sick and felt great! What more can a mom ask for?
I had the pleasure of meeting a wonderful family - wife, mother-in-law, and mother of another brain cancer patient here in Omaha. He is a father of two young children and an Omaha Police Officer. Great family. I can hardly wait for Heather and Jeff to meet. I think a friendship is in the works, and I think the connection will be good for both of them. I remember how much Ryan Fawcett (Sarpy County Sheriff who lost his battle 2 years ago) supported Heather and how much he taught us. Now it is Heather's turn to share and comfort and guide and support. She had a great role model for her teacher, and I have confidence she will be the same for Jeff.
As I was visiting with Jeff's mother, it hit me again. It does not matter how old your child is - YOUR child is always YOUR child. When YOUR child is in danger, the heart aches. Whether YOUR child is 5, 10, 15, 20, 25, 30, 35, 40 . . . this person is YOUR child. A parent will offer to change places, make deals, make promises - whatever it takes to keep YOUR child safe from harm. And when the parent of a child cannot keep the child safe, the heart aches and breaks. Pieces fall and may never be in place again. Life has changed forever. HOPE becomes the friend and lifeline that allows the parent to meet each new day. HOPE is the connection between dispare and faith. Thankfully, HOPE came into our lives and we have the faith that Heather will be safe from harm.
The College World Series is here. It's so fun seeing some "old" CWS friends and making some "new" friends. It's such a friendly event and we enjoy every minute of it. But once the series ends, it's back to routine. It's back to monitoring what and how much we eat. It's back to thinking about upcoming July 4 and all the upcoming celebrations. And it's back to thinking about Heather's July 9 MRI. We are fully expecting to hear the much-loved word: STABLE. Until next post.
Blessed Again with Stable: Posted on July 10, 2014
Just when I had enough courage to walk into Dr. Chang's office, I heard Heather say, "If it isn't good news, I'm not going in." Stopping and turning to see Heather's face, I froze waiting to hear Dr. Chang's response. Hours later - OK , seconds - I hear, "Come in; it's good!" I wish I had a creative way to share just how important the word STABLE is to us. The anxiety that surrounds prior to our UCSF trips comes to a head once we enter Dr. Chang's office. The news only has two ways to go. And when we hear STABLE, I feel the room sink with relief. Heather is doing well. She has stopped her anti-seizure medication and is tampering her steroids. She is on schedule for her bi-weekly Avastin infusions as well as her monthly chemo (Temador) regime. All the other medications fall into place daily. She is happy and thankful and eager to live her life.
Now for the disappointment. Heather's beloved Carter, whom she rescued in April 2013, started having seizures after July 4. During the second seizure, Heather taped it and sent it to her vet. Once the vet saw it, she verified the seizure; and after an exam suspects Carter has a brain tumor! Carter is now taking Heather's leftover Keppra (anti-seizure medication). Heather is worried sick over Carter as we all are working to get him back to his "normal." Great Plains Pointer Rescue certainly knew Carter belonged with Heather!
Finally, Heather met a special person on the plane last night. I believe a divine intervention placed him next to Heather. Once again, meeting someone who has been 13 years in remission from deadly Mantle Cell Lymphoma has given Heather a renewed sense of faith. Thank you, Don B. for sharing your story. Our prayers may have been answered this trip, but we know of others who are asking for prayers right now. Please add those who are battling brain cancer to your prayer list or keep them in your thoughts today and every day until there is a cure.
Don't forget Monster Bash 2014 is Thursday, October 23. Mark your calendars now for a frightfully fun evening that supports Brain Cancer Awareness.
Ups and Downs to New Normal: Posted on September 19, 2014
Heather is once again feeling on top - physically and mentally and emotionally. But it was not easy getting here. In August Heather had another seizure. Although this seizure did not appear as severe as her previous one on May 19, it still took a toll on her left side and our nerves. But after months of being tired, tired, and more tired; weeks of recuperating from the seizure; and much time getting back to "normal," she is feeling well. This week is NORMAL! She continues with her monthly Temador and bi-weekly Avastin. She battles low blood cell counts, but this week is good. As she said, "we celebrate the little things" and treasure baby steps. She was able to enjoy her 35th birthday party, which we celebrated in casino fashion. After weeks of anticipation, the night slipped by in an instant, but Heather enjoyed and celebrated. Nothing could have made us happier!
Because of her seizure and subsequent Omaha MRI, our September UCSF trip was postponed until October, so next month will be a busy one with Michele's due date, Monster Bash, and Heather's medical check-up. First comes Addison - a bundle of joy for certain. We are all excited to open our hearts and lives and homes to her. Everyone anticipates a new arrival, and our family is no different. But like so many families, Michele's journey was a long one. So Addison is a little miracle before she even arrives. Second comes Monster Bash on October 23. If you have never attended, try it! There is something for everyone - from small children to adults without children. Doors open at 6:00 (Georgetowne Club, Omaha). And costumes are optional! No need to worry if costumes aren't your "thing." Over 1,000 invitations are in the mail! If you want more information, just ask: firstname.lastname@example.org Third, we will anxiously await good news in San Francisco. Heather is a fighter and she has so many "medals" from her victorious battles. She is busy with her new foster failure Lilly, work, friends, and family. Some bumps in the road can't stop her from being happy, blessed, and thankful! For all warriors, we pray for a cure. So many are in our thoughts daily and prayers nightly. Never give up hope!
Five Months Later: Posted on February 10, 2015
Wow! It's been 5 months since I last updated this journey. Our family has experienced a birth (October 1 welcomed Addison Evelyn into the world), a successful Monster Bash, a successful Omaha Lancer/LFAC Night, continued "stable" MRIs for Heather, and even my broken hip and subsequent hip replacement. We have much to celebrate, so I guess those joys (excluding the hip issue) has overtaken the journey updates.
Good news: Heather has not had another seizure after suffering two. Her medication appears to be working. She has stopped Avastin due to side effects (dots on her brain) but continues her Temador. As anyone who is taking this chemo (or any other chemo) may know, people get into a routine that works for them. For Heather, Day 1 = hydration infusion, Aloxi, Emend, lots of Zofran, and more hydration (good sport drinks). Day 2 = hydration infusion, Emend, Zofran, and more hydration. Day 3 = hydration infusion, Aloxi, Emend, Zofran, and continued hydration. Day 4 = Zofran and hydration. Day 5 = Zofran and hydration. Day 6 = sometimes a hydration infusion, maybe Zofran, and continued hydration. By Day 7, she is somewhat back to normal. SLEEP is always a major part of Days 2, 3, 4, 5, and 6. On Days 4 and 5, I think she is asleep more than she is awake. If she keeps up with her hydration and Zofran, her days are better - usually. Since she had to two seizures, her left leg has taken on a life of its own - sort of. She finally decided to get a handle on it and is now back in PT. Thankfully! Interestingly, she is starting pool therapy on Dr. Franco's orders. And, a therapy pool is just what LFAC is donating to Methodist! I wish Heather could have been the first person to benefit from the therapy pool, but "powers that be" are still in the process of finalizing the infrastructure and purchase. LFAC has almost 2/3 of the required funds, and we continue to make it our #1 priority for now. A therapy pool will benefit not only post-surgical brain tumor patients, but other patients as well. This purchase is Heather's dream, and LFAC is excited to see it come to fruition. We will keep you posted.
In the meantime, LFAC is once again supporting Head-for-the-Cure's 5K Omaha on Sunday, April 19 at 8:00 am at Lewis and Clark Landing. LFAC will receive 20% of the proceeds - all of which will go toward the therapy pool. Registration is open at http://www.headforthecure.org/omaha Another opportunity to support LFAC is at the 4th Annual K9 Bark and Walk on Saturday. May 30. Whether you have a dog or two or no dogs at all, participants are welcome! More information will be shared later, but mark your calendars now.
As always, we keep all our brain cancer warriors near and dear to our hearts and prayers. Let's make 2015 the year for a cure! All Leap-For-A-Cure donations are 100% tax deductible. Follow LFAC on Facebook for current information!
Summer 2015: Posted on July 15, 2015
Once again, it has been awhile since my last entry. One might think "no news is good news," and we are praying that is the case. Heather's June MRI revealed a "slight change." Of course, I panicked! Dr. Chang felt the slight change may be radiation effects from last year. The radiologist agreed. Therefore, a bit of ease surrounded us. However, I'll be so happy once the August MRI is completed! As for how Heather is doing - she is the fighter we all should be. Her two seizures last summer have resulted in a bit of a slower gait, but she has worked through months of physical therapy and continues her own therapy now. No matter what is thrown in her path, she continues to move forward. I just do not know many people who would or could do that!
Leap-For-A-Cure continues in its efforts to bring Brain Cancer Awareness to the forefront. Yes, there are many - too many - diseases that need awareness. But we need a CURE for brain cancer - all cancer! In the meantime, LFAC will fight for awareness. And, we have some local support. The Omaha Lancers are once again supporting our cause. On September 9, the Omaha Lancers Hockey Club is kicking off its 30th Anniversary Season by hosting the inaugural Lancers Classic Golf Event at Tiburon Golf Course. A steak dinner will immediately follow at Charlie's On The Lake. A portion of the proceeds from this event will be donated to Leap-For-A-Cure. Please join us for this special event. For information and registration, go to https://birdeasepro.com/Event/Register/2780. And, PLEASE consider attending Monster Bash 2015 on Thursday, October 29. The committee is hard at work planning for this annual event. More information will be shared the upcoming months but go to Leap-For-a-Cure's Facebook page for continued updates. Again, Thursday, October 29. Doors open at 6:00 at Georgetown Club in Omaha. We are currently accepting Sponsorships (various levels) and SA/Raffle donations. If interested, please contact me and I will send you the information. Again, thank you for your support - whether it's through prayer, through donations, through event attendance, or through friendship! We appreciate all the warriors in Heather's life.
Subdued Celebration: Posted on October 14, 2015
While sitting in a room full of patients - and I mean full - we experienced despair in the air. First, we met a family during Heather's MRI. The young man with brain cancer certainly had a room full of support - from wife, to mother, to siblings, and maybe a friend. But that support offered a sense of hopelessness. So sad. Then we entered Dr. Chang's office - a waiting room usually quiet with few people sitting at the same time. It's a room that comforts (if that is possible) brain tumor patients because those are the only patients this office sees. Yesterday was different. Heather was supposed to be her first patient of the day, yet the room was filled. Even though there are other neuro-oncologists in the office, it's "easy" to spot a Dr. Chang patient. While seated and waiting, we saw a man and wife come out of the examination room with tears in his eyes. They each took a seat with him holding a thick envelop. Next, entered the family we met during the MRI, quickly followed with an adult man leaving the examination room only to sit quietly and stare out the large window. Then I looked up to a clanging noise - only to see two armed guards escorting a shackled prisoner. Heather and I looked at each other both sharing the same glance: Too much is going on today! I stopped looking at that point as I did not want to see more than I already had. Uneasiness filled the room and our minds.
Heather, Jon, and I - along with Michele and Amy - constantly worry about the next MRI. I know we should think positive, and I think we have done a great job of that. But the "what if" looms and towers. We became somewhat "cocky" until the shattering Spring 2014 news of new growth, so I think we always realize what news we might hear. Brain Cancer does not allow remission, only "stable." As we left Dr. Chang's office, for the first time we did not leave with smiles and celebratory "high fives." While jubilation filled our hearts, we felt the pain of others. We offered Dr. Chang a "good day," knowing she had a shitty one on the horizon. We knew that our "stable" news may be the only "good" news she had to offer all day. Her day was just beginning and already she had to experience despair with others. She is a human who cares deeply about her patients and about brain cancer. Every patient is a part of her, so she loses a piece of herself all too often. For us, it was a long plane ride home. Heather and I too often look around us and notice how people complain and worry about such silly things - i.e. not having luggage room on the plane, not sitting in the desired seat, not being the first off the plane - you know, those serious issues! Heather and I know we need to lighten up a little, but it is difficult when REAL problems and fears stare us in the face daily. With all that shared, we are THRILLED beyond words for our "stable" news. We continue our prayers for a cure and for those whose journey is bumpier than ours.
Wait, Recheck, Wait: Posted on January 11, 2016
In December 2015, our trip to UCSF brought us an uneasy feeling. There was a change in Heather's MRI. The "Good" news: Both Dr. Chang and the Radiologist felt the change was due to radiation effects from almost two years ago. The "Bad" news: There was a change that has to be closely monitored. The "Good" news: The Tumor Board agreed with Dr. Chang and no treatment was needed "yet." The "Bad" news: Back in 4 weeks for a new MRI. Needless to say, our 4 weeks was filled with uneasiness, tears, and many prayers. However, we also decided to make our holiday season fun and family-filled with happiness, celebration, thankfulness, and memories! We did just that.
January 2016 brought us back to San Francisco. Once again, our prayers were answered with "No Change." What does that actually mean? "Good" news: The "change" is still there, but "no change" from the previous month. Still no blood flow to the area, which most likely means no tumor growth. "Bad" news: If the area continues to "spread" - for lack of a better term - Heather may need to decide between two evils: no treatment or try Avastin again. Last Avastin attempt restricted blood vessels in her brain, so she had to stop that treatment. Avastin is often used in conjunction with chemo to protect the brain from radiation. I often wonder if the Avastin was the culprit to her two focal seizures. So, where does this leave us now? Heather will return in February (6 weeks from last MRI) for a follow-up MRI.
As many know, I found a "Scanxiety" photo and posted it on FaceBook. I can verify that "Scanxiety" is a part of our lives as it is with so many. With all that, we plan to continue to live with positive attitudes, knowing Heather is being treated by the very best. She is hopeful - as we all are - that she is the miracle that so many pray to be.
Several years ago, by "chance" we met a man on the elevator in SF. He was 18 years with glioblastoma and still working as a software engineer. I still believe our meeting was NOT by chance; I believe God had us meet to give us hope. It worked! As I close, I want to make certain that part of our anxiety rests with knowing that so many - too many - do not hear what they so desperately want to hear. And many - too many - lose their battle with not only brain cancer, but other cancers as well. Our hearts go out to the many whom we never meet and to those who have walked our journey. May Travis Freund Rest-in-Peace knowing his family has many memories that will last a lifetime and lift them in times of despair.
Steroids Our Best Option? Posted on February 21, 2016
As with all journeys, twists and turns may be unexpected and unwelcomed at times. Heather's brain cancer journey has been no different. From April 2008 until now, we have been on some smooth roads, some bumpy roads, some scary roads - but we have always come out OK. This week we hit another bump in the road. While the tumor has not resurfaced, three new spots and necrosis have. Swelling. Scar tissue. We have to get that under control. Surgery is not an option. We knew we had three possible options when we left Dr. Chang's office: Steroids, Avastin, or Chemo and Avastin. Thank God - literally - Heather gets to start with steroids. What does this mean? If the swelling continues, more seizures. If the steroids work, awesome! The swelling will either stop or decrease. If the steroids do not work, Avastin. While some people tolerate Avastin, Heather did not when she tried it in 2014. The blood vessels in her brain restricted, so she had to stop it. For her, Avastin's effects could most likely lead to a stroke. But, the swelling has to stop! If the three new spots were a tumor (based on the blood flow), she would have started chemo again along with the steroids. Confusing? Based on our options, that is the reason we are thankful for "just" the steroids. Who makes these decisions? The UCSF tumor board. Dr. Chang presents Heather's case to the board, and the recommendation is made. Heather has always faced each twist and turn with such grace - humor - a positive attitude. I know I say it all the time, but I am so proud of her! She has taught me - and many people - so much about facing life's unexpectedness with acceptance. Boy, the cliché "No one said life is fair" could not be more true. I'm the one who becomes angry sometimes, not Heather. I'm the one who cries, not Heather. I'm the one who feels sorry for her, not Heather. Of course, her sisters and her father have their moments as well, but Heather is the one who keeps us moving forward, knowing that "someone has to be the miracle" and we all believe - thanks to Heather - that miracle is she! So, we repeat this process is six weeks. Trip to SF. MRI. Meet with Dr. Chang. Return home. If the MRI shows improvement, maybe - just maybe - we will be able to wait two months. Or, we may have to wait for the tumor board again. Who knows? Honestly, the waiting never gets easier, but living the journey becomes the only part of life that is expected.
It's “Evolving”: Posted on April 28, 2016
Yes, those are the words we heard: It's Evolving. I didn't really want to hear details. However, Dr. Chang followed up with "but we don't know at this time where 'it's' going." The "it" is the spots on Heather's brain that appear to be necrosis. These spots are more prominent this time, but the lack of blood flow suggests no active tumor growth - at this time. Both necrosis and active tumor adversely affect the brain. So, now what? Just as Heather was beginning her steroid taper, she is back on full force. Of course, she accepts and understands the need but is frustrated because of all the side effects. She aches. She is restless, yet tired. She gains weight. She has diabetic symptoms from the steroids. She is short-tempered. Basically, she is miserable. But she is always lovable. As we approach her next MRI in 4 - 5 weeks, we are hopeful for the "spots" not to change, which we will accept as our new stable.
Gallium-68 Citrate Pet = What: Posted on June 2, 2016
First, our news on June 1 was not what we wanted to hear: Active Cancer Cells! Heather will begin a new chemo regime for her: CCNU. One pill. Six weeks. Repeat scan. On the last day of Brain Tumor Awareness month - May - Heather entered a UCSF research project in which only 10 patients were chosen. She was #1. "Gallium-68 Citrate Pet to Detect Hyeractive mTOR Activity in Gilioma" to be specific. While the results are still being analyzed as I write, the MRS (which was completed in conjunction with the PET scan) revealed active tumor cells. Between the necrosis and the active cancer, we have yet again entered a FIGHT! And who is better at fighting than Heather? No one! The study is promising for diagnostic possibilities, and we are happy Heather is helping. She is the first person at UCSF, probably the first person in the US, and maybe the first person in the world for such a scan for the brain. In addition, in six weeks she will be the 4th person to ever have a specific scan (don't remember the name) and the first person ever to have both. Again, promising possibilities for future diagnostic improvements. And, one of our missions has always been improved diagnostic options for earlier detection. In the meantime, Heather is fighting to beat her current situation. I have experienced the meaning of HATE - and I HATE cancer is all its forms. But brain cancer has a special hatred. My daughter is someone to admire for her ability to face the unknown, the disease, and the fight head on. She is amazing! I love her more than I can share with words, but it's a "mom" thing.
Fighting for a Miracle: Posted on July 17, 2016
She fought in 2008. She fought is 2014. She is fighting harder than ever now - 2016. Heather's San Francisco appointment was not a happy one. Dr. Chang had to deliver some heartbreaking news: the CCNU did nothing. In fact, the tumor has become more aggressive and the swelling is spreading. The prognosis horrible. With that ugliness said, Heather is once again fighting - fighting like never before. She has chosen to go back on Temador - 7 days on, 7 days off. She knows - in her head - what lies ahead. However, she also believes - in her heart - that if she does not try this, she will never know if she is supposed to be the miracle survivor. So, full guns ahead. Below is what her sister Amy shared on Facebook. I feel it sums up what we all feel, and it's stated better than what I could write. Heather has a strong circle of family and friends who are fighting along side her so that she can beat the beast. And, I'm quoting her when I say - "Fuck Cancer!" Sorry for the language.
"While many see this as a time for tears, grief, and anger, I have to say — I see it as a time for pride. I am so proud of Heather for her fighting spirit. I am so proud she has met every single bit of this journey with grace, humility, humor and courage. I am so proud that even when the odds are overwhelmingly stacked against her, she refuses to give up, give in or feel sorry for herself. I am so proud of Heather’s attitude, optimism and boundless strength. I am proud she does not understand pity or pessimism, nor does she tolerate it. I am proud she has never let thoughts of dying trump her will to live. While it is impossible to know how we would personally react to receiving news like she has, I think we can all agree we could only hope to handle it half as well as Heather has time and time again. I am proud to have her as my role model. But more than anything, I’m proud to call her my sister." Amy Roberts
Optune = Opportunity: Posted on August 2, 2016
July 13, 2016 Heather heard "two months." Many people would have followed protocol and spent their time doing and seeing whatever and whoever - all to "make their time matter." Heather has chosen to FIGHT! She decided in order to beat the odds and NOT be a statistic, she had to fight. Her time WILL matter! So how can someone fight when options have seemed to run out? Well, Heather went back on the same chemo that had worked two other times: 2008 and 2014. This time, however, without radiation, which is not an option again. And then her Omaha oncologist suggested she try Optune also. What is there to lose? Transducer Arrays. TTF. Novacure. Optune. Shaved head (every 3 days). Ceramic discs. Layout map. So much to learn! Yet, daily life continues. Shopping. Showering. Sleeping. Eating out. Traveling (somewhat). Our journey has forked. Temador 7 days on/7 days off. Infusions 4 days out of 7 with a 7-day break. Optune 24/7 with changes every 3 days. We can do it! More importantly, Heather WANTS to do it! Two months? I don't think so. The GBM growing in her head has not had a fight like hers. Every step taken from her only makes her fight stronger and louder. Cancer may have stripped her of her hair, her left side, and some time, BUT it will not take her life! I should add that with her family, her boyfriend, friends, and co-workers by her side, Heather has been given strength that others don't get. She knows this. She feels blessed. She feels responsible to beat the odds. I believe she will.
Where We Are Today: Posted on August 21, 2016
I have to say, our family has some tremendous friends. In fact, without those who have supported us in so many ways, we would be hopelessly lost right now. We feel lost. We feel numb. We feel drained. We are incredibly sad. But so many people have stepped up to make us feel the warmth of caring. THANK YOU. Michele and I have visited about what we have learned in this phase of the journey. First, we have learned that we always need to let people know we care. Whether it is a short visit, quick phone call, mailed card, kind gesture, prayer, gift card, or dinner - reaching out to let people know you care is etched in the heart. Second, we have once again been introduced to those who truly are our "loved ones." Some people - even family - "run" from the ugliness of life. Thankfully, from car miles to air miles, Heather has been blessed with wonderful visits from special people. And while we know most people (thankfully) will never understand our journey, many have tried to support us. (I need to say a special thank you to Scott Matzka. Scott lived with us for two years while he played for the Omaha Lancers. He went on to play hockey for Michigan and then to play professional hockey overseas. He marred Catie and has two young children. In the midst of his ALS battle, he traveled to Omaha to see Heather. There will never be anyone that I admire more than Scott and Heather. To see these two fight their fight is incredible. Heather has adjusted to her Optune lifestyle change. Again, incredible. It's easy for people to say one thing, but not so easy to do it. Heather has. This is a young woman who was given two months to live. She rejected "stop all treatment" and began another fight round with chemo and Optune. To help people understand - Heather had been on her chemo Temador before - twice. It's normally a 5 days on / 23 days off cycle. She completed 11 months of it in 2008-2009 and then completed 12 months of it in 2014-2015. She is now on the same chemo and the same dose but her cycle is now 7 days on / 7 days off. Along with that, she has hydration and Aloxi (anti-nausea med) infusions 4 of the 7 days on. She has blood work every other Monday and Friday. Her veins are shot and she is hoping for a port again. In addition, she wears her Optune 24/7. The only break is when she needs it changed (every 2 - 3 days) and then she can shower and scratch her head. She lugs around her battery pack and we also carry extra 2.7 pound batteries everywhere we go. Yes, some people - including me - would probably bitch and complain, but not Heather. Never EVER has she said "Why me?" and never EVER has she said "It's not fair." Finally - I can't stop bragging yet - while there are those who would have stopped working and given up, Heather has started working from home. She certainly qualifies for disability, but she feels she has more to offer. While she needs assistance with almost all aspects of her daily life, she still wants to work. I'm amazed. If I can be half as strong and half as purposeful and half as hopeful as she, I'll consider myself a good person. But, I still need to work on that! So, what's next? She will have another MRI in early September. We pray her body continues to allow for Temador. We pray the Optune is "shaking the shit" out of those cancer cells. And we pray for more time with Heather. On July 13 we heard "two months." On August 13 we all went to dinner and a movie. And on September 13, we plan to celebrate Heather's 37th birthday!
If First You Don’t Succeed . . . Posted on September 3, 2016
So, the Temador did not work this time. Once again we heard "tumor progression" and once again we are trying a new plan: Immunotherapy, specifically Opdivo. Heather has not lost her fight, but she has had a rough week. Thursday, September 25 she went in for a port. Although that is not what we really wanted, her veins were shot and at that time she still needed 3 - 4 hydration/Aloxi infusions every other week. The port did not go as planned, and she had complications. Thursday and Friday were bad days, but Saturday and Sunday seemed better. Then came Monday. She went in for her infusion and because of the port swelling and tenderness, after five hours the infusion was stopped. In the end, it did not matter because Dr. Popa decided Heather needed an MRI on Wednesday, so she halted the chemo until after the MRI results. Monday continued to be a bad day: intense headache, nonstop vomiting, and then comatose state. Monday night and Tuesday were awful and scary! Thankfully, Heather does not remember those days, so she is blessed not to know our sense of helplessness. We almost cancelled the Wednesday MRI, but honestly did not have time to do so. Her care took three people 24/7. Amy (Heather's sister) asked for prayers on Facebook, and the world heard because Wednesday, Heather awoke lucid. She sat up. We moved her to her wheelchair. She ate breakfast. She communicated perfectly. So, we kept the MRI appointment. In the end, what we heard was "tumor progression" and no more Temador. Immunotherapy along with Optune is the plan of attack. While Heather is optimistic, I think she is getting frustrated that the tumors are fighting back as well. She is determined to beat the beast in the war, even though she has lost some battles. She continues to teach us how to live, how to fight, and how to be grateful in the midst of struggles. I continue to believe Brain Cancer - all cancers - is ugly. It needs a cure NOW!
Saddest Day of My Life: Posted on November 11, 2016
I just realized that once again, I am slow to write. Heather's journey has been difficult the past months, and with a heavy heart, I share that my beautiful daughter lost her fight with brain cancer on November 8, 2016. After the Temador did not work and her MRI showed progression, Heather refused to give up. She opted to begin immunotherapy (Opdivo) in September. As her physical limitations increased and her struggles heightened, I knew in my head it was not working. Heather, however, continued to believe in miracles. She continued to wear her Optune and continued to try to work from home. I continue to marvel at her strength, her perseverance, her hope - so much more than I have. Even though Heather was given 2 months on July 13 and then given 2-3 weeks on September 4, she fought to beat those time markers. She never gave up hope for a miracle - never. She made it to Monster Bash 2016 - a goal we did not even discuss until a couple weeks out. Then, on Monday, October 31, she was struggling with her breathing. She was admitted to Methodist Hospital to learn she had pneumocystis pneumonia along with possible Opdivo side effects. In addition, another MRI revealed her cancer had once again progressed and encompassed over half of her brain. Although the results were devastating, Heather once again had hope. She asked me, "Do you think we did the MRI too soon?" She later decided, "I'm going to do 3 more rounds of Opdivo - just in case it works this time." The pneumonia was obviously our secondary issue, but a serious one. With IV antibiotics running continuously, her steroids increased, and oxygen in place, Heather began a battle she could not win. In the end, her heart could not take the effort to breath anymore. Her final goal in this journey was to come home, but she never made it. We tried. She tried. The doctors tried. But it just could not be accomplished. We are at a loss, feel empty, and are heartbroken. Our beautiful daughter who fought with dignity, humor, humility, and hope is gone. We are thankful for those who have followed our story, supported our efforts, and shared in our journey. Our fight is not over. We will continue, but with one less warrior by our side. Heather Marie Roberts. Born September 13, 1979. Left this life Tuesday, November 8, 2016 with her loving family by her side holding her tightly as she took her last breath.
Thankful: Posted on November 24, 2016
Amidst my grief, today I am thankful. I am thankful for the friends and family who held our hands and lifted our hearts the past 8 1/2 years. I am thankful for the people who made Heather's final months so special - from continued visits, cards, texts, and birthday wishes. I am thankful for Dr. Chang at UCSF who offered Heather more years than expected. I am thankful for Dr. Popa who gave Heather hope when no one else could. I am thankful for those who visited Heather and our family while she was hospitalized for 9 days. I am thankful for my special "Ya Ya" group who never wavered in their support. I am thankful for Heather's group of friends who let her know how much they loved her. I am thankful for her boyfriend who did not run when the battle became impossible to win. I am thankful for my sister who opened her home all these years so we could get to San Francisco bi-monthly and who never waited to be asked, but just jumped on a plan and came to support us these past months. I am thankful for the Monster Bash committee who decided to move ahead with the event when I could not. I am thankful for all of the nurses and medical staff at Methodist Hospital who took such loving care of Heather and our family. I am thankful for all those who attended Heather's service and those who shared memories of her. I am thankful for all who donated to her memorial choices. I am thankful for the anonymous people who paid the Brandies invoice for the memorial luncheon. I am thankful for her pallbearers who came from far and near. I am thankful for Pastor Dave and our church. And I am thankful for Jon, Michele, Amy, and Addison who give me reasons to continue to live life. So, even though today is not a celebratory day for us, I am thankful for so much. Heather provided us with lasting memories that can never be faded or erased - from hilarious moments (i.e. walking through the San Jose airport with a toilet seat cover hanging out her backside) to somber moments (i.e. holding hands while we heard the news that her tumors had progressed with no more treatment options). With that said, please enjoy this day and give thanks for all the moments in your life that are blessings. We are grateful.
Firsts: Posted on December 26, 2016
We often think of "firsts" as an exciting time of life: 1st tooth, 1st step, 1st day of school, 1st date. You get the picture. I've learned other "firsts" are not so exciting. We are experiencing 365 "firsts," and I hate every one of them! I hated my "first" day without Heather at my side. I hate our first football season without Heather giving us the up-to-date scoop. I hated the "first" Thanksgiving. I hated our "first" Christmas. And I'm not looking forward to our "first" new year. Yes, I enjoy and love my family who is also suffering "firsts," but the days do not escape our sadness and grief. Although we are trying to think of memories with smiles, it is too fresh. Too soon. Painfully, too sharp. I've read so much about grief - specifically grief from losing an adult child. After all, that is my grief. My bubble. I have lost both parents, both in-law parents, all grandparents, most aunts and uncles, some cousins, and a few good friends. This grief is different. The emptiness is deafening. The hole is deep. What I have learned is that I not only lost a child, but I also lost a friend. Adult children grow to be our friends even as they remain our children. Confidant. Partner in crime. Heather was that for me. We shared secrets. We shared shenanigans. We shared funny stories - both in action and in telling. We cried together. We laughed together. One time someone told Heather, "I think it's a bit weird how close you all are." But that's how we rolled. Heather was always a "mommy's girl," and I guess it never stopped. I miss her daily "hello." I miss her. But her relationships did not stop with me. She shared a bond with Jon like no other. What came from her mouth to his ears - only Heather! Beyond those moments though, she was his TV guide for football. Who is playing. Who is out. Who is playing injured. Win / loss records. We never had to google for information; Heather already knew it. Whenever he was in a bad mood, I depended on Heather to move him from that to something positive. After all, that is how Heather lived. Positivity - even through sarcasm. Her sisters have also lost. They lost their baby sister with whom they laughed and loved. As siblings do, they fought - even as adults. But they loved each other deeply. Michele and Heather even lived together for a few years while Heather finished college on her 6 year plan. From road trips to quiet times together, Michele and Heather bonded. And Amy and Heather shared the love of animals and the constant humor of life. Amy is a writer. Heather was a storyteller. Between the two, the truth was always in the middle somewhere. Firsts. We need 365 "firsts" before we know how we will "make it." We are not "moving forward." We are living - well, trying to. We are not going to "get over it" - ever. We are going to learn to live with our heartache, our emptiness, our memories. I'm waiting for the "first" day that I don't shed tears. I'm waiting for the "first" memory that makes me laugh before I cry. I know others have walked my journey and they have come out on the "other" side. So, I believe we will too. However, my bubble is now and I'm not there yet. I don't know how to get to the other side except with time. And with time comes all those painful "firsts" that must be experienced.
Twelve Weeks of Heartache: Posted on January 31, 2017
Twelve short, yet long weeks. I miss Heather so much that the pain sometimes overpowers my heart. I wonder if I will catch my breath to breathe again, and then sometimes I don’t care if I do. Of course, I do not want to feel this way. Of course, I love my family and want to live for them, for myself, and most importantly for Heather. But it is difficult. I learned so much in the past 8 ½ years. I learned that “it” does not always happen to “other” people. We are those “other” people. I learned to be an advocate no matter how painful, how expensive, how many mistakes I might make. I learned how strong love can bind a family together. I learned how important a positive attitude is to those who want to live. I learned how to hide my fears, anguish, and anger. I learned how difficult it is to fight a losing battle. I learned how hellish it is to say good-bye to a child. I learned that people cannot understand a loss so deep unless they, too, have suffered it – and I don’t want anyone to suffer this loss! I learned that some losses stay with you forever. Yes, I have learned much and I’m still learning. Will my pain always be so raw, so sharp? Everyone tells me no. So, I wait. I wait for the day I do not shed a tear – but I’m afraid if that day comes, I might cry because I did not. I wait for the day a memory brings the smile before a tear – still waiting. I wait for the day I can be in a large group. I wait for the day I answer the door or phone without thinking if I am ready to face what is on the other end. I wait for the day I can say “Heather” without a lump in my throat and a tear in my eye. I wait. While I was not certain I could move forward with Leap-For-A-Cure, I have decided I need to for others. It is not about me. I need to focus on awareness to fight brain cancer. Gray Matters and people need to know that! I have lost two special people in my life to this dreadful cancer: my father at age 42 (I was 12) and my daughter at age 37. Unacceptable! So today, 12 weeks to the day that I said for the last time “I love you Heather” and “Good-Bye,” I am meeting with LFAC’s core group of volunteers. We will continue our fight – with one less warrior – but with more energy than ever to spread the word. Please join our fight with a LFAC donation or with your offer to volunteer at one of our events. Forever love to Heather – my companion forever - , and a life lost too soon.
Five Months Later: Posted on April 4, 2017
Five months. Five months ago we lost Heather. It seems like yesterday yet a life-time ago. I miss her - we all do. When we lost Heather, we all lost a part of ourselves. When I wake - which is another story in itself. I sleep very little. The bags and dark circles under my eyes will verify that. When I wake, the first thing that comes to my mind is that it's another day without Heather. I vividly remember her struggles the last months of her life. I vividly remember her strength, her hope, her determination. I vividly remember her last days and nights - again, her strength, her hope, her determination. That kid NEVER gave up. So, as I struggle, I know that I, too, must never give up. It's only been 5 months. . . prayerfully, time will allow me to find strength, hope, and determination. I have read so many quotes about child loss - all are correct. Child loss is a different loss. It's a loss that cannot be put into words. And unless someone has suffered this loss, it remains foreign. I joined an online support group; I had to do something. But I only wanted a group in which all members have suffered this specific loss. Why? Again, because this loss is so different. Sharper. Crueler. More intense. And, certainly more difficult to accept. I've been open about our journey, and sadly our journey has not ended. The "after" finds us searching for yet another "normal." I've thought a lot about that. For 8 1/2 years we found a new normal on a regular basis. As difficult as that was, we still had Heather. She always made our life easier. Without her, the new normal is unwanted. The new normal is so painful. The new normal does not include Heather - only memories. What do you do with memories? Yes, they are nice to have. But they also bring heart ache. I'm so happy we were able to travel, to experience so many fun times. But now I do not look forward to traveling. I think about what Heather is missing. She loved our travel memories. She loved the sun. She loved family time. She loved life. Last week we traveled to Park City to see our daughter. It was the first time I had been on an airplane since last July - July 13 to be exact. That's the date we heard "two months." I could barely get on the plane. I tried so hard not to cry - I gulped a lot, but I did not cry. Heather and I traveled so often together and we made each trip memorable. Even that horrible last one on July 13, 2016. I never thought about a simple plane ride being so difficult. Every time we experienced something in Park City that Heather enjoyed, I cried. Memories. It's where I am today. Who knows what tomorrow - or next hour - will bring. Sue
Nine Months: Posted on August 8, 2017
Thirty-eight years ago, I was eagerly awaiting Heather's arrival. Of course, we did not know the gender - only a few did in 1979. Many thought we were "trying for a boy" because we had already been blessed with two girls. Funny thing, we were not trying at all. But God knew he wanted us to have one more and He wanted us to have another girl. Jon always said, "I just want my kids to be healthy." (Such a cliche', but oh, so true.) And we were blessed with a healthy little girl. So, today, which marks the 9 month grief journey without Heather - our healthy baby girl - will be a difficult one. I have learned so much since April 2008, and I have learned so much more since July 13, 2016 (the day we heard "two months"), and even more since November 8, 2016. A piece of my heart is forever gone and the rest of it remains broken. I can never be the person I was prior to April 2008, prior to July 13, 2016, and certainly prior to November 8, 2016. Once I realized I needed to stop looking for that person, grieving and healing became easier. Yes, I say healing because I have two other daughters, a granddaughter, and a husband who need to know I still have room in my broken heart for them. They give me hope and keep my heart from crumbling beyond repair. Heather became my teacher on life and death, and now it's my job to take what she taught me and put it to use. This past year has strangled me with firsts: Thanksgiving, Amy's birthday, my birthday, Christmas, New Year's, Valentine's Day, Easter, Mother's Day, two vacations, Father's Day, Michele's birthday, July 4, and next up: Heather's birthday. One of the most difficult firsts was going to my sister's in San Jose - a house we called home for at least 50 trips to UCSF. Too much - but I survived. Each 8th of the month has been a day filled with tears and memories. We endured selling Heather's house and moving her belongings out one week after her funeral. I had to make decisions in one week that people try not to make for at least one year. We moved this summer as well. All those special spots for Heather's mementos will now need to find a new resting place. And, I cannot ignore the painful decisions we have made regarding Heather's final memorial marker. Someone told us, "Do not rush into making decisions. This decision is a lasting one." So, after nine months, we have finally approved the marker and now await its completion. And, I will be returning to my adjunct position at Midland University after a year's absence. Many, many necessary moves and changes this past nine months. While I'm forever changed and forever missing a piece of me, I am grateful. I'm grateful for the friends who have shared their child loss grief with me. They have truly been my mentor for survival. I am grateful for the friends who have tried so desperately to understand, but appreciate that they cannot. I am grateful for my immediate family - no words can express how much I love them. I am so grateful for a special cousin - John Maser - who has kept a special spot in his heart for Heather. And so many of Heather's special friends keep in touch with me and visit her often. I am also grateful for the online support group I belong to. I soon realized how many others have lost children. We all know about "it," but we never believe it will be our situation. We somehow look at the world and think how sorry we are for people who lose their children, but we move on with our lives. That was our family too - until it hit us. We just never knew and never understood the lingering torturous pain. No, people do not "move on" after losing a child. No, it's not anything like losing a grandparent, parent, cousin, best friend - or anyone else. It's the worse pain imaginable, only unless you have lost a child, you cannot even imagine it. Life goes on for everyone else, but not for the grieving parents. Today I'm going to focus on happy memories, which also bring tears. I am going to stay busy so I can try to make it through the day. Yes, 38 years ago I was hoping Heather would arrive a little early - hot August days do not set well with pregnancy. Today, I'm hoping to make it through the painful reminder that she is gone and will not be the healthy adult child we had always thought she would be. Love you baby girl!
Happy Birthday, Baby Girl: Posted on September 21, 2017
Well, we survived another first: Heather's 38th birthday. I think the day was made a bit easier with all the supportive gestures from so many people. So, thank you for thinking of us. One beautiful moment was when we drove up the cemetery to visit her after dinner. There, standing around her, was many of her co-workers with green balloons and cupcakes! We each wrote a message on a balloon, sang Happy Birthday, and let the balloons go. As we celebrated, a rainbow appeared. It had to be Heather showing us her appreciation and love. We have three more firsts that will touch my heart: Addison's 3rd birthday (the first without Heather), the first Monster Bash, and the first "anniversary" of her passing. These will be difficult, as all firsts have been. Our lives have changed, but she continues to be my teacher and guide to live a meaningful life. I honor her with trying so hard to think of hope, love, forgiveness, humor, and so much more. She will forever - and I mean forever - be a part of our lives. Even though a piece of my heart is missing, and I know my heart will never be repaired, I still have love in my life: Jon, Amy, Michele, Addison and many more. Heather, some day we will meet again - I have to believe that. Then our twisted humor will reconnect, but it will be more appropriate Love you, baby girl.
365 Days of Firsts: Posted on November 18, 2017
Yes, it has been 365 long days. Honestly, I never thought I (we) would make it through the first three months let alone twelve. In fact, for the first three months, I'm not certain I wanted to. Don't get me wrong; I remain incredibly sad and I miss Heather as much now as I did then. But, I have had time to think with my head and realize the importance of living FOR Heather. She fought so damn hard and with such dignity that I would never disrespect her by not picking up my heart and carrying it with me instead of remaining in the dark fog of constant grief. The year of "firsts" suck! I can't think of a more appropriate word to describe it. The most difficult may have been Mother's Day - no, Father's Day - no, Heather's Birthday - no, her Angel Anniversary - no, last Christmas - every "first" was ugly. The first visit to her grave site after her funeral. The first time I saw her friends post "fun family" gatherings. The first time I had to go to her work to see my doctor. The first time I gathered some of her clothes and just held them and sobbed on the floor. Oh, there were 365 days of firsts. But . . . there were some good firsts. The first therapy pool (Heather's Healing Pad) at Methodist Health System became Heather's Legacy. So many cancer and neurological patients will benefit. In fact, the first patient to use the pool is a cancer patient suffering from so much pain. The first Monster Bash (2017) that raised over $50,000! The first Lancer/LFAC game to raise over $15,000. The first time I could think of a memory that brought a smile and warmth instead of a tear and heartache. The first day I made it without crying. Yes, those days do become real. My first grief group for mothers who have lost children. And, my first (and only) meeting with former Vice President Joe Biden - 20 minutes of uninterrupted sharing about our children. Of course, there were many more "firsts" in those 365 days. Some good. Some heartbreaking. Some bitter/sweet. But, we survived! Are we different than we were one year ago? Yes! So many lessons came our way. Hope. Faith. Friends. Family. Heather always lived with hope. She taught me how to live with hope and that continues today. I have to believe that hope for the future is alive and well. Hope for peace. Hope for continued support. Hope for a cure. Hope that all lives are worth living and life should never be taken for granted. Faith - faith that God has a plan. We are not supposed to understand, only believe. Faith that Heather is in a better place (although I hate that phrase). Friends - Our family has the best friends in the world. Heather's friends have continued to cherish her memory. They keep her close. I love them. And our friends have touched our hearts and held our hands - even those who have tried desperately to understand our grief. They have helped more than they probably believe. And to our friends who have walked this journey, they have paved the road to help our journey to be less bumpy. They give us the hope we need to keep our faith. Family - some have been there every step of the way; I believe others find it too difficult to acknowledge the pain. But our immediate family is tight. We are a bonded family of five - stronger than any large family could imagine. Life moves forward for everyone, except for a family who has lost a child. Yes, we continue to live a life, but we can never move on because we cannot leave our child behind. The loss it too great for parents to "get over" it. What we had to do was to begin a new life - one without Heather in our physical world. While our hearts may forever be broken, our hearts grew to allow more love to enter. We pay more attention to tragedy. We understand no one is immune to a life-changing moment. We keep those who have been our support closer than ever - our world may be a bit smaller, but it is more full of love and appreciation. I've been told year two is worse in many ways, but I find that difficult to believe. However, this journey has been travel by many, and I have heard it many times from those on it. Reality sinks in. The heart remains broken. Life around us is different. So I guess in a manner of speaking, year two begins another journey. Sue
Year Two is Kicking My Butt: Posted on April 2, 2018
Someone once told me that the second year of loss is worse than the first. I thought that person was crazy! How could I ever feel the pain that I felt during all our "firsts"? Now I understand. Year two throws reality and mocks the hopes and unrealistic desires of Heather coming back. Of course, my head told me, but my heart did not listen. Year one is filled with pain, shock, loneliness, fear, and much more. As we go through each day - we forget most of it. Our heads are in a fog and reality has not set in. Hope comes in many forms, and much of it is unrealistic. But that helps us reach year two. Now that I'm here, I HATE it. I think I would rather live in the unrealistic world - the naive world of make believe. We are still going through Heather's boxes - some I still cannot open. The missing her will NEVER leave and she is NEVER coming back. My "Mom's Group," the books I have read, and my online support group has helped my selfish grief. I no longer ask "why us?" because that is selfish. If it wasn't our family, it would be someone else's. I have learned it's OK to cry - even 15 months after Heather's death. I owe no one an explanation. I've accepted that thankfully most people I know remain "civilians" - people who have not experienced this HELL. Therefore, they often think time will heal this pain; they relate this pain to losing a parent/grandparent/friend because it is what they know. Child loss is a different pain - a nagging pain that keeps the heart from healing. I can cry thinking about a smile, a laugh, a memory or I can smile. I work hard to smile, but it does not always go that way. I remain focused on keeping her memory alive - she can never die again. So, we talk about her. Heather goes with us on all vacations - small and big (We have a special "H" Floozy Koozy that tags along, and it sits with us the entire time.) We visit the cemetery often and keep it alive with her personality - or try to anyway. And, I talk with her often. I'm still learning to look for her "signs" that she is with me. Speaking of "signs," I must share the following. First, you may not believe, which is OK. I, however, have flipped on my stance. Once skeptical, I am now a believer! Michele and I went to see Rebecca Rosen, a well-known Medium. It's a coincidental story as to how/why we were there, which adds to the belief system we were supposed to be there. The event took place at The Rose Theater, here in Omaha. I suspect the seating capacity is somewhere between 500-600 and it was full. I had never seen a Medium before, and I had no idea what to expect. As the evening began, Rebecca started with the "spirits" that were coming to her. She would begin sharing what she was seeing. She narrowed possible people/families with specifics - and some specifics were very targeted! About 8:15, I told Michele to visit with Heather and tell her to SPEAK UP! I wanted to "hear" what she had to share. But 8:30, 8:45, and finally 8:55 with nothing. The event was to end at 9:00, and I was disappointed, yet happy for those who could connect with their loved ones. To be truthful, I was looking for the Exit door. Then, at 9:00 Rebecca said: "I'm hearing from someone who had brain cancer." I jumped up and just knew it was meant for me. As silly as I must have looked, I did not care. As she narrowed her thoughts, others sat down and I remained. It was Heather! There is an entire list of specifics Rebecca shared in her 15 minutes with us. She could not have known these as they were too targeted - very little was generic. I truly believe we had our connection. I truly believe Heather is in a good place. I truly believe her spirit is happy. And while all of this makes me happy, it does not offer me the one connection I desire: her touch! In a strange way, I think it was a setback. My heart remains shattered. I struggle with daily life because I miss her so much. I'm trying - trying very hard. Based on what Rebecca Rosen shared, I know Heather reached out. She wants us to know she is happy and is OK. She wants us to continue our lives. I believe she knows how much we miss her and how much our love continues. She will always be in our broken hearts. One of the biggest fears child-loss parents share is the fear people will forget their child. I, too, fear this. Heather's spirit is so big, so colorful, so joyful - yet I fear others will forget about her as their lives move forward. I understand that, but I can't let it happen. Heather's purpose in life was to share joy, strength, and hope. She did her job and we owe it to her to keep it going - somewhat like a "pay it forward" idea. Selfishly, I need her. Easter is meant to be a symbol of hope, renewal, and new life. I know that is how Heather wants us to live; and with her by our side, I think we will make it. But we will never forget.