From the Beginning: 2008 Posts
Updated: Jan 14
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 (firstname.lastname@example.org or email@example.com). 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.
2010 POSTS - uploading soon