Monday, February 28, 2005

Follow Up to Second Chemo

Adrienne's second chemo went much more smoothly than her first. With the port, she had no burning in her arm from the infusion. By taking Xantac and Claritin, the hives were much less severe and more easily controlled with Benadryl. She had a cold and cough last week, but is feeling much better now. She continues to go to school almost every day and is keeping up with her studies just fine. She says she doesn't even feel like she's on chemo.

Daniel is dealing well with the upheaval in his life. He particularly enjoys driving his sister to and from school on days when she isn't feeling well. Last week, he joined the track team. His calves are hurting quite a bit but, otherwise, he's having a really good time.

We are continuing our training and fundraising for The Leukemia & Lymphoma Society and Team In Training. Adrienne is working hard to increase her speed and her new (very expensive) running shoes seem to be helping both with her speed and pain from neuropathy (caused by past chemo). We continue to be overwhelmed by the support we receive from friends and family. If you would like to make a donation to The Leukemia & Lymphoma Society, go to our active page at

Thursday, February 24, 2005

Adrienne's TNT Speech

Last summer, Adrienne gave a speech to people considering joining Team In Training. This speech gives a good recap of her Hodgkin's Disease and treatment up to that point. I thought you might want to read it.


Hi, my name is Adrienne, I’m going to be 17 in a couple of months, and I’ve had Hodgkin’s disease for more than half my life.

I was first diagnosed when I was 9 after I had been itching and scratching until I bled for more than a year. A biopsy of a lump at the base of my neck confirmed that I had cancer. I didn’t really understand what that meant so I wasn’t really afraid. My treatment included a year of chemotherapy and radiation, which went pretty smoothly. I actually liked being bald but it bothered me when kids stared at me because I looked different and when I didn’t have the energy to play with the kids on the playground.

Amazingly, almost four years later, I relapsed, just days before September 11. I was 14 and getting ready to start high school, and this time, I understood what it meant to have cancer. My doctor figured I had some cancer cells left after my first treatment in 1996 and 1997 that didn’t grow for a few years until I had pneumonia, and then they started to grow very quickly. The standard treatment for someone in my situation was an autologous bone marrow transplant using my own cells. Before the transplant, I had chemo to get me back into remission but it destroyed my platelets and I almost bled to death one morning, the closest I’ve ever come to dying.

I did quite well through the transplant considering the risks, except for an incident where the lung tissues became inflamed, making it nearly impossible for me to breathe. They treated me with prednisone which temporarily distorted my appearance, but eventually my body returned to normal. My immune system didn’t recover as planned, meaning that I spent 6 months in isolation and out of school. Finally, I was able to begin my sophomore year in high school.

Just a few weeks after school started and 9 months after my transplant, my cancer returned again. This time, I was afraid of dying. The first doctor we talked with told me I couldn’t have another transplant and made it sound like there wasn’t much more they could do. My mom found out that every Hodgkin’s disease patient at Lucille Packard Children’s Hospital who relapsed after a transplant had died. She talked to doctors at other hospitals did a lot of research on the Internet, and found out that my chances of a cure were less than 10 percent. Then, my doctor told us about a new type of less toxic bone marrow transplant but it required a related donor. I have one brother and the chance of him being a match was only 1-in-4, but it turned out he was. We were all really excited.

I had my second transplant in February, 2003, at the Seattle Cancer Care Alliance, where they had done quite a few of these new procedures. They had told us that people usually have this done on an outpatient basis, but I was more sick than they expected and spent a month in the hospital. Just when I started to feel better, I got graft vs. host disease, which is where the donor’s immune system attacks the patient.

To this day, I remain cancer free but I have to live with long term affects from my treatment. I have restrictive lung disease from my first transplant, renal insufficiency from all the drugs I’ve received, and heart damage from the chemo I got during my first round of treatment when I was 9. Most days, I don’t notice that I’m any different from other people who haven’t had cancer treatment. Other days, I worry about what the future might bring. I don’t take anything in my life for granted.

One of the chemos I got before the second transplant caused neuropathy, which destroys the peripheral nerves. In my case, it attacked my feet and lower legs so I was in excruciating pain. I couldn’t walk and I was so weak that I couldn’t get up on my own after many falls. I started physical therapy with someone who worked with oncology and transplant patients, and she helped me build my strength and learn to walk again. I consider learning to walk again the biggest accomplishment of my life. This experience led me to TNT because, even though I could get around, I still didn’t walk like a normal person.

In August, 2003, I joined the Silicon Valley Walk Team with Team In Training. I thought a trip to Honolulu sounded nice and the fundraising sounded okay too, so my mom and I joined the team. I was overwhelmed by the fundraising support I got from people who knew what I’d been through, and we raised over $24,000 our first season. Mostly, I was amazed by the wonderful group of people who participate in TNT. My coaches have been right there with me through the entire experience and they not only helped me to walk again, they helped me complete the Honolulu marathon, 26.2 miles, not bad for someone who couldn’t even walk 9 months before.

I recently completed the Mayor’s Midnight Sun marathon in Anchorage, and I have my schedule filled with TNT and marathons for the next year. When I first got involved, I was thinking about what TNT could do for me. Now, I’m thinking about what I can do for TNT and The Leukemia & Lymphoma Society. I’m an honoree for our team and I try to help other honorees and participants wherever I can. I’m also a First Connection volunteer and I provide support to teenagers who are newly diagnosed with leukemia or lymphoma. And, I’m going to be a mentor this season to help people with both training and fundraising.

TNT is a fantastic organization and the great people will help you achieve your goals, whatever they are. Whether you’re looking to become more fit, if you’ve always wanted to complete an endurance event, or if you have a personal connection to the cause because you have a friend or loved one who has been affected by leukemia or lymphoma. In the last year, 6 children that I’ve met through my treatment have died. Their diseases were too aggressive and good treatments just weren’t available. I hope you’ll join me to raise money to find a cure for blood related cancers. You have a chance to make a difference in so many lives. Go Team!

Tuesday, February 22, 2005

Vacation, Port, Second Chemo

We returned last Saturday from a much-needed vacation to Mexico. We have a timeshare in Cabo San Lucas that we've been unable to use because of Adrienne's transplants and immunosuppression. We were ecstatic when Adrienne's oncologist told us to go. The weather was gorgeous, sunny and not too hot all week. Daniel brought a friend so they were off doing activities each day while Adrienne and I mostly laid by the pool reading and relaxing. We all went on ATVs on the beach, which was a lot of fun. All in all, it was one of the best vacations we've had.

Adrienne got her port yesterday. In surgery, they decided to give her a drug she's never had before and she had an odd reaction so recovery took a long time. She's in quite a bit of pain from the insertion but should be on the mend the next couple of days. It will certainly make Adrienne's life easier. She got her chemo yesterday in the port with none of the pain she experienced last time. Today, she says she feels totally normal, not like she got chemo yesterday. She hasn't even taken a Zofran today. She is getting Zantac and Claritin for the next week so we can, hopefully, avoid the hives and itching of the previous infusion. Adrienne's lumps have gone down and her itching has stopped, so we assume the chemo is working. A PET/CT is currently scheduled in another month, after two more rounds of chemo.

I've been trying to research possible clinical trials for Adrienne but there isn't much available. There is a clinical trial of monoclonal antibodies, which is on hold for "interim review" for awhile. I will check into it again in a few weeks but that would have to wait until Adrienne is 18.

Some welcome news: we returned from vacation to find a notice that Adrienne is now a National Merit Scholarship Finalist. No word yet on whether she'll get any scholarship money but we are hopeful. Adrienne will begin getting college acceptance notices in about five weeks, so we are waiting anxiously.

Monday, February 07, 2005

Follow Up to First Chemo

Adrienne's "easy" chemo with gemcitabine and vinorelbine turned out to be not quite so easy. First, she has a burning sensation in her arm where the IV was. It's been almost a week and it hasn't gotten any better. She will need a port after all.

Second, a full two days after the chemo, Adrienne got a bad case of hives and itching. She is probably allergic to the gemcitabine as about 30% of people have this reaction. Since she didn't have this problem when she got these drugs in 2002, she must have gained the allergy from her brother when she got his immune system in 2003. The symptoms are controllable with lots of Benadryl and a topical steroid cream, but the Benadryl makes her very sleepy.

I spoke with a doctor from the Seattle Cancer Care Alliance where Adrienne had her second transplant nearly two years ago. The procedure we had hoped to complete (donor lymphocyte infusion) has not been curative for people with Hodgkin's Disease. The best we can hope for is a longer remission. The doctor suggested that Adrienne remain on chemo for about 3 months and then receive a very low dose DLI, which should have few or no side effects.

Some good news: Adrienne is a finalist for a merit scholarship at Claremont McKenna. They will fly her down the first weekend in March for a visit to the college. Stanford also agreed to accept a late application from her, so we are rushing to get that done.

Wednesday, February 02, 2005

First Chemo

Adrienne had her first chemo yesterday, which went well. She felt fine this morning and went to school as usual. Adrienne had two cycles of this particular chemo, with good results, when she relapsed in 2002 so we know that it has few side effects.

We've decided to use IVs for the time being. Adrienne will get a port or Hickman later if needed, but right now it's nice to not have to fuss with it. The next chemo is on Monday, February 21, with infusions scheduled every other week after that for four cycles. Then she'll get another PET/CT scan to assess her response.

We are still in the process of discussing donor lymphocyte infusions. In this procedure, they collect lymphocytes from Daniel, Adrienne's donor from her allo transplant, and infuse them into Adrienne. The procedure really sounds quite simple. The goal is that Daniel's lymphocytes will kill Adrienne's cancer. The problem is that it usually causes graft vs host disease (GVHD), which is when the donor cells attack the patient. If you're interested, you can read about GVHD at

Adrienne wants everyone to know that she is doing well, determined to get rid of this awful disease so she can attend college next year. She has a very positive attitude that will surely carry her through.