Adrienne is home for just a few days before leaving for New York on Friday. We have a lot of things to take care of in a few short days, with the most important being getting her "deported." Tomorrow, the port that's been there for almost 2-1/2 years will be removed. Today we met the surgeon and really liked her. She usually doesn't work on people over 18 but she made an exception because my friend's husband (a PICU doc) asked her to make an exception for Adrienne. She knows almost every surgeon Adrienne ever had at LPCH so it was nice catching up. Small world.
Sometimes, I try to express my thoughts and feelings about Adrienne's disease but can't find the words. I was looking at Alese's web site and read what her mom wrote, and she said it very well. Here's a link if you're interested: http://www.alesecoco.org/Parents.html#mom. Also take some time to read Alese's journal. Her parents want to start a foundation to research cures for Hodgkin's Disease for people like Adrienne, Alese, Erika, and many others.
These are nervous days for us and we're trying not to think about Adrienne's disease all the time. The doctor says it could take 6-10 months before Adrienne has a response to the valproic acid. It's hard but as long as Adrienne is feeling well, we're going to wait for a response. We don't think intensive chemo is the answer for her and we'd rather she enjoy her life for the next few years than spend it in doctor's offices and in the hospital, or worse.
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Adrienne was diagnosed with Hodgkin's Disease in 1996 at age 9. She had multiple relapses, two bone marrow transplants, and a range of chemos and radiation therapies, and passed away on October 1, 2009. We are heartbroken.
Out with the Girls
About Adrienne
- Adrienne
- Adrienne was very much like others with Hodgkin's Lymphoma, the most common cancer in teens and young adults. What was unusual is that she had it for more than half her life and ultimately, it took her life. Hodgkin's is curable for about 80% people, but Adrienne was one of the 20% for whom a cure was elusive. She considered herself lucky since treatments had been there for her with each relapse but she ran out of treatment options and her body just couldn’t take any more. As she said, "Though I’ve now had cancer for most of my life, I no longer plan my life around it; instead, I try to plan cancer around my life." We hope you can take inspiration from her and how she lived her life.
2 comments:
I wish you the best on your trip to New York, and that all good things happen there this summer. I'm sorry to hear of your friend Alese.
Scan to scan is a hard path. Take care of yourselves, and know that I'm cheering you on all the way.
Adrienne and Alison, you have my love and support, and I'm glad we met.
-Karen (Chili's Karen!) =)
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