March 7, 2007
The pulmonologist compared Adrienne's PFT to two previous ones. Last year's was down a bit and this most recent one is very similar to the one done three years ago. Thus, there isn't really a change and he described it as a "mild restrictive defect." So, in the end, it was just a difference in interpretation. This is good news.
Adrienne will be coming home tomorrow for her spring break. The port is still a problem so we'll go on Friday to try to sort it out. Adrienne thinks it must be the valproic acid causing the problem since the issues began when she started that drug.
March 2, 2007
I got a copy of Adrienne's Pulmonary Function Test report yesterday and the results were a bit concerning. Her problem, a result of interstitial pneumonitis after her first transplant, was previously classified as a "mild restrictive defect." The latest report calls it a "moderate restrictive defect." Many medical issues are described as mild, moderate, or severe, each describing a worse condition. I don't know if this is a difference in interpretation or if it represents a real change. Yesterday, I had two previous PFT reports sent to City of Hope for their pulmonologist to compare. I was concerned that the node in Adrienne's lung might be causing a problem but the doctor said this is definitely from the pneumonitis and that the node isn't causing a problem. Our understanding was that lung problem would remain stable unless Adrienne had other treatment, and we've purposely stayed away from drugs like bleomycin that have lung toxicity.
Adrienne completed her application to be a visiting student at Columbia University in the fall. She should have an answer in mid-April. Here's an inciteful paragraph she included in her essay:
Now at Claremont McKenna College, I try to be a normal college student despite my cancer. I am majoring in Psychology with a Leadership Sequence; I currently work as an intern at the Henry Kravis Leadership Institute; and I am the vice president of Straight But Not Narrow, an activist club on campus. 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.
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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.
1 comment:
I'm blown away by that last paragraph . . . what a concept. I'm glad the PFTs are what you expected. Best to you all.
Karen, Clare's mom
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