Forever 22*


Today would have been your 24th birthday! Only two years ago you celebrated your birthday and that of your brother’s in Santa Barbara, filled with hope that the new treatment protocol Dr. O’Connor had put in place for you during your visit to New York City the previous week, would work once again. Three days later you were admitted to the hospital by ambulance and in just another week we would hear from the pulmonologist what his prognosis was: that you would not survive this latest crisis. You tried! Boy, did you fight! The nurses and doctors could not believe how hard you fought to stay alive. But that was pretty much the case from the time you were diagnosed and all throughout your 13 year battle against a disease that was relentless in its quest to take your life.

I remember right after you were diagnosed you asked me on night if you would die and I told you that everyone dies one day but that chances were in your favor that you would not die from Hodgkin’s Lymphoma. I was not making things up either in an effort to soften the blow. You were 9 at the time and although you had been dealt the childhood cancer card the odds were in your favor: you were extremely young to be diagnosed with Hodgkin’s, you were being treated by the leading pediatric lymphoma specialist in one of the leading pediatric cancer centers, and Hodgkin’s was supposedly a treatable cancer with favorable outcome, “the cancer to get” (as if!!!). Whatever that means. Looking back it meant nothing. A 90% cure rate does nothing for the 10% that cannot be cured. And once Hodgkin’s becomes refractory it is one of the hardest cancers to treat. But back in those days right after your diagnosis you had no idea what lay ahead. None of us did. Instead we were optimistic and put on a brave face.

And at first everything seemed so promising. You had always been a Type A personality and tackled your illness with the same rigor you tackled everything in life. Your biggest motivation had always been academics and not even cancer treatments could put a damper on your schoolwork. Many times I took you to chemotherapy in the morning and when we were done early enough you insisted on going to school for the rest of the day. Days at Lucile Packard Children’s Hospital were often long and time consuming. You coped by bringing your schoolwork with you. In a backpack bigger than you.

After 10 months of chemotherapy and radiation you were done and more than ready to put this behind you and move on with life. But even when you are in remission “moving on” is not as easy as it might sound. Every cough, every sniffle, every pain, every itch, every check up brought worry, especially during the first year. Over time, however, life went back to normal and we all started to relax a little, then a little more, and then we were looking toward the five year hurdle, a timeframe that marks a milestone in the world that is cancer. You had plans. Big plans! Boarding school on the East Coast! College back East! Living in New York City!

I still remember the day I had the first inkling that something was wrong. Memorial Day Weekend 2001 we took you and Daniel on a trip to Universal Studios. We were sitting at breakfast in our hotel and you ate exactly three bites of food. When I looked up from my plate and saw your face I could only think of how gray you looked, just as you did the summer before you first diagnosed. Even though I did not want to raise any alarms and seem paranoid, deep down I knew. Your check up that summer revealed that your cancer was back. The bags that had been packed for boarding school had to be unpacked, dreams had to be put on hold.

As you had done four years earlier you took what came next in stride, keeping up with school work while being prepped for and during your first Stem Cell Transplant, still hoping for a cure. Stem Cell Transplants had become the routine after relapsed Hodgkin’s Lymphoma and many patients never look back. You had a very hard time with the initial salvage chemo but overall the transplant was considered a success. Except that instead of the routine 100 days of isolation you had to be isolated for 6 months as your blood counts took an unusually long time to recover. A sign of things to come. Just 9 months after your transplant you relapsed again and this time Stanford did not have a magic bullet. Instead you were now facing a reality where  a cure was no longer a given. It became more and more clear that you had fallen into that 10% of cases for whom Hodgkin’s Lymphoma becomes a life long disease. Still you did not give up but went to Fred Hutchinson’s Cancer Center in Seattle where you had a reduced-intensity conditioning allogenic (mini) transplant with your brother as a perfectly matched donor. This was extremely hard on you and there where times when we could not imagine how you could get out of this and ever live a long and healthy life. What was supposed to be an all outpatient procedure turned into an ordeal that left you totally bed ridden for four weeks and resulted in complete atrophy of your legs. You literally had to learn how to walk again with countless hours of physical therapy. You were a model patient, determined and tough as nails. The drugs you had to take to keep your body from shutting down left you bloated, bald, and hairy all over. You only laughed when you shuffled to the fridge to grab another muffin to satisfy the constant appetite. We have photos from that time and when I look at them I can hardly believe the person looking back at me is you. You persevered! You came back home, went back to your high school and relapsed!

With the third relapse came the realization that your life was now going to be permanently marked by lymphoma. The question was how long could the disease be kept under control and how much quality of life could be given to you throughout various treatment protocols that were to follow. Whereas others might have given up at this point, you marched on to the next  chemo and graduated high school on time with your class, looking forward to college.

College was supposed to be on the East Coast but it became clear that a university closer to home with a major cancer center near by would be preferable. And so you went on to Claremont-McKenna. You took a full load of classes and had treatments at City of Hope. You thrived. I can honestly say that moving out on your own and attending college was probably one of the best things that ever happened to you. Not many of your coeds knew about your cancer and since you never again had chemo that made you lose your hair your personal ongoing battle was not exactly obvious. You once said that “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” and I think this came true during your four years at McKenna. Even though you had one treatment after another throughout the entire time at college, just to keep the cancer more or less controlled, you barely missed a class and even managed to spent a semester in New York City, making another dream come true. I think even you would admit that at times it was not easy, days when you felt ill, the never ending fatigue, countless trips to and from the clinic, endless hours of tests, treatments, scans.

In May 2009 you graduated with Honors with a degree in Psychology. By that time a couple of clinical trials – the forefront of cancer treatment, treatment protocols that only an unfortunate few get to try out to see how they might work, if at all – you had been on had failed and your cancer was growing rapidly and spreading throughout your entire body, up and down your spine, and in your lungs. You were in constant pain and almost permanently short of breath. Quality of life was fading fast but you kept on plucking along, with plans for graduate school and a future life as a math teacher. But this time it was not to be. One week into the second term of summer school you finally had to quit, but even then you asked your mother not to cancel your class until you had already been moved to ICU and could no longer deny the fact that you could not possibly make up the curriculum. To say you were driven would be an understatement.

You wanted to live a normal life more than anyone I know, a life not interrupted by cancer, a life most of us take for granted. But it was not to be. Six weeks after you were hospitalized two years ago this week, five weeks after your doctor told your mother you would not live through this, you passed away from the disease you had battled against for 13 long years, a disease that had held the winning end of the stick from the beginning, a disease you never once used to feel sorry for yourself. You bravely fought until your last breath, with lungs totally ravaged by cancer and its cruel effects, barely weighing 80 pounds. A breath that had to be taken away from you by turning off the ventilator that had been pumping air into your lungs for four weeks straight. In the end maxed out, at its highest setting and still unable to give you enough oxygen.

We miss you!

* reposted from last year with minor edits, because, really, there is not much else that can be said!

Today’s Running Tip: There will be no running tip today!

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