Wednesday, April 9, 2014

18 Years

18 years seems like a long time but also seems like it was just yesterday. I still remember sitting on the edge of the bed playing MBA Jam with my 9 year old brother, who was also my donor. I hadn't seen him much over the past 4 months due to infection concerns and because I had spent a great deal of that time in the hospital while he still managed to not miss a day of school. I vividly remember the basketball players on our video game lighting on fire as they dunked. As we sat there 'lighting up the dudes' and trash talking, we felt like kids again. But we weren't really kids in the full sense of the word - we had been immediately stripped of our childhood when we learned that I might die 4 months prior...

On January 6th, I was diagnosed with Acute Myeloid Leukemia. Only 500 kids in the US get diagnosed with this disease each year. I underwent two rigorous courses of chemotherapy before heading into my bone marrow transplant. 

The Transplant
It was unclear what we were actually facing. I was the third pediatric patient to receive a bone marrow transplant at my cancer center in 1996. To complicate this feeling of venturing into the unknown,a Bone Marrow Transplant isn't a procedure. It is a process - a long, complicated process, where even the physicians can't always tell you what's going to happen. 

Once I was admitted to the room where I would remain for over a month, I was hit with the hardest levels of chemo and radiation possible to hopefully wipe out any remaining leukemia cells. A person cannot survive this level of intense treatment without receiving an infusion of bone marrow/blood stem cells. After I received my brother's bone marrow,  I experienced severe acute graft-versus-host disease (my body attacked my new marrow) which stripped my intestinal lining and started breaking down my skin. My meds were increased to manage the GvHD, which resulted in a series of tonic-clonic seizures and an altered mental status that left me unable to operate even the simplest of things for weeks... 

Growing Stronger
It took months to gain back the 30 pounds I had lost during my transplant and, more importantly, my immune system. It took even longer to learn to accept what I had been through and my "new normal". And still, 18 years later, I continue to grow stronger... I sometimes worry about the side effects of my harsh treatment - Will I be around to see my kids go to high school, get married, have kids (or adopt dogs)... The reality is that none of us, cancer survivors or not, know the answers to these larger life questions. Therefore, I am dedicating this next year to appreciating life in its entirety... after all, 18 is widely recognized in the Jewish community as a symbol of life. So here's a toast to a year full of embracing and appreciating life! 

And YES... I will be celebrating this year again by running in the Boston Marathon!!! Since 2011, your generosity has helped me fundraise over $67,000 for innovative research at Dana-Farber Cancer Insitute - one of the top cancer research centers in the World. With less than two weeks to Marathon Monday, the push is on to see just how much cancer fighting we can do this year. If you'd like to join the fight (again), please consider making a donation here. As always, we have awesome prizes that will be raffled off for anyone who donates... not that fighting cancer isn't enough.

And in case you still needed some convincing, here's how the donations over the past couple of years have already started changing how we fight cancer...

Although our current therapies cure about half of all patients with leukemia and lymphoma,the other half fail treatment because their diseases become resistant to treatment. This often happens as a result of genetic alterations in their leukemia and lymphoma cells. DFMC/Barr funding has allowed David Weinstock, MD, to use a powerful new technology called next-generation sequencing to identify the genes that can cause this kind of resistance. Drugs that inactivate these genes could prevent resistance and lead to cures in many more patients.

Last but not least... every year on my cancerversary, my parents send me something awesome (usually my favorite flowers). This year, much to my surprise, I received a bunch of balloons. What would have normal been a fun surprise was actually an AWESOME surprise and here's why... Over the past couple of months, I have had the honor of getting to know one of our dedicated volunteer families - they come out to almost every run, blast 'Don't Stop Believing', and hand out blue peeps! Just two weeks ago, they celebrated the angelversary of their son, Matty - who passed away from cancer. 
One of the things they did on his angelversary was release balloons in a bunch of different places around town. Getting to know this family better has been one of the highlights of my marathon training this year, hands-down... so I couldn't help but think of how awesome this year's present from my parents was. In honor of Matty, Gussy and I let the blue balloon fly last night... Gussy is pretty confident that Matty was super excited to get it. What an absolutely perfect way to kick off another year of cancer-fighting! Fight On!


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