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Hunter is our honored teammate. He's 3-years-old and was diagnosed with Leukemia when he was just over a year old. His story is below and I also encourage you to check out his blog http://www.healinghunter.com/.
Hunters Story (from his mom)
When I went to the Team in Training Summer Kick Off two weeks ago, I was quite thrilled and impressed over the amount of love and support that is out there for people battling cancer. Constantly choking back the tears over the enthusiasm that was generating throughout the room, it was pretty amazing what people are willing to do to raise money and do something really wonderful for those around them struggling with a disease that desperately needs to find cures.
While listening to the speakers, a few people mentioned some statistics and I had learned that every 4 minutes, someone is diagnosed with a cancer/blood disease and every 10 minutes, someone dies from this disease. It seems as if our life has been these statistics for the last 2 1/2 years. We've lived in the hospital amongst many others fighting this deadly beast and we've seen many survive, we've seen many perish and we've seen family after family get admitted with the shock and devastation of what has now become their own personal fight.
Hunter was 14 months old when he was originally diagnosed with AML Leukemia. Before his diagnosis, this was a blood disease that I knew nothing about. I do remember seeing commercials from the City of Hope or St. Judes or one of the many other cancer organizations out there, but it was nothing that I ever personally related to or even thought that someday.........that would be my child in one of those commercials. My husband and I also remembered an episode from "Curb Your Enthusiasm" with Larry David, and one of the jokes throughout the episode was whether or not a particular child had the "good" Leukemia or the
"bad" Leukemia. The joke, obviously, wasn't so funny to those in the episode that were dealing with the child with Leukemia, but that was Larry's comeback whenever the conversation of Leukemia came up. We later learned that Hunter had the "bad" Leukemia. The "good" one is apparently ALL Leukemia, since the treatment schedule can sometimes be done mostly as an out-patient and the survival rate is a little higher. And the "bad" one was AML, since it's slightly deadlier and the chances for complete cure was much lower. Then what's even worse is that Hunter had the most aggressive type of AML........so therefore we had the worst of the worst. And those were our few references when the doctors said, after a misdiagnosis of the
stomach flu, about 3 weeks of testing, scans and biopsies, that they finally have an official diagnosis. And that diagnosis was AML Leukemia, subtype m5 and m5 has a worse diagnosis then all the other 7 subtypes.
So let the ferocious battle begin.
We were terribly frightened, sick to our stomachs, and just plain floored that this is what our life had become. We weren't quite sure what the treatments had in store for us, but we knew there was a chance that we could lose him and he might not make it to the end of his 5 rounds of chemo. Several things could have gone wrong.......aside from just the cancer not responding to chemotherapy. It was a rough 8 months and living in the hospital for most of that time was a pretty bizarre and life changing experience. Hunter ended up pulling through after several scares and infections and complications......and they stamped him "cured" in
June of 2008.
While excited about finding a match that could possibly work, we were being held back from transplant because the chemo plan that he was on was not getting him to a full remission. The stats are better for a bone marrow transplant to be successful if there are no remaining leukemic cells in the body before conditioning for transplant begins. We decided to do another round of experimental chemo with hopes of getting him to that state. Well, after about two weeks of that particular round of chemo, the leukemia had come back, full force, and was essentially taking over his body. His marrow was about 85-90% Leukemic and his little limp body was barely moving. The doctors would not go to transplant with such a high percentage of Leukemia in his body because the chances of it being successful was slim to none.
At this point in time we were given the option of leaving the hospital to enjoy Hunter's last few hours, days, weeks at home. We opted to do one more round of extremely intense chemo with hopes of getting him down to below 25% Leukemia present in his body. We were told that if we did choose such intense chemo, his body could perish, we could loose him to organ failure or we could do severe, irreversible heart damage. At that point, it was either lose him then or give it hell........one more time. We opted to give it hell.
After that round, Hunter did suffer some heart damage, but he was alive and the Leukemia in
his body could not be found. So we successfully got him down to 0 percent. Too weak still to move, we rushed him into the transplant process which included another round of chemo, 4 days of radiation and then another splash of chemo. Again, we were told that any number of things could go wrong that could take Hunter's life, aside from the cancer. But, we were out of options and had to hope for the best.
Here we are now, 220 days post transplant and Hunter is still battling the after effects of a bone marrow transplant. We were told that the healing process can be very intense and last for as long as up to a year and so far we are about 6 months out. He is still on 26 medications a day, has to visit the hospital for clinic weekly, and is still in and out of the emergency room and hospital stays to battle infections and other complications. But, he's alive. And we have enjoyed him as much as we can for this extra time we've been granted. We are not out of the jungle, or even out of the woods, but every day away from the cancer is another day closer to complete healing.
I can't really begin to explain what it feels like to have the constant fear of your child's life being threatened day in and day out. It's a challenge like no other and a suffering like one I've never experienced. My heart breaks daily and there is a slight knot in my stomach that I have to battle with every moment of every day........in an effort to make it go away and continue to hope for the best. We will never give up on Hunter and from what we've seen, he will never give up on himself. He's in this to win it and he has shown over the years what it takes to be a true fighter. He's the strongest little dude I know.
In closing, we want to express so much love and thanks to the Team in Training for the awareness that they raise, the love that they spread the the kindness and support that seems to be never ending. Our hearts are full of hope and our bodies and minds are full of strength and determination. We are absolutely thrilled that Hunter is an honored teammate and are looking forward to all of the exciting and wonderful days ahead.
Hunter and family
