This is how our story begins. On 12/9 Matt was diagnosed with chronic myeloid leukemia. It has almost been three months, but seems like a year has passed. CML causes rapid growth of the immature blood forming cells in the bone marrow, blood and body tissues. In cml, part of the DNA from one chromosome moves to another chromosome. When this happens with chromosome 22 and 9, it is called the Philadelphia Chromosome. This is not passed from parent to child. This creates an abnormal fusion gene called BCR-ABL. This gene in turn creates an abnormal protein called tyrosine kinase. This enzyme promotes the uncontrollable production of white blood cells. A normal white blood cell count is 10. When Matt was admitted to the hospital his was 330. Matt is currently taking a chemotherapy type drug called Gleevec. This drug works by binding to the enzyme and acting as an off switch. The cells then stop growing an ultimately die. Matt is considered to be in the chronic phase or stage 1. The goals of treatment are a hematological response, cytogenetic response and molecular response.
HR- reducing the white blood cell count and maintaining it at a normal range. We have accomplished this!!!
CR- reduction or elimination of the philadelphia chromosome from bone marrow cells.
MR- reduction or elimination of the abnormal fusion gene BCR-ABL.
Our hope is he reaches the CR and HR in two years.
Matt has minimal side effects from the Gleevec. Fatigue and bone pain mostly, but that could be his training for the triathlon he plans on doing in June. I am so very proud of Matt, he has never asked why me, he never complains and he has taken the bull by the horns so to speak. As scary as this is, he has managed to put his family at ease. We are at the moment living a very normal life. When all of the what if's try to sneak into my head, I follow his lead by enjoying the present day.
We are doing Light The Night Walk on October 13, a fundraiser for blood cancer. Our team name is Team Crush Blood Cancer. Anyone interested in donating can go to,
http://pages.lightthenight.org/lv/LehighVy12/TeamCrushBloodCancer
Good luck. I was DX in 2007 with a young family and I know exactly how much of an impact this can have. The good news though is that I have got progressively better and have in fact had a third child since, something that seemed like and still sometimes when I think about is a little bit nuts, but the way I look at it I need to carry on my life and this came at a time I was growing my family so that shouldn't get in the way.
ReplyDeleteI wish you all the best on your journey, it's at times very difficult, but they've made fantastic leaps forward in disease management and it's a much different prospect now than what it was a dozen years ago
Crispin, thank you so much for your comments. Congratulations on the addition to your family. I am really grateful that you took the time to post your story. It really lifts me up to hear how well others are doing and like you said just carrying on with life. I have to admit that feels a little odd sometimes, but with four young children there is no other way. All the best to you and your family!
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