Madisen Behl

First post: Dec 1, 2018 Latest post: Aug 11, 2020
Where to start....I feel as though it was time to get things started on here even though Madisen's bone marrow transplant will not be taking place until "spring".  There are many things happening day to day that we would like to share with all of the wonderful people that are supporting us as we go through this life changing journey.  
Just a quick recap-Madisen was diagnosed with the rare blood disorder essential thrombocythemia or ET when she was 9 (2012). The main concern with ET is she had too many platelets which is a clotting factor.  She was very closely monitored with bloodwork and bone marrow biopsies while taking hydroxyurea (chemo pill) and a baby aspirin daily to prevent things like blood clots and strokes. Things went fairly smoothly with a few bumps in the road up until June 28, 2018 after her last bone marrow biopsy. We found out that her disease had progressed to myelofibrosis which is a very rare type of chronic leukemia. With myelofibrosis the spongy part in the center of your bones (marrow)  becomes scarred because your body is not producing blood cells normally. As of the last biopsy Madisen is at a 2-3 on a scale from 0-3 for her scarring . At this point the only cure is a bone marrow transplant before there is too much scarring in the marrow which makes the transplant riskier or it progresses to the next step with is AML which can happen very quickly. The big question was when to do the transplant. Over the last 5 months we have went through a wide array of appointments, emotions and ups and downs all while trying to figure out what the best route to go with our baby girl. She has an amazing hematologist/oncologist  (Dr. Fritch) at Children's in Minneapolis that has been guiding us every step of the way. We have gathered a few opinions over the last few months between Children's, Mayo and the U of M and still have 1 more opinion to go with a doctor in New York at Weill Cornell who is a specialist in myelofibrosis in pediatrics. Her last bone marrow biopsy was already sent out to New York by Children's and reviewed because of the rarity of her disease,  now the doctor would really like to meet her.  Dr. Fritch  at Children's and Dr. Smith at the U of M both encourage us to go and meet Dr. Kucine in New York. The more minds we can put together in this situation the better.  Dr. Smith from the bone marrow transplant team stated there are only about 40 known cases of pediatric myelofibrosis.  After a consult with the bone marrow transplant team at the U of M on November 8th  we have decided spring 2019 is the best time to go ahead with transplant before things progress to far. The BMT team at the U of M was absolutely amazing! Madisen has not been very opinionated throughout this entire process but when it came time to decide on when the best timing for transplant she had a very strong opinion. It has to be after 5-19-19, Aqua's Birthday. For those of you who aren't aware, Aqua is Madisen's emotional support dog. She wants to be with her on her 1st birthday. So it has been decided, transplant day will be on Monday May 20th or shortly thereafter.  This entails about a 4-6 week hospital stay followed by 100 days within 30 min from the U of M. As we get closer we will finalize the dates. Amazingly Madisen has 2  10/10 matched siblings, Brooke and Ryan! As of right now Ryan will be the donor.  There is some more genetic testing that will be done on both Brooke and Ryan yet before actual transplant that I will touch more on as we get more info. I will keep you all updated with journal entries from here on out. Even though this may have seemed long, I feel as though this only touched on things. 
Thank you all so very much for your support! We wouldn't be able to get through this without you!

Melissa Behl 

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