We got a call from Cardinal Glennon today telling us the results of Madison's matches.. In the cord blood bank the best match was 4 out of 6 and in the donor bank there was one person that was 9 out of 10.. The perfect match was Harrison and Mae. At this time they aren't even considering the kids. Ryan and I have a meeting with the transplant team on Friday at 10am. They can do the transplant with a 9 out 10 match.
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The kids and I heard this song on our way to Vandalia this morning. It's funny how you can hear something and it just click! Every word in this song has to do with what we are going through. God has always used music to touch our hearts. It has been 8 days since our world turned upside down. Madison has already had four transfusions since then. Last week was a complete blur and to be honest reality didn't hit until Monday night. I finally broke down and asked the doctors those really hard questions. "Why does Madison have to have a bone marrow transplant?" "Is this serious?" "What is the bone marrow unit at the hospital like?" "Can our kids come and see Madison after her transplant?" One question after another I asked.. Even though I was in tears I had to know what was going on... Really going on! Madison has to have a bone marrow transplant as soon as possible. MDS/Monosomy 7 is aggressive and if we don't move quickly it will turn into leukemia. The type of leukemia is also aggressive and doesn't respond to chemo alone. Harrison and Mae even if a perfect match can not donate. Since we are still waiting on the genetic testing to return from Cleveland (6 weeks) it is too risky. In addition, Harrison and Mae also have low blood counts. There recent bone marrow biopsies revealed that there bone marrow is only producing 50% of the cells it should. Thankfully they don't have monosomy 7! Today, at this moment it feels like a waiting game. We are waiting for Madison's blood tests to come back so they can begin searching for a match through the Cord Blood Bank. After a match is found a date and plan will be set... We are waiting to see if this is a hereditary bone marrow failure syndrome that could affect Harrison and Mae. We are waiting for the fear to pass. When we were trying to have kids (four years of waiting) I loved the song "While I'm Waiting by John Waller. At this time in our life we draw near to our Lord and Savior and enjoy today for that is what he has given us. Below you will find previous post that I made on fb so you know what is going on:) April 30th, 2015 I haven't even processed our day, but know we have several pray warriors and want to update you all so our prayers can be specific. First, Madison had a platelet transfusion today. Early next week we will stay in the hospital get platelets and then the following morning they will put a port in and do another bone marrow biopsy (they want bone and fluid). Harrison and Maebry both had CBC done and both of them had low platelets. Due to Madison's diagnosis they both had bone marrow biopsies done today. Ryan and I had labs done and they were fine. There are several questions out there and we will have answers next week. Please pray Harrison and Mae have healthy bone marrow and dont have this disease. Please pray one of them is a match for Madison. Also, praises:)... Our team at Cardinal Glennon is amazing and blessed to have them! May 1st, 2015 Huge praise! Harrison and Mae DON'T have Monosomy 7!!! There is a genetic issue, but those labs are not back. Please continue to pray for them! Madison will have platelets on Monday and on Tuesday a port will be put in and another bone marrow biopsy will be done. Please continue to pray for her! There are still several questions that need answered and should be by the end of next week! Again, thank you for your prayers! |
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