Nicholas was mis-diagnosed with TAR syndrome at birth (9/10/98) and we were going for hand surgery at Shriners when a cbc showed that his platelets had dropped from 132k to 116k. They wouldn't do any more surgeries until we were seen by a hemotologist! We did and waited for the Fanconi Anemia (FA) test...It was positive of course and we were devastated. That was 5-14-01, two weeks after we had seen Dr Kalwinsky in St. Judes at Johnson City! We were sent to Memphis, TN but they do not do Bone Marrrow Transplants for FA! We then transferred to Cincinnati Childrens FA Comprehensive Center! It was such a relief to see drs who were aware of FA!
Nine years on a roller coaster which has included 27 surgeries, numerous drs visits, numerous pneumonias and hospital stays, g-tube then changed to g-j tube, v-p shunt for hydrocephalus, Trach due to paralyzed vocal cords, 5 PICC lines, 2 ports, and a Central line.
As his marrow has failed, he has had numerous infections and began G-CSF 3 times a week on 9/29/04, then his ANC was dropping even more and on 10-06 we had to up the dosage and go to every other day.
12/04 Nicholas was hospitalized with pneumonia and we began our transfusion dependency, platelets every two weeks and red cells once a month. His marrow hasn't really recovered and we have tried every bone marrow stimulator for two years and he hasn't responded to any of them. As his marrow continues to fail, we are going for transfusions at Johnson City more frequently: platelets weekly and packed red cells every two-three weeks.
4/06 We were told that Nicholas would have a 90 percent chance of having a fatal lung infection during the bone marrow transplant(BMT) due to the colonization of pseudomonas as well as 3 other bugs. A BMT is what would correct his failing bone marrow, restoring it new life. The one thing he needs to live, he cannot have.
Through all of this, Nicholas has continued to be a pure angel. Never complaining, thinks its a treat to go for transfusions, and a champanion bear hugger as well as butterfly kisser! He is our hero!
He has a wonderful brother named Spencer that loves to aggravate him but would fight a bear over him as well! He worries about him and thinks of him constantly, never failing to buy him a gift when he is out. He is the best brother in the world!
The Prayer Bears Website Send me your prayer requests or you can join us for prayer or to pray! Pray without ceasing!
Blood Mobile Unit will be:
Food City Wise on every 1st and 3rd Thursday of the month from 1 to 6 Food City Big Stone Gap on every 2nd and 4th Thursday of month from 1 to 6 (If a month has 5 Thursdays, - we will NOT be at Food City on the 5th Thurs.
Diggin' Life with Jesus Christ!
I've created a Facebook SponsorMe page for Nicholas, join Team Nicholas and be a supporter!
We came home Sat! He seems much better today! He just called and was whooping and hollering! He said, "MOM! I broke it loose! I can sneeze!" "Whoooo Hoooo!" He is so happy! I'm so happy! Thank the Lord! Praise the Lord! That is an answered prayer.
Dr K thinks its due to aspiration and not viral! That means he isn't contagious! He hasn't had a fever at all during this ordeal. Thank the Lord! I could tell yesterday that the pain was subsiding and he was feeling much better.
Keep praying! Pray for all the ones in bmt, treatments, and transfusions!
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