"Believe with all your heart!" is what Nicholas' about the little hearts in the photo!
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!
Ten 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, go to every other day and are now on the highest dose daily.
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 St. Judes in 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 NEW 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.
This is the skit the boys did at Camp!
Journal
Thursday, July 2, 2009 12:06 AM CDT
Hello,
Nicholas is getting transfused while Spencer watches! Nicholas woke up by a kiss from him this morning. It was just precious!! Then he announced that he was going with us for transfusions! He went with me to Sam's and was fascinated. Of course, he wanted everything! No, he didn't get it! I'm a mean mommy! ;0)
Nicholas' counts were Platelets 25k and Hgb 9.2. I don't believe they are correct but if they are I'm thankful! He was white as a sheet this morning. He is still coughing so hard that he throws up and usually he messes on himself. Whew! We made it to Norton before we had to stop and clean up! Then, Spencer got sick and threw up as well! I know! I know! Only we could have so much going on and then add to the bowl of miseries! LOL!
Nicholas had several coughing spells during the night, usually around 2:30 and 6 am. I'm still giving breathting treatments during the night too. He coughs so hard that I'm afraid he will rupture a blood vessel and I'm glad he had platelets on board. They are going to do a post tx count to see how high his counts go up afterwards. I'm not sure what can be done about it anyway!
Mamaw is going for more tests today and asked us to pray for her. She had a headache yesterday but woke up feeling much better today. She is more alert in some areas. She even caught some of my crazy jokes and laughed at the right time! She is walking sometimes without the walker but other times too weak and needs the wheelchair.
Please rem all of us in your prayers and all the children getting treatments, transfusions, or transplants.
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