jmerchlinsky
Earning My Ears
- Joined
- Apr 8, 2012
Hello Everyone, I am not sure if I am doing this right but here goes.....
We will be going to Disney sometime this year with MAW, we just had our preliminary meeting with our Wish Granter, and we are just waiting for some more details, which I will post as I know more....
A little about us My name is John and I father to four wonderful Children, Lexie (7) ABiagael (5) Cameron (4) John (2)(Wish Child), I am married to Angelina, we are from a small town in Pennsylvania...
A little about John, He was born a full term healthy baby (or so we thought) He kept getting ear infections and our pediatrician would prescribe antibiotics and they would clear up, but as soon as they were done they would come back, and the doctors did not want or believe that more tests were nescessary. So we switched pediatricians and that is when our journey began.
After the first appointment with the Geisinger Physician and some blood work , John was admitted to the hospital with blood counts that mimicked mal -nutrition, HIV, or some other viruses that they were not sure of. They did several bone marrow aspirations as well as blood tests x rays and the such, it finally took sending a test to CHOP, to get the answer we were looking for, it was a mutation in the ELA gene, which meant that John had Severe Congenital Neutropenia.
John was then transfered to CHOP after about a 4 month stay at GMC, his immunologist suggested a Bone Marrow Transplant, which was still experimental for this disease. On April 27th John will be a year post transplant, after his brother was a 100% HLA match. John Has developed Graft versus Host Disease which has baffled doctors since they were a hundred percent match (it isnt supposed to happen that way).
John is still on alot of anti rejection medicines including a ton of steroids, his skin is very red, and he is itchy all the time, he has to avoid sun light because of the GVHD, which means long sleeve shirts, long pants, hat and sunscreen, we are not sure if he will be able to swim, and there is still a chance that his body will reject the transplant. He is stable right now, but even the slightest cold could cause him to be admitted to the hospital. This has been a tough time for all of us, including his siblings, since he has gotten sink.
John is a very big Mickey mouse fan, as he carries two stuffed Mickeys around with him all the time. So when it came time to figure out his wish Disney was the Logical choice.
Well for now that is it.....will post more as I know more......
We will be going to Disney sometime this year with MAW, we just had our preliminary meeting with our Wish Granter, and we are just waiting for some more details, which I will post as I know more....
A little about us My name is John and I father to four wonderful Children, Lexie (7) ABiagael (5) Cameron (4) John (2)(Wish Child), I am married to Angelina, we are from a small town in Pennsylvania...
A little about John, He was born a full term healthy baby (or so we thought) He kept getting ear infections and our pediatrician would prescribe antibiotics and they would clear up, but as soon as they were done they would come back, and the doctors did not want or believe that more tests were nescessary. So we switched pediatricians and that is when our journey began.
After the first appointment with the Geisinger Physician and some blood work , John was admitted to the hospital with blood counts that mimicked mal -nutrition, HIV, or some other viruses that they were not sure of. They did several bone marrow aspirations as well as blood tests x rays and the such, it finally took sending a test to CHOP, to get the answer we were looking for, it was a mutation in the ELA gene, which meant that John had Severe Congenital Neutropenia.
John was then transfered to CHOP after about a 4 month stay at GMC, his immunologist suggested a Bone Marrow Transplant, which was still experimental for this disease. On April 27th John will be a year post transplant, after his brother was a 100% HLA match. John Has developed Graft versus Host Disease which has baffled doctors since they were a hundred percent match (it isnt supposed to happen that way).
John is still on alot of anti rejection medicines including a ton of steroids, his skin is very red, and he is itchy all the time, he has to avoid sun light because of the GVHD, which means long sleeve shirts, long pants, hat and sunscreen, we are not sure if he will be able to swim, and there is still a chance that his body will reject the transplant. He is stable right now, but even the slightest cold could cause him to be admitted to the hospital. This has been a tough time for all of us, including his siblings, since he has gotten sink.
John is a very big Mickey mouse fan, as he carries two stuffed Mickeys around with him all the time. So when it came time to figure out his wish Disney was the Logical choice.
Well for now that is it.....will post more as I know more......
right now its a lot of we might do this or that .. Once we have dates the real planding starts 
