John's Wish Trip

[jmerchlinsky]

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......

[Amerch]

Today we are at chop and the drs will let us know f john will have any restrictions when we are there . The only one that we need to ask about is if he can go to the pool. Since he needs to keep his skin covered and use lots of sun block we may have found a way to make it work we ill let every one know what the drs say later .

[Amerch]

The Dr said yes John can go in the pool when we go but !!!! Lost of sun block and a special UV Reflective swim suite will keep him safer as he must avoid as much sun as he can . How do i explain this one to a all most 3 year old . Oh well just another stepping stone for him some day he will under stand .

[jmerchlinsky]

Hello everyone, I was wondering how it goes with MAW once the wish granter has been there the first time, how long does it take to hear back, is there anything else we need to do, etc. We want to make this trip as special as possible for our little guy. He is just getting out of the hospital today after being readmitted for some complications....

[cogero]

Hi not sure how MAW works but your best bet is to join the Wish Trippers Unite thread in the Disabilities section. They have lots of facts and tips. It is a sticky in that section.

[Amerch]

Thanks got it on there too

[4monkeys]

Originally Posted by jmerchlinsky

Hello everyone, I was wondering how it goes with MAW once the wish granter has been there the first time, how long does it take to hear back, is there anything else we need to do, etc. We want to make this trip as special as possible for our little guy. He is just getting out of the hospital today after being readmitted for some complications....

It varies so much. We had dates pretty quickly. It is dependent on a lot of things and no one MAW trip is the same as another. No matter how much planing you do or Don't do.. the trip will be AMAXZING!! We went for my daughter in 2010 and it was the most amazing trip ever!!! Good luck, can't wait to hear more about your planning, dates and trip!

[Amerch]

Thanks all we know is we are looking at some time in oct right now its a lot of we might do this or that .. Once we have dates the real planding starts

[Amerch]

Oct1-7th We dont now where we will be staying or any thing else but we did set the date today ....

[billwendy]

Woo Hoo!!!! you will have so much FUN!!!! He will be so excited!!! Are you going to tell him about going to see Mickey or surprise him? The pool at GKTW is really nice and the play splash area is fun too!!