[evansmom]

Hi Jen!

Glad to hear Ethan is continuing to do well. The rashes may not be GVH. I remember Evan had exactly as you described - small pink to red blotchy dry skin patches. He only had them in his elbow creases and on his chin and they came and went with little rhyme or reason. We were thinking it may be GVH but it never amounted to anything and then just seemed to burn out. Maybe it was eczema, maybe GVH but in the grand scheme of all that could have gone wrong, very minor.

The day Evan had his transplant, we received a lovely anonymous card from his donor. We wrote him two letters, the first one shortly after the transplant day which he only received 3 months later and again at the one year anniversary, which he received almost right away. At the two year anniversary, once both parties signed release of info paper work, he sent us a beautiful email, very personal and emotional. Since then, we've emailed, facebooked and spoken on the phone. We were planning a trip in August to Tennessee to meet him but one of our dogs had to have unexpected surgery. We hope to get there this fall or winter.

As far as Give Kids the World/Disney with Make-A-Wish Foundation...absolutely INCREDIBLE. We had the time of our lives especially since we also chose to go once Evan was off his immune suppression med and back into life/school etc. Ethan will love love love it and so will you and your husband. The elderly volunteers at GKTW are soooo sweet to the children you won't have a dry eye watching them interact (I'm tearing up thinking of them). You all deserve an amazing vacation after all of this.

It is best to keep Ethan out of school until he's off the Gengraf completely but then it's fair game! Be warned: I continue to be very surprised at how often Evan comes down with a new viral illness that has him with fevers for a few days etc. He always kicks it on his own and this is how he is building a strong new immune system but my goodness, in the fall especially, it seems like every time I turn around, he's got something else! Schools are cesspools unfortunately!

Take care!