I immediately missed my hotel like room from Riley North. I tell people I feel like I am in the
attic of a sanitarium... it also really made his condition sink in. Also, I lost my bathroom.
The whole floor shares a bathroom and the shower is in a different location - basically a
closet. To say it is not pretty does not describe it well enough. But that really doesn't
matter now does it??? So more bad news, another test came back positive for RSV - a bad
cold virus kids can get (but not you or me, we are a bit tougher for that one). Normally a kid
would fight it off with a bit of help, but Sebi doesn't have much to fight it off with....at this
point things are sinking in fast....
He's got a great team of doctors...transplant, gene scientist, infectious disease...did I say
things were sinking in fast? Yes, hearing about the transplant was another tough day
(yesterday). He will have to have chemotherapy to destroy what few cells he has left for an
immune system before the transplant. After the transplant he will be extremely susceptible
to any type of germ and will have to be in complete isolation for a few months as it is
extremely important that he doesn't get an infection.
So this takes you to almost the current situation. For more updates read my daily journal
entries.
attic of a sanitarium... it also really made his condition sink in. Also, I lost my bathroom.
The whole floor shares a bathroom and the shower is in a different location - basically a
closet. To say it is not pretty does not describe it well enough. But that really doesn't
matter now does it??? So more bad news, another test came back positive for RSV - a bad
cold virus kids can get (but not you or me, we are a bit tougher for that one). Normally a kid
would fight it off with a bit of help, but Sebi doesn't have much to fight it off with....at this
point things are sinking in fast....
He's got a great team of doctors...transplant, gene scientist, infectious disease...did I say
things were sinking in fast? Yes, hearing about the transplant was another tough day
(yesterday). He will have to have chemotherapy to destroy what few cells he has left for an
immune system before the transplant. After the transplant he will be extremely susceptible
to any type of germ and will have to be in complete isolation for a few months as it is
extremely important that he doesn't get an infection.
So this takes you to almost the current situation. For more updates read my daily journal
entries.
Sebi's story
www.lovebubbleboy.com
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