Here we go again

We were admitted into the LDS Hospital for a double cord blood transplant this morning. This is blood from baby girls that were born in 2001. They use stems cells that were in their umbilical cord which have been frozen. When he gets his blood tested from now on it will show he is female – but just with blood. It will be interesting to see Van’s hair line, color and texture of his hair when it comes back. With an unrelated donor you take on their attributes. But these are baby stems cells that haven’t figured out what they want to be yet – red blood cells, white blood cells or bone marrow let alone hair lines. The actual transplant is scheduled for May 14th.

Three days ago we started coming to the hospital every day to get the drug “Kepivance”. It thickens the mucus lining in the mouth and all over hoping to help Van from getting such bad mouth sores after chemo and radiation. He tells me he has very big lips. But he just feels that way because the extra lining is thickening. Some other side effects from the drug are: he has a very tan face, very sensitive hands and bald head that hurt when hot water touches them, rash, and of course he feels nauseas.

Going to Radiation in the basement

This morning they started full-body radiation. I’ve included a picture because I couldn’t believe the contraption he has to be in. Last month they made him lung guards that are made of steel and they hang exactly where they have marked his skin so the radiation doesn’t destroy his lungs. The tissue is so delicate. He stands while they radiate half his body and they turn him around and radiate the other half. They want him standing if at all possible so it is very hard when you want to throw up. He is trying not to sit on a bicycle seat if he doesn't have to.  A piece of plexiglas is in front of him.  He will do this twice a day for four days.

He made it until 3:00 today before he started throwing up. He is pretty miserable. This evening we were already going through the list of nausea drugs he could take and loading him up. They make him sleepy so we don’t get to talk much. He is listening to Hymns right now; it seems to soothe him (and me). I feel like the spirit is just hugging us when they are playing.

Lungs Shields

A friend shared this scripture with us: “My son, be faithful in Christ; and may not the things which I have written grieve thee, to weigh thee down unto death; but may Christ life thee up, and may his sufferings and death, and the showing his body unto our fathers, and his mercy and long suffering, and the hope of his glory and of eternal life, rest in your mind forever.” (Moroni 9:25) This is our hope and prayer also.

Bishop Fivas stopped by this morning, helped us bring our things up to our room and gave Van a blessing. It was beautiful and full of hope. We are excited to be on the road to recovery!  If you don't start the road, how can you recover?