Good bye Ventilator

The Ventilator has been removed!!! Yeh!!! The first words out of his mouth were “I love you”. And the next were, “I’m so happy, I think I can make it another day”. They say to have a ventilator it’s like breathing through a straw with your nose and mouth closed and trying to suck on a strawberry – super difficult to breathe. He can talk a little but won’t be able to drink anything for a day or two until he learns to swallow again. He still has his feeding tube in so they can crush his pills, syringe them up in some water and push it down the tube.
When you have CML (Chronic Myelogenous Leukemia) in blast phase they treat it like Acute Leukemia. The only way to extend his life is to receive a bone marrow transplant. But when they checked his siblings they weren’t a match, when they tried the 12 million donors in the national bone marrow donor registry there were three maybe’s. But only one was a perfect match and right before the bone marrow transplant they found out this person had low platelets and so they couldn’t use him. We had one 9/10 match and the other one of the three didn’t work out at all. If they used the 9/10 match, Van would have A LOT of “graph vs. host disease”. So the next option was to use umbilical cord stem cells from babies. The stem cells come from the placenta and cord when the baby is born. This is usually thrown away but with a lot of testing weeks prior to birth, with a special company and if the funding is available, they are able to save a few of the cord blood. They test the blood, preserve it and freeze it until it is needed at a later date. When they did the match testing for Van’s type they found one 6/6 match and a 5/6 match. They were two baby girls born in March 2001. They gave both cord blood to him on May 14th. This is day 0. So every day after, they count up – today is day 21.
If you get cord blood it usually takes longer to engraft. The range is 25-55 days. Engrafting means that the stems cells that went into the bone marrow are deciding what they want to be: red blood cells, white blood cells and neutrophils. Neutrophils make up the immune system. So two days ago he had .1 neutrophils and yesterday .0 and today .1. They said it will go up and down but when he decides to engraft his counts will go up for three days in a row and that should be the first sign of engraftment. This is what we want but probably won’t happen for a few more weeks. This will be the beginning of an immune system that can help fight all the bacteria and viral infections he has in his body.
We are on the 6th floor in the intensive care unit of LDS Hospital. We’ve been here for a week and are looking forward to returning back to the 8th floor. They don’t know when that will be but we’ll take one day at a time.
Last night, I spent half of the night with Van (his sister spent the other half) so I could wake him up every time his heart rate went up so we could slow it down with deep breathing. They told him if he did this for 24 hours and not have any forced air breathing, he could get off the ventilator—and it worked! This morning when I came back, after sleeping in our old room on the 8th floor, I brought Van’s scriptures with the intent to play “scripture chase”. I was going to quote him a scripture he had marked and then have him use his fingers to tell me which scripture I quoted. But now we don’t have to use fingers, he can just TALK to me. It’s beautiful!!! Another tender mercy!