My Heart is Breaking

I hate to see Tyler in such pain, especially as there is absolutely nothing I can do to help. His throat is closed up so tight and causes so much pain that he is not eating or drinking anything. He's hungry and weak, but is unable to get anything down his aggravated throat. He's had less than a cup of milk and juice today. Thankfully he had several cartons of milk yesterday, but he wants to eat and just can't do so.

Tomorrow he will be getting a PICC line installed so that he can get nutrition through an IV. The doctor decided today to hold all of his medication except for 3, 1 of which he can get through IV. Still it is a struggle for him to swallow those giant pills. I think the pill makers might need to think about shrinking some of the pills a bit. When your throat is swollen, the idea of a giant pill is more than one can bear.

We spent our weekend at the SCCA, and then spent more time there today. He's gotten transfusions of both Red Blood Cells and Platelets, as well as some saline to help him hydrate through the esophogitis. He got a unit of platelets on Sunday and two more bags this morning, but still only got to a count of 47. The all-important lumbar puncture requires a minimum of 50 for a platelet count, but our doctors begged and the UW somehow agreed to do the procedure despite the slightly low count. We hope that the CSF they took today will indicate no leukemia at all and we can begin to focus on the next phase of this transplant.

We're back to SCCA for more transfusions tomorrow and I hope that it will be an easier one for both of us. Please pray that I have gentleness and patience as I encourage him to eat something tomorrow. I'm not being a very supportive partner this weekend because I am so worried about him. I need to push less and help more.

Because Tyler has barely eaten in the last 5 days, he is sleeping most of the time right now. With that in mind, we need to ask that phone calls are kept to a minimum for the next several days. We'll continue to post as we are able to, but we appreciate your understanding that it's hard to field phone calls when you are feeling beaten and tired.