When we got here we went through the standard height and weight measurements. Then they repeated his EKG because they somehow lost the previous results.
We hung out all day watching television which was wonderful for Jackson. We don't watch much TV at home, so he feels like it is a treat.
He got his chemo in the afternoon and now we are doing our best to prevent some side effects. The chemo he got (Carboplatin and Thiotepa) cause mouth sores which can cause more serious infection later on, so to prevent that we do 'mouth care' four times a day. He has to brush his teeth and then swish and spit two different mouth washes. Surprisingly the mouth care has caused the biggest fits so far- it is just one more thing that is out of his control.
Thiotepa is the chemo drug that I have been most worried about. It is known to cause AML (another type of cancer- leukemia) down the road. But more than worrying about that, I have been freaked out about the more immediate side effects. Thiotepa exits the body through the skin, and if there is anything tight or constrictive on the body it causes burns. To help prevent burns Jackson has to shower 3-4 times a day for the first 4 days of our hospital stay. And they change his bedding that often too.
Jackson is SO exited to get to shower. Because nothing adhesive can be on his body he can't wear a bandage over his central line and they make us wash EVERYWHERE with soap really well. So, he gets to have a 'normal' shower. He is in heaven. He hasn't had a regular shower since June.
He wears a twill tape necklace to hold his tubes in place so that they dont get pulled out and we are figuring a way to keep the end caps dry while he showers.
This morning his shower has already lasted almost half an hour, and as I type he is still in the shower. I can't get him to get out. Last night he said "the shower is the best part of bone marrow". He also told me "I never felt so good with my line unpackaged".
So far, so good. Today is his second and last day of chemo, then tomorrow he gets a "rest day". And Monday he will get his new bone marrow. After that, we wait for the new stem cells to grow. From here we hope for the best and try to prevent complications.
Here is a little reminder that tomorrow is the day our ward is fasting for Jackson. Thank you in advance for your prayers.