Thursday, June 5, 2014

Day +4, Day +5 & Day +6 A Little Rough, but Doing Better

Day + 4, Ryan was still sick off and on and rested quite a bit. He didn’t eat or drink a thing. Everyone thought “Here we go; he is not going to be eating for awhile.” So, we decided to increase the number of anti-nausea medications he is on and the frequency in which he gets them. The team advised that the only real down side is that they can make him sleepy. I figure it is okay for him to sleep and rest more right now. I would rather he be comfortable than sick to his stomach and miserable. In fact, he slept so much that I was able to sneak away for about 20 minutes and get a free neck and back massage down the hall. (There are massage therapists that come in twice a week for parents and caregivers.) It was a really nice quick break. I must have been really tense because I still feel really sore from it!

Day +5 (yesterday), No vomiting or GI issues! At all!!! Ryan seemed to get some of his appetite back and ate small amounts of some very random things: a Starbucks chocolate croissant (his current go-to comfort food), snap peas and some peanuts. He even had some milk and commented that it was good and tasted like “normal” milk again. The nutritionist mentioned that he was able to eat about 25% of his calorie requirement for the day, which is really good. He also had more energy and played some games with the Occupational and Physical Therapists.

Day +6, Today Ryan has continued to eat and drink a bit and is expanding his interest in trying more foods. (I was worried that he would be on an indefinite diet of chocolate croissants.) He ate a few silver dollar pancakes, a small piece of focaccia bread, about 1/8 of a bagel with cream cheese and has requested a corn dog and chocolate chip cookie for dinner. A hot dog has sounded good to him for the last few days but he wouldn’t eat one because he was afraid that if he threw it up he wouldn’t like them ever again. (I am not sure that would be a bad thing.)

In addition, we have noticed that signs of Mucositis seemed to disappear and we haven’t seen any signs of mouth sores so far. However, Methotrexate is given at days +1, +3, +6 & +11 to try to prevent GVHD and it can cause mouth sores. He is receiving the third dose today and I am crossing my fingers that he doesn’t develop them. However, there is a pretty high chance he will. Most transplant patients get them. If so, I anticipate the progress we have made with eating will come to a halt.

The doctors keep commenting on how well he is doing for where he is in the process. It is still really early, but one of the doctors commented that “if he is doing this good right now, it is a pretty good sign.”

I am glad the doctors are happy with his progress, but I know there is still a lot that can go wrong, so I don’t want to get too far ahead of ourselves and I remain guarded. The first major milestone for a BMT patient is +100 days. I recently saw a BMT patient use the analogy that reaching +100 is like reaching base camp at Mt. Everest. There is still a significant climb even after that. For us, we just arrived at the bottom of the mountain, but we are feeling positive about the journey ahead.

Note: The attached note was written to Ryan from his cousin AJ. It is just so cute and from the heart that I had to share it.

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