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
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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