Stephen is doing fantastic in the important areas of his treatment and transplant. No fevers, no rashes, nothing weird that the doctors can’t figure out. We were told to expect a much more difficult time on the second transplant. We have been happily surprised. It’s not over yet but we are hopeful. However, he does have one big problem. He is one of the unfortunate transplant patients who got mucositis from the radiation and chemotherapy. Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract. Basically open sores in your mouth and throat.
He was treated with kepivance for 3 days before his therapy and again for 3 days after his therapy. This treatment thickens the lining of your mouth and tongue. It is given to diminish your likelihood of getting mucositis. It really makes you feel miserable because your mouth is thick and your tongue is huge. When he was treated with kepivance after his radiation and chemo it made eating really difficult. Food didn’t break down in his mouth the way it should so it was very dry and hard to swallow. The radiation had also affected his taste buds so that nothing tasted like he expected it to. We had some good laughs with this (Stephen included). He kept asking us to go get food that sounded good to him. We bought him rice bowls, chicken nuggets, and I can’t even remember what else. It would sound so good but then it didn’t taste right. One day I called him and asked what he was doing. He told me he was sniffing a hamburger! So one morning my sister Jill brought him some bacon and a cinnamon roll. He was so excited to eat the bacon. He took a bite and then exclaimed “Everything I know is a lie! Nothing tastes like I think it does.” Well, the onset of mucositis took care of even trying to eat. Hopefully by the time he can eat again…it will taste like it is supposed to and he can restore his faith in his beliefs about food.
He hasn’t been able to eat for about 2 days so far. They are giving him IV nutrition and he has a pain pump to so he can push a button for more pain medicine when he needs it. He has a suction tube he can use because even swallowing his saliva is too painful. The doctor said that the sores should heal up as soon as his blood counts start moving up. The doctor is guessing that by the weekend he should be feeling better.
The doctors are really pleased with how Stephen is doing. The mucositis is a very painful and traumatic side effect, but it isn’t life threatening. He had a couple of bloody noses because his platelet counts are low. He has received platelets for the last 3 days so that shouldn’t happen again. Low platelet counts are to be expected and they plan on it. His blood work, organ function and all other indicators look excellent.
Stephen has really been a fighter while in the hospital. He has forced himself to walk and do physical therapy exercises. Without the serious fevers that he had last time he has been able to keep his goals. I’m really proud of his efforts. He has only lost about 8 pounds so far. He is trying to not lose more than 10 pounds and is trying to keep his muscle tone.
The best part of this transplant so far…having the Olympics to watch! Go USA!