I have been so slow in updating my blog. My last post perhaps made it sound like I have everything under control. Let me assure you I do not. I guess I just don’t feel as overwhelmed about being out of control as I did those first few months. Anyway, here is an update.
The hospital stay for Derek’s fever ended abruptly two days later when the results of his lab work showed he had RSV, a respiratory virus. His fever was down by then and they sent us home to recover since there is no medication to cure it. In all, it delayed his chemo treatments two weeks. He recovered from the RSV with no further complications.
On Friday, February 17, we went to the clinic for labs to see if his counts were good enough for chemo over the weekend. His ANC had to be at least 750, and it was 1300, well enough for admission. We had to wait several hours for a bed to become available. Again, he had a large bag of Methotrexate flow into him over 24 hours. It made him a little bit unresponsive and he lost his appetite. Other than that, he had no major side effects at the time. His levels came down much more quickly because I was trying to get him to drink lots of extra fluids to clear it from his system quickly. It worked, a little too well, as I discovered a little too late.
After getting high dose Methotrexate (MTX) they give him a medication called leucovorin to put folic acid (that had been forced out by the MTX) back in the healthy cells. This medication has to be given at precise intervals following treatment. The number of times leucovorin is given is determined by blood tests that show how much MTX is still in his system. If the MTX stays in at higher levels, it requires additional doses of leucorvorin. They had told us that his level of MTX had to be .1 or less before they could release him the first time, and I assumed that would be the case the second time as well.
By Monday morning his level was down significantly, and when they did rounds and looked at his protocol, they discovered that because his levels had been well below the minimum for the first several checks that he would not need additional leucovorin and that he did not need to reach the .1 level before going home. So they sent him home with only three leucovorin treatments. We rejoiced that we could go home early.
However, on Wednesday morning, Derek started complaining his throat hurt. I looked in and didn’t really see anything. By lunch, he said his mouth hurt at the back on one side. I look again and saw a huge sore right next to one of his new molars that have just emerged. By supper he didn’t want to eat anything, even though he was hungry.
Mouth sores can be a side effect of high-dose MTX. The first time around he had no problems, but I suspect now that because he did not get additional leucovorin, he got a really bad case of them this time. It is just hard to watch my little one in so much pain and not be able to do anything about it.
First thing Thursday morning I called the clinic. Derek would hardly eat or drink anything. He had sores on both sides and at the back as well. They prescribed a mouthwash using baking soda and salt dissolved in water. That helped a little, but not much. They also prescribed a mouthwash called Pink Lady that includes a topical anesthetic. With that I was at least able to keep him better hydrated. Friday we went to the clinic and they found more sores under his tongue also. The poor boy had them everywhere. He was only able to eat soft foods and liquids and only for a short time following rinsing his mouth with Pink Lady. They said the sores should start going away by today (Monday.)
Yesterday, his mouth was much improved, and he ate and ate, still mostly soft foods. Today, he didn’t need any Pink Lady and was eating normally again. They seem to have disappeared, thankfully.
He is scheduled to go back into the hospital for his next MTX treatment this Friday. I don’t think I’m going to push the liquids as much as I did last time. Maybe additional leucovorin will help prevent him getting mouth sores this time. Even if it means extra time in the hospital, it may be worth it to avoid the pain, hunger, and thirst he experienced this last time.
2 comments:
That is so hard. It's one thing for an adult to deal with that, but it's a whole different thing to watch your child. So sorry for this trial. We pray for Derek and the rest of your family often. Love and prayers....Melinda
Just caught up reading your updates, and am soo sorry Derek has had to deal with the mouth sores. I hope your plan of attack works. It seems that younger kids get the mouth sores more then the teen kids.
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