Tough Weekend

I will start with the good news. Ben is starting to feel much better!

The bad news is that Ben had his most difficult weekend in terms of feeling terrible. At one point he turned to me and said, "I feel like I am dying." It absolutely broke my heart that he felt so awful and the medications just didn't seem to be working. He was in constant pain between his tummy and what he described as heartburn. It is unclear whether the pain in his chest was heartburn from the steroids or whether the sores in his mouth went down his throat. Either way, he was in constant pain. He was hungry from the steroids...but swallowing anything, including his own saliva, was so terribly painful that even the thought of eating or drinking made him cry. He doesn't like the medications he is currently taking (steroids, antibiotics because he is neutropenic, antibiotics to fight off a particular type of pneumonia that kids with leukemia are susceptible to, Zantac, Nystatin for the mouth sores and Lactulose for the constipation) but taking them is even more difficult for him when it hurts to swallow. He kept saying that he wished the doctors would admit him into the hospital so that they could just give him all his medications through his PICC line. UGH!! Poor guy.

As I said, thankfully things finally took a turn for the better this evening and he was able to eat and drink a little without too much discomfort so he is very happy. Ben is looking forward to his visit to the hospital tomorrow. He is really hoping that his numbers will be up above 500 so he will no longer be neutropenic (he really cannot stand that antibiotic!). He keeps saying that he knows that it probably won't be up there by tomorrow but he is still optimistic!

We are hoping for a quiet week with just blood draws to check his numbers. No chemo this week and the steroids end mid-week (woo hoo!). As usual, we will be keeping a close watch on his temperature, staying extra clean and as always hoping and praying for good numbers!