Monday, April 6th

Well, despite two nose bleeds, the weekend was pretty good. We spent Saturday in Erie with friends that have kids. Alex did pretty well. Sunday was nice and relaxing as well. Alex ate well, was in good spirits, took his oxygen and had a good time at Mac Grill with the Erie family. Steve got to get out and enjoy some down time with a neighbor. I felt pretty rested and just enjoyed doing nothing, nada, zip!

Then came today. Alex had expressed some worry about the treatments yesterday. I told him not to waste a beautiful day worrying and to make it a good day. He said "okay, mommie". Even this morning he seemed okay. He asked if he could just go to the new hospital but not get treatments. We told him "no, treatments are the only reason we are going to the new hospital now". So off he and Steve went. I know he had a hard time waking up and was not completely awake when he arrived at TCH for his clinic appointment. They gave him some oxygen, took his counts (very good) and blood gases (took over 20 minutes to get these and three tries). Well, I guess the combination of chemo, radiation, starvation and frustrating labs took its toll on Alex. In the waiting room at TCH he lost it. Steve said he screamed, cried and was just miserable for a good thirty minutes. He was yelling "I can't do this anymore; I want to get out of here!" After thirty minutes Steve got him calmed down but a nurse asking if Alex needed anything started the whole thing over again. Steve left without the lab results and when he came home Alex was very distraught and just laid in his bed. Steve said he knew something was wrong when he did not want to eat after radiation.

Well, Steve had lunch then left. Zoe and I were up when Alex woke screaming and crying. I got him in the dining room because he said he was hungry and wanted waffles. Well, when the waffles arrived he could not eat them. He was crying and screaming, saying "I'm so dizzy, my head hurts!" I could tell he was having trouble swallowing so I asked him if it hurt to swallow. He said "yes". Then I spent the next 15 minutes trying to get some Tylenol in him. He kept asking "are you sure this will help?" Eventually I had to squirt the medicine in his mouth. That did not help at all, so I called the doc and was told to give IB. They also said that this week would be a very hard one since we are walking a fine line between the steroids and his symptoms. They have decreased his steroids again and I am quite anxious about the effects. Remember Alex would not eat or drink because he could not swallow well?

Well, for the good side. Alex's weight is up to over 19 kg. That is good and bad. He can't gain any more weight or radiation will have to be postponed for another week or so to "refit" him to the machine. This could greatly effect everything. So we are back to 2% milk and wholesome snacks. So far Alex is doing well.

Anyway, his pain went away and by 4p he was ready to color and have friends over. The neighbors came over and it was great to see Alex doing sooo much better. He did a complete 180 from this morning. He finally ate too.

Okay well that is it. Pray that the week is not as hard as they predict and that today is much easier for Alex.

God bless.
G