Tuesday July 6

As per my usual lately, I am behind on my blog entries, partly because I don't have much free time and by the time I sit down at night to write, I'm falling asleep. So let me try to catch up...

Sunday, July 4-Round 3, Day 2
Today was a quiet day. It involved an episode of vomiting, but that's not unusual. Collin had the last dose of the antibiotic he was on today, so that's one less medication to give; it'll be nice not to have to give the medication four times a day. Other than me running out to get my haircut, we didn't leave the house today; it was very warm, and I don't want to expose Collin to a lot of germs by taking him to crowded places. So this year we watched firworks on TV instead of going to see them in person. I look forward to taking Collin to see his first fireworks in person next year!

Monday, July 5-Round 3, Day 3
Collin had outpatient OT this morning. Bill and Neya came along. The therapist worked on getting Collin to reach with both hands to work on balance; use both hands to accomplish things using fine motor skills, etc. She had him putting pegs into a pegboard and pullin them out again, pulling apart big Lego blocks, reaching for and opening the different doors on the toy kitchen, and pulling magnets off a magnetic book. Neya was glad to be involved and help out by having Collin reach to hand her things, etc.

Collin has seemed to become very easily frustrated today. He is at an age where temper tantrums are sometimes a normal occurrence, and his physical limitations and inability to communicate his needs is adding to his frustration (and mine!) I have noticed my patience wearing thin because his and my frustration, along with his neediness, is constant. When I think about how he was even six months ago, a normally developing, sweet little boy, I get sad and angry that this disease has put us where we are right now. And then I tell myself I should be glad that he's doing as well as he is right now, and that someday he'll be back to normal.

Tuesday, July 6-Round 3, Day 4
We went to the outpatient clinic this morning. The nurse took Collin's vital signs, and she noticed that Collin was running a low-grade temp. Then we saw one of the doctors. He let me know that Collin would be receiving a half dose of the Vincristine today instead of the dose he has had in the past; if the recent eye deviation is due to Vincristine toxicity, they don't want to give him too much of the drug right now. He assured me that the half dose Collin would be getting was still enough to do what it needs to do.

While we waited for the Vincristine to come from the pharmacy, we went to a different office in the same building for an interactive audiogram to check Collin's hearing again; his oncologist is monitoring his hearing closely due to the possible effects the chemo can have. The test didn't take very long, and the results were the same as his other recent hearing tests; his left ear seems to be fine, but his right ear shows some hearing loss. It has been that way since the tumor was removed, before chemo started, so we don't feel the hearing loss is due to chemo. What I don't know is whether it is a temporary loss that will improve as he continues to heal from the surgery.

After the hearing test, we returned to the clinic and Collin was given the Vincristine. Then we stopped at the pharmacy, also in the same building, to pick up some refills, and then we came home. Collin eagerly ate lunch, but afterwards I checked his temp and it was slightly higher. I called the clinic to let them know, and spoke with Collin's oncologist. She wanted me take his temp again and call her back 30 minutes later, at which time she would determine whether he needed to be admitted to the hospital to be treated for infection. Luckily the temp was slightly lower. She called me about an hour later to check on him again, and the temp was still going down, so she told me to monitor him closely, and explained the procedure if it were to go back up tonight. She also let me know that his ANC, from the bloodwork done at this morning's clinic visit, was only 700; anything below 1500 means there is no immune system. I was relieved to get a reprieve for now, but the experience was a good test run for if we ever would need to be admitted unexpectedly. I have kept our clothes and other necessities packed and ready to go, which is one less thing to worry about in an emergency. And I will be watching his temp closely through the night tonight.