Eric spent a lot of time on Pokémon over the weekend. On Saturday, he went to a local card show/trading event with a couple friends. That evening the people he rode with while on tour with Cops for Cancer sent him some money for Pokémon cards, so of course he had to go to the card store on Sunday. He went with another friend after they spent some time playing Yu-Gi-Oh and looking at his Pokémon cards. After all the busy social activity, he spent the rest of the weekend organizing his Pokémon cards.
Monday morning we had clinic. It took FOREVER for this platelets to arrive, but he was happily playing on the Xbox in the Teen Lounge. The appointment was fairly uneventful. We saw his NP and she said he looked really good, much better than last time she'd seen him, since she'd been away a few weeks. He was feeling pretty good too. Even though his platelets took forever, they were done by 12:30 and Eric had an appointment for an abdominal ultrasound and CT at 1:15pm so we went to the cafeteria with Grandma, who was visiting for a few days, for lunch. It was a great way to kill some time and get a quick lunch before the scans. Infectious Disease wanted the scans since it is about 6 weeks since Eric started treatment for the fungal infection and they wanted to see how things were progressing.
Tuesday morning Eric was ready to go back to school. I dropped him off and mom and I went to Costco, which I had been procrastinating for weeks. Eric stayed the whole day at school and when I picked him up it sounded like he'd had a great day.
Unfortunately, Wednesday morning he woke up not feeling great. He had a headache and was nauseous, but his nose was also really stuffy, so he decided to stay home from school. Also unfortunately, I had to drive all the way to the hospital because I had forgotten to pick up a prescription that was ready at the pharmacy when we were in on Monday, and Eric ran out Wednesday morning, so I couldn't wait until we were back on Friday. Lucky for mom it meant she got a ride to the airport.
Thursday morning, Eric was feeling a little better, but still really stuffy and also very tired, so he stayed home from school again.
Friday was a pro-d day, but Eric had to go to clinic. Our appointment wasn't until noon so we had a nice slow morning and a bit of a sleep in. However, when we arrived at clinic there was no room available. I hate later appointments for this reason. We waited almost an hour for a room and Eric was so upset, and then he ended up throwing up. What a disaster. When we finally got into a room, Eric's nurse was well aware of how long we'd been waiting and got him accessed right away. Amazingly, TML (transfusion medicine) was also cooperating and sent the platelets right away without waiting for a platelet count to come back. Unfortunately, when the blood counts did come back, Eric's hemoglobin was also low. Eric didn't want to stay and we debated, but in the end, he chose to get the blood transfusion as well, knowing that it would make him feel better. At least with the long appointment we had time not only to chat with Eric's Oncologist and NP, but also to chat with the Infectious Disease doctor. She came by to review Monday's scans with me. Overall, the fungal infection looks somewhat improved. Eric initially had 1 fungal lesion on his liver, 2 on his lungs and then what they call "ground glass opacities" in his lungs, which is basically just hazy areas on the scan that indicate infection. On the scans from Monday, the hazy areas are completely gone, the liver lesion is the same size, one of the lung lesions is the same size and the other is actually a little bit bigger. The doctor isn't worried about that one being a little bigger because overall things appear better, so it could just be part of the process of it breaking down. She is pleased with the progress so far and says we will keep treating with the oral anti-fungal and she doesn't think we need to repeat those scans for another 3 months. However, they can't see the trachea well from imaging and it was the area most affected initially, plus between the debridement in mid-August and the bronchoscopy in early September more deposits formed, so she would like for Eric to have another bronchoscopy in 4-6 weeks. Eric's blast count (cancer cells) were up a little at this appointment, but still in a place where we will tolerate in order to have some limited immune function to continue to fight the fungal infection. We ended up not finishing up at the hospital until 5pm and got home a little after 6pm.
Eric has big plans for me to take him to Spirit Halloween this weekend. He loves Halloween and is always insisting we add to our Halloween decor. We've got some random bones and grave stones, a big spider web, and a couple inflatables; he says this year we need a statue. He's also meeting a couple friends on Sunday to trade Pokémon cards.
Our clinic appointment next week is supposed to be on Wednesday, but since that is a holiday and clinic is closed, we have to go Tuesday and Friday instead.
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