We had a great time at Starlight's Trick or Suite event on Sunday. It was a fun way to cap off our busy weekend.
Monday morning Eric and I had to leave early for the hospital because he had a biopsy scheduled and they like to get us in early for that. Eric was fasting and likes to ask everyone how many people are on the list and what number he is on the list and lament that he is now 10 years old so it takes longer to get to him (they go youngest to oldest.) He didn't get in until about 11:15am, but on the plus side, he got his full unit of platelets prior to the biopsy. When his nurse was getting ready for his bloodwork, I saw 2 of the vials were different. They have a red and green top which is special for the split chimerism. When I saw them I realized that I hadn't actually received the results from the previous split chimerism test. We saw Eric's NP that day and she pulled up the report for me. It shows that all of the donor DNA is in the lymphoid cells and virtually none in the myeloid cells. This is the same as it's been for quite awhile. With the late biopsy, Eric didn't get back to the room until about noon and then needed about an hour to recover from the sedation before he felt steady enough to head out.
Eric went to school Tuesday. Wednesday morning Eric was invited to visit a firehall in Burnaby. One of the Cops for Cancer riders is a fire fighter in Burnaby and his sister is actually one of Eric's nurses at the clinic. He arranged for a visit at Burnaby's brand new fire hall No 4. Eric got to ride in the passenger seat of the fire truck, turn on the lights and sirens and spray the fire hose. Eric's favourite was the pole that he went down 3x! A close second was when they thought they were just draining the water from the hose to roll it up, but it actually hadn't shut off properly; it went a little rogue and sprayed us!
Thursday morning Eric's class had an ice skating field trip. He really enjoys ice skating and was excited to go. He spent the entire hour on the ice and didn't come off at all complaining about sore feet or anything.
We went straight from the ice rink to clinic. Normally we would go Friday this week, but clinic is closed tomorrow for a training session, so they asked us to come Thursday instead. Eric said "I am NOT missing my field trip" and, of course, they are happy to accommodate him whenever they can. While Eric got his platelet transfusion, I spent some time talking to his Oncologist about the upcoming treatment. We chatted for awhile and he gave me some papers to browse and then I will have to sign my consent for the treatment on Monday. There is the potential for some pretty serious side effects which is why Eric will be inpatient for monitoring. He will be admitted on Monday and if everything goes well, he will be there for a week or two. However, if things go sideways, it could easily be a month. Even if released after a week or two, we will have to go into the clinic twice a week for about a month for continued monitoring. If things go as planned, Eric will take the oral med twice a day for 30 days and then have a bone marrow biopsy for a check in. At that point, there is no "break" between cycles like we are used to; he will continue taking for another 30 days and then have another check in.
Eric has another make up swimming lesson Thursday night - such a busy day for him - and then swimming again on Sunday before he has to take a (hopefully) short break.
Eric doesn't go to school on Fridays, and having got his clinic visit out of the way Thursday, he has a completely free day on Friday. He tells me he is planning to play Minecraft Dungeons all day long! On Friday afternoon, I am going away for the weekend on a Mom's Retreat organized by the Patient Parent Advocate at the hospital, and supported by Balding for Dollars and Power to Be. I am really looking forward to it!
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