Eric and I really enjoyed our weekend to ourselves. It feels like it was a long time ago, not just last weekend. Sunday we headed to Eric's swim lesson and he greeted the head instructor happily, but when we sat down to wait for his lesson, his tummy started hurting. We ended up leaving just as his lesson started. This tummy pain has happened a few times and it seems to be quite bad, but goes away if he can lay down for a bit.
Monday we went to the clinic and the access went well, thank heaven, but the platelets took forever to arrive. We had such a nice run of quick (2ish hours) appointments when the team started pre-ordering the platelets. They started taking longer and I've learned that even though the platelets are pre-ordered, Transfusion Medicine is waiting for a platelet count (from the bloodwork) before preparing the platelets. Our Nurse Clinician had called to see if she could fix this problem, but they told her just to put a STAT sticker on the bloodwork to get the results quicker. The platelet count was back in 30 minutes, which is very unusual because they are so low, they have to be manually counted. An hour later our nurse came and said she'd called Transfusion Medicine to check in and they hadn't realized the count was back, so hadn't prepped the platelets. AHHHH! This was frustrating for us, but worked out nicely for Grandma. She was flying in from PG and meeting us at the hospital for a ride back to our house. Her plane was delayed an hour, but since the platelets were also delayed, she made it before we left without her!
On Monday, Eric's platelet count was less than 5, but his white blood cell count was way up and his ANC (neutrophils) were 1.5. His Oncologist was so happy. That's the first time Eric has had a normal ANC in well over a year. His Oncologist was pointing to some things that we don't usually follow in Eric's bloodwork, because they aren't usually there, that indicate the new treatment is doing what it is supposed to. I told him to tell me when it is positively impacting his platelet count because that is what will actually change our quality of life.
Eric went to school Tuesday and stayed the whole day, but he was so exhausted by bedtime on Tuesday that he ended up having complete meltdown on Tuesday night. He was overwhelmed with all the hospital stuff and how long we've been doing this for, and trying to keep up with school, and a couple other small things. He was saying this is too much for a ten year old. Absolutely, kid. Absolutely. I can't believe it's taken 3+ years for him to get to this point. He is so courageous and deals with all of this so much better than we could ever expect or ask him to. He finally fell asleep Tuesday night and woke up Wednesday his regular, happy self. Though we decided he would take the day off school on Wednesday to rest. He had such a good day and decided to take Thursday off as well.
Friday we headed back to clinic. Another good access, another long wait for platelets. Eric's Oncologist is still happy with the bloodwork. He said we might even be able to take Eric off some of his prophylactic medications - an antibiotic and an antifungal. He has also put in another request to Health Canada to extend use of this new treatment. Next week he has ordered additional bloodwork to look at the chimerism (donor versus Eric DNA.) We've done this in the peripheral blood before and it has been misleading, but the Oncologist doesn't want to do another Bone Marrow Biopsy for awhile after the last one was so rough. Hopefully he will be able to interpret the chimerism results along with the changes in Eric's bloodwork in a way that makes sense.
I know this is good news, but it is difficult for me to be optimistic. We've been through this too many times, for way too long. The best I can do is to be relieved that we don't have bad news.
After the 3 hours in clinic on Friday, we had to go to Respirology for Eric to do a PFT (pulmonary function test.) This is to monitor his lungs from the GVHD (graft versus host disease) that he had following his transplant. His lungs have been fairly stable for awhile now, but the viruses do hit hard. It has been quite awhile since we've checked in at Resp so his pediatrician when we were inpatient ordered the test. After 3 hours in clinic Eric was tired and ready to go home, but a PFT is pretty fast so we thought we'd be in and out fairly quickly. Unfortunately, there were a bunch of other tests along with the PFT that we hadn't realized were happening. It was 5 tests in total, each fairly quick on their own but they add up. Eric started out well, even though he was disappointed that it wouldn't be quick like we thought. However, part way through the long day, the effort involved in the tests and the appointment not meeting expectations overwhelmed him. He was able to pull himself back together and finish the tests.
It was a long week and we were happy to have an uneventful weekend at home. Eric did make it to, and through, his swimming lesson today and even got his breaststroke checked off the list of skills, meaning it's basically perfect. He was happy about that and excited to come home for a bath, a grilled cheese and a relaxing afternoon.
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