This has been the best week, but also not the best week.
We had to go into the hospital on SUNDAY this week, because the kids were headed to overnight camp Sunday afternoon and Eric needed a platelet transfusion before camp.
Reminder: Camp Goodtimes is a medically supported, free camp for kids with cancer and their families. Cops for Cancer fundraising provides for this camp as well as pediatric cancer research. Please check out Cops for Cancer for any activities in your community. Cops for Cancer
Eric spent the hospital visit and drive just super excited for camp. The hospital visit was longer than we would have liked when the intent was just to get platelets and GO! But the drive was amazing on Sunday morning.
Eric and I went home, picked up Chuck and Joel and headed to camp in Maple Ridge. We checked in, which is a bit of a process because you go through all the meds, and dropped the kids at their respective cabins. Both kids are in the same cabins they were in last year with the same age groups. Joel's Skip (counsellor) is actually Eric's favourite volunteer at the hospital. Eric, who is usually glued to my hip, was very eager for us to leave. Apparently I am embarrassing. That's new, and surprising, from Eric. However, I have a teenager, so my ego was not bruised. Both kids humoured me with a picture on arrival.
The kids had so much fun last year that I was not as worried to leave them this year; though, I was worried that Eric wouldn't have as much fun because he was in a much better place last summer than he is this summer. No kids at home Sunday night, all of Monday and all of Tuesday = amazing! We all needed a break from real life (cancer, hospital, meds, etc) and Camp Goodtimes provides that.
On Tuesday afternoon, I had an email from Eric's nurse clinician that the initial results were back from the biopsy, looking at the marrow under the microscope, and it appears much the same as last time, with no increase in blasts.
On Wednesday morning, I had to go pick Eric up from camp and take him to the hospital for a platelet transfusion. This very inconvenient intrusion on our camp break had been preplanned to keep Eric safe at camp with all the activities that they are doing there. I left at 9:30am for a noon appointment. Eric was excited to see me, but I also learned that there was no need to worry about him having fun at camp. He's having a blast and chattered on about camp all day. It was actually raining on Wednesday, so it was a good day to miss, but despite the rain, Eric still did "Rip n' Dip" that day. That's when you wake up and jump in the lake at 7:30am before breakfast. Here's a pic of Eric from the Camp Goodtimes instagram doing Rip n' Dip on Tuesday morning.
The clinic was super good about getting his platelets upstairs and started as quickly as they could. Eric, who had been without screens for a couple days, seemed to be enjoying his clinic visit. Here he is with his ipad, a pb & j (don't tell Joel) and a new Harry Potter Lego set that Kristina from Child Life gifted him.
Eric's platelets were just finishing and he was getting stoked to head back to camp when his doctor came in and that's when things started to go downhill. The doctor walks in the room and asks me if I had seen his hemoglobin, but I hadn't seen it yet. He advised me that it was 77. Eric typically becomes symptomatic around 80 with headaches, lethargy, and sometimes dizziness. My heart just fell. He was so excited, and ready, to get back to camp, not to wait for an hour for the results of a group and screen and waiting for blood to arrive and another 2 hours to transfuse the blood. I told his doctor that he was ready to go back to camp and his doctor asked how he was feeling and when camp was done. Then his doctor went to talk to a couple people. He came back and said that the clinic and the inpatient ward had both agreed to let Eric come in on Friday afternoon, after camp, for a blood transfusion. I can't say enough how wonderfully accommodating these people are in allowing us/Eric to do the important things outside the hospital. The doctor had to get both on side because the clinic closes for the evening and it is likely that we will have to transfer over to the inpatient ward to finish off the transfusion. I both love and hate this plan. Eric got to go back to camp which was the most amazing part. However, I (we) now have to go back to clinic for a third time this week! I was also worried that Eric would begin to have symptoms at camp and wouldn't make it through the rest of camp.
With that planned, and the platelets now finished, Eric was eager to leave. However, Eric's doctor also had the results from the biopsy. He asked if we could set up a time to discuss on Friday. I said yes, but asked for the numbers in the meantime. The chimerism report states that he's got 16% donor marrow and, unofficially (since the dr just had a verbal report,) the cytogenetics shows the dysplastic (broken) cells matching the chimerism. That means approx 84% dysplastic, with the 16% healthy donor marrow, adding up to 100%. You may remember that following the last biopsy, for the first time, this did not add up to 100%.
I took Eric back to camp and enjoyed a kid-free Thursday.
Friday at 1pm, Chuck and I went to pick up the kids from camp. We ended up having to take 2 vehicles so that Joel could come home, while Eric went to clinic. We expected a nice easy Friday afternoon drive, opposite rush hour. However, there was a car fire on Hwy 1. Seriously, I can't make this stuff up. Traffic was a nightmare and we arrived super late to clinic.
Eric did feel well through the remainder of camp, but just before arriving at the hospital, his head started hurting quite badly. He was squeezing his eyes shut and gritting his teeth. Our nurse was ready to go and he was accessed quickly. She also got permission from our doctor to give him Tylenol for his head. He is not typically allowed Tylenol because it could mask a fever which is an important indicator of a potential infection, so he takes hydromorphone for pain, but it doesn't work that well for a headache. For one off headaches with no other symptoms, and if we take his temperature first, we do sometimes get the okay to give Tylenol.
The blood was ordered and they planned to get started as soon as they could, but they had to do a group and screen first for blood typing. I went to chat with Eric's doctor and when I came back the blood had just started, but apparently I was gone FOREVER! We did have to move over to the inpatient unit because the transfusion went longer than clinic was open. The blood finished just before 6; with a flush and de-access and we were out of there by 6:30.
So the chat with the doctor... He reiterated that we are "stuck" and also that he has some concerns about how long this is sustainable for. We're attending the hospital every 5 days right now for platelet transfusions. Is that going to increase? Is Eric's body going to develop antibodies against the platelet transfusions? We've been lucky not to have a major bleeding incident that lands us in the ER, so far 🤞Additionally he is becoming more dependent on blood transfusions, increasing from about once a month to every two weeks. His doctor is applying for a med that stimulates platelet production. It is used for something else, but apparently has been somewhat successful in situations similar to Eric's. There is a risk that it might stimulate the wrong cells, but if it works, it may mean we'd have to go to the hospital less often. Additionally, it is well tolerated, from a side effect perspective.
The current combo of treatment is working to keep Eric stable, but not to improve the situation. His doctor would like to add another med to the combo. He applied for one last month and was declined. He is going to reapply for it, along with the Selinexor (little blue pills) that Eric had before. Unfortunately, the Selinexor made Eric quite ill. His doctor has to request approval because these medications and combinations of medications are not approved for use in children. He has to demonstrate studies in which they have been used safely in children with similar conditions to Eric. Eric continues to be very unique and there is no playbook for his situation.
For now, Eric will start another round of the same - 5 days of IV chemo and 28 days of oral treatment - on July 21. Eric tolerated the last round very well and while it may not move the needle, it will likely continue to provide stability while allowing us some fun summer activities. Eric's doctor has our schedule and based on approvals and our plans, he may add in an additional med toward the end of the cycle.
The kids are off to the WCK (West Coast Kids Cancer Foundation) day camp in Surrey next week. After camp on Monday, I am taking Eric to Surrey Memorial for a blood test to determine if we have to go back to clinic on Tuesday or Wednesday for a platelet transfusion. I am hoping for Wednesday, which is why we are doing the blood test, but not actually all that optimistic that his platelets will hold that long.
Finally, I'm allowed to donate blood again as of Wednesday next week, so planning to fit that into my schedule. Please remember to donate blood! There are lots of vacant appointments through the summer as people's routines are disrupted.
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