Buckle up; its a long one!
Trying to remember all the way back to last weekend...that was when we had that beautiful peek of summer on Saturday. What a beautiful day and so warm! I got out and weeded the garden and planted some sweet peas, carrots & lettuce. The kids got out on their bikes, both of them on new bikes this season due to their rapid growth. Joel got a new bike for Christmas and it's so big that I don't think I could even get on it. Eric is on to Joel's old bike but could grow another inch to be really comfortable on it, and it needs a serious tune up.
Check up scheduled for Monday morning, what a way to start the week... As always, Eric needed platelets. Everyone reading this now knows that platelets are for clotting blood, so low platelets equals bleeding. I don't think I've shared as much, but it also means bruising (which is just bleeding under the skin). When we get into the hospital, they always ask about bruising and bleeding as an early indication of whether he may need platelets. Eric has basically been covered in bruises since December. He's always getting new ones and the old ones don't heal very quickly. However his Nurse Practitioner, who we saw Monday, lifted his pant legs to take a look and we were both surprised by how many more bruises he'd gained since last time I took a good look at his legs. This is a picture of his legs Monday afternoon before swimming. He doesn't even know how he gets these bruises.
There are usually snacks available in clinic and often the snacks are chips. Sometimes the chips are Old Dutch and Eric will never eat them if they are Old Dutch. On Monday, he wanted some chips but there were only Old Dutch so his lovely nurse went to ask Child Life if they had a stash of other chips and he got some Lays Ketchup chips. His Nurse Practitioner, who is of similar vintage to me and remembers when Old Dutch chips came in a box with the 2 bags inside, was flabbergasted that it really made that much of a difference and that Eric would actually refuse to eat the Old Dutch ones. This random paragraph will become relevant shortly.
Anyhow, Monday's appointment was relatively quick at 3.5 hours which seems to be about the fastest we can do with a platelet transfusion. Unfortunately, we didn't receive any of the results from the biopsy yet, not even preliminary results. Eric's next appointment was scheduled for Friday, but the team did say they would call me once they had the results.
Eric went to swimming lessons Monday evening and they were, thankfully, vomit free, though this time I did give him an anti-nauseant before we left the house.
Eric's oncologist called Wednesday afternoon. He only had a verbal heads up about the results and not the written report. However, it appeared as if the abnormal cells were fairly similar to the last biopsy, which were in the 80% range. It is these abnormal cells that are preventing his body from making platelets, hence all the transfusions. On the positive side, it looked like the blasts (the bad leukemia cells) had come down to less than 5%. This puts us back into a similar position to January.
Eric and I went into clinic on Friday for our regularly scheduled appointment. However, just as his nurse is about to access his port - all the supplies set up and ready to go, shirt off - she says "you put the cream on?" And Eric and I looked at each other in shock. We completely forgot to put Emla on his chest! And it didn't even occur to us until she was basically ready to stick the needle in. UGH! There was a presentation at Eric's school for the Grade 4/5 students about online safety that I had really wanted him to attend. So I dropped him off at school, came home to prep food for the hospital, picked him up and drove to the hospital. I guess with a different routine to our usual, we both completely forgot the Emla. His nurse put on Ametop instead of Emla because it works faster but we still had to wait 30 minutes before she could do the access. Unfortunately, Ametop doesn't work as well as Emla so it still hurt but Eric was amazing. He just sort of grimaced and said it pinched a lot more than usual. Since he was slow to get accessed, his Nurse Practitioner decided just to order platelets without waiting for results of blood test because his legs looked the same as Monday and after 4 months of this it was unlikely that he was going to have some miraculous rise in platelets since his last appointment.
Later, his Nurse Practitioner and Nurse Clinician show up with a tray of chips in small cups and tell him they're going to do a chip taste test! Eric thought this was the best news he'd heard all week! They made him put a mask over his eyes as a blind fold and then gave him 2 cups of ketchup chips and he had to say which were Lays and which were Old Dutch and they did the same with All Dressed and Sour Cream and Onion.
He got 2 out of 3 correct, only missing the All Dressed. However, he said he eats Ruffles All Dressed not Lays so he really didn't have a chance with that one. 🤣 Eric and his team had way too much fun with this activity, and also all enjoyed eating the chips after.
Finally, just as the platelets were finishing, Eric's Oncologist came by, with his Nurse Practitioner and Nurse Clinician so we got the whole team. He came to review the biopsy results with me now that he had all of them. The hemopath report was just as he told me on the phone, with the additional comment that the T cells were active. T cells are responsible for fighting off things that affect the immune system (infection, cancer). Based on the previous split chimerism test, it appears Eric's donor cells are mostly (completely?) in the T cell line. So as far as I understand it, what this means is that Eric's donor cells are still trying to fight. In addition to the hemopath report, he also had the chimerism results, which show that the donor DNA is about 16% with Eric's DNA making up the rest. The last result the donor DNA was 21%. I don't love the decrease, but as long as he has donor DNA, we have options to stimulate it to fight off the bad cells.
As before, Eric's doctor describes us as "stuck" or plateaued at this place. It's not a great place to be because it requires so much "maintenance," attending the hospital every 5ish days for platelets. Though, it is an okay place to be in that it is stable. Of course, this fine balance could tip (either way) at any time. For now, we've agreed to just do another round of the same treatment. This is because its been almost 3 weeks since he finished his last round of treatment and if we aren't doing anything, we risk the leukemia cells taking off. Additionally anything "new" that we wanted to try would require time and/or approvals to get set up. On Monday, Eric will start another 5 day cycle of IV Chemo (Azacitidine of 5-Aza) and another 28 day cycle of oral "therapy" (Venetoclax). This cycle he is able to do as outpatient, though we will have to drive to the hospital everyday for 5 days, including on Good Friday. He won't go to school next week, but after that will be able to if he is feeling up to it. The team and I have discussed something new to try for the next cycle, or perhaps later in this cycle if the stars align, but I will leave that for another time.
For now, we're going to get outside and enjoy the sunshine this weekend!
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