It's March. I can't even really say it's the middle of March anymore. It's quickly getting to be late March, and today is the first day of spring here in the northern hemisphere. I feel like I haven't written anything in such a long time. I did publish an entry about more dietary changes, but it was more or less polishing up a draft & scooping a few more ideas out of my head. I haven't written updates about E. I haven't written updates about how I'm feeling. There hasn't been a whole lot of motivation again. I don't want to endlessly repeat myself, and I don't want to churn out haphazard posts. I'm still a bit on edge about E's oncologist telling us they found blasts in his blood after his last lumbar puncture. Previously when I needed a distraction, I may have written, but lately I've found myself more drawn to flinging technicolour birds at green pigs, or matching different types of candy.
I guess I'll start off with an update about what's going on. I had to revisit my post from 3 weeks ago to figure out where I had left off.
Interim Maintenance II. E had chemotherapy on Friday March 2nd. We dosed him up with ondansetron every 8 hours for a few days, and the vomiting from the previous chemo push did not return.
On Sunday March 4th, we celebrated J's 4th birthday. We took J's grandparents, aunts, uncles, and first cousins to an indoor playground for a couple of hours. I was hesitant about taking E out to such a place when he's immunocompromised. I had spoken to E's nurse-practitioner about it when we were at the chemo appointment on the Friday, and she said it should be okay to bring him. His counts happened to be excellent, and she emphasized extra hand washing, hand sanitizer, and sanitizing wipes, so I felt better about it. Initially, he stayed in the little kid area, but I made the mistake of carrying him up the playstructure and taking him down the slide on my lap. Oh, I created a monster. After that, he didn't want to have anything to do with the little kid area, and all he wanted to do was go on the slide. Myself included, there must have been 5 different adults taking turns going down the slide with him. He was unstoppable. It was great to see his smiles, hear his giggles, and see a glimpse of what might have been, had he not been diagnosed with leukemia 7 months previous.
On Wednesday March 7th, we took E to the chewing and swallowing clinic for an appointment on how to help him with eating solids. We brought a number of different snacks with us, and the two ladies observed E interacting with the food. He now accepts crunchy foods such as crackers or cookies whereas last year, they would have made him gag or vomit. So, we have made some progress since our last visit, but it's going to be a slow process. We're on the right track, so just do more of what we're already doing, and sensory bins.
When Saturday March 10th rolled around, E had a bit of a cold coming on. I don't think he picked up anything from the indoor playground since too many days had passed. It was more likely that J had shared a virus from daycare. We put a cool mist humidifier in his room at night, and wiped his drippy nose by day.
On Monday March 12th, we went to our satellite hospital for chemo. In Interim Maintenance II, you need to do bloodwork, wait for the results, and then you get the go-ahead for chemo if the counts are okay. E's counts were fine, with the exception of his neutrophils. They were 0.2, which lower than the threshold of 0.5, meaning he was neutropenic. Go home, and come back on Friday we were told. Being bumped back 4 days would also mean his lumbar puncture would be bumped back by 4 days, and my wife and I are both anxious to see whether the blasts are gone from his spinal blood.
The rest of the week went by with E fighting his cold, and us fighting the lingering effects of switching to Daylight Saving Time. Ugh. I've never been so tired as I have this year with the time change. It's 2018! Why are we still springing forward, and falling back? Saving energy? I don't believe that for one bit. Especially now, when most people have LED lighting, or compact fluorescent bulbs in their homes. I suspect that food preparation is a much larger power draw than low wattage lighting, and you're not going to get people to stop using their ovens to cook dinner. Just end the time change silliness already! Please.
On Friday March 16th, we were back to the satellite hospital. Again, E's counts were fine, with the exception of his neutrophils. They'd dropped to 0.1. Our nurse called SickKids to see how we should proceed. SickKids said that E should get a dose of vincristine (which does not affect neutrophils), but the dose of methotrexate would be abandoned for this week. The rest of our schedule was rearranged, with E's next lumbar puncture being bumped back to the first week of April.
And that basically brings us up to speed at this point in time in the month of March 2018.
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