Following an almost two week break, he had bloodwork done, and started the Delayed Intensification phase on Wednesday November 29th. Delayed Intensification is a bit similar to the first phase, Induction, where the treatment is a bit more intense with the aim of hitting the leukemia, and hitting it hard to knock down any of the little bastard cells that still might be lingering. Delayed intensification means another round of dexamethasone (a steroid) which makes E cranky, moody, hungry, and restless. Most of the steroid side effects are on his personality, so it can be quite difficult to keep your patience when they seem constantly unhappy, and won't let themselves or you sleep. Today we were at SickKids for more chemo, a drug referred to as PEG-asparaginase. Referred to as PEG, this is one of the more concerning drugs with scary side effects. Administering too much of this drug, or administering it too quickly can result in permanent hearing loss. There is also increased risk of stroke with this drug. It also has a nasty side effect of causing reactions in patients, ranging from hives all the way up to anaphylaxis. In fact, right before E was due to receive his dose, a child in a room beside us had some sort of reaction, and a number of nurses went running to help. The child ended up being fine, but it puts an extra knot in your stomach when your son is due to receive his chemo.
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| E double fisting cookies while receiving chemo. |
Today was quite a day. It started overnight with E waking up and keeping us up for half the night. I swear he's purposely trying to sabotage things on the days when I have to drive downtown. We were supposed to be at SickKids for 9 AM, but didn't arrive until 10:15 because we slept in due to E having us awake, and also wrestling with the 3 year old to get him off to daycare. We weren't expecting today's drug to be the PEG, and given that this was only the second (and last) time he received it, we had forgotten that it was a process. The drug has an extremely short lifespan, and isn't made until we arrive at the hospital. The pharmacy must have been busy today, and we had to wait about 2 hours after arrival for the drug to be made. Administering the drug is an hour-and-a-half process, and because of the potential for allergic reaction, you have to stay an additional 2 hours after the PEG has been infused. We left the house this morning at 9 AM, and we were finally finished and cleared to leave by 5:30 PM. Sitting in rush hour traffic to get home, we walked through the door a few minutes after 7 PM. We had to contact my mother-in-law to collect J from daycare because we quickly realized that it wasn't a short visit, and there was no way we were going to make it home on time. Through this whole ordeal with E's diagnosis, I've learned to be more patient and tolerant of hospital visits and waiting. Today was something else though, 10 hours of sitting in traffic, and waiting around for chemo, including a 3.5 hour stretch when we had to keep a 19 month old amused and confined in a room while he was hooked up to an IV. Quite an exhausting day that pushed us to our limits, and tested our patience for patience.
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