Its been a while, we've been busy but also just really tired. Eli is on the third of four doses of this round of chemo. They are supposed to be spaced two weeks apart but that depends on him recovering enough. As you'll see below, the first round was delayed a week. The third one however was on time. I have been very busy on the work front and looking forward to some quieter weeks ahead.
Longer term, we are looking at as much as two weeks at home in October before the next 28 day round of the immunotherapy, which is followed by another 4 weeks of chemo. That will bring us to Christmas which will be spent away from home. Eli's last round will be another 28 day immunotherapy which will take us through January.
Below are a couple updates I didn't get posted here earlier.
Aug 22
UPDATE: due to bloodwork showing he hadn’t quite recovered enough from the last round, he got pushed off. Try again on Thursday. This happens.
Tomorrow is another chemo day, the second of four in this 8-week round. The hope was each dose would be followed by about 4 days in hospital but the first dose he was hit pretty hard with side effects. We were told the possible side effects and nothing was outside the realm of expected side effects but it was hard.
This was one of the hardest weeks we’ve had thus far. The main struggle was this chemo can cause sores in the mouth which he got quite badly. This made it very difficult to get him to eat because he was just in pain. He was put on morphine but it caused itching so he was switched to other pain meds. In the below picture he has a wet cloth in his mouth because it was one of the only things that gave relief. Honesty he looked worse at times this past two weeks but is doing much better now. By Thursday (day 11) he’d recovered enough to be discharged and his appetite started coming back. Over this weekend he’s been eating and drinking well.
He goes in tomorrow (Monday) morning to start again. Because he reacted the way he did they’ve given him some meds to try and lesson the side effects. The doctor also gave Dana some tips that seem to provide some relief. It’s tough to know what side effects will hit which kids so the first dose has unknowns but does inform subsequent doses and which side effects to prepare for.
On the home front, one of my on-going commitments is with Elections Canada so I’ve been very busy this past week and will be until well after Election Day. Katie is enjoying a few weeks with family and by all accounts is having a great time. She will come home before school starts and we’ll have a couple weeks of juggling her and my schedules.
We continue to appreciate the love, prayers and support. It’s been a harder couple weeks, we knew there’d be harder stretches and this is definitely one of the harder parts of the journey.
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Sept 14
It has been a busy few weeks. Eli received the second dose of this phase of chemo. This two weeks went better than the first dose. He did get some mouth sores but not as bad. They had tweaked the dosage and put a nasal tube in so his nutritional intake could be kept up. He just went in this morning for dose 3 and PTL his bloodwork showed he had recovered enough from the last one to proceed. He’ll be in hospital for several days to allow the chemo to clear his body. After this he has one more dose scheduled in two weeks before moving to the next round of treatment.
Things continue to progress though there is still a ways to go with the timetable to come home pushing well into January at this point.
On the home front, last week was the beginning of school. K had been having an adventure down south with family for the last few weeks of summer and came home just in time to start school. It was a busy week between back to school and my working for Elections. We did manage to get away for a quick road trip to Valemount on the weekend as I had to drop off and pick up some materials. We had a lovely lunch as the Swiss Bakery there. Super yum! This week will be very busy for us but we have mama coming into town for the week to provide reinforcements 😁
Back to school was hard on both of us parents. Hard with just one going back right now and each of us missing one of our kids.
