Chester has now started his next cycle of treatment called Induction B, which we mentioned in our last post about his next phase of chemo induction. He is following the EsPhALL 2017 protocol, which is currently the standard treatment that everyone in Europe gets if they are Philadelphia Positive with their Leukemia diagnosis. He still has to take his Imatinib every day in tablet form, which is to help target the Philadelphia mutation.
This week he had to have his first cycle of Cytarabine which was given daily from Tuesday to Friday. Cytarabine is a type of chemotherapy drug that kills cancer cells. It stops them from making and repairing the DNA that they need to grow and multiply.
Luckily it can be given through his central line (wiggly as we call it) and only takes about 10 minutes. But because it has to be stored in the fridge and has a short expiry date, we had to drive all the way to Southampton Hospital to the Piam Brown ward for them to administer it! They then gave us the other 3 doses to bring home for the week. He also had to have his bloods taken to check his blood counts, as he cannot have it if they are too low.
Luckily his white blood cell count and neutrophils were high enough so we got it done, and then the community nurses came out to give it to him at home for the rest of the week. We have to get it out of the fridge half an hour before they arrive so it’s at room temperature for Chester. The community nurses are great, and when they come out they also check his central line and change his dressing. As it’s still healing and still a surgical wound at the moment it needs constantly checking for infections.
He has handled his meds quite well so far, but this week the steroids have worn off and he has lost his appetite a bit. On the steroids at some points he was unsatiable, so it has gone the opposite. He is doing OK, but because the latest chemo is given 4 days in a row it has made him very tired and fatigued. And also feeling quite nauseous, which is very common.
It was Chester’s 5th birthday also this week meaning the first thing he wanted to do when he woke up was go downstairs and open his presents. He was very surprised by our lounge being decorated with Minecraft balloons and a Happy Birthday Minecraft banner, so he was over the moon about this! He was very happy with all the presents he had got.
After opening the presents he had to take his daily meds before the community nurse arrived, as Chester also needed to unfortunately take the Cytarabine on his birthday as well. Just like the last 3 days before he took this like a champ, and was nice as it was his final one of the week.
He also helped us make his cake the day before which he loved, but annoyingly his appetite meant on the day he wasn’t up for eating any. He wanted a Minecraft cake and we are terrible at decorating cakes, but he loved it and he knew it was a Minecraft Creeper, even if no one else did!
He did find it a little difficult during his birthday to stay focused as the chemo this week has affected his eating, drinking, and energy. But he still managed to blow out the candles on his cake with his dad’s help and try a little bit. It was a very different birthday this year and we couldn’t do much, but we made it as enjoyable for him as possible.
Chester felt a bit brighter the next day on Saturday and helped his dad build his soon-to-be baby sister’s cot. He sat on the floor and put the washers on to the bolts, and then helped put the bolts into the slots on the cot so his dad could then tighten them. Chester then crawled around the cot (as he still struggles with moving and walking) and tightened them with an Allen key. He managed to tighten two of the bolts before getting too tired.
So overall this week Chester has felt very tired and a bit Meh! He hasn’t wanted to do too much and has felt a bit sick. But he has done great as always, kept up with his tablets, and enjoyed being together at home as a family on his birthday. He was so pleased we didn’t have to stay in the hospital or go in for treatment on the day! He has also unfortunately got a mouth ulcer which is a common side effect of chemo, so this may have also affected his appetite and eating.
