Update
The last time we updated this blog was back in November, and to be honest, life just got overwhelming. Chester became really unwell, and with him and the two girls to look after, we were completely drained, both physically and emotionally. We just didn’t have the time or energy to keep the blog going.
Since then, we’ve still been following the EsPhALL protocol (COG1631) as part of the American trial. After the high-dose Methotrexate phase, we moved into Delayed Intensification, which was really hard — that’s when he lost pretty much all of his hair. After that, we started the Capizzi phase, and it’s been a long and exhausting journey.
Delayed Intensification & Capizzi Chemo Treatments
So back to when we were in the thick of intensive treatment — Chester had finished all of his inpatient stays for the high-dose Methotrexate, and we moved on to the outpatient treatment.
Delayed Intensification was the stage we were afraid of, as it was such a cocktail of different chemos and medications, and it took his immunity to zero. Because of this, we made the decision not to see anyone for the nine weeks he was on this block, as we wanted to avoid Chester catching a temperature and ending up in the local hospital to be pumped full of antibiotics — just in case it turned into an infection.
During this block, Chester also needed a couple of blood transfusions, as his counts dropped very low. These days were long and tiring in hospital, but he took it all in his stride.
Surprisingly, apart from the constant power cuts we had over the weeks — which often left us in darkness, preparing and giving Chester’s chemo by torchlight because it took hours for the power to be restored — the weeks weren’t too bad.
The first day on this block, we went into the treatment centre, and Chester had to have a lumbar puncture and have the chemo injected into his spine, which then travels up to his brain to help prevent the cancer from spreading into those areas — and, if it was already there, to get rid of it. It all went well, and Chester managed to come home and still get on the floor to play with his sisters.
He was also put back on steroids and tummy protection (which we had to ask for, as he had it last time but they didn’t prescribe it this time — and when we asked, they were like, “Yes, he should actually be taking this”). Unlike last time, when he had a few roid rages and a lot of munchies, he actually handled the steroids really well. The only thing we noticed was that the steroids started to affect his standing and walking again. He became really stiff, and before the steroids, he would sometimes try to climb the stairs — but once he was back on them, he started saying his legs hurt, and Christian had to carry him up and down every time.
Next up, we had to take Chester back into the treatment hospital as he was due to have a PEG. If you’re not sure what this is — it’s basically a big needle that gets injected into his leg and goes down to the muscle. According to the plan that Christian and I had worked out, he should have been having this on the Sunday. But since they don’t do chemo treatment on weekends for some reason, they moved it to the Monday. Then we got a phone call saying they couldn’t do it on the Monday either, as they had decided to stop all chemo prep for the day because they were going to do a deep clean in the pharmacy!
I’m still not sure why they can’t do a deep clean on a weekend, when they don’t do chemo anyway — but they also decided to push Chester’s treatment back a day, even though the protocol sheet we have gives specific days for each part. So we had to contact the matron to find out what was going on, since it was just a random nurse who called to move the day, not the consultant, and we needed to make sure it was actually okay.
We later found out that the consultant apparently has a different sheet to us, which gives them a little bit of leeway on the timing for giving the chemo. So now we just have to trust that this is actually true — but I still don’t understand why we have a different protocol sheet that clearly specifies the days, and theirs would be different.
Anyway, Chester went in and had the PEG, and he was brave as always. He even wanted to know what he had to do that day, and Christian told him they would be putting a needle into his leg. He said he was a bit scared, but he still just got on with it and was extremely brave. After the PEG, they could have gone straight home, but had to wait around longer because no one had told the pharmacy that Chester now takes liquid medication instead of tablets — and they had prepared the wrong medication to take away with us.
Over the next few weeks, I had been taking Chester in for Vincristine and Dox, which is one of the strongest chemos — and the one we were very afraid of Chester having, as we didn’t know how much it would affect him. It’s also the one that causes hair loss, but surprisingly, Chester still had his hair and was handling it very well. However, over the weeks, he had been saying that his legs were aching and that he felt like he was about to fall unless he sat down. Although he had already been struggling to get up the stairs properly, Chester eventually could no longer get up or down the stairs at all, and Christian had to start carrying him again. He also lost most of his hair before Christmas, which was very sad — but Christian let Chester shave his own hair as short as possible to be like him.
Chester finished the first part of this block and then moved on to the next stage — the Capizzi Interim Maintenance block. This involved more chemotherapy, including increasing doses of oral Methotrexate. This block also meant we had to take some of the chemo home and store it in our fridge so the community nurses could administer it at our home. However, we had just found out that when Chester was due to have this chemo, it fell on Christmas Eve, Christmas Day, Boxing Day, and the day after — and none of the community nurses worked on those days. Our local hospital couldn’t do the chemo either, as it’s normally the community nurses who go in to administer it there.
So over those four days, we had to do a 60-mile round trip each day to take Chester down to the treatment hospital so they could give him the chemo there. It was such a shame, as Chester had already missed out on so much — and now he had to spend Christmas in hospital for chemo. Once again, our family was apart for over four hours each day during those four days. We also had to do the same for New Year week, so it was very tiring.
When we did go in over the Christmas period, what no one told us was that the day ward at our treatment centre — where chemo is normally done — was also shut. We had to wait for inpatient ward nurses to be available, but they were already stretched, with only two nurses covering the entire ward due to staff sickness and holidays. We ended up waiting ages, and in the end, they did Chester’s chemo in the day ward area anyway. It’s hard to understand how chemo services could be closed — cancer and little immune systems don’t get time off.
We did, however, decide to celebrate our Christmas on a different day and made the most of it. We didn’t let this ruin the Christmas that our children deserved.
Chester was still very stiff and achy during this block, and he had a lot of mouth ulcers — which we know is common with Capizzi — but his got so bad his mouth started bleeding. Because his immunity was so low, we isolated again and didn’t see anyone. Friends and family dropped off presents outside, and we swapped them at the car to keep safe.
Not long before moving into Maintenance, we also received the amazing news that Chester was technically in remission — his bone marrow showed no leukaemia cells at all. After everything he’d been through, hearing those words was such a huge relief and gave us so much hope for the next stage.
Looking Back
We’ve probably not listed everything here — it all feels so long ago now, and some of it is a bit of a blur — but we just wanted to give you all a brief update on what was going on. This block continued over Christmas and into the New Year, finishing up around March, we think. We managed to celebrate Willow’s 2nd birthday, which was really special after missing her first while we were in hospital. We also slowly started seeing our parents again after being isolated for so long. Chester had his good days and bad days, but he remained brave, cheeky, and full of spirit all the way through.
We’ll be posting more updates very soon!
