We’re now fully into the maintenance phase of the EsPhALL 2017/COG-1631 trial, as mentioned in our last update, so this is more of a quick recap of where things are at now.
Over the past few weeks, Chester’s been doing pretty well. He’s on a mixture of daily and weekly meds — ondansetron (twice a day for nausea), mercaptopurine, and imatinib every day; methotrexate on Fridays; co-trimoxazole at weekends; and once a month he has a week of prednisolone (steroids) alongside his vincristine chemo at the local hospital.
Even though this is the maintenance stage, it still hits him hard. Chester often feels really sick, is in pain, and gets weird temperature swings — going freezing cold out of nowhere. We tried cutting down his anti-sickness meds once, but he just ended up being sick all the time, so we’ve had to stick to the full dose.
As part of the trial, Chester’s lumbar punctures (LPs) are now spaced out to every three months, which is such a relief compared to how often he used to have them. His next one is coming up in about two weeks (where they are also supposed to change his NG tube). LPs really wipe him out for a few days — he gets so tired, feels really sick, and sweats a lot. He usually can’t walk properly afterwards and has awful back pain, meaning he can’t even lie flat for a while. On top of that, the vincristine he always has the day before (as part of the protocol) leaves his body aching and he often wakes up in pain.
The vincristine and steroids really take their toll on him each month. They make his legs ache, his body feel heavy, and sometimes he wakes up in the night with pains that keep him from settling. He struggles to sleep, which means he often goes to bed really late. Between that and the steroids, we often see his moods and energy levels go up and down — some days he’s feeling ok, other days he just wants to curl up and rest.
The vincristine also always gives him really bad diarrhoea, usually about an hour later, and it can last for a couple of days. He’s reacted this way since the very beginning, but not a single nurse or doctor has ever agreed with us — we’re pretty sure they don’t even believe us! Every time we mention it, the response is always the same: “Oh no, vincristine only causes constipation, just like with all the other children.” Yet if you actually read the documentation, diarrhoea is right there on the list of side effects (Cancer Research UK). Honestly, we sometimes feel like we’re going mad — but no, it’s really happening!
But even with all that, Chester is unbelievably brave. Somehow, even the day after, when he’s sore and exhausted, he still manages to play with his sisters and keep his spirits up.
One of the hardest parts is how unpredictable it all is. We can have a run of good days where he’s eating well and playing, and then suddenly he’ll crash with sickness or pain out of nowhere. It’s a constant balancing act, trying to keep him comfortable and watching closely for anything that might mean a trip back to hospital.
For us as a family, it’s definitely getting a bit easier now that we’re home more and not apart so much. We’ve been able to slip into more of a routine, which makes such a difference — even if that routine can change in an instant. On Monday morning (25th August 2025), Chester suddenly woke up screaming from the landing at the top of the stairs. We rushed up and found him lying on the floor, saying he was really hot, sweating, in pain, and unable to move. Straight away we thought, oh no, this could mean a temperature and a hospital stay. Christian carried him downstairs and we checked him over — making sure the line site didn’t look infected (we’ve never really been told exactly what to look for, just that “you’ll know if it’s infected,” so we’ve started taking photos to compare the area each time). Thankfully, the site looked fine. We checked his temperature, and although it was slightly raised, it wasn’t high enough to mean a trip in as it was still below 38°C. After that, Chester managed some milk and even asked for ice cream, before spending the rest of the day curled up in bed watching Power Rangers — which actually did him the world of good.
Lately Chester has also been waking up most mornings with different random pains, which we think are linked to the prednisolone. One day it’s pain under both armpits, then the next it might be at the top of his right leg, only to switch to the bottom of the other leg. Sometimes it’s his back, sometimes the back of his neck, and on top of that his NG tube often feels horrible and sore in his nose — which could just be because it’s been in there so long. Basically, just like at the beginning, Chester still has to deal with pain in all parts of his body. We always mention it to the community nurses and consultants, but they never really say much about it and don’t give us much reassurance about whether it’s something to worry about.
Because Chester’s on an American trial, we were told right at the start that any side effects had to be reported back to the trial team. But from what we’ve seen, many of the pains or side effects Chester’s been having don’t seem to get written down, which can leave us feeling a bit in the dark. To be fair, we know the team are doing their best and that so many of these things really can be “normal” for kids on maintenance treatment, but as parents it’s tough when there aren’t clear answers.
We were also told maintenance would feel like getting back to normal life — but now that we’re here, that’s changed to “as close to normal as possible.” When we tell them he’s sick and tired all the time, the answer is just, oh, that’s normal. When we say he’s gone off his food and eating is a daily struggle, again it’s, that’s normal. On top of that, he won’t drink water — it makes him throw up — so he only drinks milk, and we have to top him up throughout the day through his NG tube to keep him hydrated. We understand this might all be true, but it doesn’t make the day-to-day any easier.
Another thing that’s been happening is Chester suddenly feeling freezing cold, even when it’s boiling hot outside. We’ll all be in shorts and t-shirts in the sunshine, and he’ll want to wrap up in layers. We mentioned it to the consultant, and the response was the usual, “hmm, strange — keep an eye on it.” Sometimes it feels like we’re left holding a lot of the worry ourselves.
Ondansetron does take the edge off, but when we were told maintenance would be “a lot easier,” it really hasn’t felt that way. Chester still feels sick and nauseous most of the time. Most days he’s also in pain, with the aches moving to different parts of his body just like before. He still can’t drink water, so we top him up with fluids through his NG tube throughout the day. He’s also not keen on many foods, so we give him Nutricia feeds through the tube as well. Quite often we’ll cook Chester a meal that he loved only a few days ago, but suddenly he won’t like it anymore. We end up cooking another… and another… sometimes four different meals in a row. If we’re still not successful, we’ll blend some of the meals and put them through his NG tube just so he gets some goodness into his body. The hardest part is that Chester will often say he’s hungry, but when it comes to eating, the smells make him feel sick. And it’s not just food smells — anything can trigger him to feel nauseous or actually be sick. It’s been like this since day one.
With it being the summer holidays and all the children off school, we’ve been careful and staying in alot for the past few weeks to keep Chester safe. We don’t want to risk him catching anything from other kids, because even a simple bug, flu, or chickenpox could make him seriously ill and land him back in hospital on lots of antibiotics, which we’ll do anything to avoid. The good news is we haven’t got long until the holidays are over, which should mean less risk and hopefully a chance for us to get out of the house again more often.
Another challenge over the summer has been Chester’s dressings. With the meds making him sweat so much, his dressings have been coming loose a lot more often — just like they did last year. Christian has been patching them up with medical tape or stickers until the community nurses come round to change them properly.
As you can see, Chester is still being so strong and brave, taking all his medication despite how rubbish it makes him feel. He does get sad and upset sometimes, asking how much longer he needs to keep taking the medication and when it will finally end. We tell him that after Christmas he won’t have to keep going into hospital, taking medication every day, or having his “sleepy tests” (the LPs). His NG tube and his wiggly line will also be removed. Officially, Chester is due to finish treatment in April 2026 — so there’s still a long way to go — but we are definitely counting down the days until all of this comes to an end.
Because Chester has Philadelphia-positive ALL, his treatment has been tougher than the standard protocol. Standard ALL treatment lasts 2 years, with most of that time being “maintenance,” which is generally less intense. Chester’s treatment is roughly the same length overall, but the intensive phases have been longer and harder, and even during maintenance he has the added challenge of taking imatinib every day. Most children on standard maintenance don’t need that drug, but Chester does — and it makes him feel sick and brings a whole range of side effects.
What’s frustrating is that the local hospital consultants sometimes say things like, “oh, he shouldn’t be sick” or “he should be doing this like the other children.” But then when we speak to Chester’s main consultant, we’re told the opposite — that it’s completely normal for him to feel rubbish, that lots of children are still not mobile at this stage, and that the steroids alone can cause a huge amount of pain. On top of that, Chester’s had a much tougher time with the more intensive chemo, and the imatinib brings side effects that other kids don’t have to deal with.
When we raise side effects with the nurses, we often get told, “oh, that’s common.” It’s so contradictory and confusing at times — and as parents, it’s hard not knowing which version to believe.
But even with all the sickness, pain, and endless meds, Chester is still smiling. He’s had a couple of amazing surprises recently that made him so happy (we’ll share more about those soon), and he’s still his cheeky, funny self. At home he’s been playing loads with his sisters, learning new things, building Lego sets, racing Hot Wheels cars, and of course rewatching the Sonic movies — 1, 2, and 3 — about a hundred times! It’s moments like these that remind us how strong and resilient he really is, and we’re so grateful he still manages to find joy in the middle of everything.
