Brain tumour - life after chemo

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My 11 year old niece has had surgery, radiotherapy and 5 out of 6 cycles of high dose chemo with stem cell rescue for a stage 4 brain tumour. The scans are showing no remaining tumour now and she hopes to go back to school in September. I was wondering if anyone would share their experiences of life after chemo? DN can only really walk round the house now, she has gone skeletal (tube fed since the beginning of the chemo) `and gets tired after any kinds of seated activity like arts and crafts. We know she won't manage full days at first/for a long time but I think it would be helpful if anyboday was able/willing to share their experiences of life after chemo.

Hi there. I can't speak for a child. I can only speak about my experience.

It takes a long time. I was very very fatigued for a long time. Like minimum a year, for some people much longer. Pacing (not pushing too hard and listening to your body, spreading activities out) is vital, because if you get very fatigued the recovery from that event takes a long time.

Also, they will have wiped out their immune system, so will be vulnerable to every cough and cold. Like that first year at nursery, expect to get every cough and cold, constantly streaming nose etc. Which is in itself exhausting.

I found (it may be different for a child, they tend to have more support) that I didn't get much help in terms of rebuilding strength from muscle depletion. I progressed myself through yoga to light weights across 6 months or so which really helped. I could barely push up to plank at the beginning. I did get there. But exercise prescription (right activities for right level of strength) is a thing, and of course for children exercise looks very different. I would seek support in this area as obviously this is a virtuous circle - exercise and muscle building leads to greater energy over time.

Hope all goes well.

It's taken a long time but I'm nearly there

We are not there yet...one more round of chemo to go, so I am also keen to hear others' feedback on this. However, have your DN's parents spoken to their consultant about rehabilitation options after the end of chemo, and whether this might help? It's something I had to push hard for, but we've finally been referred to The Children's Trust in Surrey (just waiting to hear back whether we've been accepted). Apparently they offer residential rehab at their centre, which includes physio, occupational therapy, pyschology support, school, hydrotherapy etc., all onsite. It might not be right for your DN, but possibly worth asking about.

Does your DN have a wheelchair she can use to help manage energy levels? Have the school done a risk assessment? Is there a community physiotherapist and occupational therapist you can ask for further support from in terms of suggestions for gradually building up her strength?

My DS's school weren't particularly supportive, and I had to suggest everything I felt was a reasonable adjustment, including how frequent and how long DS's school days would be. (He's only been a few days in the last 8 months, but at least we now have an agreed process with the school which, in and of itself, is a small mircale that took months.)

I suggested 2 hours a day, for two days a week, which could increase as and when DS felt able to. I also asked if they would consider practical things like, as there's no elevator in his school, to arrange classes that were on the same floor to be back-to-back, where possible, to limit the amount of times he has to walk up and downstairs.

So glad for your DN that the scans are showing no remaining tumour. I hope all improves from now on.

In 2020 my DH was diagnosed with a brain tumour. It was growing around his optic nerves and he was going blind. After 3 attempts he finally got admitted and had the tumour removed through his nose. It took 6 1/2 hours and we had been told about 3 hours so I was beside myself with worry. He was in intensive care for 3 days, then he was in a private room for a week then instead of going on to the ward for 3 days they released him as Covid hit. He had to wait for radiotherapy. Eventually he had it and it has been successful but it left him totally drained. He has a MRI scan once a year to make sure it is not returning. We are so grateful to his brain surgeon who lost his mother to Covid in Italy but stayed and carried on working.

My DS2 had brain surgery last year at the start of November and was in hospital until Christmas Eve, and that completely exhausted him without any immediate follow on treatment, so my heart really goes out to you all.

The Children's Brain Injury Trust are absolutely fantastic - it did take a while to get the ball rolling, but once they've picked up your case things move fairly quickly. They told us they have 3 months or so from when they pick you up to get everything in place, so don't be like me and be slow to reply to emails (we were fire fighting with DS1 who we had effectively put on a "holding pattern" whilst dealing with DS2).

From a pure surgery point of view, DS2 (9) had a phased return to school which was Monday and Tuesday, Wednesday off, Thursday and Friday for 1 hour a day for 3 weeks. He then did the next 3 weeks until playtime (about 11ish). He didn't go to assembly or mix with anyone outside his class. After half term he added in Wednesday and did one week to break, then the next 3 weeks to lunch and the last 2 weeks of term he did full days. He was exhausted a few times and so we just gave him time off when he needed it (he would spike a fever). After Easter he went in full time and had probably about 80% attendance before may half-term (the bank holidays helped!) And then he is up close to 100 % now (bar all the hospital appointments!) which he hasn't managed since before he became ill in September 2021.

The important thing we keep being told is every child is different and slower is always better when it comes to getting back into school, so don't rush it. It's been hard for him (and for us juggling work), but it's worked out really well in the end.

Thanks for the replies.

The school have been pretty useless, as to be frank have her friends/their parents. It seems to be more convienient for them to pretend that DN doesn't exsist. That's a whole other post though.
@C152 I haven't heard of The Children's Trust in Surrey - we are in the North West but I'm going to see if we have an equivalent here. My sister has assigned me the finding stuff out role throughout the treatement, just so nobody thinks I'm overstepping the mark!
In terms of infections, after cycles 3 and 4 DN was in hospital almost constantly. Just one infection after another.

My child had HDC and stem cell rescue. She was discharged from hospital mid October, went back to school 5 November. We drove her even tho it is only 15 minutes walk, picked her up at end of the day and she did not do PE. For her the benefits of going to school were massive and she hates missing it. However she maintained most of her weight and was never tube fed and also went for a walk or sat in the hospital garden every day during treatment (except stem cell day itself and the day after when she felt grim). So she was starting from a better place than your DN. Tbh radiotherapy was more tiring it seemed and that took a few months to recover from. She attended school on RT days, but the weeks after wards struggled to get up and so went in late most days. And after school just rested on sofa. Depending on type of chemo she may need hearing tests as hearing loss is common. Eating well must be first step to build
up strength. Good luck. Happy to answer other questions.

My 2yo had surgery for a low grade brain tumour, no chemo etc, and that's wiped her out. I think everyone's journey and experience is different, but fatigue is a big thing to not underestimate.

We are 18m out from surgery and managing her energy levels is still a daily job. She still naps daily, whereas most of her peers don't. Sometimes she'll nap for 3+ hours.

We do busy mornings and quiet afternoons, to give her body regular time to rest. Bedtime is pretty strict (she might stay up an hour, but it's pretty exceptional we'd let her stay up longer).

She gets very tired so if walking 'far' (which can be a 1 minute walk or a 10 minute once) she uses a buggy. She does half days at nursery, but not every day.

If she overdoes it we get meltdowns, poor sleep and more tiredness.

Don't forget that overdoing isn't just physical, but doing too much school work, too much writing, even being around lots of children. The school will need to come up with a plan, and probably a flexible part time timetable that accommodates her energy levels. Things like half days, or having a rest day in the middle of the week might work. Having lessons recorded so she doesn't have to make notes (and for missed classes etc).

The brain tumour charity are really helpful, and can talk directly to the school to help set up a plan/help the teachers understand some of the challenges.

Good luck!

I'm sorry to hear about your niece and all that she's been through. I know what you mean about friends staying away, and I wonder if it's a thread worth starting in the hope that others may read and understand.

My dc is now back at school full time but what I wish I'd known was how hard it would be for my dc to feel that they fitted in when they were going in and out of school. My dc did an hour for a few months, then a morning and worked up to full days. All the coming in and out meant that my dc didn't fit into friendship groups or even make a friend for quite a long time. My child found that upsetting and painful but fatigue meant that there was no way full days were an option.

Some things to think about:

Has your sister thought about keeping your dn back a school year?

Is this school still the right school for your dn? Does the school have a good SENCO/good reputation for support?

Does your DN have an EHCP? Does she need an EHCP? Has she been assessed by a neuropsychologist? This will provide lots of important information for school/feed into the EHCP. My dc's neuropsychology assessments are arranged for my daughter by the oncologist. I imagine that's standard across hospitals and it would be worth asking the clinical nurse specialist if you haven't heard. The report will provide key information about any cognitive deficits following treatment and will help school to support your dn.

Prepare for the transition back to school to be bumpy, sad, painful for your dn (and you all) and at the same time utterly unbelievable and wonderful that she'll soon be back at school doing normal things.