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Parenting

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Tips for supporting a 10-month-old through chemo and hospital stays

6 replies

Pulledbluecurtain · Today 17:43

Hello, my 10month old has recently been diagnosed with a brain tumour. They have had the debulking surgery and came through it well. They don't have a formal diagnosis yet as waiting for additional results but they are saying its malignant and aggressive and they are seeing nodules on the spine so has spread. Chemo will be the next step.

We are so lucky that we have an incredible family support system and out hospital has put us in lots of charities that are offering amazing support.

I'm wondering if anyone has any tips on looking after such a young child going through this. I want to set up a really calming sensory space in their bedroom - any tips for things to buy? What can make a hospital room more comfortable? If you know of an infant who has been through chemo, what helped them? Were they an inpatient alot?

I do have a therapist who is helping and extended family but it seems we are in the minority of a child so young, most resources talk about it mainly impacting slightly older children. I'm lucky that I'm a sahm so dont have to worry about managing work.

Any tips, insights, product recommendations, links etc very, very welcome.

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Sunisgettinganewhaton · Today 17:47

So sorry about your dc. My dc was in/out of hospital from birth - a year old.
Make sure you have things to keep you comfortable if you re staying in. Cosy blanket /own pillow to nap when you can. Books /snacks. Thick socks.. Comfy lounge wear. Organise food being brought in for you. I was bf ds so got my meals provided. Not sure if they still do that.
Rotate new toys to keep dc amused...

Stars26 · Today 17:57

Sorry to hear about your tough time and your little one.

Projectors/light boxes : there’s loads around now with lights etc can pick them up cheaper and can take them to hospital or home. Fave teddies/comforters/blankets. White noise machines/music.Look at Tonies machine. Cot toys incl side ones that light up and play music. Books and fave toys. Can swap toys after a couple of days if a longer stay. All that you can have at home for relaxing but take on longer stays that will make it seem more homely around the city/befside. Depending on the room/ward situation.

For parents and hospital stays maybe a grab bag with Ipad/tablet, chargers, comfy clothes,pjs, slippers etc. Plus some things for baby. Snacks/drinks bottle or cup.

mackerella · Today 18:06

Sorry to hear that you're going through this Flowers

DS started chemo at 6 months old (6 cycles over about 4 months). He had most of his chemo as a day patient, with only one overnight stay, so is it certain that you'll actually be staying overnight in hospital?

It was quite a long time ago for us - and we had a great outcome in the end! - but a few random things that come to mind are:

I was surprised by how long each infusion took (about 4 hours, from memory!) so be prepared for a lot of boring waiting around while tethered to a drip stand. Make sure you come armed with plenty of things to amuse your DC during that time, especially as it can be difficult to actually go anywhere once the chemo has started.

One of the chemo agents used for DS caused both explosive diarrhoea and a spike in temperature, so be prepared for reactions like that!

Eating was a massive thing for us, especially as DS started chemo at the same time as we were starting to wean him. He carried on breastfeeding throughout, but lost his appetite for pretty much everything else apart from the odd bit of fruit. We had support from a dietician throughout, so see if that's an option for you. In the end, he was NG-fed for most of the chemo period (they trained us to do this at home), which took the pressure off us to get enough calories in him, and meant that we could concentrate on keeping mealtimes about fund and exploration. His appetite didn't recover fully for a few months after chemo finished, so it had a massive effect on his weaning overall.

We spent the whole 4 months being hyper-vigilant about infections, especially an infection in his Hickman line which could have been really dangerous. We monitored his temperature several times a day and we're under strict instructions to go straight to the hospital if it ever reached 38°C, even if it was the middle of the night. He did end up being admitted because of this a couple of times, and they gave him broad-spectrum antibiotics until they'd figured out what was causing the fever.

It took quite a while for his hair to fall out, so he spent the first two months of chemo with cute, fluffy, tufty hair, like a chick! When it did eventually fall out, I did have a moment of thinking "oh god, now he really does look like a child with cancer", but we got used to it pretty quickly. And it's much easier at that age because you kind of expect babies to be bald, unlike, say, 6 year olds Sad.

One last thing: babies re incredibly fidgety and wriggly, so it can be very difficult to keep them still during infusions, or stop them fiddling with tubes and dressings. We had a cotton "wiggly bag" to keep the end of his Hickman line in, but it was still a daily challenge to keep it clean and stop him from playing with it. Vests were really useful for containing everything out of his reach! He also became expert at hooking a finger under his NG tube and pulling it out 🙄

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Shewalksinbeautylikethenight · Today 18:18

I had an infant who had well over a year of chemo. 6-7 hour infusions, yes, lots of infections and inpatient stays. I'd try and get signed off work (it is not skiving in any way), make arrangements for any other kids so you don't need to pick up/drop off in busy areas, take advantage of family therapy and peer support and the kindness of strangers. I kept a hospital pack in my handbag for about 10 years - spare knickers, travel toiletries etc because you never know when you might be admitted.

At the time there was a great thread on here too

You can see from pps that chemo can vary greatly in intensity/duration

Sending my thoughts, this is a very tough thing to go through

eurochick · Today 18:42

Not quite the same but I had a nicu baby so I didn’t need to think about keeping her amused. Take handcream, snacks and drinks for you as it can be difficult to leave the bedside once you are there. And the constant handwashing and alcohol gel leave your hands like sandpaper. And maybe a spare top in case of sickness.

I hope it all goes as well as it possible can.

Pulledbluecurtain · Today 18:46

@mackerella and @Shewalksinbeautylikethenight thank you so much for your personal experiences.

We don't know it'll be inpatient yet. We have an amazing neuro-oncology nurse who is our angel. She's very clear she's not keeping things from us they just genuinely don't know yet. The only reason I'm thinking inpatient is because she spoke to us about how far away we were from the hospital and explained that every child has their own room and is putting us in touch with a local charity that provides accommodation for sick kids in the hospital.

The LO is already NG tube fed as they have had other issues which we now know to be all connected to the tumour. At least we know they will be able to get some nutrition.

Wiggle bag and vests are a good idea. They are very grabby at everything lol.

I know its silly but he had had a few surgeries on his head with big scars and when the little curls fall out they will look so big. A very silly thing to be worried about because we are so eternally grateful for those scars. They wouldn't be here without them.

Did you find anything particularly soothing? Certain scents or weighted toys?

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