Friends daughter has cancer- what can I do And

[user14943608381]

Hi I’m looking for a few tips on how to support a friend. My parents have had cancer but I’ve not experience of anyone who’s had a child who has cancer. She’s got leukaemia and is having chemo. If anyone has walked this path before, what would help? I don’t want to bother her, especially if she doesn’t want to talk, I don’t want to say the wrong thing and cause upset. I’m not sure of the treatment, I’m already a donor so I’d happily get tested to see if I’m a BM match but I don’t know if that’s helpful or a weird thing to say. I just want to be a good friend in what must be a fucking horrible time

Ps our local cancer hospital doesn’t have a car park.....but cancer patients can park free in the NCP carpark

@Kitkat151

Ps our local cancer hospital doesn’t have a car park.....but cancer patients can park free in the NCP carpark

I’ll find out about that first rather than waste any money.

Thank you!

So sorry to hear about your friend's daughter, it's really lovely you are wanting to know how to best support her through this horrendous time.
I'm a parent of a child who has recently been treated for medullablastoma and has had radiotherapy and chemo and spent a lot of time inpatient at hospital.
The biggest thing I can say from my experience is just to be there and check in every so often. Even if just a 'Thinking of you' message. You may not get a reply, but I read every word sent to me which was a comfort in the dark hours.

Just knowing people were thinking of my child made a difference.
I'm sad to say I lost a few friends along the way who found it too difficult to know what to say and didn't keep in touch. It still stings now, even though I try to empathise.
It can be hard to know what to say but do say something. It can be a very lonely and isolating time so I think your friend is very lucky to have someone like you.
Also a little card or gift for the child is a kind gesture and the offer of helping out practically with pets/cooking etc.
I wish your friend and her daughter well. I am sure they will be well looked after by a lot of very amazing people.

My 3yo has leukaemia, diagnosed a few months ago. Honestly people absolutely fall over themselves to give ‘stuff’, I’ve had sooooo much (toys clothes etc) and I appreciate the thought but tbh it’s just more stuff to try and find a home for! If you really want to give her something, useful consumables - travel packs of shampoo, conditioner, toothbrush & toothpaste, snacks etc etc for the many times you end up stuck in hospital unexpectedly.
Mostly just being there with no expectations and letting her know you’re thinking of her will mean more than anything else. As someone said, after the initial huge outpouring of sympathy everyone disappears pretty quickly so just be around for the long term.

Sounds like it might be ALL if she has said the treatment will be years. We are 6 months into 3 years of treatment for ALL for my toddler and I would say the most useful things people have provided us with are: frozen food when we are inpatient and toys that can be played with easily in a hospital bed and when the child doesn’t have much energy.

It’s also nice when people reach out and ask how we are doing. At the beginning I got lots of texts and messages but these really dried up after a month or so. It’s great when someone calls/texts me to see how we are doing and what’s happening with treatment or just for a gossip about something unrelated as it does sometimes feel like people are avoiding us/the situation.

What helped for us was visits to the ward (when ds wasn’t in isolation bay or too immunocompromised) and friends doing a rota of home cooked food. Food that DH and dd could have at home with a portion for me in hospital. Not only is it expensive living off hospital canteen food and hospital m&s shop but really boring. Some nice toiletries for parents whilst in hospital, an insulated coffee cup, eye mask and earplugs. For the child new pyjamas, colouring, little toys to keep them occupied. Letters and cards to the ward brightened our day. Sending my
Best wishes x

What about a canvas shopper type bag with treats/distractions in it- maybe something like:
Toddler jigsaw or game of some kind
Toy car/tractor
Cereal bars
Travel mug / water bottle
Costa/Starbucks gift card
Cheap little purse with change in for parking/vending machines
Hand cream (she’ll be washing her hands a LOT)
Travel toothbrush and toothpaste
Packet of nice face masks??

And my ds had AML, the trickier one (at 16 months old). He’s 5 years in remission. Have hope x

And I can tell you, your kindness will be remembered forever. I still well up at what some friends and people in our local community for our family. We lost some friends over the way, mostly the ones who just ignored it Was happening and didn’t keep in touch, or ask, or message.

To all the parents who are currently going through this

@Jemimapuddleduk

And my ds had AML, the trickier one (at 16 months old). He’s 5 years in remission. Have hope x

Amazing! I’m so glad to hear it

@Namechangetimes100 with ALL the treatment is 2 or 3 years (2 for girls, 3 boys). It’s stints of hospital stays with chemo broken up by stays at home in between for roughly the first year. If the child responds well to chemo the final year or so will be oral chemo at home and visits to outpatient oncology ward for chemo on a weekly/monthly basis. There are some types of ALL (like Philadelphia) which do not respond to chemo and a bone marrow transplant or cord cell transplant will be suggested to get the leukaemia in remission. This is tough and requires a longer stay in an isolation ward and comes with some risky side effects like graft/host disorder.
AML if responsive to chemo is roughly a 5 week stay, week at home then repeated 3 or 4 times. So approx 6 months in hospital punctuated by short breaks at home if we’ll enough. Again bone marrow transplant is an option if the child does not respond to chemo.
The child will have a Hickman line or port to administer the chemo, blood, platelet transfusions, antibiotics and pain relief. If the child spikes a temp whilst at home they have to be admitted as risk of infection in line.
Most children will end up with feeding tube.
We didn’t get to find out the specific subtype of AML until thE first hospital stay where they do some genetic profiling.
Hoping
I’ve used the correct terminology here, it was 5 years ago.

With ALL the treatment is pretty steroid heavy and this can really affect mood. So tough.
Sticker books sound an amazing idea. The days are very long in the hospital! We also used a little portable DVD player so if he has one of those maybe any dvds you have to lend him.

My son has just come through 6 months of chemo for stage 4 lymphoma - I don’t really know about treatment for leukaemia apart from that it’s much more drawn out, but I know that what really helped me keep going were the messages to say that people were thinking of us, and also just being able to chit-chat about normal stuff rather than cancer all the time. Practical help, absolutely, we had grandparents who could help with our other children (although it was during Covid lockdown so they were limited in what they could do), and a few people sent the family things like ‘movie night boxes’ which were brilliant as they included the other kids as well. My son was given loads of things but it was hard for the others as they weren’t. And meals were brilliant too - a friend batch cooked a load of family meals that we could just stick in the oven which was a huge help. Big hugs to your friend and her family. There are also lots of Facebook groups for parents of children with cancer which have been an absolute godsend for me. Just linking in with others who understand what you are going through and can talk you down from the panic is brilliant.

@Namechangetimes100

My little girl has ALL, we spent 2/3 weeks inpatient when she was diagnosed but most treatment is outpatient with admissions for temp spikes etc. It’s really individual I think as a lot seems to depend on the child and how they respond. AML sounds absolutely brutal @Jemimapuddleduk, I’m feeling like I’ve got off quite lightly!

She’s said it’s really impacting his mood and personality atm, think he’s having some really challenging moments and being quite fractious and difficult, total 180 to the little boy before all of this.

This sounds very familiar. My DD was unrecognisable from her former self - I felt like I’d lost her even though she was there. It was horrendous. But it was temporary and short term and she is much more like herself now (just bald and covered in tubes ). I don’t know if your friend is on MN but if so, tell her to feel free to PM me - I’m only a few months out from diagnosis and those first few weeks are grim and it does get a lot better pretty quickly - I’m happy to listen/commiserate if she wants an ear from someone who’s been there.

My DC doesn’t have cancer, but does have a complex and rare health condition. He’s had 8 surgeries since he was born (he is 4 now) and we spent the first few winters in and out of hospital.

As PP have said, you really find out who your friends are. I have been most grateful for the people who are there for a chat, but don’t take offence when I haven’t been up to talking due to things being particularly difficult. And this is dependent on the person, but I’ve never minded people asking about it rather than skirting around the topic and pretending it doesn’t exist.

You’ve all been through so much! Thank you for sharing your experiences and advice on how to support my friend. For what it’s worth your children will be in my thoughts and prayers

My daughter had cancer at 2 and I’d echo others here on the following:

Nice frozen food, we were sent some Cook meals which were lovely and thoughtful.

Keeping in touch, without expecting updates or even a response always. Just gentle company via text message to show they cared and were there for us when we were ready.

No to loads of bits and bobs. I didn’t want bags full of shampoo and hand cream. It just felt like a burden really.

I liked people who actually asked me some things rather than just saying how sorry they were. But that’s probably personal.

Don’t speak to them like they’re going to lose their child. We had people do this to us and it was horrible. And not true.

I’m a muppet I’ve titled the thread daughter because I was thinking about mine (they’re the same age), it’s her son that’s poorly. Sorry if that’s confusing.

‘Don’t speak to them like they’re going to lose their child. We had people do this to us and it was horrible. And not true’- god that must have be infuriating and so painful x

My son had ALL 3 years ago they don’t always do chemo for long now he had a stem cell transplant within 5 months which meant faster recovery and not years of chemo.
Practical things are good but give her a hug. Tell her it’s ok to cry I always had to be the strong one and would sit crying in the car and put on the brave face in front of people when I just wanted a cuddle and be allowed to break down.