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3 year old with Leukemia what can we do to support the family

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#1 casper1675

Posted 04 February 2019 - 02:31 PM

My nephew was recently diagnosed with  leukemia.  He's  only 3 so it's all a bit of a shock to everyone.  
I was hoping to get some advice as to what we can do to support them through treatment.

They're  still in hospital. And I'm  doing a big lot of frozen meals to give them for when he comes home.
Is there any other practical stuff that people can suggest? If you've  been in this position is there anything that is particularly helpful or appreciated? . We all feel so helpless right now.

Should we all make sure we're up to date with all our vaccines?

#2 HippyDippyBaloney

Posted 04 February 2019 - 02:46 PM

My youngest has spent a fair bit of time in hospital (not cancer related) and one thing that always sticks out to me is the cost of parking. It really is astronomical at my city’s children’s hospital. Maybe offering them assistance with transport?

#3 little lion

Posted 04 February 2019 - 02:52 PM

That’s awful news. My experience is writing as someone whose DH spent a fair bit of time in hospital last year.

Is your nephew an only child? Arranging care and time away from hospital for any sibling(s) would be very helpful.

I appreciated people meeting me at the hospital for a coffee etc. Also, if they will be applying for income protection insurance or ACCS for other children, that paperwork can be daunting and I found having people I could talk to helped.

#4 lizzybirdsworth

Posted 04 February 2019 - 02:57 PM

Things to do in hospital, magazine subscription, book vouchers, colouring for little one and little craft things to put together. Offering to help clean the house or do some washing bring in food, drinks etc to hospital, offer to sit with child or the parents if they need a moment to step out and gather their thoughts. Best thing is to be a ear and a shoulder to cry on if needed

#5 SplashingRainbows

Posted 04 February 2019 - 03:21 PM

I found friends of ours needed me to be pushier than I felt was normal for me. So not asking if they wanted meals in hospital - just bringing them and assuring them it was ok for them to chuck them if they weren’t helpful.

Keeping life as normal as possible for other siblings.

$ for transport.

Snacks - especially breakfasts that could be eaten one handed.

Being company and a friendly face  - I found text messages weren’t as well received as visits.

Stuff for the little one to do. Puzzles / stories / games.

Edited by SplashingRainbows, 04 February 2019 - 03:21 PM.

#6 FearsomeFeralFreak

Posted 04 February 2019 - 03:23 PM

If they have any other children then assistance with the siblings is always helpful.

When our friends were going through this with their youngest child we often minded the older kids before and after school and and pre-made lunches/recess for school that day and the next.
We also got them to do their homework with us and we got them to extra-curricula stuff as needed.

We also did a few shopping runs for them as they didn't have time. Toilet paper, milk, bread, breakfast cereals, that kind of stuff. Getting to a supermarket just wasn't possible for them a lot of the time and they just didn't have the headspace to do it online.

Failing that - deliver some real meals to the hospital! Takeaway food is a welcome break from hospital food.

And never ever visit if any of you are sick, or even have the slightest sniffle.

And source some nice hats for your nephew! If you can make them, all the better, it not, just make sure they are very soft because his head will be sensitive during treatment.

Edited by FearsomeFeralFreak, 04 February 2019 - 03:25 PM.

#7 rowd

Posted 04 February 2019 - 03:34 PM

Yep meals! We spent a lot of time in hospital with our daughter and people dropping food off was so appreciated. I remember some people would even bring the plates and cutlery etc, stay for a little while we ate and then take it all away again.

Visits are great too, there is so much downtime and having company helped pass the time.

Doing jobs at their home - like going round and mowing their lawns (or paying someone to do it), watering plants, feeding pets.

Flowers were always nice too, something to brighten up the room and make it more homely.

#8 JomoMum

Posted 04 February 2019 - 03:54 PM

OP, wanting to help is the first wonderful thing you can be doing. Being involved and just caring will make such a difference just in itself xx

Some suggestions of mine, some of which have been echoed above:

- If there are any siblings, can you assist in keeping their routines normal with daycare/school etc
- If they have long stays in hospital, if they’re comfortable with you doing so, head to their house and change and wash the towels/bedsheets etc. Put some frozen meals in the freezer. If theyre due home, get some bread and milk and some basic groceries/household items for that first night home. Bring their mail in to hospital if they want it?
- offer to take their clothes home and wash them etc.
- offer to look after the lawns/gardens/pets at home
- Ask to visit in hospital - some people don’t want visitors, but a lot of people say they will visit and never do. So if they want you there, head on in!
- ask what you can do for your nephew - are there favourite foods he might like to eat while in hospital? Hospital food for kids is generally pretty atrocious and he may have a selective appetite. Likewise, a regular rotation of some of his favourite small toys/books may be appreciated depending on how he’s feeling.
- home cooked meals/good takeaway are like gold in hospital. Try to never turn up empty handed, even if it’s just a good coffee and a muffin :)

#9 MooGuru

Posted 04 February 2019 - 09:12 PM

It is a really overwhelmingly awful time for everyone involved.

I know families where there were other kids - help with transport and meals made a world of difference. Especially in a routine kind of way so the kids were able to know that on X day this person would pick them up every week.

In hospital getting brought meals is good but I'd check first or work out between your family who will do things when - you don't want 5 people to show up with amazing food one day then have 3/4 of it chucked out - depending on where they are and access to a fridge etc - then no food delivered for 2 weeks because everyone thinks someone else will do it.

Washing clothes is a massive help.  We spent close to a year in hospital mostly in isolation. My parents doing my washing and bringing food made my life so much easier.

Every person is different but I really appreciated humour at a time there often wasn't a lot to laugh about.  That became my go to request when someone said what can I do - make me laugh. Send me jokes. Tag me in memes. If you did something stupid today I want to hear about it. One of my friends managed to get locked in one of those ATM rooms. She messaged me about it before she called someone to rescue her. I really appreciated that.
BUT other people don't appreciate that. Some people love spiritual prose about strength and serenity. Some want to swear and feel their anger is heard.

I found the idea of visitors really overwhelming and probably would've turned most away. But once they were there really enjoyed the company.
I felt less pressure with a message like "I'm really craving corn chips right now. I can be at the hospital in an hour with a party sized bag of chips. Is that ok?" Than a more formal planning. But again everyone is different.

My sister and nephews visited on weekends and we'd play in the corridors etc. The hospital corridors can make awesome playgrounds. The longer you are there the more confident and adventurous you become when dealing with managing the IV pole and lines etc.

I don't mean this to sound awful but I found lots of people shut down around me because they didn't want to complain or seem ungrateful for having a "better" life. So they'd go silent. And we'd kind of stare at each other:
"Hey how are you? "
"Oh not great but you don't want to hear me complain when you've got so much happening here.  You tell me what's going on."
"Nothing. I haven't left this room in 3 days. The most adult conversation I've had is 'what's DS's name and birthday?' for med checks. That's it.  I'm begging you please tell me what's going on for you."
"Oh no I couldn't talk about my life when you're doing it so tough. Tell me about you.".....

Most importantly never assume an oncology kid is like a normal kid with infection. A slight sniffly nose?  Don't visit or check in with the parents first. Obviously accidental exposure happens and can't be helped but we also saw and heard about lots of deliberate/completely thoughtless exposure i.e. the kids were up all night vomiting but they've been fine for a few hours. Or I've got a really nasty cough but it's just a cold. Unless you've been to see your doctor and they say you are ok to spend time with a neutropenic child assume you are not ok.

Um oh DS's treatment was one of the harshest chemo protocols for kids but was short in duration. In contrast many of the treatments for leukaemia stretch for 3 years using less intense chemo doses. I know from a few families that "almost normal" of being at home but still in chemo and not actually normal really wore them down - the constant relentlessness of worry and oncology life even though from the outside "yay your kid is at home! Yay your kid is into the next stage of treatment! Yay you should be grateful you aren't worse off!"
I guess be prepared to be there for the long haul and sometimes feelings to be down when you expect them to be up because that's the first opportunity the parents have had to let go a bit.

Sorry that's a long post.

Feel free to PM me anytime.

#10 JoanJett

Posted 04 February 2019 - 09:17 PM

So many good suggestions.  It's very considerate that you are checking about vaccines and yes, yes, yes.  Flu vaccine in April/May (depending on govt recommendations) is something to consider if you don't normally have it.

Childhood leukaemia is treatment for the long haul.  So many people are there in the beginning, but drop off over time.  Apart from visiting, if you are close to your nephew, offering to be the comfort person for an evening helps.  Parents need some time together to have time to do debrief, time to themselves and time to rest.

Long treatment in hospital is expensive.  Time off work, parking as mentioned, medications, bills etc.  Gift vouchers or cash would be just as welcome as home cooked meals.

Offer time - I have x hours free this week.  Tell me what you need - washing/cleaning/food/company etc.   Or just one regular support activity per week that can be relied on.

#11 lizzybirdsworth

Posted 04 February 2019 - 11:02 PM

One thing I read from our family friend whose son is still getting treatment for leukaemia is to stay away after vaccinations because of the live thingys (can’t think of the proper term). So it ms really best to check with your dr and also check how long you should not visit for.

#12 Bigbaubles

Posted 05 February 2019 - 05:30 AM

Things I would think about

- meals, either a meal subscription or making meals for them
- offering to help with siblings and make them feel special and loved and cared about because I know that siblings of kids with illness can often go through really difficult times
- money - depending where you live the commute and then parking for hospital can be really expensive, i've had a few friends do go fund me's or a few friends put in some cash towards expenses.
- fun things for your nephew to do in hospital. Some little duplo packs or figures or puzzles and stickers?
- offer to spend time with your nephew in hospital while his parents can even just have a little meal in the cafeteria together.
- a cleaner - I would probably feel really weird and awkward if a friend cleaned my house, but would probably feel less embarassed if it was a professional cleaning the house.
- you could do the same for washing etc.
- even lawn mowing or weeding the garden
- just being there for them regularly. Calling to chat, dropping by for a visit and just being a shoulder to cry on if needed.

#13 MooGuru

Posted 05 February 2019 - 05:55 AM

Oh just thought of something - don't post anything on social media unless the parents have posted it first.

We got calls from the media based on things other people had written. The media unit at the hospital said a large chunk of their work involved families who were suddenly in the public eye because of things extended family/friends post.

#14 MayaTheGrinch

Posted 05 February 2019 - 08:23 AM

My goddaughter just finished her treatment plan for leukaemia and it was a long long haul and her treatment was considered “short” in terms of leukaemia treatment (3years).

As others have said meals help. What my friend said helped most was someone helping with her other children. So she didn’t have to worry about getting them to school or daycare. We chipped in for a cleaner to come once a week for the first 6 months and it just gave her piece of mind. Someone would come around and do a few loads of laundry so there was clean clothes and sheets.

And yes don’t share it with others or on social media. My friend needed a few months to come to term with the overwhelming part of it before she felt she could share anything like the diagnosis. Her closest friends and family knew but, yes. And just be there for a shoulder to cry on when it gets to be too much. My friend knew she could ring me at any time. Help with parking costs, after the initial admittance, my goddaughter was at the hospital for appointments what felt like weekly.

Also do not under any circumstances visit with even the slightest hint of being sick. A cold could put the child in hospital. My goddaughter was told if she ran a temperature of 38 she needed to get to the hospital. Make sure anyone who is around then is vaccinated as they lose any vaccination coverage they have and their immune system is comprised.

#15 Chapvane

Posted 05 February 2019 - 03:53 PM

Firstly my heart goes out to your nephew,his parents,yourself and all of your family.
My DS1 15yrs old was 18 months old when he was diagnosed with leukaemia. We would never of got through the years of treatment without our extended family - Aunties, Uncles, Nana,Grandma, Poppy and Grandpa.
It was a very long hard journey for us but my son is wonderful now.
DS is probably the most caring,understanding,loving,considerate and positive person I know because of his journey with cancer.

As far as help was concerned what I found most wonderful was Aunties,Uncles & Grandparents ( when well) being able to be with my son so I could take a break - to go for a walk, to go home for a few hours or to go out for dinner. My son is/was very close to all these family members before he got sick so was happy to have them there when he felt really unwell.
I vividly remember my brothers, dad and sister in laws spending hours walking my DS in their arms up and down the corridors with his IV pumps.
All my family provided home cooked meals on a regular basis - you really get sick of takeaway and hospital food.
And when you have a break in treatment and are at home other people(friends)cooking meals for you is also a huge help.
Family also paid for a cleaner once a fortnight.
So all PP have made great suggestions.
All the best to you all.
You will get through this.

Edited by Chapvane, 05 February 2019 - 04:07 PM.

#16 casper1675

Posted 05 February 2019 - 05:23 PM

Thank you everyone.  Its nice to know  that we've  been doing/ offering the "right" things.

Luckily there are no siblings  to worry about. So they can focus 100% on DN.once they all get settled or back home I was going to offer to spend some time with him so his parents could spend some time together.

At the moment we're treading the line between offering support and assistance but trying to give them space to process.

#17 notsoretro

Posted 05 February 2019 - 07:16 PM

View PostHippyDippyBaloney, on 04 February 2019 - 02:46 PM, said:

My youngest has spent a fair bit of time in hospital (not cancer related) and one thing that always sticks out to me is the cost of parking. It really is astronomical at my city’s children’s hospital. Maybe offering them assistance with transport?
Check the hospital website. When my Mum was in hospital for a month I was able to purchase a weekly pass for $22. Much cheaper than the $4 per half hour regular price. A ward nurse printed out a form for me to take to the parking office

#18 little lion

Posted 05 February 2019 - 07:34 PM

That’s a good point about parking. Often this type of assistance is arranged by the hospital social worker.

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