Children with cancer

[KinkyDoritoWithFairyLightsOn]

Hi all

I'm going to start this and keep bumping it as I don't think there is a thread for supporting anybody whose child has cancer and I know there are others about. In part, this is a good thing as it shows that it is still very rare, however it doesn't feel like that when you are sitting in a children's oncology ward.

I will be around and am happy to chat to anyone who needs it.

My DD is 13. She was diagnosed with ALL in January. She has to have 2.5yrs of chemo in total, if everything goes according to plan.

I also write a blog that is listed on MN. The catchily titled: The Acute Lymphoblastic Leukaemia Diary.

Best wishes to all.

[KinkyDoritoWithFairyLightsOn]

Hi Farlo. It's lovely to hear that she has finished. Is life normal again now?

This is a link to the Facebook ALL group should anyone want to join:

LINK

[FarloRigel]

Hi there, it's not really normal for us as her parents; the fear is still there big time as we're still in the first few months without the cover that the chemo provides so we're very aware that this could all kick off again with a moment's notice - particularly as she had a high MRD after induction (you'll have worked out who I am from the group by now ). However, that said, we are keeping more positive and enjoying life more than we thought we'd be able to so soon after going OT and life is almost normal for HER and that is wonderful. I love seeing her with so much energy and I've been tearful at times with happiness watching her have her first normal, happy and well Christmas since she was two years old . I'm not sure life will ever be back to normal after all we've been through and the ongoing potential for relapse, but as long as she stays well I think we'll be more and more relaxed as time goes on and I can see the potential to be happy with a new normal further down the line. I do second the recommendation for any of the ALL families to join us on the FB list. We're a bit mad but very welcoming and more than happy for a chat and a virtual hug and at any time.

[CURIOUSPARENT]

All the best to eveyone in 2012 - wishing all those having/recovering from treatment and in remission very good health for the future x

[Stinkyfeet]

Hi and Happy New Year to all!

Something practical the cancer veterans can help with - ds1 and I will go into hospital for 3 days in a couple of weeks for his 1st full chemo. What should we take? Obviously all the usual pjs and toiletries, but what have you found makes a welcome difference to your stays?

[lisad123]

nice jams to spread on there crap crackers, and toast if feeling up for making some (take bread).
Lip balm, ice pops (first ward has freezer section), milk and tea bags/coffee, a good book for you, DS fav toys and a pack of cards.
DS pillow and yours. Chargers for phones and ds ect
MOney for when they paper and sweetlady comes round.
Not sure what else, will carry on thinking

[ChippyMinton]

Excuse me crashing your thread all. Just wanted to pop in and say hi to stinkyfeet, and wish DS1 all the best for the forthcoming chemo. Will be thinking of you. xx

[Stinkyfeet]

Thanks chippy, and happy new year.

Those are great suggestions lisa - will take decaff tea and coffee - wards are hard enough to sleep in as it is, without being full of caffeine as well!

And thanks for reminding me about pillows - ds had his radiotherapy under GA and we had to take his pillow with us every day as he hated waking up on the hospital ones!

[FarloRigel]

Hi Stinkyfeet, wishing you all the very best for DS1's chemo. Everything lisad recommended is great. Here's our list of tips:

1. My DD always loved to take her favourite dressing up costume (Scooby Doo), it got loads of smiles and was a great ice breaker, especially from the night staff, we even got asked by a junior dr to pop her in it one night and then she was 'borrowed' to show everyone across in surgical lol!
   
2. She used to crave really sour things to take away the rotten taste in her mouth and wouldn't eat much else, so we always brought a big bag of pickled onion monster munch and she went through loads of apple juice. Lemon lollies might be a good one since your DS is older.
   
3. For if/when his hair comes out we found a pet hair roller invaluable because it used to annoy the hell out of her on her pillow so we could roller it any time she got up in the night. You'll probably be home for that stage though.
   
4. We also brought a portable DVD player and all her favourite DVDs and books as if the steroids kept her up at night the kids' TV was off and there weren't enough DVD trolleys to go around. She was too lethargic to play a lot of the time so that kind of passive entertainment was great.
   
5. Do bring loads of extra cheap changes of clothes for you both; hopefully he won't be too sick with it, mostly DD wasn't too bad, but it can happen and she had fearsome diarrhoea a couple of times too.
   
6. We also brought loads of cold drinks for ourselves, I don't know what it's like on your ward but on ours it could be hours and hours before we could get someone to be available to keep an eye on her and we didn't like to leave her on her own - although she was much younger so this is probably less of an issue.
   
7. Bring corsodyl mouthwash to help guard against oral thrush and nasty ulcers, and if you notice any whiteness developing despite that hound them to prescribe nystatin asap. We found a soft toothbrush really helped to keep the tooth cleaning going despite the ulcers (which he may well not get, it's just in case).
   
8. You may want to bring nappy/barrier cream, the urine and loose stools can be pretty caustic when the chemo starts passing through depending on what he's having! Being an older boy it's probably not an issue for him unless he gets really bad diarrhoea, but if he's due a lot of vincristine it can cause urinary incontinence so may be well to be prepared. Otherwise you could bring a bottle of oilatum for his baths to act as a barrier for the area.
   
   Hopefully he'll sail through it and not really need any of that, but that's a list of the things we used through many complications over two years of chemo. Wishing you all the very best, hope he's one of the lucky ones who feels grand all the way through.

[toughday]

stinky, adding to what lisa said, we used to bring a portable dvd player and loads of dvds. A few magazines, snacks, bottles of water, soup and diluting juice. I had to bring loads of things to keep DD entertained as the play assistant was rarely around and all the toys were locked away when she wasn't there.
I also brought my laptop and I got a dongle to accesss the internet, to pass a few hours as well.
I'll keep thinking

[lisad123]

Which hospital are you going to? I have a portable DVD player your welcome to borrow for a while.

[toughday]

x-posted with farlo, thats pretty much everything we did as well, dd finished chemo over a year ago and its amazing how you forget things.
We found vasogen a great nappy cream, the hospital gave us a yellow thick one can't remember the name now, think it began with m,and it made the nappy rash bleed and ooze. The vasogen was brilliant and cleared it up in no time.

[KinkyDoritoHopingForAGreat2012]

I'm going to read and respond properly in a bit as we are up for the first school run in weeks.

I feel quite sick at the thought of her going back. The school is HUGE.



Is it unreasonable to lock all the doors and just stay here?

[KinkyDoritoHopingForAGreat2012]

So much for replying later, I'm procrastinating like mad this morning.

We used to move in to hospital!

I took her a single duvet and bought lots of covers for it, and pillow.
LOTS of pants (DD has just confirmed this )
Haribo or other fruit sweets to suck during chemo, soft ones though
Cheese strings (chemo makes them like salty stuff and the fridge in our unit used to be full of these and babybels)
Remember my pants too (I'd always forget mine )
Magazines
They have DVD/TVs at each bed, so DVD boxsets and headphones if they want to watch them later on
Juice - she likes capri suns
Laptop if you have one and the ward don't
Things for you. I found when I was really worried, I couldn't concentrate on a novel (this got easier) so back to magazines. Last time I went in we got some craft materials from the playworker and I sewed Christmas decorations out of felt. I haven't done anything like that for years, I found that quite soothing - so little hobby bits if Hospital doesn't have them.
Important: food for you. Take in your own ready meals as it is usually much cheaper than hospital, and you don't then have to trail out to the supermarket if you don't want to.
Bottled water for you - lots - you dehydrate like mad in there.
Headache tablets for you (as above).
Nice slippers for both of you and robes if you have space.
If you have space, a duvet for you too. I never did this, but wish I had on the stays that turned into 5 weeks.

[KinkyDoritoHopingForAGreat2012]

Laptop if you have one and the ward don't

doesn't

[KinkyDoritoHopingForAGreat2012]

Hand cream for you too. The first stay my hands cracked and bled from alcohol gel.

[KinkyDoritoHopingForAGreat2012]

tough how shit that the playworker was hardly there .

[lisad123]

i worked alongside play workers at hospital for a few weeks when I was training. There was a lad there who was stuck in isolation :( we used to post notes under the door to each other. I left before he finished his treatment but still think about him :( 2 play workers, one was good, the other was naff.
Oh yes, hand cream!!

[KinkyDoritoHopingForAGreat2012]

We always end up in isolation. I really feel for the kids who have bone marrow transplants and are isolated for weeks, especially the little ones who want to go out and explore. At least with DD I can give her a laptop and she's happy.

[toughday]

kinky, I had to bring enough stuff to entertain DD for a week, when the play assistant was there she always did crafty stuff witht he older children but as DD was only 2 I just think she didn't know what to do with her. When she took her holidays and another play assistant was there she was fantastic, she brought dolls and loads of stuff so dd could bath them. I asked her why the other play assistant didn't bring stuff like that and she told me it was locked away in another part of the hospital and probably just couldn't be bothered to get it .

Another thing I found was great was to do my grocery shopping online, I had never done it before DD went into hospital as we live quite close to the shops (I can see them from my house ), but it was great to have all the groceries delivered to the house and not having to worry about taking dd out into the shops.

Also I also had a bag prepacked in the boot of the car with a toileteries, pyjamas and few changes of clothes for me and dd. This was for when she spiked a high temperature and had to go to hospital immediately.

Good luck kinkyto you and your DD today.

[Stinkyfeet]

Thank you all - some really good ideas - I'm going to need a mahoosive case aren't I?! I can borrow a DVD player so will definitely do that. I know there's not much phone reception inside the hospital but think I'll take my laptop and dongle just in case.

Kinky - hope you managed to get dd to school OK and that the day goes well for her.

We're at the hospital on Thursday for an MRI scan, and again next week for a hearing test and kidney function test, so will properly check out the parent facilities on the ward - we've only been in day care so far.

[KinkyDorito]

School was okay, but her joints were really hurting her. She's gone for 4 lessons again today (8.20-1.30).

I'm still strongly suspecting I'm kidding myself that she can manage FT. If she can't do FT than obviously I can't and I don't want to pressure her.

What to do?

I have a meeting with work in just over a week.

I hope everyone is okay today .

[toughday]

DD back at school today, really excited after the Christmas break to see all her friends again.

kinky, I really don't know what to say or advise. I know myself that there is no way I could cope with full time teaching at the minute and I have been off 3 years now, maybe it's because the longer i've been away the harder it is to go back. Initially I wanted to wait till her chemo finished, now I think i'll wait till DS is in school.

The older cancer children I know haven't went back to school FT for at least a year and a half - 2 years after diagnoses. When they went back at the beginning they were both mentally and physically drained and could only cope with PT.

You know you DD best

[FarloRigel]

We were so fortunate in a way, timing wise; my DD only had to do a couple of months of school before her treatment ended, but prior to that she had been putting in full days at nursery all through long term maintenance. I know that sounds cruel, but the only other option was having the house repossessed as nothing is selling in our area due to the closure of the largest employer and tons of houses sitting on the market.

We had loads of meetings with the nursery staff and then the school to explain how she would be, and our Clic Sargent nurse came with us to back us up. Nursery gave her rest/sleep breaks any time she wanted and she thrived there, although school was a bit more difficult about catering to her needs and was a bit of a struggle for her. In theory she should have had access to the school nurse any time she wanted for a rest break and to be able to opt out of any physical activity if she wasn't up for it, but in reality it didn't seem to quite work out like that .

Both my husband and I went back to work FT after the first year but it was terribly hard and I wouldn't recommend it unless you don't feel you have another choice. If I could have gone PT or stayed at home I definitely would have! Too many debts after a year off work though .

[lisad123]

Kinky maybe you could look into a childminder for you going back to school. A homely environment and maybe they will keep her there instead of school ft?
Family or friends?
If I'm nearby I'm happy to help. I gave up work last year, not because of dh having cancer but because we were told dd2 had autism. I already had dd1 with autism and just knew something had to go so it was work.
Have you applied for DLA and carers?

[KinkyDorito]

I do have some family who might be able to help, but the problem is that inevitably she ends up in hospital or with issues that she needs me to help her with (some really horrible, personal things that she's had as side effects). So, even if I could get someone to look after her, she would still need me.

Thank you all for your kind words and suggestions though.

She's staying here today as she's very tired from the two days she's done this week.