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.

you could try your local childrens ward. Sometimes all parents need is someone to sit beside their child so they can go have a shower, loo or make a cuppa.

Imperial I'll give you my address . No, Clic Sargent are the people who will help me out if I need someone to come in and sit with DD when I try to go back to work.

tough lord knows what the implications are alongside chemo. I don't know whether I should be hopeful it is this condition or not, because if it's not, it's something else and that could be even more dangerous. I just know that high levels of iron can cause organ damage. Her enlarged liver was one of the first symptoms eighteen months ago. Obviously, everyone thought this was from leukaemia, but she has been getting unusual liver function results throughout that no Dr has been able to explain. I don't know how scared I should be at this stage. I'm restarting work in just over a week and focusing on that. She's okay in herself at the moment, just neutropenic and her platelets are now 27, so on the brink of transfusion again. She's quite tired, so she's staying at home this week. Every time I feel like I have a stab at trying to be more normal, something comes along and throws me again . The uncertainty is wearing me down .

Imperial, that is such a lovely idea, agree with others, you could contact clic sargent or macmillan to see if they need and volunteers. What Lisa said is good too, especially for the parents of toddlers in the wards. They are a really awkward age as they don't understand and DD was liable to tug or bite her tubes, you can't leave them alone for a second, even when they are sleeping. I had DD at my side the whole time and I had to wait till DH came in to pop to the shop etc.

kinky, take one day at a time. It's really tough not knowing what will happen next week or next month. After DD was diagnosed we were told our journey was going to be like a rollercoaster, a lot of ups and downs. You find a way to cope with whatever is thrown at you and you get the strength from somewhere. I'm sorry i'm really not that good with words. Looking back at the last 3 years I think I switched to autopilot during the worst times. I put my trust in the doctors and hoped that they would do the best by DD.
You can always get a second opinion if your not happy with something, most doctors don't mind you doing this.

That's lovely, Imperial. If you're crafty a really helpful practical thing to do is make Wiggly Bags. Go to www.madebyflorence.co.uk/pdf/wigglybagpattern.pdf for instructions and either send them to the address beneath or bring them to your local children's hospital. The kids love them and it really helps keep them safe from serious injury and infection risk.

Have just got out of hospital after DD had a scary turn yesterday afternoon. She got pains, couldn't breathe and fainted. It happened again in the car on the way down.

Some of her bloods were a bit off, but scans showed nothing so they've discharged her. She's due back for a lumbar puncture on Weds.

I was very frightened .

I also suspect something is brewing. These things don't happen to DD without something transpiring. She's gone with her Dad for the weekend and he is under strict instructions to keep a close eye.

Feeling pretty down at the moment.

Hoping that things are looking a little better for you and your DD today, KinkyDorito.

Kinky, hope your dd is feeling better today

Kinky - hope all is well with your daughter, it's so scary not knowing what's going on.

I've been in remission for 4 and half years from leukaemia, had a bone marrow test in December and have received an appointment to attend haematology clinic on Monday. I am a nervous wreck. I've rang them and I can't get to the bottom of why I have to go again, can only imagine the worst . It's horrid and never ending.

You're all so brave as I would hate to see my kids go through what all the treatment entails.

Hi all, can I come and lurk on this thread for a bit? DS (13 months) was diagnosed with a rare childhood cancer (not leukaemia) 8 months ago - I'm being a bit vague about the details because I don't want to out myself IRL! He finished first-line chemo a few months ago but is still having active treatment every few weeks. It would be good to hang around on a thread with other people who understand what we're going through at the moment.

Vev, I'm glad to hear you're in remission and hope the clinic on Monday goes well.

Kinky I really hope DD is doing much better. Has her Dad given you any feedback on how she is doing?

Vev I'm wishing you all the best for your appointment on Monday.

mackerella Welcome! I'm so sorry your DS has been diagnosed with cancer too, I hope he's doing well.

I hope everyone is having a good weekend .

Kinky how is your DD now? Been thinking on you all weekend

Vev hope all goes well at your appointment today

Mackerall lurk away and join in when you feel ready

We finally got the results of DD scan, no evidence of tumour, so relieved. Has been a very anxious wait. She still has to get scanned every 4 months for the next year or so but really am feeling more positive now.

Thank you all for getting me through

Hi, I hope you don't mind me posting here but having started a thread elsewhere toughday kindly suggested I post here too.

A child in my son's Year 2 class at school is just about to start 8 months chemo for bone cancer and I am wondering if you have any advice on ways we can support him and his parents through this time?

Initially, we've organised a collection to buy him a present to cheer him up a bit whilst he's in hospital and I'm just wondering if anyone could suggest what kinds of things are most appeciated by children in that situation?

I am assuming that once the chemo is underway and his immune sytem is down that his parents may not want him to have visitors but I am wondering what we, and our children, can do to help him? I was thinking of organising rotas for his classmates to email and Skype him. Any other ideas?

At the moment his parents are, understandably, shell-shocked by all that is going on. We are planning a rota to provide them with home-cooked meals a few times a week and they will soon have family arriving to help them out but I am wondering if anyone with experience in this situation can suggest other ways we can help?

Toughday - that is great news - I'm thrilled for you

Kinky - hope dd had a good weekend and is feeling better.

Hi Mackerella, sorry to hear about your ds - I hope you can get some support from us here.

HoM - sounds like you've already got things underway with a present and contact from his classmates. Practical help is always good - if there are any siblings, they may need picking up from school sometimes if the parents are at hospital or trying to work as well. Meals are good, perhaps some washing or cleaning if you're good enough friends (I wouldn't want casual acquaintances washing my smalls!!).

Things are good here - ds seems to be remarkably well after his chemo - no side effects really apart from feeling a bit tired. He's got vinc on Wed, then 4 weeks til we're back in hospital for the next cycle, so plenty of time to recuperate and gain some strength (and weight hopefully!).

Toughday - I'm so very pleased to hear about the scan results!

HoM - keeping the communication going the whole way through is the big one, it's so sad how people tend to fall away. I've heard of an American scheme where a special teddy sits in the vacant chair in school to remind the children to keep a space emotionally for the missing class member. Anything you can think of that makes him feel still part of the group and makes them remember he is part of the group would be incredibly good for him. Skype would be amazing if it's possible, some wards don't allow wifi or mobiles though. As far as presents go, the most important thing is for them to be wipe clean, so they can be disinfected regularly when his immune system is really low. Things with lots of little toys that pack away into a case work well in a ward situation as do art and craft materials. Even though he's on chemo though there may be long periods where he's at school, or at home at least.

Stinkyfeet is right, practical help is so important if it can be done. Visitors can indeed be tricky but two of my DD's closest friends visited when they could during her eight months inpatient and it made a massive difference to her.

Here's a link to a pdf file of a book for kids about a child with cancer. If you spread it around, it may help the kids understand:

www.clicsargent.org.uk/@946/CLICSargentpublications/Children/main_content/SER03LucyhasaTumourweb08.pdf

One other thing you may want to consider is showing your support by encouraging all the parents to give blood in his name. It may not help him directly, but most kids going through chemo need blood transfusions to get them through it and it's a practical gesture most people can make which would really show the family how much people care even if they can't do something directly.

Medulloblastoma here too. Aged 2.5. Surgery-headstart 3- radio. Finished last August.

It is so terrible. Every so often it hits me afresh - 50% chance, live, 50% ... I can't even say it.

Scan coming up, but don't know when (2nd one post treatement). I am terrified. I can't sleep. My DC is so damaged - hearing loss, permanent baldness (56cGy DT), nerve paralysis (very visible) and learning difficulties from RT though nothing obvious yet.
i alternate between kidding myself it's going to be OK, and searching for a cure online that doesn't exist.

Does it get better?

I do everything I can to get people to sign that petition. Funding is so rare, it's so frustrating. It needs 93,000 more signatures before June

Thanks farlo and stinky

Hi HoM, glad you got over here. I don't know about others but I would have loved my DD to have a few visitors, as long as they weren't sick. After her treatment people said to me I would've visited but thought you didn't want visitors or I didn't want to bother you. Whereas I would have loved visitors, after a while you think people have just forgot about you , everyone is there in the beginning but soon tails off.

Queenmarigold I have been where you are, our statistics are the same, we have just had our 2nd scan post radiotherapy. The panic and the fear of not knowing. DD also had a brain tumor, has hearing loss and permanent hair loss as well. Try and stay positive and distract yourself. Not easy I know, when it is always there every minute of the day. I find now harder that she is off treatment as there is no aftersupport form the hospital.
I now find it easier when I talk to other mums that have been through this. We now make a point of meeting up every month or so for a cup of tea and a chat and talk about our worries. We are all in the same place mentally and because we kept all our worries to ourselves we are all a mess. Now we talk and we just pick up the phone or text when we are down. It does help.

Don't keep things to yourself, talk on here about anything

houseofmirth - that's lovely of you all. Offers of help with gardening, delivering post etc whilst in hospital is also of practical use. It also helps to talk to people who know the facts, so you don't have to keep saying 'cure rate is only X%' and also some knowledge and understnading that long term survival is not a cure - it is just survival as these precious kids pay the price for their treatment.
Also it can help to keep reminding yourself that, whilst every parent chas worries and concerns about their child, and have to make 'big' decision sabout which school to apply for etc, ... they are not that big. Really. That kind of thing makes parents feel so isolated and alone. You sound like a lovely friend though and I'm sure you won't do any of the above!

Queenmarigold I don't think we are lovely but thanks for saying it. Anything we can do seems so utterly and pathetically useless in the face of what they are going through.

Thank you all for your advice and for making me welcome here. I will lurk for more advice and to see how your DCs are faring. I wish them all .

DD is fine. Still borderline neutrapenic and looking very palid. Went for lumbar puncture today and that was fine.

I'm due to start work again from Monday. On the one hand I'm looking forward to it for my sanity/money, but I'm dreading how she's going to be. After one 'normal' month we seem to be stuck back in the rut of a variety of ailments. I'm feeling incredibly depressed. I never know what to do with myself through the day and find myself going back to bed a lot. I'm just hoping work gives me a boost rather than finishing me off .

I'm going to read through what I've missed now and catch up.

Sorry to hear you're so low KD. It's horrendous how all of this grinds you down. I really hope that work is the distraction you need and helps you feel part of the 'real' world again. Have you any local cancer support charities, like a Maggies centre? We found ours very helpful, got some free counselling from their psychologist. Good luck on Monday. Hope it goes great! Have you had her immunoglobulin levels checked? That was the answer to our DD's neverending hospital admissions. x

Just. He long in with you all. Sorry to hear little ones are unwell, due another round and also about new little ones joining the fight.
If any of you are in herts or just outside please let me know of anything I can do, even if it's just sitting for a few hours while you have shower ect. I work with families in my job so happy to show crb ect.
Dh was due at the hammersmith on Monday but he didn't go and get his testing due ontime so have to wait another month
He assumed that he is feeling fine so is fine. Last time he made that mistake he had started to develop resistance to chemo so cancer was increasing
Prayers are out for you all today x

I hope he's okay lisa.

Thanks farlo. They've never mentioned immunogloulin levels to us?

I hope everyone is okay?

Hello everyone,
Just thought I would pop by and say hello and see how you were all getting along.

Love to the kids and you and sending 'chin up' vibes across the internet x

Wishing you all the best for today kinky.

Hope everyone else is doing good