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.

Bumpity bump

Hello, i was wondering if you could all give me some advice.
One of my close friends has just had her eldest son (he is 5) diagnosed with an inoperable brain tumor. He is having radiotherapy to reduce his pain and symptoms, and they have been told they have 6 months max with him, but he will deteriorate in this time.
How can I help her? Words are so ineffective. She has another child who is 4 they are 11 months apart). I don't know what to do. Me heart is breaking fro her and her family.

That's horrible. Practical support as much as you can - cook meals? Clean the house? My house was such a state as I was worried/in and out of hospital. Free up time for her so she can spend it with her children. I'm sure they'll have volunteers from charities to help too, but she'll probably feel more comfortable with you.

I am so, so sorry . I will be thinking of them.

Also, if you drive, giving lifts when in hospital so they can avoid taking and leaving their car if parking is restricted.

I agree pratical support.
Also maybe they would like a little family holiday together before he dies, so maybe see about that. Just be there.
Buy a video camera if they don't have one.

Scrambled, so sorry for your friend and her family.

Agree about practical stuff - taking/collecting the younger child to/from school or nursery. Washing, shopping, cleaning. I would assume he will have his radiotherapy under general anaesthetic, so they will probably be at hospital for 3-4 hours every day - it's hard to keep on top of everything else.

Definately agree practical support especially with two young children.

Home cooked meals that could be reheated, bit of cleaning and washing clothes? Kinky my house was the same, the bare minimum of work was done. I remember crying in the kitchen with DH at the state our house was in in such a short space of time.

Scrambled, just even being there and listening can also be a big help.

Still not really on top of the house yet . It's a constant war here! I would love a cleaner. I get very fed up and can't bring myself to do much. It just goes to chaos around me. Then I have a spurt and clean the lot. Then back on the sofa. It's a vicious cycle. I'd love someone else to do it for me.

How is everyone getting on?

I'm hoping you are all having lovely, peaceful weekends.

So sorry to hear about your friend, scrambled. I don't have anything very different to add, just agree with everyone who said to be there and give simple, practical support. You'd be amazed at how many friends and even family run a mile because they don't know what to say and so make the mistake of saying nothing rather than say the obvious 'I'm so sorry this has happened to your beautiful DS' and 'how are you managing today, how is he feeling today'. Or because it's so scary painful to watch and hear and they can't bear to just sit and give someone a hug without necessarily saying anything and listen to it all.

I have to admit, our house was a total disaster too all through treatment and still is but let's face it you do have so many other things to do and appointments / emergency admissions that you have so little time left for normal stuff. Plus you get a new sense of perspective about things like that, after all what are we going to feel bad about in a few years when we look back on how miserable they were - not getting that shirt ironed / room vacuumed or not taking our kids to the park when their counts are up and they can go for a change or not reading them an extra story when they really wanted one? Have to say though, I'd have loved a cleaner too and would definitely have got one if we could have afforded it.

We're certainly having a quiet weekend - we've all got this rotten cold that's going about! Luckily my DD is coping with it really well. Guess she's been off treatment long enough now to be able to fight these things. Plus she's still on her immunoglobulin so has had a bit of a boost dealing with this one. No doubt it'll make her bloods a bit odd this week and freak us out a bit but we're well used to that little 'joy' .

Scrambled - so sorry to hear about your friend's little boy, that is very sad.

I agree with what everyone else has said about ways to support her, there are some excellent suggestions and were things that really helped us.

Although our outcome was different and DS made a good recovery, we were told that his chances were slim. Of course, everyone was worried sick and I felt as if I had to be as positive as possible for everyone else, particularly for both sets of GPs, which was exhausting. I only ever cried in private and the last thing I wanted was to be hugged by anyone trying to support me while I was trying to maintain that brave face. DP and my precious DS were the only ones who got close.

What I am trying to say - somewhat clumsily - is that I could have really done with a friend to say 'You can tell me honestly how you feel and rant and cry as much as you need. You don't need to put on a brave face for me.'

You sound like a very caring friend and I'm sure that whatever you do will help her and her family get through a dreadful time.

We got a cleaner about half way through DD's chemo. It was one less thing to worry about and at least my floors were washed once a week.

When DD was on chemo we never had any visitors, friends said they didn't want to bother me as I had so much on going on but it would've been nice to see people just to have someone to talk to. DH's family live nearby but are too wrapped up in their own lives and very rarely help out. We only ask now if we are desperate. My family help out with looking after DS when DD is in hospital but they don't live near.

Posted too soon, sorry that sounded very ranty. I felt really lonely when DD was on chemo and even now its still hard sometimes, especially now the scan is coming up.

Hope everyone had a lovely weekend

I'm exactly the same as both Busters and tough. I didn't cry, instead I have repressed everything and left myself in, if I'm honest, a bit of a state, on ADs and 3st heavier. It would have been good to have had an outlet - someone to talk to.

Also, I felt very lonely. My family live over an hour away and all work, so, though they did help, it wasn't a matter of just being able to pop round when I felt fed up (and still do), plus I'm a bit imprisoned by things like tutor appointments and hospital so it's difficult for me to go there. I don't have many friends here anyway. A couple of people have visited, but it's been a pretty miserable year. That's why I started this thread.

Theres a Bone marrow Q and A in aid of Expatinscotland (her dd has been dx with AML)

Hi, all. Thank you, those who PM'd me with links to this thread.

In November, our 8-year-old daughter got a bruise on her shin in our village's new playpark.

It didn't go away and, in about 3 weeks, it morphed into cellulitis. I took her to the GP, who prescribed oral antibiotics, but within days, he sent us to Yorkhill Hospital.

That evening, she was found to have leukaemia, and AML was confirmed via bone marrow aspiration a couple of days later.

The first block of chemo put her in remission, her sample going from 60 to 3% leukaemia.

She just completed the second block, more aggressive, yesterday, but was already neutropenic by Saturday so here we are again in strict isolation.

She has a lot of cramping in her gut, the pain now controlled by morphine, and a wee infection and is on IV feeds.

As some of you already know, she needs a bone marrow donor.

welcome expat, hope you didnt mind my fb message (im misdee's little sister if you didnt already know)
I hope your holding up ok, and dd is too. Neutropenia is an arse, only had it once with dh in very early stages, but thing he hated most was not seeing the girls :(
Have done the bone marrow reg when dh was dx and found to have no match, and have dragged a few friends over with me too.
Will they be able to do a match drive for your dd?? They did this for a boy that had AML when we were kids.
thinking of you all on this thread, and always say a little prayer for you all too xx

Dunno if they'll do a drive or not. Only found out on Sat. that she needs an anonymous donor.

Thats hard to get head round, but many success stories of stranger donation. DH will need stranger donation too, if he needs a BMT at any point, but his is complex because he has small red cells, and not sure if the extra 8th chormosome issue will be too (side effect of treatment). Stay strong, rant on here and look after yourself too.

Welcome expat! I know my own DD has had ALL not AML, but if you're wanting positive stories, we did have the most amazingly gorgeous little girl on the ward with my DD who had AML, they had real trouble getting her into remission before her transplant, which she had where you are (our centre doesn't do them). I believe it was a non-family umbilical cord donation in the end, since they're easier to match apparently, but it was a great success and she's doing wonderfully now. I'm really hoping they find your DD a match really soon too so she can get on with her life and doesn't need to spend too much time waiting.

My DD was neutropenic a lot and spent masses of time in isolation, so I really empathise. I hope she gets home soon. It's very hard to be imprisoned in a small box like that and the side effects of the first phases are very difficult. My DD needed a lot of pain relief through the intense phases too, and had a lot of gut trouble. As lisad said do feel free to rant here any time you like, or you're more than welcome to PM any time too.

Thinking of you.

Hi expat. I'm sorry to hear about your DD, and I hope that the amazing response from MN helps you to find a donor. I've asked why they say no to people who have sciatica. I've had it on and off for years, but desperately want to go on the register. I looked into it as soon as she was diagnosed because of all the children who we met, and because - let's face it - if her ALL returns, it might be something we have to do too.

You are in my thoughts. I hope you have plenty of support around you, especially when you are in hospital as it is such a draining experience.

We've been in lots this year with DD as she is frequently neutrapenic and infected with something. She had a bowel problem where she needed IV food and she was on lots and lots of morphine. It was rough so I really hope you are okay as it sounds like your DD is going through it at the moment .

DD was diagnosed a year tomorrow. It feels like yesterday. I suppose it always will.

Platelet rash, upset stomach and cramping today. No school again for DD.

Think I am kidding myself that she's going to manage to phase back in. She's managed 2 of 5 part days so far.

I can accept losing my job now whilst benefits can protect me. What the bugger am I going to do afterwards? I'm not someone who copes well with the unknown.

Sorry, I know I sound like a stuck record.

bad day today. aillidh is huge amounts of pain from distended belly. she's now on morphine pump. one surgeon has examined her and reviewed her xrays from this morning but can see no signs of perforation in the bowel, yet feels the head needs to look at her, just to be sure. he's in theatre just now so we'll see him later.

she's now on 3 ABs because of the problems with her gut, which are hopefully muscosity and inflammation from the chemo rather than performation.

haven't slept in ages.

Kinky, I know what you mean! Also have no one to help, and the nature of AML is that it means a lot of time in strict iso, so if one parent isn't able to take over (and DH can't because of our other children), then it falls to the other to do all the care.

I have lost nearly 2st.

I hope they see her soon, poor girl. It's horrible. I've done the opposite to you, I gained 3st as I comfort ate like a crazy woman. Do you have people to talk to about everything expat? I bottled it all up, and I'm a wreck. I wish I'd walked around punching walls or something now, to try and vent the frustration and worry. Instead I got depression and anxiety issues. I need to be less stiff-upper lip I think. It's hard when you aren't used to sharing. Try and vent if you can.

I'd like to go somewhere really isolated and scream.

I hope they do come soon. Is it gastroentorology or however you spell it? DD had many dealings with them. I suspect bowel complaints are really common as both a side effect of leukaemia and of the chemo. They thought DD had chrohn's originally because she had that many things going on. Then in March, when she had bowel infection, they thought she had it alongside the ALL. Thankfully, she didn't. It's funny that whenever you need to see anyone, they are always in theatre, and then you daren't move for hours in case you miss them.

Let me know how she gets on. I'll be thinking of you both.

Hi expat, sorry to hear about your dd. Please try and take care of yourself, you have to keep your strength up as well to look after your dd. Feel free to rant on here and be angry if you have to, we all understand. It is a very lonely situation to be in especially if your family is not near. We were very fortunate that my mum took my DS and he pretty much lived with her during DD's treatment, he was only a baby when DD was diagnosed and so didn't know any better.

Have you any neighbours or friends that could have your other children so your DH could give you a break?

Kinky, its a tough decision to make. Do you have a social worker at the hospital to help you out with benefits? Make sure that you are receiving everything that you are entitled to and see what grants is available from charities. If you have the energy, look at all your finances, bills, debts etc and see what you think. Is it possible for your school to give you two years out unpaid and hold your job? For me I was already off on maternity leave anyway and wasn't a huge drop and we have a very small mortgage and no loans or anything which helped. You can also try for ESA or carers allowance.

On another note there is a lovely charity called the Indee Rose trust which provides treasure boxes to children that are going through treatment. I only heard about them a few months ago through facebook. I think you just send them an email to refer your child.