Children with Cancer

[Twunk]

The thread you neither want to join, nor leave.

We send our love to Minmooch whose son Will sadly died this week. Min, we hope you feel able to contribute to this or future threads when you feel able.

My son Alex, 4, was diagnosed with Acute Lymphoblastic Leukaemia on 26 July last year. I don't think anything can describe that moment when your world falls apart. You think of suffering, pain, and the very real possibility you may lose your child. Mumsnet has been a wonderful source of support and I have "met" some lovely people through these threads.

If you are in the same situation as us, or wish to show support please do join us. Sometimes people have questions on how to support a family who have just received a diagnosis - we are very happy to help.

Much love to all xxx

Hi everyone,

Although my Dd is now twelve months post treatment, I come back very often to see how you are all going.

Lovely what you wrote really struck a chord with me. I was invited to attend a coming off treatment day at the Royal Marsden, and as we went around the room to tell our story, everyone burst into tears. The whole thing is so traumatic for us, the parents, to see our children go through. I think that most people seemed to just focus on getting through the treatment. We hardly socialised at all but withdrew from everything. Now it is over we have reentered the outside world, but everyone in that room was damaged and traumatised by what they had been through, even when their children had done well.

Some had regrets about time taken for diagnosis, others about the way their child was treated at school during treatment. It seemed to me like a form of post traumatic shock. We the parents shoulder all the worries and much of the burden of keeping everything as normal and happy as we can for our child, while going through massive trauma ourselves.

You are all doing wonderfully well for your children. I think of you often and sends hugs to all.
Keep strong xx

What a lovely post Fresh

Yy, lovely post fresh.

I has just started to say Mummy. He has been saying daddy for months. I really never thought i'd hear him say it - it is wonderful.

Hope everyone had a decent half term without too much rain!

Xx

Thanks Fresh for posting - I do so agree. I wrote an article for a club magazine recently and just the memory of the Doctor saying,

"I'm sorry Mrs Twunk, but when I gave you the 'all clear' I did not know the lab had sent the blood for further testing, and it is leukaemia"

had me in floods. I thought I was 'over' it but it would appear you never get over that.

Oh Unbuckle that's just fab!

I'm so glad I is continuing to cope so well - he's been amazing throughout. And how wonderful to hear him call you mummy . Did he manage to avoid the CP? D was tested last Fri due to several children in his class having it - fortunately he still had immunity because the following day my 2 year old DD came out in it to!

Lovely post Freshorange. In 2 weeks it will be a year since the awful day when our world fell apart. I can't help but relive it and no I don't think you ever really get over it - big hugs twunk

We're trundling along quietly here. D is doing really well and to look at him you'd have no idea what he's been through. His dad moved out about a month ago and fortunately he seems to be handling it very well, taking it all in his stride just as he did the treatment.

I'm just not quite sure how to 'be' at the moment if that makes sense. Everyone keeps telling me I must be so relieved but it feels far to early for any relief. So I'm trying very hard to live day to day and not think about the next scan....and the one after that... Fortunately 2 very demanding DC means not too much time to dwell!

Hope everyone else is doing okay?

Oh no, nocake, you've been afflicted by the pox too. Isaac still hasn't got it- fingers crossed he won't. It has such a long incubation period though i will be paranoid for weeks about it.

It's great ds has coped so well with everything - you must have found it all incredibly hard though, plus being on your own now too. I guess that's often a good thing though in the end.

A and I received woolly hugs through the post today. They are beautiful. It's amazing to thing there are people out there thinking of us and rooting for I's recovery.

Xxx

Oh unbuckle I saw them on the FB page and thought they were very cute indeed!

I cried buckets when Alex got his.

Builders are nearly finished! But then we have painting and flooring to do before they come back to fit the kitchen (which we still have to order!).

Nocake I think we all suffer from the shock. We're coming up to a year since Alex first fell ill (though wasn't diagnosed for 7 weeks) and I'm very emotional about it all.

Can't believe it's a year though.

DS1 is having the first of his checks today regarding a speech and language issue. It's been something I've been worried about for years (and he's only 6!). You'd think the past year would make me relax about this sort of thing but I'm not relaxed in the slightest!

It's one year today that Alex had his first fever and complained his arm was hurting . I knew there was something very wrong as I took him to the doctor for the first time since he was 6 months old. Mothers' instinct eh?

((Twunk))

We are 11 months into I's treatment - 11 weeks to go. It is beginning to feel like there's an end in sight.

Hope the quietness of the thread is good news!

Hugs to all

Wow Unbuckle, 11 weeks sounds amazing-nearly single figures. We're back in with a line infection and then he had an allergic reaction to a transfusion. Stuck in the transplant unit as only bed available and rapidly losing my mind...don't know how I'm going to cope with this place during the next phase!

Totally agree with being traumatised, when I think of those early days of diagnosis I feel sick.Now I mostly feel tired, sad, guilty and occasionally very angry . If one more person tells me that it's good A is so young because he won't remember I will scream! Right now, he feels wretched and I can't make it better.

Hope the rest of you are enjoying the sunshine and that your builders are nearly finished Twunk! Thinking of you all with upsetting anniversaries, x

Please help.

My darling niece was seen by an opthamologist this week after she developed a squint. He was concerned about an area of whitening at the back of the eye which could indicate increased pressure, and a brain tumour is one possible cause.

She is to have a CT scan first thing tomorrow morning, and they should prepare themselves to be admitted and operated over the weekend, potentially.

Please could you give me some advice about what to pack? I know there is nothing anyone can say at this stage, but I am sure I have read helpful threads before full of good advice about how to survive a hospitalisation like this. Hopefully it will be nothing, but I just want to do some practical research,so that I can at least tell them something useful from those who know.

Thank you.

Hi, didn't want to ignore you. I'm an eye specialist. There could be lots of reasons for this.

It could be quite simply related to the squint and in all these cases a scan is normal procedure. Really hope that's the case for your neice.

Thanks Helensburgh. They are overwhelmed at the moment, understandably, and we can only hope that the doctor was being overly pessimistic. It is certainly good to know that a scan is absolutely routine in these cases. If the scan tomorrow is normal, she will have an MRI under GA later in the week to look for other causes.

J can't imagine the horror they must be feeling. My heart really goes out to all of you for whom this is devastatingly familiar.

Hi oxcat
Sorry to hear about your niece. Fingers crossed there is a benign reason for it - but it's a very scary time.

In my hospital bag, which is always packed, as well as spare clothes/nappies/wipes for I and normal overnight stuff for me i have slippers (which i hate, but hospitals are hot), moisturiser (again, hot), antibac gel. I sometimes take cleaning wipes and washing tablets. - you can get vomited on a lot post surgery. Also recommend a ipad, many people take a duvet, and i take ground coffee and a filter. Aside from the fear, the boredom, discomfort, lack of privacy and terrible food are what gets to me. So I try and take things to mitigate those.

Thinking of your family

My essentials, other than the obvious

Phone/iPad/kindle/chargers
My own bedding, including pillows
Food (easy to eat and high calorie if I'm unlikely to want to eat)and drink
Agree re slippers or mules
Wipes
Generally I take enough clothes for 2 days and DH comes and swaps over - taking some back for washing
Alex was/is always stuck in the room, so I just take pyjamas for him.

Everything crossed for your niece xxxx

Oh Brave it sounds tedious! On long stays I just tried to switch off mentally and kind of "plod on". I have to admit when we were in an isolation room (also for no space) I become quite depressed. It's very...well isolating! (((((())))))

11 weeks unbuckle! - getting there xxx

Really sorry to hear about the worry about your niece, oxcat. I hope things are going well and you are getting better news. Are you close enough to the hospital to visit regularly? You would not believe the difference it could make if someone could pop down a couple of times a week to sit with your niece and read her a story whilst her parents get a chance for a cup of tea together and a few minutes to cry and give each other a hug. Those moments are shockingly precious and rare in hospital with an ill child. Also if a course of chemotherapy is to start, if someone could swap out a bag of books and toys every once in a while it would make life more tolerable for the little one. A lot of chemo time is spent in isolation in a small space, hospital play staff and resources are often stretched thin and located in a communal play room which may be out of bounds depending on blood counts and there is always a worry about germs with shared toys, particularly if the child is young enough to put things in their mouth. What age is she? Tins of cold coffee were my favourite thing to always have lots of, and cereal bars. There is usually a kitchen on the ward the staff can access for if the child needs something, but it is amazing how long you can go sometimes without an opportunity for food or drink and you are not entitled to anything as a parent.

Thank you so, so much for all these messages and advice.

So far, no news really, but what has happened suggests they fear the worst: she was admitted this morning to her local hospital, after a few blood tests, examinations etc etc, and is currently awaiting an ambulance transfer direct to the oncology ward at GOSH. They have decided to bypass the CT and go straight for an MRI under GA this afternoon, and then potentially surgery this evening or tomorrow.

All happening so quickly.

Unfortunately I won't be able to do much practically to help - I am currently pretty poorly in hospital myself. I am writing a list of things from your suggestions though, and my husband will go shopping tomorrow and hopefully get the train to London on Monday to deliver a 'survival pack'.

Ugh.

P.s. she is three.

Button up pjs - ds couldn't bear to have clothes pulled over his head after his brain surgery.

Has she had the MRI scan yet?

MRI scan scheduled for 8am tomorrow - so at least she won't have long to fast.

I had thought to buy her some vests and t-shirts in a larger size, but you are right about button-up pjs. I'll look online.

I don't imagine you can get t-shirts with poppers at the age of 3, can you?

Thinking of you and your family now. This really is the worst part; once a treatment plan is in place you can breathe a little bit easier.

Hello - my DS2 who is 4 has pancreatic cancer. He had an operation in January to remove the tumor whilst it had complications (pancreatic fissure and feeding via a picc line for 6 weeks) was mostly successful. We have an MRI next week to find out if the cancer has spread. He has other medical issues as well (brain surgery last September). All this medical attention is exhausting for him (and me). However, in spite of everything he is remarkably healthy and happy. I just wanted to say hi.