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 Brave. It took a week from admission to formal diagnosis for isaac but that was dependent on biopsy, and could only have been nb or wilms tumour, realistically. I guess they might be waiting for planned surgery rather than going on the emergency list? I find any delay to chemo causes me a lot of anxiety but the drs tend to be relaxed so i'd be v hopeful the delay won't change the outcome.

I am not a sahm- i am an accountant working for a big 4 firm, so far from it! Pm me if you'd like, but broadly I would expect you will need someone at home - even if the chemo has few side effects you might well have a hickman line and ng tube to deal with and I haven't found a nanny willing to deal with those alone (ie without a parent in the house).

If you work, have you checked if you're covered by a work critical illness policy?

Hi again soldier I would take comfort from the fact that they aren't rushing to start treatment. We started straightaway as there was a tumour pressing on Joe's spine and they were frightened of long-term damage. They also knew straight away it was stage 4 NB as he had 2 black eyes - a fairly classic symptom. So to me, 3 weeks sounds like: there are viable alternatives and he's not very sick. It sounds like a good thing.

I had a lot of time off work - I was a fortnight away from the end of my maternity leave with DD when Joe was diagnosed. My work have been outstanding but I don't know many other stage 4 high risk mums who have kept their jobs whether through choice or necessity. My maternity leave was extended so I was off for the full year instead of 9 months. Then I had a tonne of holiday accrued which took me up to broadly May and about halfway through his treatment. After that the treatment was less intense and I've gone back for 12 hours a week. I worked 2 weeks on, 2 off for the remainder of his treatment, with unpaid leave when I wasn't in, supplemented with DLA and Carers Allowance in the weeks I qualify. I'm still on 12 hours a week even 3 months after treatment finished because Joe can't yet cope with a full day at nursery but he starts school in September so I'm hoping to be doing my 3 full days per week again then.

It can work but it depends on the diagnosis. If you're stage 1-3 and don't have MYC-N amplification then treatment is comparatively short and more amenable to holding down a job. If you're stage 4 or MYC-N amplified then it's harder but not impossible.

What you may not know yet is when your child has chemo their ability to fight off infection is compromised and they can become "neutropenic" meaning their body can't fight an infection by itself. If the child then gets a fever it's straight on to intravenous antibiotics for several days. You basically have to be able to drop everything at any given moment if they post a fever as they will often be kept in even when they are not neutropenic, on the off chance that they have a bacterial infection. And there are always things that go awry with the timings of treatment too so you can't count on it all going to schedule.

Sorry, I don't mean to sound all doom and gloom! Please feel free to PM me if you have any questions about Nb. I'm far from an expert but have seen plenty of it in the last 18 months. I hope you are bearing up ok. Diagnosis is one of the hardest times in your life. You will get used to the shock and you will fall in to a routine.

J was discharged again yesterday btw everyone after a 10 hour admission so the day drs could check him out too as no one could tell why he had a fever. They have, however, referred him to have his line out now - RESULT!!!!!!! Just hope it all goes to plan - and soon...

Oh yes, and I remember his Consultant and Social Worker both told me at the outset that I'd have to suspend work during most of treatment as it's nigh on impossible to have 2 adults working full(ish) time in the house and supporting a child through the treatment. Take it as it comes. Don't make any big decisions yet. Wait until you know what you're facing x

brave I don't actually think there is anything wrong with denial until you have more answers. You sound like you are doing amazingly in incredibly difficult circumstances.

In answer to your questions, D went to the doctors (and then hospital) on the Monday, had a biopsy 9 days and started chemo 5 days after that. As the others have said, I would be reassured that they are not rushing into anything.

I was two days away from starting a new job when D was diagnosed. Aside from surgery and radiotherapy, the rest of his treatment has been weekly as an out patient so in theory sounds do-able (I work a four day week). However there are endless other appointments. And the biggest issue as silly points out is hospital stays as soon as they spike a temp. D was hospitalised for two weeks in the beginning, then had a really good run for the next few months, but from December has been in and out of hospital constantly. The frustrating thing is that he has been fine in himself but they have to assume bacterial/line infection and treat accordingly until proved otherwise, so each temperature normally means at least a three night stay. I went back to work in jan (after 6 months off) and it's been okay, but only because we have a lot of support from my family and I work very locally.

I hope you have lots of support too and have everything crossed for the results in the coming weeks x

Hi unbuckle. Yes D had chemo, just vincristine. He has a week off this week and then just two more weeks and he's done. Amazing and terrifying. I know it feels like a lifetime when you're in the middle if it but now we're coming to the end it feels like it's gone quite quickly. I hope I still doing okay and not suffering too much with side effects etc.

We've had a lovely weekend, visiting friends and a trip to the zoo today, just normal stuff. D is in such good spirits, it gave me a tantalising glimpse of how life used to be/could be again, if only, please god this is the end of it all.

Where is my reply? I wrote a whole load earlier.

I am not working at the moment - was at home anyway until the boys were in school. I start my own business making children's clothes and the odd bit of design (prints etc) so I just stopped when the diagnosis came. I am going to start up again but I have some ideas…I need a plan.

With ALL results tend to be pretty quick because they can diagnose fairly well from the blood test (I knew from the beginning it was B-cell ALL, though not all types are so easily identifiable). It takes a bit longer for genetic tests to come back (there are certain chromosome abnormalities that offer different prognoses).

Just wanted to say, and I know we've been on her other thread, that I am very much thinking of Min today. I wish her very much love.

Hi, my daughter's best friend has just been diagnosed with Non Hodgkin's lymphoma, and he starts chemo this week. I was wondering if anyone could give me any general info on what the next few weeks/months will look like- particularly in terms of being allowed visitors/ out for visits. Also, how can best support his parents? Are there any good resources for helping siblings/ friends - they are both autistic and I'm not sure my daughter really understands

Thankyou x

Hi parsnip. Sorry to hear of your daughter's friend. I'm not an expert on lymphoma, at all, although the first child with cancer other than mine i ever met had lymphoma. He was facing a v prolonged inpatient stay as the first stage of treatment but I don't think visitors were restricted. It's likely to depend on hospital policy ( our local doesn't allow visitors under 12) as well as her friend's condition.

When Isaac was first diagnosed we were given a lot of info from clic sargeant and my older children found a book called 'my brother has cancer' helpful and still refer back to it.

With the parents - depends how busy the family is and whether they're in hospital 100%, but some ideas - mow the lawn, pick up siblings from school, bring edible hot savoury food to hospital, carry on talking to the family and keeping them part of your everyday life.

Hi parsnip I am sorry to hear about your daughter's friend. Unbuckle has given some really good advice and I can also really recommend the CLIC Sargent info books. I think you can access them through their website, or at the very least order some copies. My biggest tip for you is don't be a stranger. I am still smarting at the loss of some supposedly very good friends who just abandoned us when the going got rough. Now it is calmer they are keen to rekindle the friendship and can't understand why I am not interested!

With regards to work, I was working in a very full time job with a fair bit of travelling about when DS was diagnosed. Because he is having a total treatment time of 3 years and 3 months I made the decision to leave work altogether. It was definitely the right thing for me to do as we had a hell of a lot of inpatient stays with febrile neutropenia during the first year and even now I would be a pretty naff employee. I wouldn't be able to do that job part time so that is a no go, and any other job I would need at a minimum one week out of every four off work, plus would have to whizz to hospital with him at the drop of a hat. I wouldn't be at all reliable and it would create a lot of extra unnecessary stress for us. DS is currently very well and started school in September and I have to confess to feeling pretty bored at home without a job or children to look after! I started studying with Open University when he was first diagnosed so do some of that and some volunteer work at their school to keep me ticking over. I am planning a complete career change when he has finished treatment - I am desperately trying to scrape some positives out of this situation! I did consider another baby, but that is a step too far for me!

Here you go parsnip

www.clicsargent.org.uk/sites/files/clicsargent/field/field_document/Tom-has-lymphoma-oct2013.pdf

Arghh!

www.clicsargent.org.uk/sites/files/clicsargent/field/field_document/Tom-has-lymphoma-oct2013.pdf

Yy to food. Even if you drop it round to their house. On days when DH took over from me at hospital, so is been there for over 36 hours, it was bliss to come home to a meal someone had left on the doorstep.

Don't be offended if you have radio silence. I have lost a lot of closeness with a lot of friends because there was an expectation that I'd call back quickly and spend hours discussing stuff. I didn't want to. On either count. Offer yourself for whatever she needs if you can - a food shop or childcare are also helpful. And also continuing play dates, being aware of the likelihood of short notice cancellations.

It's shit. But you will all find a new normal going forwards.

soldier do you have any more news? You're in my thoughts. As are you min x

Agreed re radio silence. Time in hospital is more exhausting than you can possibly imagine - the noise, the terrible bed, having a child who can wake screaming, the early start, the mind-numbing tedium... For most of the first six months I could barely speak coherently.

If you do send a text, keep it open-ended - try not to ask questions as it demands answers. So rather than "how are you feeling today?" say, "I've been thinking of you and I hope you are well" (or whatever). It's actually quite hard to keep up with demands for information (however kindly meant).

And y y y y y y y to food! To start with you can't eat but eventually all you want is some home cooked food.

I had people turn up at the hospital (the checked first) with lunch, supper AND breakfast! That's especially good when it's not a planned visit and you might have left home in the middle of the night to go to hospital

Thanks for all your brilliant help. He is the youngest child ( the others are early 20s so able to fend for themselves). I live much closer to the hospital than them so was thinking of an open invitation, or cooking something for them to puck up on the wAy home ( even if they don't want to speak) might help. His first chemo is tomorrow, will there be a limit on visiting after this ( for infection/ recovery ). My dd wants to get him a build a bear tonight and I'm wondering whether we she get it to him tonight.

Again, thankyou so much for taking the time to answer x

parsnip it depends on the age of the children , the hospital' policy and the treatment.

My DS was fine to have visitors when he was on initial chemo (since then they've excluded under 5s). The only time he couldn't was when he was in isolation either because he had a contagious bug (usually something involving diarrhoea) or when his blood counts were so low he was too vulnerable to infection - and he usually had a bug at that time anyway! That happened for us usually day 7 after starting a round of chemo so you should be fine at the start. It takes a while for the counts to drop.

Prepare your daughter though that he could be fine but equally might be lethargic, sick, in discomfort and not really wanting to play. Different kids cope with it all differently. I hope it goes well for him.

Hi everyone. Firstly I must say that reading this thread has left me humbled and thankful and has me with tears rolling down my face. It is a wonderful source of support.

I am actually posting for some advice as my 4 year old sons best friend has just been diagnosed with cancer. I do not know an awful lot yet about his diagnosis yet except for that it is in his spine. I am utterly devastated, my heart just aches and I can't begin to imagine how his mum must be feeling.

It was actually their teacher that told me in private as I had not heard anything myself for a few days. I know my sons friends Mum will not mind that their teacher has told me as I have been passing messages to school for her and school have been letting me know any news too. My sons friend has had problems for a few months which have now resulted in this devastating diagnosis.

I am really posting to ask if there is anything that I can do or say to help out this little boys family. I know his mum reasonably well as our sons have such a close friendship, we talk every day at school, and on the school run but we never meet up outside of school - except for when we have visited her poorly son at home. She has been keeping me up to date with text messages but as she has not actually told me about the cancer herself I am stuck as to wether or not I should send her a note or a text to say that I know and that I am here for her.

If anyone can spare the time to offer me some advice then I would be truly grateful as you are all dealing with your own circumstances X

Hi madness. I generally don't tell people about isaac's diagnosis unless pushed - not because it upsets me, but because experience tells me it will upset the other person, and then i have to comfort them... So, perhaps it might if you let the mum know you know - or ask her outright what the illness is if she might not like the idea that the teacher has told others.

The most useful thing is probably to stay in their lives, and to offer specific help, eg, can i pick up x for you on tuesday', rather than general 'if there's anything you need, just ask'. I have a lovely friend who does my ironing every time she comes round, she just gets out the ironing board without mentioning it! Little things, but having a child in treatment is so intense, they all help.

I agree - be specific. A friend said "I can take your DS1 every Wednesday after school" (Wednesday is a half day) so I never had to worry about that and he loves going there.

Other people arranged a rota of food! I got loads to freeze. (Tip - if people freeze into Tupperware remove it from there and put in freezer bags - I now have the world's largest Tupperware mountain and no idea who it belongs to!)

A lovely friend got some new PJs for Alex as you generally need a pair a day in hospital.

I hated telling people too - I ended up wishing people would gossip MORE so I didn't have to tell them! I'd just say the teacher told you in confidence because you asked.

Thank you very much for your suggestions.

I have dropped a note through their door to explain that I know how poorly he is. I have offered my help with their other son and a few other things. I have told his Mum I am here if she needs a shoulder to cry on or to lend an ear if she needs to talk - my Mum is just coming to the end of treatment for breast cancer so although it is completely different I have a slight idea of the journey they have ahead of them.

I like the sound of new PJ's for him so I will put together a little bag of things for him with a picture from my son and something like colouring books and pencils.

Thank you again for your suggestions. I hope everything ends well for your children X

You sound like a lovely friend Houseofmadness - let us know how they're getting on.

Well Alex has been to school three times this week! Next week we're going to try for 5. Rather sweetly they're getting him a sofa so he can go and chill if he needs to, and a little bicycle as the ones in the playground are to hard for him to ride (and he does love a bicycle). I think that's a splendid idea on how to use the extra funding they have for him - plus he can use them next year too (when the funding might not be there).

Hugs to all. Hope no-one is languishing in hospital?

Thank you Twunk. It is good to talk on here as despite me not being family I feel close to this little boy as I have known him since he was 2. My son and him have been firm best friends since not long after. They have a special friendship which you can tell is going to last a lifetime.

I was so pleased to get a text from his Mum today. She had got my letter and my sons friend his bag of goodies. He has had his first round of chemo already which really suprised me as he was only diagnosed within this last week. It made him poorly but he is a bit brighter today and she said he is her superhero as he is being so brave. I just wish I could ask her how bad he actually is but it's not a question I can ask.

The gossip has started at school now as people know he has cancer (I hate that word I think I will have to find another word to use in its place). Personally I am a bit relieved as this week I have had to lie all week as people have become increasingly aware of how seriously ill he is. I feel for his brother though as I'm not sure if he is fully aware of what is happening and he is only 8.

It sounds wonderful what the school have done for your son. Our 2 are only in nursery but it is part of the school which hopefully they will start at in September - we find out in April. I hope that our school support him like that X

www.takethemameal.com

Hi sorry I've been radio silent. Hectic over here with daily proton therapy under GA plus chemo fun and side effects

Hi to new people to the thread and sorry you've had to join us.
Our 2 year old has rhabdomyosarcoma of the skull. We're currently in usa having proton but are based in Surrey in UK. We have a baby as well who keeps us on our toes ;-)

Just to add for those looking for ideas for supporting others with children with cancer have you seen the website at the top. On phone and it won't paste anywhere but post start! It's a usa site but you can change to uk address. It's a great way of coordinating well meaning meal drops so everyone doesn't bring the same thing and people are all aware of allergies/beat time to drop off/contact.
If supporting family if they can't afford an ipad/tablet and you can have a whip round I know ours has come in v v handy. Get one with plenty of memory to download films/iplayer programmes for those long hospital stays.
Take fresh fruit/nice cereals /fruit juice for parents. But a statement like "I'm going to the shops on the way to visit and I'd like to bring you xyz, is that ok or is there something else you need" is useful in case they've already got 5 punnets of strawberries. Usually hospital food is dire and lacking in fruit and veg. It doesn't take long to start craving good food.

Some have parents freezer. Icelollies are good for chemotherapy sore mouth.

And yes yes to supportive texts that don't require an answer as you can get overwhelmed with demands for info. Ds woken up so bye for now x

I am totally in awe of you all. A little boy in DD1's class has leukaemia and know parents fairly well and always felt for them. Then in November at 3 weeks DD2 got bronchiolitis and was on ventilator in intensive care for a week after a terrifying emergency journey from another hospital. We had two terrifying weeks in hospital and couple of time we thought we would loose DD2. Since then it's made me realise I never really understood how terrifying having such an ill child is.
I am thinking of you all and wishing the best for you all, just wish a wand could be waved for you all. I hope all your children become well and I and no one else has to join this thread.

Hi all just joking this thread. My DD who is now 2.5 was diagnosed with ALL in May 2013. Long story but we were abroad doing some voluntary work in Africa when she became ill, had a medical evacuation and got diagnosed.
She was initally low risk but 1st MRD came back risk and now she is classed as intermediate risk - whatever that means! In my eyes any risk is a risk.
She has just finished her intensive phase and is starting maintenance. She is so much better but still have off days like today ( lying on sofa watching peppa pig as she is on steroids)
She has an NG tube in as she has gone off eating and we are just waiting for that to kick back in so we can take it out.
Glad to find this group