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

minmooch such lovely words. I'm so very sorry to hear about your son, we are relative newcomers to the thread but you are right in what you say about the support from here and the beauty amongst the brutality. I hope you can enjoy the memories of that beauty and that it helps you through what must be unimaginably difficult times.

Min, thank you for dropping in and your lovely words. Have been thinking of you too. xx

Hello all

Lovely to hear from you min I think of you and Will often.

I'm in the UK this week. Had to go to a hospital last night as Alex developed a fever. It wasn't the usual hospital for this area - they were full so I ended up at another one. The care was ok but bloody hell it was a horrible place. Thankfully we were able to go home with oral antibiotics.

Welcome one sorry you've had to join us.

Love to all xx

big hugs for you minmooch

We're still waiting to hear about dd's treatment, hoping it won't be long now

I have just discovered this thread, I will have to go back and read it in full at another time. My beautiful baby boy (well, he is 20 months so not so much a baby any more) was diagnosed with Acute lymphoblastic leukaemia last week. It was such a bolt from the blue. A weekend of being a bit under the weather then wham, we had big blue bruises. Gp sent us straight to hospital and there he has remained for the last 12 days.
He is an identical twin so we have the additional worry that his brother may develop it too at some point in childhood, though he has been tested and is clear for now.
I'm swinging from being totally unaccepting that this is happening, to being convinced that nothing will work, which is ridiculously premature at this stage as it is one of the most treatable forms of childhood cancer. Ds is being very well cared for ad we are hoping his inpatient stay is coming to an end. As well as his twin we have a dd too who is 3, and all the trips to hospital have been very hard on both of them too.
So glad to have found support but so sad to be joining this thread and to see how many others are affected.

Hi eskarina it must be very tricky with 3 under 4. Mine were 22 months and 6 weeks when we started this journey. The 6 week one was nearly 1 when we were on chemo. We got great support from friends having the younger one whilst we went to hospital. Just ask people will desperate to help but often don't know how to. The oldest is about to start high school!!! Always look forward, it sounds weird but take loads of photos so when they get older it's easier for them to understand what happened to them. Xx

Hi Eskarina, I know what you mean, it's hard to balance your emotions. Dd is going into hospital tomorrow for some treatment and making sure the other dcs are looked after is like a military mission!

having a real wibble over the next couple of days, it's not going to be easy being in a hospital that's not our local where dd is well known

Eskarina I'm so sorry you are having to join us. I can't imagine how difficult the logistics are on top of everything else. I hope you have lots of real life support for you and your family.

Ninja is the treatment at RL? Ask to be introduced to the CHECT support worker if you haven't met her already, they are wonderful at answering questions and being generally supportive.

We went to the UK last week to celebrate a big birthday for my dad (70) and me (40) so naturally Alex chose then to fall ill. We ended up in hospital for one night then later on 2 nights. He's fine now, though still has a cough. I have a few more grey hairs.

Sorry Ninja missed you before - and Eskarina I'm sorry you both have had to join us.

Hi eskarina, sorry you have had to join us but glad you found us.

My son is a twin too - non identical though - and i have a large family with kids very close in age. The logistics were very tough but the hospitals were generally brilliant at accommodating siblings.

I hope you can get some reassurance that the cancer is not genetic.
Xxx

I duno why I am posting really but please offer me some perspective ... A close friend of mine has a son who is an absolute star he has been through so much in his little life and is almost 2 years clear of ALL. He has other health conditions also.

Yesterday he had an appointment with paediatric Dr who has referred him to hospital due to an abnormality with liver. Hospital want to see him next week to run tests. I realise that it's prob nothing put I do worry. Sorry ramble over.

Oh Missda it's very hard seeing any child you care for going through crap like this. I really hope it's something that can be treated with relative ease. ALL is such long treatment (especially for boys in the UK) and they bear it with such fortitude it's so very humbling.

Let us know how he gets on. How Is your friend doing?

Hi, I have just found this thread. My ds was diagnosed with rhabdomysarcoma a month ago. He is has just finished his second round of chemo and is doing well. The first chemo stopped all of his pain so something must be working. I'm Ok at the min but do have to consciously stop my mind from thinking too much. It's nice to find somewhere where people understand what we are going through x

Twunk... Yeah his Mum and Dad are doing OK really worried but ok. Cancer is such a bastard isn't it? Hows your LO OP?

Welcome Polly so sorry you have had to join here... How old is your DS?

Hi, my ds is 8. I've had a bad day today it's so hard watching life going on. I'm usually ok but today I've struggled. Hoping my strength comes back tom. It's nice to read others stories to know others know how i am feeling.

Hi all, I'm a long-standing (but not currently active) Mumsnetter, but I've recently been lurking on this thread. (My son was diagnosed with bilateral retinoblastoma nearly 4 years ago and I posted here for a bit but then tailed off ).

I'm just posting in case Onedimple and Ninjagoose are still reading - I wanted to say sorry that your children have been diagnosed with eye cancer (which sucks!), but please do PM me or post here if I can be of any help.

Onedimple:Hope your DD is doing well. DS had 6 cycles of IAM (3 in 2012 and 3 in 2013), so I'm happy to share our experiences if that would be useful!

Ninja: You probably don't remember this, but you gave me some brilliant advice about weaning babies with VI when DS was first diagnosed and I was panicking about this I am so, so sorry to hear about your DD3, especially as she's been through so much already. Again, I'm very happy to chat if that would be helpful. DS narrowly escaped EBRT following a relapse a couple of years ago but we did lots of reading about it in relation to eye cancers. We're still going for regular EUAs at the RLH, so happy to chat in person, should we happen to coincide on the ward!

MissMargot Hi, hope J is doing well!

Alex is recovering at home from a protracted bout of (thankfully fairly mild) pneumonia. Had my first bad experience of the hospital he goes to, they have otherwise been exemplary, as he developed yet another high fever last Tuesday night and was told not to come in "because he's probably not neutropenic" - thankfully was seeing his oncologist on Thursday anyway, she did extensive bloods and it showed a bacterial infection and his chest still didn't sound right!

He's had some heavy duty antibs and been off chemo but thankfully no hospital stay was needed. It was scary though.

I'm sorry you've had to join us polly22 - I learn such a lot on this thread and now I know what a rhabdomyosarcoma is. I hope the chemo is doing its work and pleased to hear your DS is doing well.

I've struggled a lot and it comes in waves. People tell me I cope so well; am so strong; am so positive but deep down I know it's changed me. I'm so much more fearful.

Welcome back Mackerella it's great to hear from those who've finished with all this.

Hi, Twunk! Unfortunately, we're not finished with all this yet - DS is still having EUAs (examinations under general anaesthetic) every 3-6 weeks and is likely to do so for the next year or two until he becomes stable. He had a relapse last autumn after 9 months of stability, so we're keeping our fingers crossed that this time that he'll finally stay stable.

Bilateral retinoblastoma is probably the childhood cancer that has the longest active treatment - at least, for some unlucky people: I do know others who have had first-line chemo and then not needed any further treatment. Unfortunately, DS is not one of them! Still, I can't complain too much as he's got out of it better than we thought he would when he was diagnosed and we were given a 75% chance that he would lose one or both eyes. He's registered blind as a result of the tumours in his eyes, and has had various other issues as a result (severe anxiety at times, speech and other developmental delays), but he's kept both eyes, and is still alive and currently well, and we're starting to see a light at the end of the tunnel.

Oh no! I didn't realise that. And I thought 2 to 3+ years for ALL was bad

Poor little sausage

at mackerella, of course I remember How's ds doing, has he started school now? We could already have been on the ward at the same time! We've found the RL really supportive so far, looks like you've still some way to go with them.

Twunk, how worrying, hopefully ds is back on track again?

dd had her radiotherapy plaque a couple of weeks ago. It was really hard on her, she didn't cope very well with it possibly more because of the premeds and anaesthetics, I'm not really sure. But at least that part is done for now! We're back to see if it's worked in a couple of weeks.

Hope it works ninja!

We're just back from the hospital - immunoglobulins are rather low so they are starting infusions every 3 weeks. That'll be fun for poor alex because he doesn't have a central line - he hates canulas and they can never find a vein. Other than that, infection is just about gone so that is a relief, and we are starting chemo again tonight.

how's ds doing Twunk? DD is the same with cannulas, she's wise to that whole magic cream lark and they don't always end up in her hands anyway, we've ended up having to go down the sedative route with her. I'm hoping as she get's older it'll get easier!

sending love

my niece is in the process of being diagnosed- biopsy results next week. I cant stop crying- but did not want to enter and leave the room anonymously as it were

I am sorry but I cant even read now as tears flooding my eyes

fucking hell, is there anything much worse than this?

sending massive love again

FromParis sorry I've had a busy week. No there's not much worse than diagnosis - I threw up when I had Alex's - but really things do calm down after that. I've seen so many people call it "the new normal" and 20 months down the line it really is, but even after a few weeks we settled into it. Then there are bumps and scares and low points and high points and all the other crap that comes with it. You learn to cope, sort of, though I cry much easier than I used to.

I hope the biopsy results are negative but if they're not everyone will deal with it. Personally I have seen the best of people since alex was diagnosed - kindness, understanding, and lots of love.

Let is know how it goes.

Ninja he was very very brave, which breaks my heart. Crying but stayed completely still. He told his speech therapist it was fun - mostly because he got to play on their Xbox for hours

Dear twunk

I am very ashamed that I barged in the thread as I did . This is serious stuff not 'chat'

Her tumor is not benign and not malignant - and they are whipping it out plus a spot I chemo

So compared to many - she is ok

In the same week my best friend got told she had secondary cancer though - bad week

I send love , strength and all my best wishes to you all - and again sorry for using thread to vent -