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

I hope no one minds the dull thread names - quirky doesn't seem right and neither does numbering. I also think if you number them someone who might want to join will think "oh they're up to 3 and must know eachother really well"

I may be overthinking this

I think you're being really thoughtful - we want people to find us, and join us, if they need us. Hopefully they won't need us.

So, my son Isaac was diagnosed with wilms tumour a couple of weeks after his first birthday. He's 8 months into treatment, has had 1.7 kilos of tumour and nearly all his kidneys removed, and is as beautiful, magical and inspiring as ever.

Before isaac was ill, we used to go to a twins playgroup every week. It was a tight knit group. I just found out yesterday that one of the toddlers has just died of liver cancer.

My head is really spinning. I didn't know about the diagnosis - i stopped going as soon as i was diagnosed, having been every week for 9 months. he was on the same ward as I for long periods and treated at the same hospital. I'm not sure what i think i could have said or done, but it feels so wrong. And selfishly, so close to home too.

I am finding it all so hard right now. I just want to walk out of my life into a quiet clean room with no cancer.

Love to all. I hope we all have better days to come.

I realise that these threads can be incredibly sad and rather daunting to any newly diagnosed parent.

With that in mind, I would just like to put a more positive post near the start of this new thread. My Dd was diagnosed with Acute Lymphoblastic Lymphoma in October 2010 when she was 16 years old. She had 2 years and 3 months of chemotherapy but is now one year past the end of treatment, still having six weekly checks but remains well and is at university with her peers.

Thinking of everyone presently undergoing treatment. X

My 7yo nephew was diagnosed three weeks ago, has started treatment.

He was very poorly for 2 days around the chemo but has been amazing in between times. His hair started falling out at school, teacher was naturally very concerned and offered to call mum. His response "no, I knew it was going to happen". He is sooo excited about being fitted for a wig.

The rest of us are faring less well....

Thanks for starting this Twunk.

My thoughts are still very much with minmooch and hope you feel able to pop in every so often.

My ds1 was diagnosed with medullablastoma in Sept 2011 when he was 8.5. He had surgery in which his tumour was completely removed, in fact from that day every scan and test showed no evidence of disease. His treatment continued with 6 weeks of radiotherapy to his brain and spine, and almost a year of chemo. He was very 'well' throughout treatment - carried on going to school, no hospital admissions, and just a few blood and platelet transfusions.

He was all clear for about 8 months after treatment finished, then a routine scan in July 2013 showed 2 small tumours in his spine. So he's been back on chemo since August, still tolerating it really well and not really suffering any side effects. There was some shrinkage by October, but December's scan showed no change. Next scan is in March and who knows what it will show.

Right now ds1 is absolutely fine and you would never know he has cancer. He's now nearly 11.

Oh unbuckle what a shock for you, and what terrible bad luck for the group (despite what everyone thinks, childhood cancer is mercifully rare). I understand totally how you feel, every new diagnosis plunges like a knife .

Breakage that is so sweet about losing his hair. It's still very early days and you will all still be reeling. We are nearly 7 months down the line and out of the "heavy" treatment and I realise now what a blur those first few weeks were. Look after yourselves and your lovely nephew.

stinky I've been wondering how your DS has been doing. Pleased to hear he's not suffering side effects. I really hope the scan in March goes well.

freshorange thank you for the positive story. I'm so pleased DD is doing well! Alex is also doing extremely well. We live in the Netherlands so treatment is different - he had 2 MRD tests (one after a month, the other after 3) and both were negative. This means he is "standard risk" and thus on a far easier treatment schedule than 'normal'. His treatment is now all oral so his portacath comes out next week (a birthday present to me! )

Last week Alex started school. He just did 2 afternoons. He did really well and I sobbed my heart out got a couple of hours to myself.

Hey, my DS, Joseph, was diagnosed with stage 4, high risk neuroblastoma in October 2012. He finished treatment in early December but neuroblastoma has an 80% chance of relapse so I'm sticking around! (Thank you). He still has his Hickman line in (I'm not jealous Twunk, oh no!). But tomorrow marks a momentous day - we can relax his feeding restrictions. HE CAN DRINK TAP WATER!!!!

And today I had a letter from one of his doctors to say his last urine test came back normal for his HVA levels which means he's likely to still be in remission. Or, at least, he was 3 weeks ago [grim smile]. He's getting stronger and achieving more every day.

Sorry for the long absence, I have missed so much. Just realised it after seeing there is a new thread now. I only just heard about the sad news about minmooch's son, Will. I am so so so sorry for your loss min...may he rest in peace. Sending you much love.

Twunk, thanks for starting a new thread again. So happy for you that Alex is doing so well.

My DD just celebrated her 10th birthday last month. It is a huge achievement as last year I was not even sure if we would see this day. She was diagnosed with ALL leukaemia on 26th Dec 2009, underwent two years of chemo and was pronounced as cured. We celebrated and she was off treatment for just over a year when she was diagnosed with AML leukaemia in May 2013. She had a bone marrow transplant from a cord blood donor in September and so far is doing very well, her last bone marrow biopsy showed 100% donor cells and her blood type is changing into the donor's blood type. She has had her Hickman line removed, although she has insisted on keeping her chemoport in. Her hair is growing back. Her skin is almost done changing. She has started going to a special school for cancer kids a couple of times a week. I am a very bad parent and have started giving her tap water without even checking with her doctor if it is ok. So far she seems fine! I really couldn't ask for anything more.

Unbuckle, I am so with you there, I wish this cursed cancer never entered our lives. I have spent five years and two months battling it now. Time I can never get back. Although I suppose seeing our children alive and well is worth all the sacrifices that we have had to endure.

In the meantime I have been struggling with domestic issues over the last few weeks. Without going into too many tedious details, H has OW. I am also pregnant at the moment with DC2 after TTC for a couple of months.

Oh Shits that's amazing re the transplant!! Really amazing

5 years though - it's bloody forever.

I don't know how you feel about being pregnant, so I will hold back on congratulations for now. I'm so sorry to hear about your "D"H. Is he still with you at home? How is DD coping with all this?

Lots of love and hugs for now.

min I am so very, very sorry.

Hello everyone.
My DD was diagnosed with ALL in January. She turned three this week. So still in early stages. She's in the consolidation phase now, and we're waiting the results of her MRD test which was this week.
She's doing ok. But the change in her is heartbreaking. She's quiet and the other day she told me she 'felt sad'. I'm hoping this will get better when the steroids stop.
She's handling it all much better than I am. We've also got a 10 month old who is teething at the moment, so not sleeping much these days.... Still taking it one day at a time.

Hi, this is a thread I never wanted to join. DS2 was diagnosed with a tumour near his spine on Friday. It's most likely a neuroblastoma but further tests are needed this week to confirm. He's only 11 months and the tumour is fairly substantial. We are beyond devastated, terrified and sad. I have moments of feeling strong and positive and then moments when I can't breathe with fear and sadness. Trying to take one step at a time but then I get overwhelmed by it all. Thankfully he seems not to be in much pain and discomfort and he's still the same lively, happy baby he was on Thursday. I hate that this has invaded my baby and our lives.

So sorry you have to join us brave little solider... And that you have to wait for more tests too.
I only joined this thread a month or so ago but it's been a real help. Hope it can provide some comfort to you? Others will be along with better wisdom soon. But everyone has been in a very similar position to where you are know and can understand to some extent how you're feeling now. Big hugs xxx

Much love Brave.

And to you too lovely. It's so hard to watch them go through the things that they do.

Hi brave, sorry you have had to join us. Those early days are horrendous. (The others aren't amazing, tbh, but at least they become normal and understandable). I hope you're on an oncology ward or will be soon, rather than a general hospital, and that treatment will start quickly. My son was diagnosed at 12 months, and has had a lot of treatment and ops, but is still the same amazing baby. Much love

So sorry Brave I hope you get some answers after the tests and can move forward with a treatment plan.

How are things with you Kinky? How's dd?

Hello there Brave

I'm sorry too you've had to join this thread, but glad you found us.

The first few days and weeks are a massive shock and often pass in a bit of a blur. Trusting the life of your darling boy to other people, being scared, being overwhelmed - they're all normal.

My advice at this stage is to get some nice bedding and PJs for hospital and accept all the help that is offered - food, babysitting, washing, cleaning, shopping...everything. Don't be afraid to ask either.

Much much love to you xxxx

You are all amazing!

I read this with tears in my eyes and goosebumps down my back.

Sending all of you and And if you need it.

Support here is fabulous.

Hi Stinky, we are getting there. She'll be nearly a year off chemo in April and gradually she is getting more normal. She still carries a lot of weight because of the steroids, but she's finally started to walk home from school, so her fitness is getting a bit better. I've got a new job - I started in Jan. It is really chaotic but so much nicer. Last place put me under such pressure because of everything we were going through.

Anyway, how are you getting on?

Lovely to hear everything is going well Kinky x

Brave my DS has neuroblastoma too I hope, because of your DS' age that it will be straightforward to treat - it's not always the case but often neuroblastoma in babies is straightforward with excellent results. Very much hoping your DS is one of those x

Hello everyone

My son was diagnosed with ALL in January 2012 when he was 3 years old. The first year of treatment was hard, but the early days were definitely the worst. He has now been in maintenance for 17 months and is a very happy, healthy (if you know what I mean!) and NORMAL little boy! He started school last year and is doing really well, both socially (which I was very concerned about) and academically. He will continue to have treatment until April 2015 which is also when I anticipate myself having some sort of nervous breakdown! I really cannot stress enough that the terrifying feelings at the start do fade and you will manage to function and even be happy again. There is a lot of love and laughter in my house.

twunk this will sound super patronising although I mean it with the best of intentions, but look at how far you have come!! I remember when you were in the process of getting the diagnosis and now look at you, all wise and calm!

unbuckle I am so sorry to hear your news. I sometimes find that I am bumbling along in this new normal, privy to all sorts of horrors, and then every so often something happens and I am thrown by how shaken I am by it. We had something very sad happen just recently and I was surprised by just how badly it affected me (and it wasn't even anything to do with me). Do you have a CLIC nurse? Ours are wonderful at helping process this sort of thing.

freshorange thank you thank you for sharing your story! I am so pleased to read that your DD is doing so well. When you are in the thick of treatment it is easy to forget that there is a real life ahead of you all and countless people who have come through this xx

stinky I am pleased to read your son is coping well and I wish you all the best for the scan results this month x

breakage I am sorry that you have cause to join this thread. The children are all amazing and so resilient - they just get on with it all whilst us adults are put through the wringer! One of my friend's children is about 18 months off treatment now and he remembers nothing about it at all apart from the fun stuff! Even now I notice that my children only talk about exciting things that happen in hospital - they don't remember anything negative. I was also surprised late last year when I was crying in front of them (because I had a back injury) and they freaked out completely because 'we've never seen you cry before'!!

sillybillybob what a lovely update and hooray for tap water! These little things mean so much, don't they?

shits wow! what an amazing update about your lovely DD!! I am so pleased that it has all gone well for her. I am sorry to hear about your H and wish you so much love and best wishes with everything regarding that x

lovelychops we are exactly two years down the road from you. This bit is horrible, but you will get through it. If you ever want to pm me feel free, and if you want to look at my facebook (I have shared so many photos of treatment) just shout. I know in the early days it really helped me to be able to see children further down the line. I have everything crossed for the MRD results xx

Brave what a shock that must have been for you and I am so sorry that it has happened. Please come and talk to us as much as you need. I have also heard very positive things about neuroblastoma in babies so am hopeful for you that the test results this week are as good as can be

kinky I am really pleased to hear everything is settling down. I have often wondered how your DD is doing

ruprekt thank you - it is a lovely little gang on here. I have made some wonderful friends for life since my son was diagnosed. I call them the friends I wish I had never met!

Hi all.

My gorgeous just turned 5 year old was diagnosed with a stage 4 wilms tumour in June last year. He has had 6 weeks of pre op chemo which resolved the lung mets, surgery to remove the tumour and one kidney, radiotherapy and is all being well, 4 weeks off finishing six months of post operative chemo. Exciting and terrifying....

He's been hospitalised quite a bit with suspected infections but that aside has taken it all in his a stride (except the accessing of wiggly which gets more traumatic by the week!) and is enjoying school and generally the same things as most boys of his age. I am so so proud if him. He has handled it much better than me if the truth be known. I'm actually going to see a counsellor next week who specialises in CBT/mindfulness. I've no idea if it will help, it's not something I've ever done before, but I've got to try something to stop me tormenting myself by reliving it all and torturing myself with thoughts of relapse and what might happen in the future.

Talking of hospitals, we're in again. We practically have our own room here! He developed a temp sat - typically he's been absolutely fine since, but of course they have to follow the protocol so have started anti-bs etc, although he's not neutropenic so we might be allowed a home leave tomorrow.

bravelittlesoldier and lovelychops - I am so so sorry you have to join us. I think we all remember this stage clearly, it still upsets me now if I think back. A lovely mner said to me at the time that this is probably the worst bit and I think she is right. It does get just a bit easier once you know what you are dealing with and have a treatment plan in place. I hope you have supportive friends and family. We know how you feel and are here with you every step if the way. Great advice from Twunk btw.

unbuckle I'm so sorry to hear about the child in your toddler group . Of course it feels too close to home, I think we'd all feel the same. Hope I is doing okay though? When are you next at the Marsden?

Twunk how lovely that Alex has started school - it has done D the world of good and brought some much needed normality back into our lives (although CP is doing the rounds at school again so I'm keeping him off at the mo!) I hope it's the same for you and Alex. Is your other DS excited about having him at school?

breakage sorry to hear about your nephew. I hope he is still coping well, he sounds wonderful. I think generally us adults don't fare as well sadly. I know my sister is devastated because she loves him so much but also for me. How long is his treatment plan?

shits you have so much on your plate at the moment . I hope you have plenty of RL support but we're always here if you need to talk. Great to hear DD is doing so well

freshoranges lovely to hear DD is doing well and is back at university. Thank you for the reminder that things can turn out okay. I think we all need that, but especially important for those at the beginning of this journey as you said.

tabitha it's lovely to hear all is good with DS and the rest if the family. I love the bit about lots of love and laughter. You gave me hope in the early days when I couldn't imagine ever laughing again.

Hello to Trazzles, Stinky, mmmmsleep and anyone I've missed xx