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

Oh brave I'm so sorry to hear it's high risk, you must be in quite a maelstrom of emotions right now.

It's just one step at a time (((((()))))) - a total cliché but it's true. Every day that you get through is one day you don't have to do again.

My advice is when (and if) you get a chance in hospital - go for a walk outside.

My other bit of advice is to ask other people to take over the rest of your life - bring food, do washing, clean your house. If someone says "Is there anything I can do?" Say "yes! Bring me a healthy lunch and some fresh fruit" (or whatever).

Big big hugs xxxxx

Hello Min lovely of you to "pop by" . Been thinking of you a lot.

Thanks Twunk, I am feeling so 'stuck" right now and can't shake it off. Know both the boys need us to be strong but just want to hide under the covers. Hate how pessimistic I feel. Just terrified that this horrible treatment won't work and we'll put him through this for nothing. My little brother died suddenly a few years ago and I couldn't bear to feel that raw grief again.

I am so sorry for such negative posts when you all sound so positive and strong, and are dealing with so much too.

I mostly post when I feel positive brave - when I feel down (often) I look for distraction. But in the early days it was very very helpful to let it out online; it gave me somewhere to vent. It's fine to feel whatever you are feeling and all sounds completely normal. It's a scary world you've been thrown into, full of uncertainty and full of challenges. You need somewhere safe you can talk xx

Oh Brave, I'm so sorry to hear about your little brother . And you have absolutely no need to apologise. We all have down days believe me, and it's still very early day for you all. I remember this stage vividly and I wouldn't wish it on my worst enemy. I wish I could take it all away for you.

Trazzles and Twunk are right about taking it one stage at a time. Don't even think about the months ahead, just concentrate on the next stage and getting through that.

It is utterly, utterly shit and it's so very unfair, but somehow you will get through this. You will find strength you never knew you had. And we are here every step of the way. Please don't ever think you have to censor what you write on here, it's on the really bad days we need each other most.

Much love to you all. I'm in Surrey btw - if you're near and I can help in anyway please shout xx

Hi Min, lovely to "see you". You, Will and your other DS are in my thoughts everyday. How is he coping btw. Gentle hugs xx

I meant to also say that I think we put a lot of pressure on ourselves to be positive 100% of the time and it's just not possible. You've had a terrible shock, you must be reeling at the moment, its natural that you are terrified and thinking the worse. It doesn't mean you're giving up your DS and however bad or negative you feel doesnt have any bearing on the outcome how so don't beat yourself up x

hello all. I've name changed but regulars will know me from this...our 2yo ds has rhabdomyosarcoma. having chemo at the moment. diagnosed in November.

hello to trazzle- great news that the line is out and glad you enjoyed Disney!

lovely sorry you're back in. I hope dd gets better soon..we spent most of our first 4 months in hospital with infections (often with nocake ;-) ) . it's rubbish!
unbuckle hope I is ok at the moment.
min- hi. I think of you and will often. I hope you and your ds are coping..sending hugs xx

brave- sorry you've had cause to join us. cancer is horrid and unfair. we have a friend of the family who had high risk neuroblastoma at 3. she is coming to look after our children soon...aged 19! take heart that statistics are just that and your dd is an individual. my ds has a poor prognosis and on down days I melt into tears at the thought of him not being around. like you I've lost other family members too young. I choose to deploy a bit of head in the sand tactic where necessary as I refuse to believe he won't make it and dwelling on the bad outcomes doesn't help me. sending hugs.

Once again, thanks so much for all your kindness and advice. I'm not in the UK Nocake, but thank you for your lovely offer. I'm so sorry all of you have been dealing with this horribleness. Thenew, so sorry to hear about your DS and agree that head in the sand sounds like a good strategy. I am drinking up stories like that of your family friend.

Can I ask a question that may be divisive? The fundraising for treatment abroad that so many people do (I've especially noticed with neuroblastoma). Is that usually in cases of relapse or is it due to lack of faith in the treatments available?

I can answer that one brave...we did it! ds had proton therapy which is funded by the nhs and children are sent to the USA. what isn't funded is costs of taking sibling/larger accommodation needed for family/ living expenses there or expenses back at home when many are on unpaid leave from work. those costs can make it impossible to go for some families. the list of those funded by the nhs is small and so some children don't fall into the group funded by the nhs for proton (eg neuroblastoma from what I've seen) so parents may try to get the treatment themselves as it poses fewer long term side effects than conventional radiotherapy. but there may be a reason why conventional radiotherapy is just as good (eg if whole of pelvis is to be zapped then no difference). the uk gets proton therapy in 2018 so families won't have to go abroad. there will always be instances where the best place for treatment isn't at home. st judes in memphis treat for free for a range of cancers within their trials but you'd still have to get there and fund living. where are you in the world?

Re: travel abroad for neuroblastoma treatment abroad, we chose not to fundraiser but from those I've spoken to that have...

Mostly it's for the potential for relapse treatment. I am aware of one family that had the antibody treatment in the USA. The families I'm closest to who have fundraised are doing it so there are more options available on relapse.

Broadly the treatment for high risk neuroblastoma is the same in, say, the UK and the US. There's one hospital in the US (Sloan) which does it completely differently with no high dose and much longer antibody treatment but they don't publish their results so it's hard to compare outcomes.

There are 2 relapse trials in the UK now - Beacon and Ludo - as well as some other chemo.

My friends who are fundraising, one has said to me in the past that they felt they were taken advantage of by the charity and wished they had never started it, the other has made it as clear as possible they may never use the money for treatment and will decide what's best if the time comes.

I hope that helps a little.

Absolutely do not feel you need to censor yourself on here. We have all been through the stage you are at with the shock and the sheer terror of it all. I'm not naturally positive, I'm very much a glass-half-empty person. I often find myself posting when there's something new for me to panic about: a headache or a sore leg or an infection or something. I wish I could promise You it will be ok. And definitely get friends to stock your freezer for you.

We're in Ireland thenew, so not far away . He's being treated in a specialist cancer centre in the national paediatric hospital. DH asked the consultant about travelling for treatment and he was very open but felt that the treatment on offer was the best there is. Finding it hard to wade through articles and stories to know if/what we should be asking.

Brave I did read a lot (and continue to do so) about ALL when Alex was diagnosed. After a while it does make sense but it takes a while to assimilate. I cannot agree with Alex's doctor's stance which seems to be that they are the experts and therefore we should just trust them to get on with it, while she is wonderful in many ways I NEED to know and understand what is going on with my son.

Saying that, one can become obsessive and start worrying about things that may never happen or apply to our DC's case. In the same way support groups on Facebook can be terrifying places because everyone's issue becomes your issue.

Wrt fundraising - I think it's up to the parents how they cope with the uncertainly of the treatment and maybe it gives hope. And in thenewnormal's case it is completely justified as they had legitimate treatment-related expenses to cover. However I think if it is not needed for treatment then the money should go to research or another charity.

I think re: fundraising there's no wrong answer. Whatever you decide is right for you.

I'm the opposite to Twunk I trust Joseph's consultant completely. He said from the start he didn't feel treatments abroad were worth it. Unfortunately there's no neuroblastoma treatment , especially for relapse, which is going to work for a broad range of children. On relapse it's unfortunately more a case of buying time. What we felt was right for us was for our family to be together and I also know people who have fundraised have found it stressful to be organising events etc while also going through the stresses of treatment. Only you can decide what's right for you and your family and your decision will be the right one x

Thanks Trazzle and Twunk, that's very helpful. Having had experience of fundraising after my brother died, I remember how exhausting it was. I can barely decide what to wear or make for dinner let alone make huge fundraising efforts. But I realise it's all early days for us and everything may change.

I'm trying to get my head around the treatment plan. Surgery was successful in that they got the full tumour and there were no others. But because there are microscopic cells left, we have to embark on this horrible gruelling treatment. But they can't see these cells so how can we know if it's been effective? Head is spinning.

Our consultant is lovely-a combination of honest and knowledgeable and so sensitive and compassionate. Really like him and he has a great reputation.

I am sorry for hogging the thread with all my questions but really appreciate your support.

Oh I completely trust Alex's consultant - utterly. I've not questioned the excellent treatment he's received - but I just feel that she (and maybe the medical profession here in general) operate very much on a very restrictive need-to-know basis and I like to know EVERYTHING. Of course I had the advantage that the published Dutch papers on his protocol are in English and so I can read them easily. So I did!

I couldn't write a medical paper but I can read one, and except for the genetic stuff which was getting a bit difficult, I can interpret them well, including noticing issues and limitations - but then I suppose Alex's doctor doesn't know that.

I'm very sorry to hear about your brother brave

Thank you Twunk , I imagine I'll be similar when my head feels less muddled. I actually work in the hospital where he was initially diagnosed (not as a medical doctor though) so I am generally used to reading medical papers but I think I'm just looking for one that says 'your son will definitely survive' .

Are you in the Netherlands? What do you think of the treatment there? DH is Dutch so I'm constantly having to defend our health care system to my MIL. Even more so now...

Sorry for mis-understanding you Twunk

Brave - you struck a chord with me there, looking for something which says 'your child will definitely survive'.
That's what I've been searching for but haven't been able to put it so succinctly. Thank you!

Hugs to everyone. We're still in hospital...!

I didn't explain myself very well the first time Trazzles

The Dutch medical system has a lot of detractors but I know quite a few Americans and they can be horrified you don't have regular "women's health" checks, and that treatment is pretty "hands off" unless there is something useful they can actually do.

A colleague of my friend fell backwards down a typical Dutch staircase in a bar in Amsterdam, very very nearly died, and had a nasty head injury. She was medically evacuated back to the US for her recovery where the doctors were horrified to discover she hadn't had her wound stitched and she had paracetamol and nothing else! But you see - they felt the wound would heal of its own accord, and paracetamol is a good painkiller!

I had gallstones after DS1 and was treated efficiently and well. Alex's treatment has been nothing short of amazing - his hospital (specialist children's hospital) is considered one of the best. He is on a blood cancers/ stem cell transplant ward which is very specialist. We have nice individual rooms and ensuite shower rooms. The outpatient clinic is lovely and bright and fun, and the nurses excellent. Now Alex is in maintenance we see his consultant every three weeks, and blood results come in an hour so he has his bloods done, we wait around and the consultant can decide his level of medication. We can get his medicines delivered to our house (though I usually collect them).

So yes I do like it, but it's not perfect. And they're constantly messing around with what the health insurance covers. Many of the cheaper plans now don't cover all the hospitals so you may have to pay one third of the bill. There are policy excesses and exceptions - going to the hospital to have my coil removed cost me €188. It took 10 minutes. We were charged for one of Alex's drugs as it's not covered by the legislation.

On another note, there's no equivalent of DLA, it's harder to get a blue badge, and so financially we've taken a hit (especially with the drugs costing us). I was at home anyway so thankfully we didn't lose an income, though you can be off sick for up to 2 years with pay.

That was an essay!

brave there is no way I could have fundraised in the first few weeks. I could barely function! we were very lucky that a group of friends took it on for us. very quickly on the fundraising I recognised I didn't have the energy and if anything was assigned to me I side stepped/delegated.
twunk our money is held in trust for ds and then if not needed will go to charity. we also have been clear it did not go towards family days out in the USA as I know some have done but we would have felt very uncomfortable fundraising for treatment costs then using it on a disney trip. we were however lucky enough to get a little insurance pay out which we assigned to fun things like zoo pass and seaworld tickets for days when ds felt well. we wanted to also have time to build happy family memories and get photos of dd and ds having fun together as if it all goes badly she's not old enough to remember him. sorry that was quite a ramble. don't feel you have to do anything brave. there are lots of charities out there and don't be afraid to ask for help if needed. it's expensive having a sick child.

I wouldn't have begrudged you a day or 2 out having fun thenewnormal and I'm sure those that raised money for you wouldn't have either. But you're probably right to avoid it, when people are giving money for a cause they can feel quite strongly about how it is used. I hope you managed to have some good days! Are you home now? How is the treatment going?

We are back in with I's line infection. He's meant to be having it out tomorrow. At least it's not christmas.

oh no unbuckle
I'm so sorry. missing family days is so unfair :-( :-(
does anyone else use curos caps at the end of their line bungs? they did in usa and we managed 3m without being admitted for fever within 24 hours of line being used. needless to say we're buying some for use here!

Yes, it is horrible, and every time part of me thinks "but we might not have another one together". This time it was so forseeable - he had a course of abs that was due to end on Weds plus 2 days for cultures = good friday. They made it clear they didn't think the course would work. So here we are, on easter day, nil by mouth and waiting for his op

They don't allow siblings here either.

Sorry to hear that Unbuckle, hope he's feeling better soon and that day goes fast.