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

[Trazzletoes]

Oh thank God kinky that's fab news! Was lovely to see you earlier x

[Twunk]

Bloody terrifying this cancer journey. Even when it's over it's not! Relieved it was a false alarm xx

[Nocakeformeplease]

Oh thank god Kinky

I'm so sorry I couldn't post earlier as I was at work. Am over the moon to read your update though

Love you everyone else x

[Nocakeformeplease]

Love to everyone else

[Twunk]

Love you too Nocake

[DianaTrent]

Oh Kinky I am so very pleased to hear that !

[DianaTrent]

Thanks for the feedback, Tabitha I am glad you got something out of it at least. I must admit we were through the intense phases and over the shock (as much as you ever really get anyway) by the time the group was set up which probably made a difference to how I experienced it. I really wish I had had access to something like it earlier as DD had a lot of complications which meant we may have benefited from other's experiences at that time, but I can very definitely see the downside of hearing so many things that can go wrong, particularly at the start. You do get very attached to the other people on the, which can be wonderful, but it can be harrowing too.

[mmmmsleep]

so glad kinky!!

diana- I had joined a couple of fb groups relevant to ds' cancer but have unfollowed them as it was too distressing seeing them in my fb newsfeed. it seemed to be full of posts about death and relapse and one group posts pictures of candles regularly for children who have passed. it's a lovely gesture but I couldn't cope with the constant reminder of where this could all end. my ds' diagnosis is a bit bad for relapse/lack of response. the fb groups can be good but I found it too intrusive. not sure if others here know you can "unfollow" a group so you don't see posts in your newsfeed on fb but still be in the group if you feel strong enough to look at posts in it. as far as being admin for such a group I think much the same as happens with this thread, it makes sense to have a group for grieving parents that is separate to the one for those on treatment/follow up. It's difficult as you want to support those you meet through these groups but equally one group I left had a lot of posts by distraught parents who were several years down the line after their child had passed away. I'm not suggesting for a second that that kind of pain ever goes away or that they should hide it just that other grieving parents may be better placed to support them and it can be distressing for someone who's dc has just been diagnosed to have constant reminders that treatment doesn't always work when that's something we need to push away from our consciousness just to get through the day.

it's very late here and I can't sleep waiting for test results tomorrow so I hope that garbled text makes sense and most importantly doesn't offend anyone!

[KinkyDorito]

to all of you xx

[unbuckle]

Great news kinky.

[Twunk]

Hi Diana, of course I do know you on 'the other side'.

I don't know anyone here in NL who is going through what we are, so I find the group very important as there really is no-one else who properly understands.

I have to admit, I avoided it for the first 3 months because at that point you don't know so much - and it can be pretty frightening. TBH it's less frightening now, but I have no idea if that's because Alex is doing well or it's just that I know so much more.

Unbuckle I do understand. Because essentially losing our child is what scares us every single day. I call it the "flipside" to support from other people in your position - you get the support but also you read heartbreaking stories. I never knew anyone who had suffered from, or had had a child with, cancer in childhood. Now I know so many! I can be hard not to carry it with you, especially when you're so scared yourself.

(((((hugs))))) all round.

[lovelychops]

So pleased for you kinky, what a relief.

I'm on the fb group for ALL. And whilst it's been helpful when I've asked for opinions on a specific topic, and everyone's been welcoming etc... I do find it quite a negative place. Not meaning to be disrespectful to anyone on it, and I don't expect it to be all positive and good news. But it can feel a bit overwhelming, especially at first.
I think I'm trying to say it's been really useful to an extent but it has added to my worries at times.

Speaking if fb what do people think of all the no make up selfies trying to raise awareness? I'm conflicted. And possibly too tired to form a coherent opinion. ( as this post presumably shows!)
I suppose I should avoid fb for a while, need a break from all the cancer talk?

[mmmmsleep]

I posted a picture of my ds with a link to children's cancer charity www.childrenwithcancer.org.uk/Appeal/donate to try to raise awareness and funds for children's cancers given how little funding there is for research into kids cancers. it's all a bit bizarre but seize the day and all that ;-)

[Twunk]

My sister had breast cancer 2 years ago, and she didn't actually know the symptoms for it (she's an intelligent woman, and is even a nurse!) so I posted the list of breast changes you should see your GP about.

I'm not in the uk so can't text a donation. I think to start with JUST posting a makeup-free pic with no info or donation was pointless, but then with all the discussion this brought it's a good thing. I think.

As long as the windfall is used wise wisely.

As for Facebook groups, it can be the only place to "vent" so can be a bit negative. I also found it terrifying in the first couple of months, and stuck to asking questions rather than reading other people's issues - I often can't help anyway because it relates to benefits, or shared care, or pulses - and we don't get any of those!

In other news, Alex has just completed HIS FIRST FULL WEEK OF SCHOOL! Am so damn proud of him

[unbuckle]

Fantastic news, twunk.

Am equally conflicted on this selfie thing. And as there is such a distinctive 'look' among children with cancer - no hair, puffy face, ng tube - the focus on appearance is a little hard to take. But it's effective and people want to be seen to be joining in.

There's little sign of any donating though, on my feed.

[lovelychops]

Twunk that's great news, well done Alex!

I'm supposed to be off for a night out with two girlfriends tonight. It will be first night out since Poppy's diagnosis. She's doing really well but I still feel bit guilty.

[unbuckle]

Hope you enjoyed your night out, lovely, and that you didn't feel guilty- you have no need to. I don't think i could spend 100% of my time with isaac long or even medium term.

[Twunk]

Do not feel guilty - everyone is allowed a night off!
I hope you had a lovely time.

[unbuckle]

I has a bleed in his eye today. Am terrified. Probably irrationally.

[minmooch]

Just popping in to see how everyone is.

Unbuckle when your child has cancer nothing is irrational. I hope you can have him checked over to put your mind at rest. Xx

Kinky great news about your DD's blood test results xx

Wishing you all much love and strength xxxx

[unbuckle]

Hey min ((()))), good to see you.

[Twunk]

I'm going to stop using the app - my posts disappear

Min it's lovely to "see" you. I think of you often.

How is I's eye now unbuckle?

[unbuckle]

Very bloodshot. Took him to hospital today, and the drs think he has just scratched it. I've never seen it before - a patch of red on the white of the eye.

[mmmmsleep]

unbuckle....sounds like a "subconjunctival haemorrhage" . really common, not painful and clears up in 10 days. like a bruise just under the skin of the eye from a tiny little blood vessel bursting with a cough/cry/vomit etc. patient.co.uk has a patient leaflet if it helps. I totally understand why you'd worry though! ds has new bruises so I got his bloods done thinking he'd need another platelet transfusion and they came back over 100 which is great for him (were 6 a few weeks ago!!). turns out he's just 2.5yrs old and clumsy! nice to have normal bruises ;-)

hi min. nice to "see" you. thinking of you and sending love xx

twunk great news about alex!

lovely don't feel guilty. you plug in your mobile to recharge it regularly so why would you expect to be able to operate on empty. you need those nights with friends and date nights with dh to keep you able to be there for her the rest of the time. so really it was for her....guilt be gone.

hi to everyone else. x

[unbuckle]

Thanks mmmsleep - his eye is still red but his platelets are normal and it is only me who thinks it is a brain tumour so i am sure it's normal. Isaac is crying a lot at night, so much so that last night i fell asleep and I am sure he was still crying. I felt so terrible waking up this morning, even though he was sleeping peacefully beside me. I think the months - well, years - of sleep deprivation mean It is so hard to rouse myself in the night because i am so shattered. I wish there was some way of not needing sleep - there's an opening for a (legal) drug there I think!