Children with cancer support group

[blindspots]

Is there a support group for children with cancer please? In here or General Health/ Children's Health?

Thank you

I'm talking the actual diagnosed ones too please, not just vague symptoms and worries.

It feels so wrong to start a thread in Children’s Health about this next to some of the posts .

No disrespect to any of the posters there by the way, I long for the days when I didn't have to worry about my child's actual fucking cancer

^ anger directed at the cancer FYI. It makes me swear a lot

I'll go first. AML leukaemia (AMKL subtype). If you know you know, starting to head down experimental pathways

Keeping it vague to try and stop any vultures trolling me (though if you troll me over my dying 2 year old may you rot in hell)

Bumping for you. Cancer can fuck off.

Cancer can definitely fuck right off! It is an absolute See You Next Tuesday of a thing

Bumping for you, my cousin died of Aplastic Anaemia many years ago before much was available in the way of treatment. I hope that you have some real life support. I can't imagine how hard this must be to go through

Hello 👋

My five year old has medulloblastoma. Dx September. Just done 6 weeks protons in Germany and got home yesterday.

I'm utterly fucked. I ordered presents there and had them delivered to my mum's had so much stuff sent from some amazing charities too. It all feels hollow though somehow. X

Who knew there were so many grassroots children's cancer charities that do so much for families?!

You're right it does seem very hollow; opening presents with DC 1 and 2 while DH is with DC3 in hospital, until we swap later

I’ll join you though my little girl is now off treatment - and I realise just how lucky we are to be celebrating this Christmas with a relatively healthy little girl. She was diagnosed with rhabdomyosarcoma last year, also had 6 weeks protons in Germany and 9 cycles chemo. It all sucks. There’s a couple of lovely fairly active FB groups for support - message me if you want me to send you the links.
@blindspots I’m so sorry you’re facing this world of shit. Sending hugs xx

@blindspots

Who knew there were so many grassroots children's cancer charities that do so much for families?!

You're right it does seem very hollow; opening presents with DC 1 and 2 while DH is with DC3 in hospital, until we swap later

It's amazing. My DS was on chemo 2015-17 and the amount of charities that offered us holidays, day trips, presents etc was breathtaking. Once chemo ended I started volunteering for a couple of the charities just to feel like I need to give a little back

Hi- may I join you please in this crappy club we don’t want to be a part of? My 10 year old son was diagnosed in June with a form of Hodgkin’s Lymphoma in his neck. The tumour was removed surgically and we were given a less than one in ten of relapse, but the lump has grown back and other nodes have popped up, so he had a PET scan on Tuesday and now just waiting for the results of that and next steps. I hope you don’t mind me posting as we are ‘lucky’ in that lymphoma apparently responds well to gentle treatment. I’m in awe of others I’ve met along this journey and the bravery they’ve shown.

Hi @Askinvillarblues

How is everyone doing?

We have our 1st hospital appointment tomorrow to sort out stem cell harvesting prior to chemo. She's having 16 week inpatient following St Judes guideline. I'm struggling emotionally with the thought of her suffering. The stress is really starting to hit.

@Lupellegrino doing ok here, coming up to scan and so struggling a bit with scanxiety.

Are you on the Essen WhatsApp group?

Hi all... we are in a bit of shock to be honest. He was diagnosed with lymphocyte predominant Hodgkin’s last June and as it was stage 1a they could operate to remove the affected node. PET scan was clear in august, 6 weekly checkup - small suspect node popped up in November so his ultrasound was brought forward. Didn’t look too good so PET scheduled for 29th December- and we found out on Monday that it looks like he is now stage 4 with liver, lungs and spine involvement. Emergency mri and CT scans yesterday and we are in the hospital today recovering from neck biopsy, bone marrow biopsy and central line fitting. I am totally in shock.

That was a bit me me me, I’m sorry. How are you all getting on?

Yes I am in the chat!

Sorry that was to @chinateapot

I'm so, so sorry @Askinvillarblues it must be completely shocking please don't say you're being me, me, me you are just sharing your story and we are all here to do that.

@Lupellegrino thank you. It’s all a bit overwhelming at the moment. It was confirmed yesterday as stage 4 and he’s had his Hickman line fitted. My poor boy is so battered with the neck biopsy, line fitting and bone biopsies too - everything hurts 😥. Now waiting for the biopsies to come back so we can find out what the hell is going on.
How is your little girl coping? You just feel so helpless seeing them in pain, don’t you.

I'm really struggling and have a constant lump in my throat as though I'm about to cry. Dd starts with gcsf injections on Thursday then she will be admitted on Monday morning for a vas cath line in her groin in order to harvest stem cells. Hopefully home on Wednesday if all goes to plan.

The past few evenings I've been drowning my sorrows and I'm havibg to hold myself back from going and getting a bottle of wine tonight. Don't want to drink like that it'll help no one!

@Lupellegrino oh gosh it’s so hard isn’t it. Seeing them in pain, and knowing that you are going to hurt them more to get them better. How long will it be before the transfer? I don’t know anything about them but to be honest haven’t looked as I suspect that we will be facing one too at some point down the line.
I have the constant lump too. Had a bit of a meltdown yesterday and thought I was doing ok today as we came to the hospital for a heart scan, only to be told they had to do another biopsy as they didn’t get enough from the last one, so we are back in and probably staying. It’s just one shock after another at the moment.

Sorry, welcome to all in this shittest of clubs,

Sorry you have to be here but it's nice to have others to talk to.

It's the never ending lump in your throat and in my case stomach as well. The never ending waiting for treatment or tests or results and the almost impossible to take anxiety. I gif I get so snappy at my other children waiting the results too.

Finished last lot of experimental chemo (experimental as in it's not used as a standard treatment but has been useful as a bridging treatment to get to transplant).

Two weeks til the next biopsy; three weeks til the results as to whether my child gets a shot a transplant or this is the end of treatment. Worrying about each and every cough and sniffle along the way due to his neutropenia.

Sick of spending time in hospital but dealing with a constant lump in my stomach that sucks the joy out of each and every situation when I find myself beginning to relax.

It's not good news. There is no further treatment that can be fine and we have weeks with him.

Fuck this world

I'm so so sorry xxx