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Children's health

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Original poster

Children with Cancer

563 replies

Twunk · 28/02/2014 13:39

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

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Trazzletoes · 10/01/2015 14:26

Hi there, just thought I would pop by and say hi and send some love and Brew

Brave really hoping that you get some good news. My understanding, if everything goes ok, is that you would have to not administer the Roaccutane yourself. Given that DH gave J 1 dose out of the entire lot, it's manageable so long as your OH doesn't work long hours x

Original poster
Twunk · 10/01/2015 20:41

Nocake i've been thinking about you. Hope things are OK.

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Schweetheart · 12/01/2015 16:06

Trazzles I'm a lurker but often wonder how your Joseph is?

Best wishes to everyone else too, I hope 2015 sees brighter days for your lovely children.

Trazzletoes · 12/01/2015 17:04

Schweet he's been generally very well, thanks. Though I am typing this from the cancer ward following an emergency admission via a&e last night due to unexplained chest pains. Fortunately "just" pneumonia. Can't believe I'm actually typing that...

Original poster
Twunk · 12/01/2015 18:50

Oh goodness Trazzles! "Just" pneumonia indeed - horrible how our perception is screwed. I hope he's feeling better soon and you're out of there.

I was reading the other day the thread when Alex was diagnosed - you wrote a lot on that thread and it was very reassuring. As did Nocake and tabithamckitten.

Must admit to crying. Do you ever read any of your threads about Joseph?

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Trazzletoes · 12/01/2015 20:06

I occasionally read the one where we found out he wasn't dying because that makes me smile but no. I can't read the rest. Much like I find it very hard to go in the room where I was told he was likely relapsed. And last night he was supposed to be admitted to the ward he was on when he was diagnosed. I nearly lost it. Thank goodness we went to the cancer ward instead. Like most people, we weren't told in the best way and they treated us very badly. I couldn't face going back there.

Original poster
Twunk · 13/01/2015 18:47

I remember reading about his spontaneous in-relapse! Made me smile too.

I'm so sorry to hear you had such an awful time round diagnosis. We were treated very kindly and that makes such a difference. Still, being on my own and having to call my husband and tell him wasn't ideal, especially as we'd been told a couple of hours earlier it was nothing "nasty".

I had spent a lot of time when alex was a baby on the children's ward at our hospital so I was fairly familiar with it. Still, in no hurry to rush back...

How is the patient today?

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Original poster
Twunk · 13/01/2015 18:47

Un-relapse Blush

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Schweetheart · 14/01/2015 09:10

Glad to hear he's doing good aside from pneumonia, hope that clears asap Trazzles.

Trazzletoes · 14/01/2015 19:19

Yes DH and I were accused of child abuse and treated accordingly. Then I was told on my own in the morning that he was diagnosed. I had to call DH and ask him to come in but not say why. I was told on a ward with other people around. It was awful. It's bad enough learning about the Cancer but they treated us like crap.

unbuckle · 14/01/2015 21:37

Lost the thread for a while. Brave - so sorry to hear your news. ((()))

Just had isaac's first follow up scan, which was clear. I think i am cracking up though. We're in a horrible financial position after 15 months of chemo. I have - probably stupidly - quit my job: there's no possibility of promotion and i work so hard i can't find another job while i'm working, iyswim.

Original poster
Twunk · 16/01/2015 12:43

Oh ((((((Trazzles))))) as if it wasn't all bad enough. Flowers

That's truly and utterly shocking.

Unbuckle good to see you. Pleased re Isaac's scan. Sorry to hear re money worries. Sounds like you needed to quit your job in order to move on - hope you find something soon.

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Original poster
Twunk · 28/01/2015 17:43

So...how is everyone?

All is well here. We haven't been to hospital for an acute admission for over a year . Have arranged to go back to the UK for my dad's 70th in a few weeks so hope the luck holds.

Love to Brave and NoCake especially - but everyone else too.

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Nocakeformeplease · 29/01/2015 22:22

Hi there

I'm so sorry for not being around for so long, I have been thinking of you all but have just a bit overwhelmed with everything to come on.

So we found out in early October that D had sadly relapsed - it was a particularly unusual relapse for Wilms (in his testicle) and there are literally a handful of reported cases worldwide. It was so unusual they thought initially it was more likely to be a new testicular cancer but he had surgery the following week to remove the tumour and the biopsy confirmed Wilms. Because it was so rare they weren't really sure how to proceed and were looking at all options from observation to high dose chemo/stem cell transplant, with the likelihood of it being somewhere in the middle, ie chemo but not high dose/transplant.

He had a CT scan to check for spread which was clear. They then decided to do a PET scan to check further for spread and this showed a couple of very small suspicious spots on the lungs even though the CT had been clear. They couldn't decide whether they were disease or infection/dirt so decided he needed a lung biopsy and also a brain MRI. They also decided at this point after taking advice worldwide that regardless of the outcome he would need high dose chemo and stem cell transplant. It was an incredibly difficult time, I really nearly loss the plot. Fortunately both the lung biopsy and MRI came back as no evidence of tumour. The lung lesions wouldn't have changed the the treatment but if they had found evidence of disease in the lung he would have needed pulmonary radiation so that was a relief.

He's now had 4 of the 6 cycles of chemo. He also had the stem cell harvest last week which fortunately went really well and they managed to get 8m in 3.5 hours. He has two more cycles of chemo and then once his bloods pick up will go into the Marsden for about 4 weeks for highdose/transplant.

So far he has coped amazingly and bar a little sickness and tiredness has just been his normal cheeky lively self. He has been admitted each of the first three cycles because of temperatures but even then has been really well in himself for the most part. He's neutropenic again though so fully expecting another admission this weekend!

Anyway, apologies for the essay! Will go back now and catch up on everyone's news, but hope you are all doing okay xx

Original poster
Twunk · 30/01/2015 16:13

No-one wants to be medically interesting NoCake but I'm glad they're chucking everything at it and they have a plan. ALL can also relapse in the testicles but it's not excessively unusual. I'm so so sorry you're going through all this - you have been much on my mind.

Bless him little D - give him a squeeze from me xxx

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Onedimple · 09/02/2015 22:19

Hi' I don't know if I am in the right place. I have only just registered with mumsnet! My little girl has bilateral retinoblastoma and currently having intra arterial chemotherapy.
Best wishes to everyone x

unbuckle · 11/02/2015 20:59

Hi One, yes, you're in the right place and glad you have found us. x

missmargot · 12/02/2015 21:39

NoCake what a hideous few months it's been for you all. I'm so pleased your DS is doing well in himself. How are you coping?

One welcome. DS has (had? I can type in the past tense now, but I'm not quite ready to believe it's all over) unilateral retinoblastoma, diagnosed in September and right eye enuecleated but no chemo. Are being treated at RL or BCH? Have you met your CHECT worker yet?

TheNinjaGooseIsHooking · 13/02/2015 22:26

just thought I'd pop in and say hi, my 8yo dd3 was diagnosed with a medulloepithelioma eye cancer this week. It's been caught very early as she has regular scans for a genetic syndrome she also has, but it's not really what you want to hear!

missmargot · 14/02/2015 19:25

Welcome Ninja, I'm so sorry to hear about your news. I only have experience of RB in terms of eye cancer but I think the treatments are similar. Which hospital are you being treated at?

missmargot · 14/02/2015 19:32

I meant to ask, have you been put in touch with CHECT (Childhood Eye Cancer Trust) yet? They are a fantastic source of support and information at a time when there are so many questions.

TheNinjaGooseIsHooking · 14/02/2015 22:32

Thanks missmargo, I'll look them up! Dd is under the RL, she's having radiotherapy in a couple of weeks when they can fit her in. It doesn't sound very pleasant at all. How's your ds doing?

missmargot · 14/02/2015 23:05

CHECT have a support worker based at RL, I think their offices are based there too. We are treated at Birmingham Children's but hear nothing but positive stories about RL.

DS is doing well thanks, he was 8 months when he was diagnosed in September and had enuecleation surgery on his right eye very quickly. It wasn't as horrific as it first seemed though, the cancer hadn't spread and the artificial eye service are doing a great job.

I will be thinking of you and your daughter, the first few weeks are definitely the hardest.

TheNinjaGooseIsHooking · 15/02/2015 14:25

Thanks missmargot, it's great to hear your ds is doing well.

RL have been good so far, we're waiting to hear from their geneticist as there's quite a history of cancer in my family. There's a fair bit of waiting for things so far which is completely understandable but it's hard to make plans for anything.

minmooch · 19/02/2015 16:54

Just popping in to say hi to everyone. So sorry to see new people have joined this thread that no one wants to be a member of.

It's been nearly a year since my lovely boy passed. I think of him every moment of every day. I think too of all the other children and parents suffering. I am eternally grateful for the support shown here.

I wish you and your children love and strength to get through these horrendous times. Though out outcome was sad there was much beauty alongside the brutality of it all. Keep hold of the beauty everyone. Xxx