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Children with cancer

(998 Posts)
KinkyDoritoWithFairyLightsOn Thu 22-Dec-11 09:31:50

Hi all

I'm going to start this and keep bumping it as I don't think there is a thread for supporting anybody whose child has cancer and I know there are others about. In part, this is a good thing as it shows that it is still very rare, however it doesn't feel like that when you are sitting in a children's oncology ward.

I will be around and am happy to chat to anyone who needs it.

My DD is 13. She was diagnosed with ALL in January. She has to have 2.5yrs of chemo in total, if everything goes according to plan.

I also write a blog that is listed on MN. The catchily titled: The Acute Lymphoblastic Leukaemia Diary.

Best wishes to all.

Elibean Fri 23-Dec-11 16:29:54

Bumping for you smile

Merry Christmas and all best wishes to you and your dd

cedmonds Fri 23-Dec-11 19:33:51

Bumping for you

KinkyDoritoWithFairyLightsOn Fri 23-Dec-11 19:43:32

Aww, thanks both of you! I'm keeping a watchful eye to make sure I don't disappear off the bottom of the board grin.

cece Fri 23-Dec-11 19:47:06

Best wishes to you too.

My cousin's son also has leukaemia. He had loads of treatment last year but sadly had a relapse about a month ago. He is currently having more chemo and they hope to give him a bone marrow tranplant soon. He is 11 years old. x

Best wishes to you and your DD

Pascha Fri 23-Dec-11 19:50:00

I'll bump this for you. My brother had ALL aged 19 and my sister had AML aged 10, they're both fit and healthy now at 31 and 37 respectively. Best wishes to your DD smile

lisad123 Fri 23-Dec-11 19:51:25

I asked mn last if we could have separate cancer threads for anyone but told no sad
Sorry your going though this, cancer is a bitch.
Dh been dx with leukaemia 2.8 months ago, and has cml. if I can help anyone please yell, been in this ride for a whole now and as dh is a "bury head in sand" type, I spent loads of time researching. Hugs for you of you x.

KalSkirata Fri 23-Dec-11 19:51:54

best wishes. A friends child was diagnosed with AML recently.

Lilyloo Fri 23-Dec-11 19:57:45

Another bump for you and your dd , Hope you and your dd and family can have a lovely Christmas.

KinkyDoritoWithFairyLightsOn Fri 23-Dec-11 20:03:19

Pascha that must have been so tough on you all. I'm pleased to hear that everyone is okay now.

cece my thoughts are with you; it is such a horrible illness.

Hi lisa. We've chatted before. How are things going?

Kal Let your friend know we are here, and here for you too if you need anyone to chat to.

Thanks all of you for saying hello and bumping for me!

Stinkyfeet Fri 23-Dec-11 20:35:46

Hi Kinky!

Well done for starting this - let's hope there aren't too many who need it.

For everyone else who joins this thread, my ds1 is 8 and was diagnosed with medulloblastoma (brain tumour) in Sept. Since then he has had the whole tumour successfully removed and completed 6 weeks of radiotherapy earlier this month. He has also been having weekly doses of vincristine.

In January he begins his full chemo cycles - he is due to have 8 six week cycles.

Best wishes to anyone who comes to this thread.

Yes, well done!

My DS is now 24 and had medulloblastoma when he was 8. Thankfully he made a full recovery and the only lasting problem he has is a slighty underactive thyroid caused by the radiotherapy. We spent Christmas and New Year 95/96 in hospital.

My thoughts are with everyone who is currently going through this. It's horrible.

KinkyDoritoWithFairyLightsOn Sat 24-Dec-11 11:31:54

Hi Stinky, I'm pleased you've joined me!

So far busters it seems like we are staying out of hospital this time - but she is covered in a rash from all the drugs and has just had vincristine. She's feeling pretty wiped out. I'm just hoping steroid power kicks in and she feels like eating by tomorrow. She hadn't been diagnosed this time last year but was seriously ill at home. It was really rough going.

Happy Christmas to all!

labtest Sat 24-Dec-11 12:42:48

My 4 (5 in january) year old daughter was diagnosed with ALL in June this year. She is currently in the delayed intensification block on regimen A.She is being treated at RVI in Newcastle. I agree that it doesn't seem rare when you are sitting on a childrens oncology unit.

lisad123 Sat 24-Dec-11 12:46:40

Kinky we are doing ok. I guess now cancer is part of our life's and will be for the foreseeable future sad

Hope all your LO are holding strong and resting well x

KinkyDoritoWithFairyLightsOn Sat 24-Dec-11 16:38:34

Hi labtest. Does she have 1 intensive block on that regimen? DD is on B, but only needed 1 intensive as she's low MRD on the medical trial. How is she getting on at the moment? My thoughts are with you, it's really tough, especially with little ones.

Hi lisa. It's the unknown all the time,isn't it? I daren't make plans. I was built up to return to work, as hospital made out things would be much more straight-forward by this point, but it has still been up and down. I can't get my hopes up about anything. She's been a bit better this week, so consequently I feel wiped out! As soon as she's okay, I seem to get hit by everything my body is putting off when she's ill.

KinkyDoritoWithFairyLightsOn Sat 24-Dec-11 16:39:44

Also,*labtest*, there is a facebook group called Children with ALL that was set up by a mum from LGI (where we are - Leeds). That's helpful too.

labtest Sat 24-Dec-11 18:50:28

Hi kinky. At the moment her consultant is unsure whether she will get one or two intensive blocks. Her MRD was indeterminate but they ruled out high risk as they found one clonal probe but due to technical problem with sample they could not find the other. I hope she only gets one and UKALL2003 trial is finished now so her consultant doesn't have to adhere to trial protocol so fingers crossed! She has coped really well with no side effects,other than hairloss, to any medication except the roid rage during steroid vincristine week!
I will check out that facebook page, thanks.

lisad123 Sat 24-Dec-11 20:02:42

Things are a lot more settled here than they used to be, took about 19 months before things settled into good routine. Dh isn't cureable so we will leave with this for rest of his life. We are hopeful though.

Thing I hated most was the lack of control or help I could offer.

I she feels better soon Kinky we were 'lucky' that DS didn't have chemo and have to suffer all the side effects as it wasn't part of the treatment protocol for brain tumours back then. They were actually just trialling it and he was part of the trial but was selected for radiotherapy only after his surgery, which was bad enough.

And they are fantastic at the LGI. I can't speak highly enough of them. That's where DS was treated! I'm in Leeds too. He attends Long Term Follow Up appointments every year at the Bexley Wing at Jimmy's so it's a while since we've been back there.

I hope she feels better soon..

Stinkyfeet Tue 27-Dec-11 13:56:19

Hope everyone had a good Christmas!

Busters, that's interesting that your ds didn't have chemo and still made a full recovery - certainly comforting to hear for me. We've been told that the chemo is the least important part of ds1's treatment, and that they can stop it earlier if he's finding it too gruelling.

Ds1 has said this was the best christmas ever - lovely to see him happy and excited. He just needs to eat more as he's lost a fair bit of weight and is looking very thin at the moment.

Alouisee Tue 27-Dec-11 14:02:21

Hello - only just seen this thread. My ds2 was diagnosed with ALL in March 2002 aged 3. He had three long years of treatment which are a now a distant memory as he's a happy and healthy 13 year old. Albeit one who faints at the discussion of anything medical!

Best wishes to you all.

CURIOUSPARENT Tue 27-Dec-11 14:11:11

All the best to everyone suffering from any form of childhood cancer. Busters my DS was diagnosed with medullablastoma aged 7 in 1998. Sadly his disease recurred and he died in 2002. Nice to hear that your son is doing well.

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