Children with cancer

[KinkyDoritoWithFairyLightsOn]

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.

Thanks for all the good wishes. We'll be in hospital from Wed until Friday. I have my hand cream and have started a list of all ds's fave snacks to take in with us! Will be able to update from there as they have wi-fi in the ward.

Hi tough. It is very tough on the little ones. I just hope they forget all about it as they get older. Your DDs memories of treatment should fade too. I really like the idea that you went back to bf your DD at that time. I can completely understand that urge to comfort. You just want to take it all away from them and get them as close as you can. I've spent a lot of time holding DD, even though she's nearly the size of me.

Stinky We LOVE wards with wi-fi. I will be around avoiding housework so will keep an eye out for you. I'm happy to aimlessly chatter for hours rather than get stuff done. My work meeting is Wednesday, so I'm liable to need some hand holding then.

Hi Busters and thank you for the offer of coffee. I'm tied up all the time with pinging around between school, childcare, hospital. It's hard to have a completely free couple of hours to get into town, but I will certainly ask you when things get calmer.

Lisa How were DHs bloods? I hope he's okay.

Vev well done on getting through my blog. I hope you didn't feel too depressed afterwards . Thanks.

Hi ladies hope you don't mind me posting.
I've been asking advice on another thread can a lymphoma be misdiagnosed as a virus and a couple of mnetters recommended this thread.
We've just been allowed home from royal mars den awaiting bone marrow and lymph gland biopsies that shoul be told to us end of this week...this not knowing is driving me crazy with worry

His feeling loads better so likely a bug. He wasn't allowed in to do bloods because of noro virus outbreak at hospital. His fine but will make sure he has bloods done this week.

No probs Kinky completely understand. Been there and know how it is. Bit daft of me to suggest it now really

Hi Hammy, glad to see you on here too now. Really glad you were allowed home, nothing like your own bed and your own space. Keeping fingers crossed for you for good news.

Lisa, so glad to hear he's feeling better .

Hammy it certainly sounds like you have the definitive tests now. They are all misdiagnosing things, and I treat 'virus' as a kind of cover-all for being a bit clueless about what's going on. One way or the other you will know soon, and you will get through it. I need to find your other thread and have a read. Hugs to you though. The not knowing is horrid. I was relieved when she finally got diagnosed as at least I knew what we were dealing with after 3 months of messing around, all the time untreated. This too shall pass: keep telling yourself that.

Busters Nooooooo! It was not daft - I would really like to, it would be nice to chat to someone else about all of this in person, it just might be a while before I can get away. I haven't got anybody to talk to really. It would be lovely to meet up.

lisa glad he's feeling brighter. Good news .

Hi Farlo how are things with you?

should say always misdiagnosing not all

Hammy it certainly sounds like you are going through it. I think Farlo has given you some great advice on there.

I would say, step away from google. If you want to chat to an expert, ring one of the cancer helplines like Macmillan. We are also here for you.

My blog entry about when DD was diagnosed:

theacutelymphoblasticleukaemiadiary.blogspot.com/2011/12/very-beginning.html

This is what we went through.

Remember to take good care of yourself: eat and rest if you can. You need to keep yourself strong.

I'll be thinking of you all.

Just found this thread. May I join you all? My DD1 was diagnosed with high risk neuroblastoma in May 2009. 2 and a half years of chemo, radiotherapy, operations, high dose chemo, immunotherapy and differentiation later and she's been in a partial remission since August. She was in PICU on a ventilator for a few days in October with meningitis and she's still off school recovering. She's managed 2 mornings so far this term.

Kinky, I can't believe you all had to go through so much to get a diagnosis. I guess it's hard when the symptoms are so vague. We were lucky, I think, because although NB usually also has very vague symptoms, we were immediately sent for tests and they were followed up. We knew within about a fortnight that it was a cancer, and within a month we knew the type and started treatment. I've heard so many stories though, of NB being missed for months as the child gets more and more ill. DD1 has never been unwell from the cancer, but the treatment has made her very ill. She weighs the same now as she did when she was diagnosed - her little sister (who was a baby when this all started) is now taller than her, and has moved onto the 4-11 years car seat while DD1 is still in the one she has had since she was 1!

Should have said - DD1 is now 6.

kinky I think it was more of a comfort for me as well. This was something that I could do to make her feel better because I felt helpless otherwise.

lisa glad your DH is feeling better.

hammy, I have no experience of lymphoma but am hoping you get good news.

peppermint your dd was diagnosed round the same time as my dd. I have found this thread to be a great support

Whenever you're free Kinky - don't want to add to your already chocka to-do list!

Hope everyone is ok

Kinky I read your blog, made me cry I must admit.
You are all such amazing ladies.
Thank you for your support and I hope to be able to support you all should you need it, whenever you need it

Hi Kinky we're fine thanks, DD's doing well and her blood counts were fine on Weds which is always a big relief for another while until the next sneeze, pale skin day, funny mood, bruise or blood test .

Welcome Peppermint, please do join us - so sorry to hear your DD has been having such a tough time. I have a couple of friends from our hospital whose DDs have neuroblastoma, that's one very tough treatment regime . Really glad to hear you got the immunotherapy, I understand that can be a real struggle.

All the best for today Stinkyfeet.

Hope everyone else is keeping well

Thanks toughday - we're all settled in. They've put us in a private room with our own bathroom, comfy sofa - it's bloody lovely!

Ds is on a saline drip at the moment in preparation for his cisplatin infusion overnight. He's in good spirits - much helped by the snack trolley brought to his bedside, and being able to choose what he wants for tea from an extensive menu!

Hi Peppermint. It sounds like you've really been through it. I hope things are much more settled for you all now.

Love the private rooms Stinky. The one in the teenage unit DD was in on our last stay had TV/DVD wall mounted, a PS3 (not that I would have a clue what to do with that) and our own bathroom and shower. Nice! I also got free reign over the craft supplies so I faffed with felt until my little heart was fit to burst with crafting happiness. I haven't done anything like that since I was a kid - I was amazed how calming it was.

I am around. I had my meeting today.

I'm phasing back to work! Woo!

I'm very excited, and trying not to get my hopes up too much about it.

The down side is that I will be leaving DD by herself for about 6 hours on one day, which isn't ideal. She will be 14 this year though, and I would never, ever leave her if she wasn't well. But at the moment she isn't timetabled full time school, so I sit at home with her whilst she goes on the computer all day and makes herself snacks. I don't do anything. It seems daft when I work 5 minutes away and my childminder with DS lives a couple of doors down. Our neighbours are usually in too. I still feel very, very guilty though and like I will get bad parent of the year award for even considering it. It's daft really, given that I used to stay at home by myself at her age all the time.

Argh.

It is hard to know what to do for the best. I do need to work though, and if I drop my contracted FT it will be difficult to get back after all this stops and I need the money from it. My friend at work has recently had an hours increase refused.

I'm going to see our social worker tomorrow and check I'm not breaking the law or anything.

Vincristine and bloods tomorrow. It's hospital day.

Should have said hello to everyone else too!

How's things Hammy and Tough?

I'm pleased your DDs bloods were okay Farlo.

Hi Stinky. Hope it goes well. I will be thinking of you guys as DD is off to Weds cubs tonight. Fingers crossed that we see your DS back there sooner rather than later It's hobbies and collectors badges tonight - Akela has forbidden anyone to talk about playing football or collecting Match Attax!

That snack trolley sounds excellent!

That's good stinky, they usually try to make things as comfortable as possible for everyone.

Don't feel guilty kinky, you may find it will do you good to get into a routine of your own again. You could always pop home for lunch as well .

All going well here, still no results from scan yet but feeling more positive about everything.

Our lunch break is 30mins, but they have taken me off any lunchtime duties so I can go back and forth if I need to. They were very supportive and I feel daft for being so scared about it.

I'm pleased things are okay tough.

Hi everyone, had a call from the doctor at mars den and she confirmed that no trace of cancer found in ds bone marrow but need to wait for the biopsy results to come back still.
So good news that his marrow is clear fingers crossed that if he has got lymphoma then it hasn't spread too far!
So we're hopeful but still none the wiser really tbh.
Hope everyone else has had a goodish day today?

That's hopeful news then Hammy, hang in there.

Kinky, that's great about getting back to work - you must be relieved, if a bit nervous. I'm sure DD will be fine - I loved being on my own at that age!

Thanks for your thoughts Chippy. Hope it went OK for DD this eve.

Thanks Stinky.

Hammy that's fantastic news!