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.
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Children's health
Children with cancer
997 replies
KinkyDoritoWithFairyLightsOn · 22/12/2011 09:31
OP posts:
OhDoAdmitMrsDeVere ·
30/12/2011 16:55
Thats fab to hear frisky. I am so pleased for you and her 
KinkyDoritoWithFairyLightsOn ·
30/12/2011 18:34
with dh or me running after her with the drip children's ward is full of parents who spend their days chasing after a toddler with their drip stand! 
It's lovely to see them with the energy for it. How did she get on with maintenance Frisky? Was it smooth going or did you find she was in hospital a lot? I'm really pleased she's okay now; she's a similar age now to my DD who will be 14 in 2012. Interestingly, DD seems to be going for milk quite a lot at the moment.
OP posts:
KinkyDoritoWithFairyLightsOn ·
30/12/2011 20:00
She's been up and down and they think other things might be going on. She's attempting school again next week; she's now on second cycle of maintenance. It's hard work. Thanks for letting me know how you got on.
OP posts:
MsBazinga ·
30/12/2011 20:48
My heart goes out to all of you going through this terrible ordeal.
My DD was diagnosed with ALL at the age of 3.5 (she's now a healthy 29 yr old). She was on UKALL X which was very tough on her but luckily she only has happy memories of playing in hospital and being spoiled rotten .
I wasn't working at the time, we were very fortunate in having a supportive family, and ex-h had an extremely understanding boss who allowed him time off whenever he needed it. This made our lives so much easier.
We were assigned a hospital social worker who arranged grants from the charity now known as CLIC Sargent to help pay for driving lessons for me and help with a very large heating bill at the height of DD's illness.
We also had several very welcome and peaceful caravan holidays in the UK financed by the Leukaemia Care Society.
When DD was 5 she was allocated a home teacher who came to us twice a week for a year and on several occasions my DS's teacher allowed DD into the classroom once all the children had left for the day to familiarise her with the school environment until she was well enough to attend herself.
I realise just how lucky we were in receiving all this help and hope that it's still available to families in similar situations now.
My thoughts are with you and your children x
toughday ·
31/12/2011 14:41
Thanks Curious, don't think scans will ever get easier.
frisky, thats exactly what our DD was like on the ward, we walked them corridors countless times followind DD on the drip.
DD also loves her milk, but we all love milk in this family and roughly go through about 14 litres a week. I also breastfed DD while she was on chemo which I think helped her a lot as on the days when she ate very little at least I knew she was getting some nutrition from me.
kinky, I completely understand about being on edge all the time. I'm lucky that I have very understanding health centre that will get DD in for an appointment at very short notice if I need it. One thing I have learnt is to really trust your own instincts.
Hope everyone has a happy new year
KinkyDoritoWithFairyLightsOn ·
31/12/2011 19:18
Ms My story is on my blog. It's long and boring, but the upshot was a lot of fighting to get a diagnosis theacutelymphoblasticleukaemiadiary.blogspot.com/2011/12/very-beginning.html. It taught me to always trust my instincts. What is sad is that I feel like I still spend a vast amount of time having to fight to be heard, especially when she is an in-patient and we get a number of doctors all suggesting different courses of action. How did you get her diagnosed in the end?
Lisa you are always welcome here .
Saying hello to tough and everybody else and here's hoping for a happy and healthy 2012.
OP posts:
lisad123 ·
31/12/2011 22:23
It's those early days that are hardest before you get into routine of it all.
Thing I think I found hard was those early days when first dx, everyone rushes to help, but 6month later everyone has gone back to their life's but your still dealing with fallout. 
lisad123 ·
31/12/2011 23:15
weird thing with DH cancer is he will never get the all clear :( he just carries on treatment for the foreseenable future. It sounds awful but you do settle into new life in the end. DH has blood tests and appointments 3 monthly.
We also have 2 wonderful macmillian nurses, who are great.
I think people assume, as we dont talk about it, and dh looks and is healthy (cancer aside of course) that its all fine. Most people assume he is in remisison, although he never gets true remission 
lilymaid please pm me if you want the website of a good supportive CML board, there are a few there that are young too.
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lisad123 ·
31/12/2011 23:51
Kinky I read your first post, sadly it's not uncommon. Dh cancer was missed for a year!! They still weren't looking for it when they found it, but found his white cell count was 382 and then went to 414 in a day
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