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Children's health

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Original poster

Children with cancer

997 replies

KinkyDoritoWithFairyLightsOn · 22/12/2011 09:31

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.

OP posts:
FoodieToo · 18/05/2013 20:08

Same as truly,Min, I didn't want to intrude.
But want to say I have been following you and thinking of you.
So,so sorry for your pain.

Your darling son sounds like a star x

blue22 · 20/05/2013 13:35

Another intruder who is just desperately sad for you Min. Your boy sounds wonderful. What an inspiration. I'm giving blood and platelets in 2 weeks time purely because of you and Trazzles and your amazing boys.

Elibean · 20/05/2013 14:01

Another one delurking. I'm so sorry Min, what utter, total crap. I can't begin to imagine how you cope, and also wish I could help - being alone in it all sounds extra overwhelming Sad

Your son sounds amazing, as does his fundraising, and fwiw (as I am unable to donate blood/marrow due to health reasons) I am off to make a donation to his chosen cause. Which he should add to his total, really, as it is purely because of him that my awareness is raised enough to do so.

minmooch · 21/05/2013 19:06

Thank you all and thank you Elibean for your donation to the charity. Xxxx

This is all so painful beyond words. Why children? Why not give them a chance? It is agonising.

I don't know. How much either of my sons understand the implications of it all - I think they are both in denial. They are going on holiday with their Dad and that's all they are focussing on - except youngest DS is right in the middle of his GCSE's so he's working towards those.

I am off abroad on Friday as well - on my own so hope I get some head space and strength. I could cry when I think of going away.

Oh god I need strength Sad

minmooch · 23/05/2013 07:31

Having major anxiety attacks about going away. Horrid dreams and very little sleep. Am I mad to be going away on my own - not much choice in that now as I am flying in the morning! What was I thinking?

Praying4Beatrice · 23/05/2013 20:41

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hellohellohihi · 23/05/2013 22:15

Another lurker here.

Minmooch I hope your break offers a little respite from your nightmare (though I'm not sure how anything could). Anything I think to write feels so lame and inadequate but you are in my thoughts.

Trazzletoes · 23/05/2013 22:40

min however stressful it seems now, I suspect a break will do you good. I hope you can relax and enjoy yourself to some extent.

Your DSs sound amazing.

DianaTrent · 24/05/2013 11:43

I hope you can recharge a bit, min. Thinking of you loads. Thanks

hazlinh · 30/05/2013 07:39

Hi everyone, I am new to this thread. I have not been on MN for a while. 3 years ago, DD (9) was diagnosed with ALL and underwent 2 yrs of chemo and went into remission for a year and 2 months. After her blood counts dropped last week the doctor did a bone marrow test and informed us that she has relapsed and he said it was AML now. We have been transferred to Singapore (long story, we live in Malaysia) and we are now awaiting results for a repeat bone marrow test. Has anyone heard of an ALL patient developing AML after being in remission for a while? What is the treatment for this? We were told that dd will likely undergo standard chemo for AML, and then probably need a transplant. They also asked if we would like to join a clinical trial instead, using clofarabine. Anyone familiar with this??

Praying4Beatrice · 30/05/2013 20:55

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Trazzletoes · 30/05/2013 21:03

Hi haz I'm afraid I can't help you either - I'm another one with knowledge of solid tumours rather than blood cancer.

I'm sorry to hear your news though.

hazlinh · 31/05/2013 09:05

thanks...

KinkyDorito · 05/06/2013 06:32

min I'm so sorry about the test results Sad Sad. Sending much love.

haz I'm sorry to hear about the relapse. From what I have read, it can as a second instance when the ALL has already been cured. Sad

Trazzletoes · 05/06/2013 06:41

kinky how are you doing? And DD?

KinkyDorito · 05/06/2013 19:43

Hi Trazzle. She's doing okay, thanks. She's attempting a full week in school this week, which is great. She is managing things much better, far less tired. Hospital next week. I'm okay, in a bit of a weird funk at the moment hence not been on here much. I think I'm still coming to terms with everything that's gone on and the consequences on us all. It's certainly affected my health, let alone things like work and finances. Having a child with cancer is long-term life changing I think. I need a good shake and to just get on with it!! How are you? How's Joe? Smile

hazlinh · 06/06/2013 14:40

Praying4Beatrice thank you. Hope your daughter is doing well.

Trazzletoes, thank you. Hope everything is going well for you.

KinkyDorito yes apparently it can be caused by the chemo used to treat ALL. How ironic. Glad your DD is doing well. Thank you so much for starting this thread btw.

The repeat bone marrow test confirmed it is AML and after several long agonising days, we decided to join the trial. She has been randomly selected to take the new-ish drug clofarabine. It is day 2, and so far so good. No severe side effects, just a slight headache yesterday which didn't last long, achy calves at night but they monitored her oxygen sats and bp and everything was normal and the achy calves were fine in the morning. She took a nap today during the chemo which is very unusual for her, but apparently this is normal during chemo. Don't recall her napping during the chemo for ALL though! Feeling very sorry for me and dd today though because the doctors came round to examine her and said she has a number of cafe au lait spots on her body (on her back, her arm, and behind her legs) and said it could be Neurofibromatosis. They even took photos. Like as if I haven't had enough bad news this week to last a lifetime. The eye doctor came and checked her eyes though and said they were normal (no tumours or cataracts or anything) so I hope that's that. Having AML is nasty enough, I am not sure how we would cope with a diagnosis of NF on top of everything Sad

KinkyDorito · 07/06/2013 07:23

Oh Haz, it sounds like you're all really going through it. Are you in patients at the minute? I hope you are managing to get a bit of time for yourself, although I know it will be of little comfort at the moment. Sending love and positive thoughts. Keep on keeping on. Hoping for a good day for you all.

hazlinh · 07/06/2013 11:58

Hi KinkyDorito, yes we are in until Tuesday and hopefully can go back if dd doesn't have a fever or anything. It's just me and DH in Singapore, so am stuck here 24/7 except for the odd 15 min when I can pop down for a quick cuppa or a bite to eat. Thanks for the thoughts, hope all is well for you and DD x

Praying4Beatrice · 09/06/2013 00:13

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minmooch · 09/06/2013 20:34

Hello everyone. I'm sorry I've been absent but I've been hiding from the world since I got back. Holiday was a physical rest but it was very hard emotionally and mentally. I didn't mind being on my own, I didn't want to speak to anyone really. The boys went away with their Dad and they had a wonderful time. dS went parasailing, boat rides, late nights and great eating. He's been desperately tired since coming back and quite distressed at times.

We went back to hospital last week to transfer over from paeds to adult oncology for him. They have decided on an oral chemo to give him hopefully for 6 cycles. It's a tablet taken for the first 5 days of a 28 day cycle. It will mean only one visit a month to hospital and no weekly blood counts so minimal medical intervention. Chemo is active so if we can get some cycles in to him (dependent on kidney function and bone marrow) it still may hit the active tumour.

I'm struggling to be honest. I'm so tired, I'm so sad for both my sons. It's so hard, all the time.

Haz I'm sorry you find yourself back here with your daughter. I hope she continues to tolerate the new drug. I also hope your fears of NF on top of everything else are unfounded.

Kinky glad to hear your DD is doing well. I get your 'funk' - it definitely is life changing for everyone. Hugs

P4B - hope Beezy's bloods settle so that the Hickman line can come out as planned. We were thrilled when DS's came out and he could have a decent bath and go swimming. Crikey - home educating whilst going through this. My SIL has 6 children and she is home educating the youngest 3 - no mean feat.

Trazzles - hope you, Joe and all the family are doing OK. Radiotherapy hit my DS very hard but it was on his brain and spine so don't know if it has different effects on the different areas.

Much love to everyone - keep strong xxxx

hazlinh · 10/06/2013 03:51

Praying4Beatrice, dd had her last dose of chemo yesteray but today she felt a bit nauseaus. The doc said it is a cumulative effect?? She was really constipated last week and they kept giving her lactulose and today she had two watery poos :(
She is having her mri in a few minutes. To rule out neurofibromatosis. Am not really interested to know. We already have this war to fight, don't think i can deal with another one. And it's not as if they have a cure for NF anyway.

Really hope your dd can have her hickman line out soon so she can a nice lovely bath! I can't believe you are home educating...you are amazing!

Minmooch, thanks I really hope she doesn't have NF. I just don't think I could cope. Am glad you had a good rest at least, although yes I can imagine it being very stressful at the same time. I really hope things get easier for you and DS and that you get good news and that the chemo works...

hazlinh · 12/06/2013 11:13

Btw, has anyone's dc lost their appetite during or after chemo? DD still doesn't want to eat much and it has been 3 days since her chemo ended. Am a bit worried. She doesn't even want to eat her usual favourite foods.

Trazzletoes · 12/06/2013 17:23

hazlin yes my 3yo has to be fed through a tube as he hasnt eaten properly since he started chemo.

Praying4Beatrice · 12/06/2013 18:31

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