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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:
Snowyelephantshavewrinkles · 21/01/2013 19:21

hi mums I feel terrible, I work with a child with leukaemia and today he cut his foot on some glass in school.. due to low platelets he bled everywhere and now needs an x Ray tomorrow just feel like carp as I should have made him wear shoes.

Snowyelephantshavewrinkles · 21/01/2013 19:22

I know its not end of the world bit I do feel like carp about it, all the time he spends in hospital I now have made him make another trip.

Trazzletoes · 21/01/2013 20:44

Oh min snow is so evil. I hope you are managing to get around somehow.

snowy don't sweat it - nothing you can do to change it now anyway. If his treatment is anything like ours, an extra trip to hospital is nothing in the grand scheme of things. A minor inconvenience. I hope he's ok, and that you are too.

We're in tomorrow afternoon for pre-op and then the big operation on Wednesday .

DianaTrent · 21/01/2013 21:01

Good luck, Trazzle, you and your DS will be on my mind this week, I hope it goes without a hitch.

I hope you get through the bad weather without mishaps, min. Hugs to you and your DS struggling through it.

Try not to feel too bad, Snowy, unfortunately you can't avoid all accidents, especially if there are hazards lying around you wouldn't normally anticipate. Chances are he'll be just fine.

minmooch · 21/01/2013 22:31

Oh Trazzle I shall be thinking of you all on Wednesday. When my son had his op my friends and family came to the hospital to wait with me. It was excruciating but I gained some support from them being there. I don't think I spoke all day but they were there to hold my hand and talk around me. I hope with all my heart that Joe's op goes as smoothly as possible. Xxxxxxxxx.

Snowy as the others have said try not to worry. Accidents do happen.

Well we managed to get to school and up to the hospital for chemo today. DS has been very quiet, very miserable all day. The nurse rang back later as they are used to DS being chatty, charming and funny. Nice of her to ring but it also worries me if they are worried. He has perked up this evening after sitting together watching comedies. Hopefully he will be brighter tomorrow.

Love and strength to all xxxxxxxx

Lilymaid · 23/01/2013 15:35

Posting a link to the [[http://www.mumsnet.com/Talk/mumsnet_q_and_a/1665731-Macmillan-Cancer-Support-Q-A
Macmillan Cancer Support Q & A]] in case any of you haven't seen it.

Snowyelephantshavewrinkles · 24/01/2013 17:30

Hi all thank you for the kind messages he was indeed fine! Hope everything has gone ok today trazzle.

Trazzletoes · 24/01/2013 19:44

Thanks, yes, enough of the tumour is out and Joe is recovering ok. Hoping that he can start to drink a little tomorrow.

DianaTrent · 29/01/2013 22:28

Trazzle I am very glad to hear that, I hope he is still recovering well.

I hope your DS is having a good week, min.

Hoping all the other DC are doing well also.

Trazzletoes · 30/01/2013 06:09

Thanks Diana he was discharged yesterday. I think we are home now for a fortnight before high dose chemo (not certain though as Drs haven't said anything. At all. Frustrating!) but the surgery and recovery have gone fine. There's still a couple of little bits left inside that were too risky to remove but the surgeon was not too concerned about these. They were near his kidneys but apparently if the tumour was wrapped round his spinal cord they would leave that chunk rather than risk paralysis.

What I have only just found out about evil neuroblastoma is that, unlike other tumours that grow as a solid mass and push everything else out the way, it is like a particularly evil weed that grows and envelops blood vessels and organs so it is sticky and really hard to remove because you can't just take the whole lump out, it has to come out in slices to protect all the blood vessels. Evil evil evil thing.

I hope you and your DCs are all ok.

Kinky are you ok?

lougle · 30/01/2013 07:10

I've been lurking and posted as 'rareashensteeth'. My niece has cancer. A rare nasty one, too. She's been doing well after the first bout of chemo, but it's a high dose because of the type got. She's had to go back into hospital because she's got fever in neutropenia.

apart from CLIC Sargent, are there any other useful resources she should know about?

KinkyDorito · 05/02/2013 15:43

I'm sneaking in with a crafty bump.

I am having a very fed up time again. I will be back properly. Promise.

minmooch · 05/02/2013 16:53

Hugs to you Kinky hope things get easier for you soon. I'm fed up too! Xxx

minmooch · 11/02/2013 17:44

Fucking bastard cancer!

My darling, darling son has been so miserable the last 3 weeks. I think it is an acumulation of all the chemo, not getting a chance to ever really recover, making him tired, tearful, sick. Today was the first time in 3 weeks he has not been sick but chemo was this afternoon so I expect vomiting to start again tomorrow.

He has done a mock A level today. had a panic attack after, doesn't want to go to school ever again, doesn't want to go to uni, wants to run away and become a ski instructor or a walking guide in the Lakes (dear god he can't even walk out of our drive Sad).

This cancer is destroying the very being of my son and I hate it with such a force.

Please, please give him a break. Let him feel normal just for a little while. Give him time to just be a normal 17 year old.

Please, please give me the strength to help him through all this. My poor, poor child Sad

GarbledMessage · 12/02/2013 00:32

Minmoooch, have lurked here on and off and just wanted to give you a very unmn hug. You sound so at the end of your tether, I'm so sorry that cancer is putting you and your son through this. I hope that you both get the break you need soon. It's so fucking unfair that anyone has to go through what you are. X

minmooch · 13/02/2013 09:19

Thank you Garbled. I do feel at the end of my tether. Unfortunately it's such a hideous disease and the treatment is just as hideous and such a lengthy process. It all seems so unending and yet if I think of the treatment ending that is frightening too - he will either have not survived it or he will and we will have been left with lifelong disabilities that we have to, and are, adjusting too. But it is tiring - all the time.

I think my DS breakdown has been building for the last 3 weeks, I think now he has to accept that things are not the same for him, he is not going to wake up and be miraculously cured, and that the process of recovery is just plain shit.

I feel so alone in all this as there isn't really anyone who can understand (in my RL) as they don't live with it 24 hours a day 7 days a week. Blah blah.

Anyway, onwards and upwards. Today is another day, it can be better than yesterday.

GarbledMessage · 14/02/2013 20:28

It's a horrible, crushing realisation when you finally get that life is not fair, that things don't work out even if you do all the right things and that the good people don't always get their just rewards, even as an adult. It must be hideous for you to see your son realising it at such a young age. And all the way through you have to try and stay positive for him, have the energy to pick up the emotional and physical baggage he can't manage, even when you are exhausted and wrung out and scared yourself. I hope you have someone IRL who looks after YOU when you feel like you are losing the ability to get up and face it all for another day. X

minmooch · 15/02/2013 08:51

This reply has been deleted

Message withdrawn at poster's request.

Praying4Beatrice · 15/02/2013 17:12

This reply has been deleted

Withdrawn at the user's request

KinkyDorito · 18/02/2013 06:42

min I'm sorry he is having such a shitty time. Would coming out of school for a bit help? I know he is at Sixth Form, but these things can always be repeated and he has an excellent reason for doing so, if he needs to have some space from it all.

I'm okay, just so sick of all of it. However, we are on a 10 week countdown to the end of treatment. BM in late March, I think, to check it has definitely gone.

KinkyDorito · 01/03/2013 07:25

Bumping.

Trazzletoes · 01/03/2013 07:26

Gosh kinky I know it's not really the end but you're so near the end!

KinkyDorito · 03/03/2013 09:19

I know, which is great but DD is still going to have to keep going as she has massive iron overload and, I suspect, arthritis that will come out when she stops taking methotrexate. The chemo will be over, but we're still a way from being clear of it all Sad.

How are you getting on? x

TabithaMcKitten · 10/03/2013 11:08

Happy Mothers Day everyone :-)

I hope we all have drama free days and the opportunity to relax a little.

How is everyone getting on? We are having a good run at the moment and it's been heavenly. I really hope everyone else is ok xx

minmooch · 10/03/2013 12:54

Happy Mothers Day to everyone!

I had scrambled eggs and smoked salmon waiting for me when I got back from my dog walk! Had to grit my teeth every time youngest DS scraped my new frying pan with a fork but it was lovely to be spoilt. Eldest DS keeps telling me how much he loves me (bless).

We have had a few weeks away from school as DS gets over his panic attacks and accepts that his path is going to be different from what he hoped it would be. Hopefully he has agreed to go back next week for a couple of lessons - I just want him to not lose touch with school or his friends as it has been so important to him.

We have two more sessions of maintenance chemo and then we are into the unknown. Last chemo on 15 April. MRI beginning of May to see if tumour has gone, if not then there is a plan B but our options are very limited. Consultants are pleased with his progress and we have stopped his overnight feeds. His PEG will come out early April. These are all good signs but I am terrified. If he doesn't eat at least I could feed him down his PEG. The Drs would not suggest it if they weren't happy with his progress but its frightening none the less. Also looking forward to chemo finishing but frightened as well, if tumour still there will it aggressively start to grow once chemo stopped?

My anxiety levels have gone up so I have asked for help from GP and been prescribed low level antidepressants. Feel slightly angry at myself but after 8 miscarriages, stillbirt of my twin daughters,, DS brain tumour, divorce and a house move I think I probably could do with some help! It's been a shit 6 years to be honest.

I have booked a weeks holiday in May on my own in the sunshine. I can't really afford it but I need to escape for a week and charge my batteries up. All being well my sons will be on holiday with their Dad at the same time so I should be able to pretend to relax!

Hope everyone is doing ok. Tabitha glad you are having a good run - long may it continue.

Thanks for everyone.