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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.

GreatExpectation Mon 15-Apr-13 19:32:03

Hi all! All going ok here. B is still tolerating feeds. He's a bit more sleepy and occasionally seems uncomfortable, but it's so hard to know what's going on/where it hurts with a 4.5 month old! He had his stem cell infusion today and now we're waiting for the counts to drop and side effects to kick in. It's pretty scary, you just don't know what you're going to get. Every time they take his temperature and it creeps above 37 I get jumpy! I just have to try and distract myself. Been playing endless scrabble and candy crush.

My sister was here from Australia for 2 weeks but she left today hmm. She was a huuuuuuge help.

Trazzletoes Tue 16-Apr-13 11:32:02

GE glad he is still doing well. You are doing brilliantly. I'm sorry your sister had to go home today.

min great news about coming to the end of DS' treatment but I completely understand how frightening it must be for you. Really hoping you get some good news.

As for us, I was slightly mis-informed last week. The growths are likely to be in Joe's skull rather than his brain, which is something, I guess, though they are no less deadly. Now we need to get all the information we can from the scans still to come and then choose the treatment option.

How's consultant has made it clear, though, that although there is a tiny possibility he can be completely cured from here, we really are just looking at ways to prolong his life, if we choose to do so. And it may be possible to do that for a couple of years but the cancer will almost certainly come back and get him in the end.

I just don't know what to do. I'm so angry that my little boy is being taken away from me. That he isn't going to go to school, get married... He's too young to even leave a mark on the world, it will only be in our hearts. I'm so angry.

louismummy Tue 16-Apr-13 11:36:54

trazzle, you have every right to feel angry. My heart goes out to you and your family.

GreatExpectation Tue 16-Apr-13 11:46:16

Oh Trazzles, it's just an unspeakably difficult situation. I'm so sorry. It's just not fair at all. Xxx

DianaTrent Tue 16-Apr-13 12:05:52

(((((Trazzle)))))
This is as unfair as it gets, you have every right to be angry and lots of other things too. I'm so sorry you are in this position. There are no right answers here, but we're here no matter what comes or how you choose to navigate your way through this. I just wish things were so different and you had much better options on the table.

Andro Tue 16-Apr-13 12:50:41

* He's too young to even leave a mark on the world,*

In this Trazzle, you are wrong. Joseph has left a mark on the world and will continue to do so every day he lives. He has left his mark on his family by his existence, through your threads on here he has left his mark on all those whose lives have been touched by his journey...through your strength his fight has helped others facing the same heart breaking fight.

You're hurting and angry and you have every right to be, but Joseph has made his mark...just not in a way anyone would ever wish for.

Jaistarmum Tue 16-Apr-13 21:28:22

Trazzle - a child is never too young to make a mark on the world. My son passed away from cancer aged 2 & he has made a massive impact on so many lives, some of those who never even met him. Sending you big hugs xxx

minmooch Tue 16-Apr-13 23:08:15

Trazzle it is all so horrid. It's hard to know what to say really. I guess the two spots being on the skull are better than being in the brain but that is little comfort. With my son if he beats his brain tumour the treatment he is on will most likely give him a different cancer which cannot be cured. The decisions we have to make are horrendous but we make them with our child's best interests at heart.

But the anger is horrible. I am so angry that my child, your child, all the children on here and elsewhere, are having to go through all this just to have a chance at life. I don't know if I will ever be able to get rid of the anger.

But your darling Joe has made a huge impact on the world. He is an inspiration with how he has coped with all the treatment. As is my son. But what would we give for them not to be inspirational in this way? For them to be normal, boisterous, cheeky boys with their whole lives ahead of them. It is so incredibly unfair for them and for our families.

Sometimes it makes me cross when people say how brave I am, how strong I have been. What choice did I have? My son had no choice in getting cancer. The only choice I have/had is to help him through this, not to break down in front of him or my other son.

I'm rambling now but my thoughts are with you and your family. Xx

minmooch Tue 16-Apr-13 23:15:30

GE I am glad your little one is OK for the time being. It is very scary but the Drs will know what to look out for with regards his symptoms. I'm sorry your sister has had to fly home, I hope you have other support. Xx

Jaistarmum I am so sorry about your son. Big hugs.

GreatExpectation Tue 16-Apr-13 23:20:48

Thanks Min- I know exactly what you mean about people telling me I'm brave. It's weird isn't it? I guess a lot of the time people have no idea what to say.

Thinking of you a lot Trazzles xxx

KinkyDorito Wed 17-Apr-13 17:38:09

Trazzles sad sad sad sad I couldn't come to see you when I was in with DD as I was absolutely full of hideous head cold. We had to be isolated upstairs! I didn't want to pass things on. I'm so sorry to hear that's where you are at. Just awful. If you ever want to meet up for a chat, please get in touch. Are you still in hospital?

In light of this it feels strange to be coming here to tell you it is DDs last day of chemo. She still has a way to go with low immunity and too much iron, but I'll be so pleased to get rid of the meds. I am praying this is the end of it.

Jaistarmum Wed 17-Apr-13 21:58:52

Thanks minmooch

I know what you mean about people saying how brave we are. I just feel like saying "what choice do we have?" but I usually just end up saying "well, it's sink or swim". If we broke down in front of our child then how would they feel, it wouldn't help them. My son was diagnosed at 20 months & passed away aged 2 yrs 2 months so he didn't understand what was happening so I found myself doing crazy things like singing, dancing & doing crazy things to make him laugh, even though it was so hard at times.

It's only normal to feel angry, I never felt as much anger in my life as I do now and I've always been such a calm person but I just keep asking myself "why did he have to get cancer, why did the treatment have to destroy him?". That's the hardest thing for me to understand is that he was clear of the cancer when he died but the treatment proved too much for his tiny body & he developed an infection due to his low immunity.

When I see other children the same age as he would have been I just wish he was here too having fun.

My thoughts are with everyone still living with the cancer nightmare x

Trazzletoes Wed 17-Apr-13 22:28:37

jaistar if not, this may be a little odd but are we already in touch? Was your DS at the Lgi too?

I'm so so sorry for your loss.

minmooch Thu 18-Apr-13 12:34:22

Jaistar big hugs. The whole thing, diagnosis, treatment, loss or survival is just terrible. I have not met you or your son but I will think of your son.

Kinky - wow! Last day of chemo - fan-bloody-tastic! I know it doesn't end there but it's a big step. I expect there is a whole gamut of emotions which will take time to process. But it's amazing that your dd has navigated her way through 2.5 years of chemo. Much love to her and your family xx

KinkyDorito Fri 19-Apr-13 06:06:22

Thanks min. It's a relief to leave it behind in the respect she should start to have more energy. She managed 2 days at school last held term - it has made her so poorly. But there will always be the fear, I think.

Keep on keeping on wink

Jaistarmum Fri 19-Apr-13 18:18:21

Trazzletoes - yes we were at LGI from April 2012 until he passed away in October 2012. X

minmooch Mon 22-Apr-13 17:42:36

I just want to vent really .........

I am so tired, all the time, every day, every minute. Today I am exhausted. Today I am feeding the kids crap food because I just cannot summon the energy to either go out and buy something better or cook something that takes energy.

It is so tiring trying to be everything to my son to help him get through this. I just want some energy to do it every day. I cant remember what it feels like to wake feeling refreshed and looking forward to the day.

Just needed to get it out somewhere.

minmooch Wed 24-Apr-13 19:36:16

I feel like one of those street jugglers whose sidekick keeps throwing extra balls in. Except I am terrified of dropping one and there being terrible repercussions.

My youngest DS has had to witness his older nrothers's illness. Now his best friend is suffering from depression and threatening to kill himself. It's too much for my son to have to deal with in his young life )I have spoken at length to said child's mum to make sure she is fully aware of what is going on).

I am tired, tired, so very tired :-( and yet I am manic - painting bits of furniture here there and everywhere - as if that will help!?

I need strength and to look out for my sense of humour because it has been gone walkabout for a long time now!

Sorry to have been off the thread for so long. I'm reading but not able to post very much.

min, I'm so sorry you're so exhausted today. Don't beat yourself up about the crap food. It does absolutely no harm every so often -- in fact, it does good if it means you get a tiny break. I'm so sorry about your youngest ds's friend, too. Poor boys, all of them. I wish I could make some magic suggestion that would actually make a difference for you. I can't, but I'm listening.

Jaistar I'm so sorry for your loss. Words are completely inadequate.

Kinky great news that chemo is over! Hope your daughter's blood counts improve quickly.

GE how is your son?

Trazzles thinking of you and Joe and praying for you every day.

Here we are waiting for Beatrice's end of treatment assessments. She has ultrasounds, chest x ray and kidney function tests next week, and MRI at some point when a slot comes up. Meanwhile her magnesium level is constantly dipping and she is extremely resistant to oral medicine... Am really hoping that it will improve so that her central line can come out. But otherwise she is doing well.

DianaTrent Tue 30-Apr-13 16:59:28

Just to wish everyone well and to say we are just back from Malcolm Sargent house in Prestwick and if any of you haven't been yet I thoroughly recommend it. You can get a cancellation at pretty short notice so it's worth a try for this summer. DD had a really wonderful time and got loads out of being around so many other kids who have been through the same.

minmooch Wed 01-May-13 11:07:59

P4B hope all assessments are giving good results and that Beazy's magnesium levels are doing what they should.

Diana I have looked at that house but my DS is reluctant to go anywhere too cancery, if you know what I mean? At 17 it's a difficult age to fit in anywhere.

As for us - I have a sinus infection, a streaming cold, terrible hay fever and the worlds heaviest period with accompanying tummy and back ache. BUT I can't complain because how can I feel anything like my son does with a brain tumour? I'm also shit scared if passing my cold on to him - we are 3 half weeks away from holiday and I don't want his bloods to do anything strange.

My DS is low - we are in limbo between end of maintenance and waiting for scan next week to see what's happening. It's very hard on him emotionally.

Bastard cancer sad

justdoingmybit Fri 03-May-13 13:01:08

Hi, I just put a film on youtube about central lines, basically because some families weren't being told by the doctors that they had a choice of Hickman line or port. Its different depending on which hospital, and that's just not fair. https://www.youtube.com/channel/UCkNE_UjPe736LwXvAbXlz3w?feature=guide

minmooch Fri 03-May-13 15:15:33

I could weep with the unfairness of it all. My poor DS not only has to suffer all the side effects, disabilities etc but his hay fever has come back so bad (chemo has wiped out any immunities he had) and his poor eyes are so red and swollen he can barely open them.

Please give him a break sad. He is so precious and complains so rarely.

KinkyDorito Sat 04-May-13 20:12:59

Hayfever sad. It never bloody ends for them. I hope he settles down soon min. I know what you mean about being tired to your bones. This floors you.

Keeping fingers crossed for good results Prayingfor.

Love to everyone, as always thanks.

Queenmarigold Sat 04-May-13 21:04:39

Hi everyone, how are you all doing? Ok ish here tho noticing long term effects of radiation now. Heart breaking. Dc just seems slower mentally than peers. I feel like cancer treatment stole our future. hmm

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