Children with Cancer

[Twunk]

The thread you neither want to join, nor leave.

We send our love to Minmooch whose son Will sadly died this week. Min, we hope you feel able to contribute to this or future threads when you feel able.

My son Alex, 4, was diagnosed with Acute Lymphoblastic Leukaemia on 26 July last year. I don't think anything can describe that moment when your world falls apart. You think of suffering, pain, and the very real possibility you may lose your child. Mumsnet has been a wonderful source of support and I have "met" some lovely people through these threads.

If you are in the same situation as us, or wish to show support please do join us. Sometimes people have questions on how to support a family who have just received a diagnosis - we are very happy to help.

Much love to all xxx

[Twunk]

Welcome Ekkie! Good to have you here. There is a group on Facebook (if you subscribe to such evil ) for parents of children with ALL. Let me know if you want the link.

[ekkiethump]

I meant joining not joking!
I was a member of ALL Facebook group but to be honest it made me too stressed hearing about all the possible complications. I was in the intensive phase then and it was all quite overwhelming.

[unbuckle]

Hi jobelly, thanks for your thoughts and wishes. I met a couple of families with bronchiolitic babies when i was having his ops, and it must be terrifying seeing your baby struggling to breathe like that.

Hi ekkie, glad you have found us, and that you're out of the intensive phase. Hopefully maintenance is more manageable? My son is on high intensity chemo and he is either having chemo, being sick or being so neutropenic we can't leave the house. Although we did make it to the park in the beautiful weather today . Hope everyone is home and enjoying the sun.

[lovelychops]

Hello ekkie (love your name by the way). Welcome. My daughter has ALL we're in the consolidation phase at the moment.
We're actually trying to decide whether to opt out of the trial she's on as it has such an impact on the next phase. It's hard knowing what to do for the best.
She had a temp this evening, went into hospital but we've escaped as bloods were fine and she's not neutropenic. Just going to keep an eye on her, bit more than usual if that is at all possible?!

Hope everyone else is doing ok?

I'm a member of the Facebook ALL group, it is a bit worrying at times! I'm thinking of hiding it for a while.

[lovelychops]

Meant to say, houseofmadness you sound like a lovely friend! I wish people had bought us food, we survived on crisps and chocolate for days. It was not healthy!
Perhaps you could offer to let people know the news and keep folks updated? A family member did this for us and it really helped. I got sick of repeating the same information over and over, even though people mean well it's draining x

[Nocakeformeplease]

I'm sorry you've had to join us ekkie but I'm glad you've found us and I hope we can support you along the way.

I know what you mean about the facebook groups. I can't bring myself to join the wilms one. I had a quick look on there once but inevitably zoned on on all the negative stories which really isn't helpful for me at the moment.

Hope you're all okay and managing to stay out of hospital. We've had a quiet week although I've been stressing about chicken pox and scarlet fever at school. As it happens I sent him back thurs and he was sent home within 2 hours as he had an accident and they assumed tummy bug. He's been fine since so I think it's just a side effect of the treatment.

[Twunk]

I have to admit for a while I didn't read the ALL FB group for the reason you mentioned - it scared the bejesus out of me. I think I might find it easier as we are not on the same regimens so I can't directly compare.

[HouseOfMadness]

Thank you for the advice mmmmsleep and lovelychops, it is much appreciated. I will make sure that I keep I touch with his Mum via text and will send little things (like letters, pictures) from my son. I don't want them to feel forgotten about whilst everyone else's lives carry on as normal.
My sons friend is in a hospital an hour from where we live and his older brother has said he will be there for months. Does anyone know if they let younger children visit - I'm thinking about my 4 year old visiting him if it is at all possible, if he is going to be there for a while X

[KinkyDorito]

Has anyone's child relapsed with ALL on here?

DD been quite pale for a few days now and feels very tired. She'd put it down to walking home from school, but she says it is getting harder for her to do. She's also getting frequent headaches.

I'm going to miss work and try and get her bloods checked tomorrow. feeling very anxious.

[Twunk]

Oh Kinky I think getting it checked is best. How long is she OT now? How often does she have blood tests?

The FB group has a number of relapse cases in it if you want to talk to someone more knowledgable than me. Shits daughter has had secondary AML (after ALL) and has finished 100 days after her BMT.

I truly hope it is not the case, and I will be thinking of you tomorrow. Everything is crossed for touch

[Twunk]

Everything crossed for tomorrow

[Twunk]

HouseofMadness you can probably call the ward and ask them about visitors as it depends on the hospital, the patient, the treatment etc.

[KinkyDorito]

Thanks twunk. She's a year off at the end of April. She has bloods done every 2 months. Last ones were in Feb. In last 2 weeks she's suddenly become tired very easily and pale. She's never been really fit after chemo, but there is a noticeable difference. Sigh.

[mmmmsleep]

good luck for tomorrow kinky xxx

[TabithaMcKitten]

Hi Kinky I think you are right to get her bloods done in order to put your mind at rest, but the likelihood is that she is just tired and pale due to a virus or the extra walking. The problem we have once we are in this horrible world is that we see danger in everything and automatically think the worst possible outcome (I decided my eldest child had neuroblastoma today because he had a tummy ache. It turned out that he just needed the toilet ). I hope it all goes well tomorrow. I know personally of two children who have relapsed - one has had BMT and has absolutely flown through it and the other is due to have BMT next month. Scary times, but please be reassured that they are doing well. As one of our nurses said 'some children just need a little extra treatment' xx

[unbuckle]

Thinking of you, kinky. It's hard not to see cancer everywhere.

Xxx

[Trazzletoes]

Hi kinky fingers crossed all goes well tomorrow. Where do you get the bloods done? We are in clinic first thing if you need a hand to hold.

Just in for a random check up since last time J was struggling with his legs. They are just keeping an eye on him. He's been doing pretty well so far though, thankfully. I'm hoping we can get a wheelchair for him as he still can't walk well or far but he's grown out of our pushchair.

Can't complain anyway.

Fingers crossed kinky

Soldier hope you're bearing up. Have they been able to confirm anything yet?

[TabithaMcKitten]

Welcome Ekkie!

My little boy was diagnosed with ALL in January 2012, so we have just over a year left on treatment (typing that I realised it is exactly 13 months today!) I used to be a member of the FB group but it started making me too anxious so I left for my own sanity! I actually do feel better now that I have done that, although I do miss some of the people.

I am sorry that you have had to join us, but I do hope you find it useful x

[DianaTrent]

Really sorry to hear that so many of you are finding the Facebook group hard going. I am on the admin team and would love to know if there is anything you think we could be doing to make it better, or if you think it's just the brutality of the disease itself that does it. Feel free to PM me if you would rather not talk here. One good thing about the fb group is the yearly meet up, I have been to a good few now and it is so lovely to meet up with others and for the kids to get to know others in the same position as them. DD loves them. Even if you don't regularly read the posts on group, it may be worth being a member for that reason alone.

Good luck, Kinky. I really hope all is well. I really hate winter now, so many minor illnesses manage to throw something at you which puts your heart in your mouth.

ekkie my DD was in the same position, low risk initially but then moved up a category due to high MRD. This was under the old trial though, so we were called high risk and we were on Regimen A not C. C was proved to be better for children in our kids position though so they renamed the risk group for the new trial to reflect the better results, I guess it seemed really misleading to call it high risk any more, although I feel risk is a rather odd and meaningless word to use. DD is now over 2 years OT and doing well even after the less effective treatment if it helps.

[KinkyDorito]

everyone.

Trazzle I'm hoping we will be there this morning; I need to ring them first to see if they will see her. They could make us wait until Thursday. I really, really hope not! I phoned the ward yesterday, but they said wait and try clinic. My heart is in my mouth.

There were other things going on with her during treatment and I always wondered if there wasn't more to it. I'm not convinced it is a relapse, but I'm still concerned that something else is happening with her. She is noticeably paler, although not totally white and washed out; she is also very easily fatigued which she has been for a while, but she had improved significantly and now it is going backwards. She told me that she's had to go and have a rest every time she walks, and that sometimes she feels like she can't move for a while. Because she is also autistic, it is very hard to get accurate information from her and she doesn't automatically tell me things.

[Trazzletoes]

Oh kinky that must be terrifying. I'm sure it will be nothing. Hope they will check it out for you today though. They should do. You would hope so anyway. Give me a wave when/if you get there - I'm the one with the DS who walks like John Wayne and the DD (2) who will be running around, destroying everything and then licking everything else

[KinkyDorito]

Aw, bless them both! It sounds like you're having fun!

[TabithaMcKitten]

Hi Diana

I surprised myself by how I felt about the FB group tbh, as I am usually very keen on fb groups. The only problem I had with it was that I was finding myself getting obsessed with every tiny detail and worrying about everyone else and I needed to protect myself a bit from it all and just focus on DS. Because it was on FB i felt like i couldn't avoid it all even if I tried so had to remove myself! I have made some good friends from the group who I am still in touch with though.

[KinkyDorito]

Was given the choice of waiting until Weds to see Dr and bloods, or today for bloods and Weds for Dr (right clinic) - depending on how worried I feel.

They have a way of making you feel like you are wasting their time with your panic. I probably will be. That doesn't stop me feeling very bloody worried!! It's strange as they deal with cancer, and many more serious cases than DD, day in, day out. I only deal with her though. If I waited until Wednesday and something was wrong - even though I really don't think it is - I would be so guilty.

The creeping doubt. I feel like it will be the wrong thing whatever I do. I'm going to get her checked and try and go to work after, especially since it looks like I will need time on Weds too.

I could do with a long rest in a darkened room.

[KinkyDorito]

Bloods are clear, thank goodness. Will need to keep an eye on her tiredness, but huge relief.