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

Oh I totally agree re "deskilled". You put it incredibly well. All the emphasis on parenthood is that there are many styles and you so what works for you (with the obvious provisos). Suddenly you are catapulted into a world where you can ok longer make decisions and you have to refer to someone for the most minor of matters. I suddenly felt under a very strong spotlight. I remember telling Alex's consultant I was terribly afraid of doing something wrong, she said it was now my job to give him his medicines and call if I was worried, other than that it was to love and care like I always had.

And you don't sound moany or negative or anything like that, but even if you did you have a massive right to do so. Because it's all so fucking unfair and so fucking cruel.

I love Alex's little hug, and although I never wanted for him to qualify for one it was just so lovely to feel cared for in that way. I hope they bring much comfort xxx

ok longer = no longer

Brave- I can't take credit for your hug, I wish I could but I can't. I hope you feel as comforted by it as I did when Poppy's arrived.
I think you've expressed yourself so well in your post, and certainly summed up how I felt in the beginning. So many decisions are taken out of our hands in a way, and I had to put faith in strangers. It's quite disempowering. I think it effected me more than I realised at the time. I found I lost confidence in myself and the most basic of tasks when it came to caring for my daughter.
I hope you're feeling strong Brave and remembering to be kind to yourself too. Your posts don't come across badly at all. Feel free to express however you're feeling here, it's a safe place.

How are your renovations going twunk? Is the end in sight?

Nothing to report here, I'm glad to say. I'm up and down, considering talking to my dr but not sure if it could even help. We'll see. Hugs to all.

we're back in again. I'm beyond exhausted and just want a break from constant admissions and worry. ds has his birthday this weekend. I just long for a spot of normality for him :-(

Really sorry to hear that thenew-how is he feeling now? We're back in since this morning for chemo so can only imagine how you're feeling. It's bad enough when it's scheduled. Really hope you get home soon, you sound totally worn out, x

thanks brave. he's pretty sick this time. I've just had enough. sorry. feeling down. miss my husband and dd and hate these constant threats to his life reminding us he might not make it and looking around at the birthday parties and fun he's missing out on. He doesn't know what he's missing but it's just sad. this shouldn't be his life. teary rant over

Forgive me if this double posts, i just lost a long post again. Using the app on a broken iphone!

This is the right place for teary rants! And i am not surprised you're having one, when you have gone through so much and can almost touch the end of treatment. I hope abs and bloods and everything else kick in soon.

I hate feeling that this shitty life is the one i gave isaac, and that it's all he remembers. But he genuinely is happy. Not all the time! But far more than i am. And i'm sure it's the same with your lovely ds.

Thinking of you today

Xxx

(((((((Big hugs all round)))))))

It bloody well isn't fair. Rant away xx

Thenew-how is your DS doing? Happy Birthday to him, I hope you will be able to celebrate it in some form. Please rant away, it is all so unfair, x

thanks guys. it's been a scary few days. He's really quite sick. I won't give details as would identify but I'm getting greyer! I think he may have turned a corner overnight though! !! Here's hoping. I've sort of given up hope we'll be out for his birthday but I'm sure we'll make it special anyway. childcare for dd has been a total struggle this time. I really hope we're out v soon!!
hope everyone else ok. did chemo go ok brave?

How is everyone?

I have builders finding problems. Oh so many problems...

It's nothing though - water off a duck's back these days.

thenewnormal I hope things are much much better with you, you've clearly had a very hard time xxx

Hello everyone, hope you're all doing ok?

The new hope you're back home, brave I hope chemo went well, and twunk I hope the builders are not driving you mad?

I wanted to ask a question to everyone if it's not too personal. I wondered how you cope emotionally? Did you have people to confide in etc?
I ask because I'm not doing too great if I'm honest, but I feel I can't talk about it to anyone. My daughter is doing well yet I seem to be getting worse as the weeks go by... I even feel stupid writing this down as it shouldn't be about me it's about my DD. But, I don't know what to do with my thoughts and feelings right now. Thanks

Hi lovelychops, I'm sorry you're feeling like this. I think it is totally normal, as the parent generally you have to hold it together in public.
I think for me, I just blocked it out, and just dealt with logistics. I would say it really hit me 3-4yrs later.
Can you speak to your macmillan nurse? Or go to your GP and tell them how you are feeling, ask for help.
I have my husband to sound off to but probably still haven't really dealt with it and next week we are off to the long term follow up clinic for the second time.

Hi all,
We had a day of firsts yesterday-first blood transfusion, first high temperature, first neutrophils of 0, first unscheduled admission and the first time he seemed really sick since his diagnosis. He's been tolerating chemo really well up to now, in good form and still has most of his hair so I think we hoped that he would be the exception to the rule. A long, exhausting and sad day as this horrible disease reminded me again how unpredictable it can be.

Lovely I also think what you're describing is totally normal. There is a huge amount of grieving that is going on under the surface-grieving for a normal family life, for a normal parenting experience, for a normal childhood... I think it makes sense that the enormity of it all would hit, even when things are more medically stable.

I have good and awful days and have found that I need to be selective with the friends and family that I talk to-some are great, some not so much. I've found that most people can't tolerate hearing my worst fears and shush me when I really need to talk them through. I do find talkings things through helpful so if there isn't soneone in your personal life, maybe someone professional like 2tired suggested? Years ago, I used to work in an oncology hospital in that role and I do think people found it helpful to talk things through with someone independent from their family.

Myself and DH are mostly doing ok but there have been stressful times especially when we're coping differently. I was having an awful day recently where I kept imagining the worst so I decided to focus on a positive future image-now in my worst moments I try to imagine making a speech at DS wedding thirty something years from now. I imagine what he and his brother will be doing-it sounds silly but it helps. Lovely, there is that awful cliche of needing to mind yourself first to mind others but I think it's true. Please look for help if you feel you need it.

Sorry for all the waffling-this was supposed to be a short message-can you tell I've been deprived of adult company?

hi all
brave sorry to hear you're in with infection. the first time is so scary. I know people for whom infections have been the exception and for us we spend most of our time from day 6 to 21 in hospital. this time was harder as was day 2!! some infections they seem fine and you feel it's a waste of time and some floor him and like this last time I fear for the worst. I hope your ds is out soon. I like your visualisation exercise of te wedding. must try that!

lovely I'm so sorry you're very down. I have days like that and then good days. down days are normally when I'm most tired so sleep helps. have you spoken to your clic Sargent worker/lead nurse/gp. I'm happy to chat too. will pm my number.

hope everyone else is coping ok. ds still unwell. we're home but he's not eating and so tired. off for tests and check up today. hate the sinking feeling in my stomach that it's the cancer :-(

Oh (((Lovely)))

Alex is also doing well, in fact incredibly well - he's at school and his medication now is "chemo lite" - I am so grateful for that.

But…my head isn't where it should be. I think my brain is still recovering from the shock. I can only describe it as that. It's like it went through such a trauma it needs time to heal. And of course it's not over, we still have 15 months to go.

(((thenew))) hugs for you too. The treatment sounds utterly gruelling. You must be so tired of hospital and all the shit that goes with it.

(((brave))) the "firsts" are very scary.

Oh and the builders are excellent but slow and noisy. I'm going round the bend living in 2 rooms!

Big hugs all round...

Lovely I'm really glad your DD is doing well but I think it's natural to find it harder when they're doing okay. When things are intensive or not going well, you simply don't have time to think, it takes all your energy just to get through the days. I would definitely try and find someone neutral you can offload to. I saw a counsellor privately but you should be able to see someone through the hospital.

Brave sorry to hear what a tough day you've had. As others have said, it's so scary the first time these things happen. And everything seems so much worse when they are actually sick with it. I know what you mean about people shushing you. I remember in the early days just desperately needing to voice my fears, but nobody would let me say the words out loud. I love the visualisation - am definitely going to try that.

thenewnormal so sorry to hear DS is still unwell. Was so lovely to see you both Sunday and he seemed on really good form. Have everything crossed that it is just a virus or something making him feel unwell. Am only a few minutes away if you need me x

Twunk I'm really glad DS us doing so well but completely know what you mean about recovering from the shock. DS had his end of treatment scan a couple of weeks ago and thankfully was all clear, so he is officially in remission. Which is wonderful of course and I am so incredibly grateful to have got this far....He's doing so well, his hair is back completely, he's put on weight and he's full of beans. Everyone seems to think that's the end of it now.....and yet all I can see are years of torturous scans ahead.
Sorry I'm not always such a misery! It's lovely to see him doing normal 5 year old things and I am trying very hard just to take a day at a time and pack in as much love and laughter as possible with both my babies.

Hi Lovely
Sorry to hear you are so down. This might not help, but I think it's normal to feel the way you do. However well Isaac does, at the back of my mind I still imagine standing by his grave. I can't imagine remission at all.

This isn't for everyone, but i see the psychologist at the Marsden. I find this a useful way to voice my concerns without upsetting other people. She came to visit when I had his ops, she calls me at work, she responds to my slightly deranged emails! I've also found that there are some people who can handle being friends with a parent of a baby with cancer, and some who can't, and it's not necessarily who you'd expect.

At the moment, Isaac's twin has chicken pox. I am trying not to be terrified. isaac is fine, and cheerful, and seems to have decided to potty train himself.

Much love to everyone.

I'm not sure if this will make you feel better or worse Unbuckle but D is in remission and I frequently gave the same sort if thoughts . I just can't let myself believe we could be so lucky that this could be the end of it.

I thinks it's because (prior to this) my way of coping with things was to think of the worse case and make sure I can deal with it - I think my mind is trying to prepare me should the worse happen but of course in this instance I can't the worst case at all.

Sorry to hear I's twin has CP. I had a phone all this morning to say that 2 children in D's class have just got it so the nurse is coming today to do bloods. He only had them done yesterday and absolutely hates having his port accessed so will not be happy, especially as I promised him he didn't have to have them done again for a month.

How is I othetwise? How long does he have left? x

Isaac has had a jab today which gives him a fighting chance of avoiding the pox. His brother is v spotty indeed. Luckily the other 3 have all had it.

Nocake, thank you. I has had 7 out of 12 cycles of chemo. They are 3 week cycles, 3 consecutive days. As it's high intensity, it is likely to take more than 3 weeks a cycle, as his neuts take longer to recover. He copes amazingly well.

We're still in hospital and hopefully will get home tomorrow. It has been a rotten few days, his hair is coming out in clumps, he won't eat and has vomited everywhere. He looks wretched and I imagine he feels it too. Hate that I can't make this better for him. Hate all of this. He's so good but he just looks bewildered by all this and by how awful he feels. To cap off a crap day, the bizarre nurse who thinks I am luckier than her is back on tonight looking after him

((Brave))

Hope the nurse has developed some more tact since you last had her!

I found the hair loss hard - and I get quite teary if i look back at pictures from when i had hair. But he doesn't care at all, in fact I don't think he's noticed - he still tries to brush and wash it.

Hopefully they can bring the vomiting under control, and you can have a relatively peaceful night.

Don't feel bad for hating it. It is total shit.

God that nurse! I had forgotten about her! Us cancer mums are so lucky .

Alex had chicken pox so the doctor says "oh he will be immune". Everyone in the UK I know is checked for immunity but we're not. Let's hope he doesn't get it.

Brave I hope you're home soon with your little soldier.

Hair loss is awful - very upsetting. It's lovely when it grows back . When we were at the hospital yesterday there were other children seeing the haemotologists at different stages of treatment - 2 had hair like Alex's, just growing back - short but all the same length!

Alex's neutrophils are finally low enough so he doesn't need another increase in medication. And we don't need to go back for 5 whole weeks!

Builders are still here - progress is slow and not helped by rain. A couple of issues came up which set us back another 3 days. Still, the drainage has been completely sorted now.

I'm sure you're all pleased about that...