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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.

My dd Beatrice has either hepatoblastoma or germ cell tumour. Awaiting pathology for an answer.

Ct scan tomorrow to see if it's spread to her lungs.

She has a Hickman line in as of yesterday and I'm ultra paranoid about looking after it.

She is being amazingly brave and cheery.

I'm averaging 2 hours sleep a night. A week ago I was in blissful ignorance. Total cliche but our world has fallen apart.

We've got an amazing bunch of people round us supporting us and our other children. (we have 4 older ones.)

Every day feels like a year.

She is 15 months old btw. I thought her tummy felt tight last Saturday. DH examined her (he's a doc tho not in paeds) and felt the lump.

minmooch Sun 23-Dec-12 08:15:03

Praying4 - I am so sorry that your DD has been diagnosed with cancer. It is the most shocking and horrifying news. I am glad that you have good friends and family around you for support but we are here to give extra support should you need it it just to vent your anger/fear.

I too am lucky with my friends and family but I found myself protecting some people from the reality if what was/is going on so I have benefitted greatly from having a safe place here where I can say things as they are, write my true feelings, ask for opinions (although we are not medical it is still good to get the opinions if others going through it).

I wrote on your other thread about some top tips but can I also say to you that your DD will not remember this time. My son was 16 when diagnosed and was terribly ill through some of his treatment. The Drs and nurses kept telling me that he would not remember theses times and it is much worse/stays with the parent for ever. My son does not remember much if his time in hospital - we stayed for 5 and a half months - so that gives me some comfort. He remembers the good things - the people we met whilst in there and he had a fabulous relationship with all the nurses, Drs, physios and teachers. My sons lengthy stay in hospital was more due to Rehabillitation problems from the surgery to remove the tumour as it is in his brain so hopefully your DD will not need such lengthy stays in hospital.

I worried constantly about my sons Hickman line but it is something that you do get used to. Somebody gave me this top tip: when you want to bathe your DD out a latex glove over the ends of the 'wigglies' and secure with the medical strip. You then do not have to worry about getting them wet. Remember whilst in hospital the nurses will look after the Hickman line and when you are at home the community nurses will come out and clean and refresh the dressings for you. I never changed my son's once in all the time he had his.

I completely understand your feeling that every day feels like a year. Unfortunately it does feel like every second of every day passes so slowly. That is part of the shock. It seems to me most diagnoses of child cancer come out if the blue and it is terribly shocking to discover your child is so ill, especially if they seemed well beforehand.

It's also a horrible time of year for you to be dealing with this, as well as for your other children as at Christmas there is so much pressure to be happy. I am sure your friends and family will rally round to make it as good as can be for all your children.

I hope that you get your DD full diagnoses soon as it is easier to fight something that you know.

There's always someone around to virtually hold your hand through this.

Thank you so so much for taking the time min. I'll come back to this and try to take in your wise words. For the moment, I'm crying all over again...

DianaTrent Mon 24-Dec-12 00:17:23

Glad you made it here, prayingforbeatrice, I was just going to direct you here but I see I need to be faster off the mark smile. I know how lonely this all feels in these bleak, terrifying early days, but you are not alone. (((hugs))) and lots of good wishes for your LO. My fingers will be firmly crossed the news from her CT tomorrow will be good.

Hugs to everyone on this thread, I hope everyone has a calm peaceful Christmas. Much love to you all and your little warriors.

KinkyDoritoWithJingleBellsOn Mon 24-Dec-12 06:43:32

Praying I am so sorry that you have had to join us. If there is anything we can help with, please just ask. Between us all we have quite a range of experiences. Some things I have had to learn the hard way over the last couple of years, and I would love to be able to save another family some of the difficulty. I am praying for you today that it is good news from the scan. Remember to be kind to yourself and do what you need to do to get through this. Sending you and your family much love at this awful time.

I'm sorry I haven't been around much these past few days. My start back to work was pretty relentless, and then we had to pack as soon as I finished as we are attempting to stay with my parents for Christmas. DDs counts have been holding up nicely, but - entirely typically - as soon as we arrived at out destination, her temperature shot up and we ended up in the local hospital for over 6 hours getting tests. We thought they were going to send us home, but thankfully her counts have stayed up (which is a Christmas miracle in itself as last year even a sniffle made her neutropenic) and we have been allowed a course of oral antibiotics. She has a cold and an ear infection. Am really hoping the pills sort it and she gets to have a decent Christmas. She has no appetite at the moment and looks grotty - it is reminding me of two years ago and the Christmas we had when she had been really ill for months but hadn't been diagnosed. Some bad memories. sad

min I really hope you are feeling a bit brighter today - it certainly sounds like you have a lovely Christmas planned, I just hope that you start to settle into it and that the sadness goes so that you can enjoy your day.

Thank you also to all of the lovely people who have left us Christmas wishes; it is nice to be thought of smile thanks

Finally, as I get the joy of huge beige buffet prep for the next 8 hours for the annual Christmas Eve family festive extravaganza (that we had to miss last year, so I'm actually looking forward to it today... remind me I said that):

Wishing you all a peaceful and wonderful Christmas.

If you are in hospital, I hope you still manage to have a nice day, although I know it will not be the same. I am hoping that 2013 is kinder to all of us, especially our children. For those, awaiting tests, I hope Christmas works some magic for you and you get some good news - you deserve some.

Sending these, thanks these, and a lot of this grin

Jokat Mon 24-Dec-12 21:08:57

Hi everyone. I don't normally post on this thread as my dc are not affected by cancer, but I read it regularly. Words cannot describe how much I feel for you all and for your precious children. It is so outrageously unfair and heart breaking that anyone, let alone children, and you as their parents have to go through this kind of suffering sad
Just wanted to let you know that when I went to church with my DDs tonight I prayed for you and your children and I hope your Christmas is as nice and peaceful as can be under the circumstances. I hope with all my heart that the new year will be a better one. Much love to everyone x

Gearing up for first round of chemo tomorrow, can't sleep.

What to take? I bought a load of tunics/leggings to wear in case I don't make it into pj's. Got some ready meals and snacks. (the nurse told me that I'd get meal vouchers as bf but when I went to the office to claim them the grumpy lady said they were just for babies under a year, as if I was a) a weirdo and b) trying to rip them off -- grrr!). Haven't managed to get a mattress topper as per min's advice, maybe in time for next time. Got a book to write things down in.

Anyone know if the rooms in GOSH have DVD players as part of the telly? They mentioned a parents DVD loan service so I assume so.

Anything else I may have forgotten? (Bit late now...)

Southwest Thu 27-Dec-12 01:43:27

Hi ive spent far far too long in GOSH over the years so can remember there was a DVD arrangement in the rooms and if there wasnt some wards have one they can loan out. I never got to watch it but I cant remember why (I think maybe it didnt work)
as for other stuff to take how long will you be in for? how often will you get home?
an easy book to read or a couple of mags might be nice
cashpoint card
phone charger
I notice from your other post have a look at the Chapel and the chaplaincy team will provide you with lots of support so worth trying to get down there
there is an area on the ground floor towards the back which has lots of play facilities for patients and siblings.
I bet its packed usually and when we were there it did shut over the holidays but im sure you will like it as a family
Im deperately trying to remember the name but failing sorry.
Also try not to worry about the Hickman like others have said most of it will be looked after for you
will try and think of anything else but wishing you well for tomorrow

Southwest Thu 27-Dec-12 01:46:37

the book is really useful I used it mainly to write down what the Docs had said for my husband when he visited.
the Waitrose in the shopping centre opposite the tube (sorry I really have brain failure) discounts the food close to closing and is good for some variety

Southwest Thu 27-Dec-12 01:53:12

Brunswick shopping centre

dont forget Corams fields

Sainsburys opp High Holborn also good for food variety and discounts likewise the one further along Holborn

daisydancer21 Thu 27-Dec-12 09:38:18

prayingforbeatrice I noticed you are bf your baby...in my experience the medical staff have been a bit sceptical of how much good it does for a little one going through chemo. I have bf my little boy through 7 rounds of chemo so far, and the oncologists have seen the benefits so much that they have included breastfeeding in their teachings. If you want any help or support just shout (I know you have so much more to think about xxx)

minmooch Thu 27-Dec-12 10:35:39

Grrrrr for you Praying4 how dare they question you about bf your child? As if at this time you would have the energy to try and rip off the hospital that are looking after your child. Having said that all the rbs in the children's oncology ward up at Addenbrookes are shackled to the wall as previous sets were stolen - who would do that?

No bf advice from me as DS was 16 years old when we went in (would have been a bit David Walliams by then!) but if it gives your DD and you comfort then continue as long as you can. She may require supplements as well possibly but I am sure Daisy could advise you there.

List of other things? Dry shampoo? I spent 5 and half months in hospital with Ds and did not have the energy to wash my hair all the time. Dry shampoo was fantastic - and for him too although on our ward they had s shower cap that had shampoo in it - not sure if that was for adults but as DS older they let him use it - before we shaved off his hair.

Wet wipes for yourself - for too tired to shower moments. Once a week I would get a family member to come and sit with my son so I could go and have a proper bath - nurses would do that but I could have a longer bath if I didn't feel I was holding a nurse up.

Easy wash non- iron clothes. Should be washing facilities on your ward but I could not be buggered to iron. I had a washing rota with my mum - she would collect a bag on a visit and bring back on next. I would only wear dark clothing so mum didn't have to sort into darks and lights.

Take in lots of paracetamol/or other painkillers for yourself. I had a constant headache (through stress) and the nurses can't give to you nor could I buy any in the hospital shop.

Living long term in hospital you learn to live very basically!

Hopefully you will only have brief stays in hospital but certain things do make a difference. Hope it all goes as well as it can for your DD and you. Xxxx

minmooch Thu 27-Dec-12 10:37:18

Rbs? = tvs!

Thanks all, great advice.

We're in now and she's having a kidney test before starting chemo later.

Worrying news from home -- dh thinks our poor little 4yo has scarlet fever. It never rains but it pours... Worried about him and worried that it might delay chemo and/or Beatrice might get it...

minmooch Sun 30-Dec-12 09:17:52

Hello my lovelies. Hope you are all ok.

Just stopping in to send love and strength.

We have had a good few days. My DS walked the length if our high street two days ago with just the use of his crutch. He wanted to go to the barbers and was determined to walk there and back. He managed it and was so pleased with himself. It was the longest he has walked in over a year! He kept telling me how pleased he was just to walk down the street - bless him! He didn't seem to bad the next day either so he must be getting stronger.

My other son has had a cold and spent a day in bed - think he really just wanted me running around after him for a change! Chicken soup in bed for him!

I hate New Years Eve, find it very depressing, so having lunch with my cousin during the day and back home for a couple of films in the evening. The boys have gone to their Dads for 3 nights so I am being lazy really today.

Praying4 how is your DD coping with her first chemo?

min great that your ds managed to do some walking and be pleased with himself -- lovely. I know what you mean about NYE at the best of times... We've decided we're getting an early night.

Beatrice seems to have tolerated the chemo well, thanks. She was only sick once. She's quite sleepy and won't eat solids, only breast milk, but otherwise she's fairly happy. She cuddled a dolly for the first time today which we find ridiculously cute of course!

We met a lovely lady at our church today whose 5yo dd has neuroblastoma. Both of them were really inspiring -- so positive and full of beans. The little girl had surgery 2 weeks ago, was in intensive care for 4 days, but was running around today. Amazing.

Lilymaid Mon 31-Dec-12 16:42:34

Wishing all who have to frequent this thread all the best for 2013. I posted here a year ago today a few weeks after DS2 (then 20) was diagnosed with CML (Chronic Myeloid Leukaemia). Since then he has successfully completed his 2nd year at university, worked in vacations as usual and is now half way through an international year at a university in the USA. He's playing lots of sport, having a great time and will be skiing next semester.

Bone marrow test next week - so fingers crossed that he is responding as well as it looks from the outside. NHS has been great at scheduling his appointments around his commitments and in prescribing 5 months of his medication for him to take to the USA.

Just over 10 years ago, his prospects would not have been great and his treatment would have been as arduous as many of your DCs are enduring. Very fortunately for him a pretty effective treatment has been developed which works for most people with CML. So here's hoping for more developments like this for other cancers and for further steps to beat cancer for good.

missjemima Tue 01-Jan-13 00:17:24

Just wanted to send lots of love and good wishes to everyone on this thread. I've been lurking since early November when our DS2 5 months was diagnosed with Neuroblastoma.

I was scraping by each day as more news came through on his condition , was all very sudden and shocking. Neither DH or I have any family in the UK, so reading this thread over and over gave me so much comfort that I wasn't alone - although obviously wishing none of us or our kids were in this situation.

I just wanted to let you all know what a massive help you've all been to me...

Here's hoping for a brighter 2013, writing this from hospital bedside... Amazing how this puts everything into perspective isn't it?

Light and love x MissJ

Just wanted to wish you all a hopeful and happy 2013. I lurk but am not qualified to post.

But I do read your posts, think of you all, and marvel at your individual and collective strength. I know you have no choice but to be strong, but I wanted to acknowledge your determination and fortitude in the face of your unlooked for, changed lives.

Love and strength to you all for this year.

TMD xx

minmooch Tue 01-Jan-13 18:03:09

Lillymaid great to hear how we'll your son is doing. Fingers crossed tightly for his bone marrow tests. Is it a long wait for results?

MissJ I am so sorry your DS was diagnosed with neuroblastima. A diagnosis of any cancer in our children is terrifying, shocking and usually very sudden. I am sorry you have no family in this country but am glad that you have got some support from this thread. Please join in the chat whenever you feel able. Which hospital are you in? I hope that Christmas and new year were as gentle as possible for you, I presume you we're in for both - my son and I were in Addenbrookes last year and yes it does put everything in perspective. Sending you hugs.

Well I have had my first years if the year. I hate New Years Eve at the best of times and although I had a nice time with my cousin and his wife I left at 11:15 to go home before the roads get busy. Both DS were at their Dads. I felt horribly flat at midnight (in my car) and couldn't go to bed when I got home. A walk in the park today with dog in the bright sunshine I thought would make me feel better. But no, I felt horribly lonely, desperately sad at all that has happened in the last year, desperately sad that we just can't do normal family things anymore. Ah fuck it's all so fucking sad and I sat on a bench and cried my eyes out. My divorce should come through early January and I feel sad that my husband (ds steo-father) proved to be a spineless, cold hearted prick who has added to my sadness. What has happened to my life?

I feel like I have coped for the last year but don't know how I can keep coping. It's all so relentless and I feel so alone with it all. Both my sons are wonderful but sometimes I am so tired of it all. I am so tired of being tired. Blah blah blah - there is nothing that can change how things are. I'm just too bloody tired! And the boys have been away for three nights and could I sleep? No! Have I got sleeping tablets in the house? Yes! Did I take any? No! I don't seem to be able to even help myself. I want to just weep! And it's only the first day of the year!

I must stop rambling.

Love to all xxxxxx

Greetings to all.

min, sympathies on the sleeplessness -- that is sooo annoying. Btw I hope Addies is treating you well. I have fond memories of that place as my eldest 3 were born in the Rosie and DH worked there for a while. <irrelevant>

lisad123everybodydancenow Wed 02-Jan-13 00:26:20

Message withdrawn at poster's request.

missjemima Thu 03-Jan-13 00:26:07

Thanks Min it's all so rubbish isn't it? I often find myself saying out loud as I'm wandering outside 'I hate this, I hate it...' What upsets me most is I hate the person it's made me. I used to be such a laid back character, now if I'm not worried about temps spiking I'm worried about HB levels, or vomiting or remembering meds etc etc. I have another DS who is 5 and he's coping well, but I worry about him too, is he jealous? How upset is he when I'm not home to put him to bed? Does he worry too? Am I expecting too much of him? He's still little but has grown up so much over these last few months.

We're home now, we were in Addenbrookes - Only for a week, so had Christmas at home. Our last scan results just before Christmas were really good, consultant is hoping one more chemo session should kick it with no need to operate. So this 'journey' might be over soon. We feel so desperately lucky, but unlucky at the same time?

I just want to feel normal again, we've been through the mill. Local hospital, ambulance, PICU, a week to diagnose, scans, biopsies...poor little mite.

Sorry, just needed to vent. Hope you're all doing OK. X

KinkyDorito Sun 06-Jan-13 08:59:17

Sorry for absence: bad Christmas with DD being really unwell, but able to stay with us on oral ABs. Unfortunately it has built up to a raging infection. Now back in hospital - 2 days of fever temperatures, vomiting and being really poorly. They know it's an infection of some kind, so are just trying to work out what it is. On IV antibiotics now so just hoping that she settles down today.

Feel pretty shit atm.

sad

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