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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.

Praying4Beatrice Wed 12-Jun-13 18:31:44

Thanks haz. We were in for a gazillion more blood tests today because Beatrice's haemoglobin is still going down. Apparently it might be down to kidney damage -- hopefully temporary.

Beatrice really lost her appetite during chemo. It was poor anyway, presumably because the tumour was so massive it was squashing her stomach and also restricting blood flow to it (the blood vessels were really stretched round the tumour). Yuk. She did eat some really surprising things -- esp smoked salmon and olives! I think it was the saltiness/strong flavours. So maybe try your dd on some things she wouldn't normally like IYKWIM?

(Beatrice didn't need a feeding tube but only because of breast feeding -- not an option for most on this thread I know!)

min hope the new chemo is tolerable. I'm so so sorry you are still so worn out despite your holiday. If wishes were horses...

Praying4Beatrice Wed 12-Jun-13 18:33:07

Sorry that could be a bit unclear. I mean, if my wishes could come true I would wish we were all out of this situation of course. I'm praying at least.

hazlinh Thu 13-Jun-13 16:18:25

Trazzletoes oh dear so sorry, hope it gets better for you and your ds..

Praying4Beatrice oh no. hope it is not kidney damage and if so that it is temporary. Ah yes she has been requesting the oddest things like mushroom soup. Not really something she would have asked for before.

Well the good news is that her appetite seems to be getting a bit better. She had mushroom soup twice today! Quite an achievement...

minmooch Fri 14-Jun-13 23:01:20

We have had a frightening afternoon :-( DS stumbled and fell at home hitting his head on the (carpeted) floor. He grazed his eyebrow but his vision went funny/blurry. He also felt dizzy and had to stay lying down. After a quick check with his oncologist nurse I called 999 for an ambulance as they wanted him to get checked at A&E. paramedic there within 5 mins and then an ambulance 10 minutes later. Poor DS was very frightened (as was I but youngest Ds was about to leave to sit one of his GCSEs so I was having to be very calm).

A check over at A&E and they said he was fine. Blurry vision was probably shock, fear, adrenalin all hitting his blood sugar level. All very frightening. He came home and slept for 3 hours.

It has made me very shakey and feel very vulnerable :-(

trulymadlydeeply Sat 15-Jun-13 18:17:02

Oh Minmooch, you are having such a rough time. I worry when I see your name at the moment - can't imagine what it's like for you!

I do hope DS is OK, and that youngest DS wasn't too fazed by it. And that you are calm and being kind to yourself.

Thinking of you so much, with love and hand holding.

X xx

minmooch Sun 16-Jun-13 17:26:30

Thank you Truly Both DS went to their Dad's on Friday evening for the weekend so I have self medicated with wine and chocolate! It was such a shame as we had had a good week and I shaved my hair off on Tuesday evening (for The Brain Tumour Charity) and we had been having a laugh about it.

I hope this week will be boring!

Praying4Beatrice Fri 21-Jun-13 16:04:37

That sounds awful min, what an ordeal. Hope you and DS have been able to put it behind you.

I'm struggling at the moment. Beazy's sleep is terrible -- just a 30 minute afternoon nap, grizzling most of the evening, then waking at 2-hourly intervals at night. And then she's grunting at me most of the day asking for stuff. I'm finding it so hard to summon up the patience and I just want a break -- but then feel guilty for even thinking that as I'm so very glad she's here.

The hepatoblastoma page on FB (!) is a blessing and a curse because the other parents talk of long term attention issues, neurological problems and of course the hearing loss which is so common after the chemo they use. So the fact that she's not talking yet really worries me.

Her iron levels are a third of what they should be so she's on iron supplements. Thankfully there's no evidence of kidney damage but iron that low can cause problems with brain development at this age.

minmooch Sat 22-Jun-13 08:39:54

Hi P4B I am sorry you are struggling. Being a parent is tiring at the best of times but when one of your children is seriously ill it is horribly, horribly exhausting. It is only natural that your normal level of patience is stretched to its limits - be gentle on yourself.

My son has just had his audiology appt and his hearing has improved significantly over the last year. One of his chemist could have affected his hearing. The chemo also slows down the bodies natural drainage so my son suffered a big build up of wax that was also affecting his ear drum. His drainage has improved and his hearing in his left ear (which was effected the most) has much improved. I hope that your suspicions regarding Beezy's hearing are unfounded or at the least temporary.

It is so unfair that these children have to face so many obstacles with the disease and then so many additional obstacles from the treatment.

My son has suffered bad kidney damage due to one of the chemist and I get terribly anxious when he doesn't drink (like yesterday) but at 17 years old it is hard to force him.

Are you able to grab half an hour to yourself to have a bath where you are not to be disturbed? I know how hard that is but I find half an hour in the bath is less stressful than trying to find time out of the house.

Keep strong - you are amazing and you are doing a wonderful job of looking after Beezy and your other children xxxx

minmooch Sat 22-Jun-13 08:41:13

Obviously chemist = chemos

minmooch Sat 22-Jun-13 08:42:16

And annoyingly I have misspelt Beazy's name throughout - big apologies xxxxxx

Praying4Beatrice Wed 26-Jun-13 22:55:17

Thanks min and no worries re Beezy!

She's had a virus so we had a brief foray to casualty with a fever. Now blood tests all over the place. Stinking haemoglobin but rubbish neutrophils; DH and the consultant think the community blood test was duff so we're in to hospital for tests tomorrow.

Line is due out Friday but I'll believe it when I see it with all the weird bloods. She is taking her iron (miracle!) but I can't believe it would take effect that quickly.

<waves> at everyone.

TabithaMcKitten Wed 17-Jul-13 18:05:33

Hello all

We've all been very quiet lately! How is everyone getting on? My DS is doing really well at the moment so we are enjoying a bit of the new normal. I've got a lot of health issues going on at present that I suspect are a throwback from last years hellishness.

I hope that everyone is ok. I don't post very much, but I do think of you all often :-)

minmooch Thu 18-Jul-13 16:08:51

Hi Tabitha glad to hear your DS is doing so well. Sorry you are not but I'm sure it must be 'normal' for us to fall apart physically about when the intense pressure is off. Hope you feel better soon xxx

As for us my DS is coping well with new chemo (Temozolomide) and he has much more energy, walking better, less fatigue, less sick. Just a shame it probably means the tumour is not being hit now. They call it quality of life care which he is getting but I now have different anxieties. Each time he is sick does this mean pressure is building, tumour growing, the end is nigh? He's in the best health since diagnosis but I can't relax and enjoy it as it is like a time bomb ticking, waiting to go off.

We managed a couple of days camping but had to give in and come home a day early as it was too hot! Can't believe I typed that but too hot! Anyway - DS is off sailing next week with the Ellen MacArthur Trust and he's looking forward to it. He and the other kids go without parents so I have to let him go - aaarrggghhhh. Great for him, bad for my anxiety!

It's too hot for super sensitive chemo skin but it seems bah humbug to wish it a bit cooler after the lack of sunshine this year!

Much love to all - hope everyone else is doing ok xxxxx

minmooch Fri 19-Jul-13 21:04:59

So my DS has gone to his Dad's for a couple of days. And I have got a horrible sore throat, my tongue is painful and I feel bleurgh. I don't seem to know what to do with myself when he's not here. I feel that we have almost become one person and when he's not here I don't know who I am. Does that make any sense?

minmooch Sun 21-Jul-13 11:57:22

I am so lonely through this :-(. I have good friends and family but they have their own full lives. I feel alone with the responsibility of it all. I can't enjoy times when my son is not hear - either I am too tired or it just feels plain wrong to want to be happy. I have forgotten what makes me happy anyway. I know how to make my sons laugh, even through bad days. I used to love reading but now I have no concentration to read. Some days it just all feels too hard. I'm losing myself in this illness and if I lose my son to this illness then I lose me too.

carebear13 Sun 21-Jul-13 14:08:38

Hi everyone.
Not sure where to start really so will give you all a quick rundown. My 4yr old dd has recently been diagnosed with t-cell lymphoma. She is 3 weeks into her second block of chemo and although she is doing really well, we just cant seem to keep her out of hospital. everytime she has a lumbar puncture and itmtx she gets some sort of infection! She has been so incredibly brave through it all i am very proud of her. i am going too try and read through all the posts on this thread, and i look forward to chatting to you all as we go through this 'journey'.x

Nocakeformeplease Sun 21-Jul-13 14:15:43

I'm so sorry for what you are going through minmooch - I've followed your story (posted under a different name though) and what you having to endure is simply beyond comprehension. I wish I could alleviate the pain and loneliness for just a moment. I can understand when you say your losing yourself in this illness - it is just all consuming isn't it.

I am at the beginning of the horrific journey. My darling 4 year old DS was diagnosed with a kidney tumour about a month ago. It is hell on earth, seeing someone you love so much suffering and not being able to 'fix' it.

I am always here, day or night, if you want to 'chat' or let off steam - feel free to PM me anytime. Much love and strength to you and your boys x

Nocakeformeplease Sun 21-Jul-13 14:22:26

Oh carebear our posts crossed. I am so sorry to hear about your darling DD. DS has been just the same regarding infection. His chemo is supposed to be weekly as an out patient but after the first and second chemo sessions he was hospitalised both times because of temperatures/suspected infections. Until Friday we had been in hospital for 15 days solid bar 12 hours after the 2nd round when he was discharged and ended up back there 12 hours later with another temperature.

He had the third round on Friday and we were allowed home after and touch wood we're still here, although bag is packed as fully expecting to have to go back at ant time.

minmooch Sun 21-Jul-13 15:04:46

Carebear I am so sorry to hear about your DD's diagnosis. She sounds very brave and you should rightly be very proud of her. I hope you gain much support from other parents going through similar with their children. It heplps me to have a place where I can honestly say how I feel without having to protect/shield others from the horror that is having a child with cancer. I hope you have good real life support. Xxxx

* Nocake* I am also so sorry to hear about your DS kidney tumour. You are so right it is very hard having to watch someone you love suffer. Living in hospital is very hard, frightening, isolating but at the same time when your child is so ill you wouldn't want them anywhere else and not to be with them.

I have lived this journey for 19 months with my DS and I still find the whole thing shocking. How could my son be so ill? It is devastating for your child, for you, for your family and for friends.

I hope for both Carebear and NoCakes that your precious children have a smooth ride through treatment.

carebear13 Sun 21-Jul-13 20:56:48

minmooch & nocakes- thank you for your kind words.
Minmooch- i have read all your posts and so many things you said struck me to the heart. its so hard to explain to someone who doesnt know what it's like to have a child with cancer, and in the hospital talking to other parents, its too personal and sometimes very hard, where as here its anonymous and much easier to say what you want without hurting someone.
nocakes- i remember the day we were told like it was yesterday, the sound of my husband crying next to me and clinging onto our dd2 is something i will never forget.
we are 12 weeks post diagnosis and it is frightening how quickly it all becomes the every day norm. we spent the first 7 weeks in hospital as although she was doing well to start with, the vincristine efifect was horrendous. she basically couldnt go to the toilet for over 2 weeks. during that time she stopped eating and drinking, was in constant pain, so much so that she was eventually given morphine to ease the pain, she would crawl up and down the bed trying to find some comfort, and in front of my eyes my darling girl started to shut down emotionally and wouldnt even look at me let alone talk. i couldnt even touch her as she was in so much pain. i am hoping that it doesnt happen again this time but she is on a much gentler dose this time round.

Nocakeformeplease Mon 22-Jul-13 16:48:23

Oh Carebear that must have been heartbreaking for you. I often feel that DS must think I am letting him down when he begs me to stop the nurses accessing his port or something and I don't sad. I really really hope that your DD doesn't suffer so much this time round. Which hospital are you at? How old is DD2? I have a DD who is 15 months.

DS is in good spirits at the moment and has started eating again which is such is a relief. I'm pretty certain he will end up with a feeding tube sooner rather than later though as he is already skin and bones.

Amazingly we're still a home - all being well he will have round four on Friday although there is a good chance his bloods may still be too low. I know it is common for chemo to be delayed but I hate any deviation from the original plan - I can't help thinking it will affect his overall chances.

Is your DS back now Minmooch? I can't bear to be apart from DS at the moment. He's even sleeping in my bed at the moment - probably not the best idea but its what we both want/need at the moment.

Hope everyone is is having an uneventful week.

minmooch Thu 25-Jul-13 21:52:11

Nocake I hope your DS is still good. My DS had a peg fitted (feeding tube straight into his stomach) for a long time. He's 6 ft 1 and just could not eat enough to maintain his weight. It certainly took the pressure off eating. He had his tube removed some months ago as his appetite increased.

He has been back from his Dad's but then immediately went on a 4 day sailing trip with the Ellen Macarthur Cancer Trust. I picked him up this evening but he has been too tired to talk. Hopefully tomorrow he will feel like talking. I have just been lying low these last few days.

Carebear how are you and your DD? I hope you are both ok.

Waving hello to everyone.

Keep on keeping on everyone xx

Nocakeformeplease Thu 25-Jul-13 22:59:02

Hi minmooch - I hope your DS had a good time. I'm sure he will be feeling a bit brighter and more talkative after a goods nights sleep in his own bed. I must be good to have home home. I don't blame you for lying low, it must be an incredibly difficult and draining time for you all.

That makes sense what you say about the peg taking the pressure off, I hadn't thought of it like that. Was he able to eat normally as well while he had it in?

My little one has had a good week so far, thank you. We're still at home - yah! And he has been eating well and in good spirits. He has chemo 4 tomorrow so that could all change. It's a combination of two chemos this time (it was three the first time but only one the last two times) so I'm not sure quite how it will affect him.

Hope everyone else is okay?

carebear13 Fri 26-Jul-13 15:08:45

sorry- been around much. dd was back in hospital again saturday thru to wednesday and then we had to take her back in last night but she should be home at some point this afternoon. it's driving me nuts. its so disruptive for everyone and cos she is 'well' when she keeps havin these viruses it is sooo frustrating.
feel so low at the moment, hubby is going back to work next week and i know he is worryin about that. we just seem to be tiptoeing around each other not saying what we want to for fear of upsetting each other.
financially things are getting pretty desperate- we have put a claim in for dla but god knows if we will get it or not.
really struggling with it all.

Nocake- brilliant that you are still at home,well done! hopefully he will remain well. my dd had a ng tube fitted as she stopped eating and drinking and tbh it was a huge relief. the only thing we can rely on her eating is curry and spicey chicken wings so she cant live off that, but she hated taking her meds and quite often we had to pin her down, but she has those down her ng tube too,so it really does take the pressure off us. it's not pleasant to have it fitted but its not a bad thing if it's needed.
we are at the LRI (leicester royal infirmary) and she is 4 (nearly 5), dd2 is 15 months and then i have 2 ds' 9 &15.

Minmooch- i hope your son is feeling a bit brighter and enjoying being back with you. it must be so hard to be apart like that for you both. my dd is always a bit subdued when she comes home, almost like she has to get used to everybody again.

big sigh: this is all so hard. what are we doing wrong that means she keeps having to go back in? is there something we should be doing and we're not?
hugs to everyone. hope today is a good day for you all.xx

Twunk Fri 26-Jul-13 18:08:27

I'm crashing in here because I have just discovered my 4 year old son has leukaemia. I am in shock. We were given the all clear 3 weeks ago AND this morning. But then someone checked and here we are.

We're in the Netherlands and will be going to Utrecht for treatment. Monday we will have the bone marrow checked but the doctor thought it was B-AML.

At the moment his platelets are normal but he has anaemia. He's having a blood transfusion tomorrow.

I don't know what to say. I just don't. I keep thinking they've made a mistake. But they've not, have they?

I have a 5 year old too.

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