Children with cancer

[KinkyDoritoWithFairyLightsOn]

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.

DD was on lots of morphine when she had neutropenic sepsis. She was in a lot of pain, even on that. She had a push button drip.

I'm really pleased results were clear Queen. How horrible about the little girl. It makes me feel sick that she was going through such a horrendous thing nearly alone. I'm surprised social workers weren't there for her more if parents were useless. As you say, what a life. I shall be thinking of her. So, so sad.

So sorry to hear about your DD's pain levels, Kinky, DD was on a morphine drip with a push button too, she called it "The Magic Button", bless her.

I can't get confirmation about when or if there will be a gold ribbon day this year, but have done a wee thread for childhood cancer/leukaemia awareness month here if anyone wants to put their tuppence in.

link

I hope you all have a very good weekend.

Went on FB to put up orange ribbon, and found out another child from hospital has died who we knew very well. She was there when DD was first diagnosed and her mum was really kind to us as she was there just after we were told.

So gutted. This seems endless.

Oh, Kinky I am so sorry . Sending hugs and and thinking of that poor family. What a horrid, cruel world we have all found ourselves in. When I think back to the little things I used to take for granted, it seems hard to imagine.

So sorry Kinky it's so heartbreaking to hear of the little ones who don't make it :-(.

Big day for us today - dc returns to school after a year out. He's going into 6th Form with his peers for a phased return. It's going to be tricky with his wheelchair and disabilities so I am going in with him until we ate all happy he is safe.

Dc has also won an award for Inspirational Young Person. A big awards dinner in London tonight. Patron is Prince Harry and we get to meet him followed by dinner, awards ceremony and entertainment. It will be terribly emotional.

I move house on Tuesday. Am exhausted by all the packing, I'm not good in a mess and the house is unbearable. However new start for us without STBXH for which I am relieved. I don't have to face his coldness, meanness and complete inability to empathize with the situation.

I am so tired yet here I am awake at 3:50 am. Hey ho.

Much love to all.

min I be thinking of your DS today. I'm sure he will be welcomed back and well looked after by both staff and students. It is very tough, seeing them go back in with peers, but he will be so much happier having a more normal life. Enjoy your dinner tonight - sounds brilliant! And the move. I think by the weekend you will need a nice, long lie down somewhere dark!! A new and better life. Love and luck for your new home xx

Back to work today and praying it goes more smoothly than my last year there.

I hope your DS's day in school goes great minmooch and everyone bends over backwards to make him feel welcome back and that he has a very well deserved, amazing and wonderful night tonight.

Hi Farlo
Studies show that morphine mixed with ketamine are amore effective pain relief mix. They can go on the syringe driver, and it minimises the effects of morphone - constipation etc. Paracetamol can also be given if needed.
I would alsways ask for that mix again, in the future - it worked wonders for us.
:-(

thinking of you all

Nipping in for a wave and hoping everyone is okay.

DD is doing her phased at 2 days a week. She's managed so far, although is looking a bit grey around the edges so I hope her counts hold up.

Just the 8 months of chemo still to go...

phased return to school

Good luck Kinky and all others on this thread.

My DS has his first post treatment blood count in 12 days time. I know in my heart he will be fine. There is just a little tiny bit of me that thinks they will tell me he has the cancer back.

He's been fine. Just a few spots because he's withdrawing from the meds. It's a tad hard as he is a Special Needs child and cannot express to me how he is feeling.

Much love to all. x

I know the SEN issues, it is very hard when they can't tell you.

I am sure you will be fine, but I will be thinking of you as I know it is still a worry.

Sending love.

Thank you Queen.

DD stood up in front of her class today with her gold ribbon on to talk about childhood cancer awareness day. Thinking of all of you today and your little heroes.

All the best with the blood test MsNobody. The first few off treatment I found very stressful too.

Aww Farlo that's so brave of her.

Today I have heard of 2 who are succombing, one to leukaemia nd one to medulloblastoma. Life is so cruel sometimes.

Bumping thread. Hoping, as always, no news is good news .

I am trapped at home with sick DS. Managed 2 weeks at work before things started to go tits-up again. DD came home with some back/breathing pain, which rings alarm bells with me as last time it became pneumonia. They think it is 'just chemo'. It always is until it gets worse. And, let's face it, everything is chemo.

DD has now had to go off to her dad's to get her away from the sick bug. DH used the last of his holidays (he hasn't had a real day off this year - all of it has been sick cover) to stay off with DS for 2 days, but he's still not well so now I'm off.

I'm worried we are once again falling into the illness cycle. I am so fed up, tired, guilty about parenting, guilty about work, worried about everyone and everything. I have a permanent headache and could do with locking myself in a darkened room for a month or two.

Kinky massive hugs. It must be so hard trying to balance work and caring for DD. There is nothing you can do about an illness but you shouldn't feel guilty. I know you probably will because I feel guilty asking for help from my family. Like I'm a burden.

Our week has been awful. 5 hours in A&E yesterday with a chicken pox scare/possible post-chemo rash. No-one could tell me for sure what is wrong. It's like starting the cycle all over again "well, we think he's fine. Take him home". A proper wibble from me because it was his first blood count following ending chemo. He looks like a spotted leopard and I'm checking his temperature every hour.

Oh no MsNobody that's awful. It's so worrying when they can't tell you what's up. I hope his temperature holds okay and it starts to clear up soon. The A&E can't have been much fun either .

Bump. No illness here but endless anxiety about radiation and long term effects. Really really sick making anxiety, no one understands. I am so tired I go to sleep and wake up at 3 or 4 every night worrying.

I'm sorry to hear that Queen. You need to go to GP or ring up one of the charities and have a chat with them about your fears. I think many of us will be suffering the anxiety and worry for years to come.

I know. i can't get drugs as am pg. But I can't go on, I jsut feel so crap all the time and my LO is really really hard work at the moment, i think maybe hormone issues due to radiation but they won't test that for ages anyway. It's just so hard, all the time. Feeling v low today, sorry for moaning.

Sending (very inadequate) hugs Queen. Try to be very, very gentle with yourself. I am happy to be moaned to if you need an ear. PM me x

Hi everyone, I haven't been on as a while. DD had another clear scan in August so we can breathe again for another few months.

kinky hugs to you, I find that when they go back to school they pick everything up. We are all coughs and colds in this house now since being back at school

queen congratulations on your pregnancy. Take each day at a time, that's how i'm coping at the minute and if you need to rest, rest. Is there anyone that can have you LO for a few hours?

Big hugs to everyone else

Sorry ihave been absent. 11 months in and I still find it hard to accept I have a child with cancer. :-(

queen I am with you onthe anxiety :-( I awake in the night and listen out for his pump (fed at night( to make a noise. I kid myself that if he had died in his sleep the machine would somehow know and not keep pumping food into him :-( if he is still asleep when I go into him in the morning if he does not move I hold my breath until I can see he is still breathing. When I leave him in the classroom and sit in my car waiting for the lesson to end I imagine all sorts of terrible things happening to him. I constantly check his eyes to see if they ate both reacting the same, I look at the back of his head to see if I can see a build up of fluid. The fear and anxiety are endless. The exhaustion overwhelming. It's a wonder I am able to stand at the begin g and end of each day.

The life of a mother of a child with cancer is heartbreaking, every single second of every day, there is no let up and no timescale.

To each and everyone of us a thousand hugs and the strength to carry on.

Xxxxxxx