Grandson has rare leukemia. Not sure how much longer I can hold up.

Oh God. That must be the worst thing. I am so sorry.

God bless you and your little grandson. And all your family. x

Apricity

mobster I am so sorry about your lovely grandson- I am thinking of you both.

Gonegirl, thank you. We were some of the lucky ones and I am so very, very aware of that.

Is there support for the families going through this?
Ask at the hospital - I think it would be useful to have someone to share this pain with, someone who has been there. It might also help him, his parents and even his sibling...

Sending love.

No wonder you're heartbroken, Mebster. That's tragic.
As the last poster said surely there are support groups for families. You and your husband need to stay strong ..

Just can't even begin to imagine what you are going through. I am so so sorry, and hope he will get better <3

I hope he is comfortable Mebster, poor boy having to go through this. Big hugs to you all x

What an awful thing for you all to be going through . Are there any services you could access through the hospital? Our Spiritual Care team is great at supporting families going through difficult times and offer a quiet area for reflection, and you don't have to have a religion to use them - maybe there something similar at your hospital?

Sending you positive thoughts and much courage

Having worked in Haematology/Oncology, I would just say that cure rates for children with leukaemia are really encouraging. I know it’s so difficult, but please never give up hope,
My heart goes out to you and your family xxx

Oh how awful for you all, I am so sorry to read this but hope all the support on here will give you strength.

I am wondering if the parents trust you so much that they feel you are doing such a good job by sharing the load. Perhaps you are better at finding interesting things to do with him than they are? It is lovely that they allow you to send so much time with him.

Last night on the local news there was a young lad in hospital for a long time and someone had provided a robot for his class at school so he could interact with them all. It was so lovely and made me cry. Does he manage to video call his friends, Skype, Facetime, WhatsApp etc.? Perhaps other Gns could think of different things which could entertain him?

Sending you all my love and ((hugs)) to you and your family at this sad time xx

I've been thinking about him all morning, feeling so ill, but so bored.

I've just joined Snapchat where you can put filters on your photographs, that might be fifteen minutes of 'techy' fun.

Not sure how many drips he has in, can he move his hands easily Mebster? Could you get him an old fashioned gameboy or Nintendo DS? Just for something different that he wouldn't normally use with his friends. My son learnt to read as he wanted to play his Gameboy.

When my husband was in hospital he liked to play cards and taught me every game he knew, I always lost ;)

I love the robot idea.

I'm so sorry, Mebster. I hope you are able to access some support services to help you through this ordeal. Thinking of you and sending love to you all. Xx

? send the whole family love and prayers

All good wishes to your family

Sending kindest thoughts to you and your family

I read about the Robot--would be marvellous for your
Grandson, Mebster. Keeping you all in Prayer+

Praying for your DGS and family mebster. I am so sorry.

Thanks for everyone's comments.
He has a T cell leukemia, which is harder to cure than more common types, but were hopeful. He had a bad reaction to chemo which resulted in a brain injury so he's now in a wheelchair and learning to feed himself again. He's been hospitalized for three months and we never leave him alone for even an hour.
I don't cry in front of him usually. Just once when I had to hold him down during an IV insertion. He was so angry with me and I just broke down. I let the medical staff handle the needle stuff now and leave the room.

Big hugs Mebster, keep hoping and being positive, it's so good you are focused on him, and not the illness.

So sorry to read of his bad reaction, glad he is learning to feed himself again, amazing recovery. I understand how upset you were holding him down whilst people hurt him. My son was injured and I had to hold him down when they glued his eyebrow back together.

xx

The brain injury from chemo caused his arms to be so spastic that he can't play computer games right now. He gives me directions as I operate controls. He didn't lose any mental ability at all, thank goodness, but it's very frustrating as he is quite intelligent.
I like the snapchat idea and will load it on my phone today.

The robot idea is lovely but his teacher rejected having any kind of camera or recording device in the classroom.

Now is not the time to indulge in your own emotion, now is the time to give that boy every support and love he needs

I was thinking the same thing Whitewave..

I feel for you and all the family, Mebster. What an awful thing to endure. I am sure you are all gutted.

I know from my own experience of sitting beside the hospital beds of my very sick children that you find the strength to paste on a smile and try to accentuate to positive. That is your duty now, and that of his parents; even though your hearts are hurting. There is another child who needs to be reassured by that strength too.

I really feel for you all, it's a terrible situation and I hope your little grandson recovers.