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Original poster

Who's up? I need someone to hold my hand

95 replies

aloneinthenight · 09/07/2019 01:42

We have just found out my son has leukaemia.

I'm in hospital with him, DH has gone home, I don't know what to do.

I can't sleep, I can't do anything. I can't cry because then I won't stop.

OP posts:
dreichhighlands · 09/07/2019 02:44

Oh OP. My heart really does go out to you.
My ds's best friend at school had this illness when younger.

cannycat20 · 09/07/2019 02:46

How are you doing? Hang on in there. The cry and the cup of tea will have helped a bit.

Just another couple of hours and there'll be a lot more staff about and they'll be doing their morning routines and bringing round the tea and the toast and doing observations and things and reassuring you - the NHS takes a heck of a knocking but it is here for you, and in my experience most people wouldn't be on the nursing side of things if they didn't care and want to help as much as they can.

It sounds like your son is a fighter (in a good way) and you've said he's a strong lad too. Care to tell us about the adrenaline thing, obviously without being too outing, as they say?

Merryme · 09/07/2019 02:48

Messaged you privately. So sorry you are going through this.

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TheRugbyValkyrie · 09/07/2019 02:49

Hello my lovely
I'm sorry that you've had this news. As others have said, he is definitely in the right place.
You say your son is 13? So is my youngest and I imagine that your son (am I allowed to ask his name or nickname?) is full is the same banter, silly jokes and endless chat about his favourite computer games.
What are his hobbies? Does he play a sport? Has he got lots of friends?
Do you have other children?
Write down anything and everything you can think of to ask the medical team. Ask to be put in touch with support services, so the whole family gets support.
You and your husband must also make sure you both rest and look after yourselves.
Please accept a big hug xx

Nat6999 · 09/07/2019 02:56

Do you have anyone who can be with you all tomorrow who can do the listening when you see the consultants? You will probably feel like you are bombarded with information, have lots of questions that you want to ask & maybe someone who isn't quite so close would be able to take more in? I cant imagine how you are feeling right now, all anyone wants is for their children to be healthy & this must be like being hit by a bus. Is there somewhere you can go & make yourself a hot drink? You will need your energy tomorrow & even if you only get a couple of hours it will help.

BlameItOnBianca · 09/07/2019 03:00

Hi there OP I'm awake and was going to come and give you a hand-hold anyway and read the reason why you're awake. I was also 13 when I was diagnosed with ALL back in 1994.

It will be tough but the treatments now are SO much better than they were, although of course that is probably little consolation to you right at this minute. My parents had to take things one day at a time and it will be tough but you can do this, you all can. I'm happy to answer any questions you may have. I'm still here, almost 25 years to the day I was diagnosed living a completely normal life, but stronger for what I went through. Flowers for you, one day at a time.

Pandamodium · 09/07/2019 03:07

Oh OP my heart goes out to you. I've done the whole child in hospital, babies in neonatal as apposed to an older child but I remember the lonely hospital nights all too well.

The doctors being positive can only be a good thing. Echoing a previous poster you need to sleep and eat even if it's only a little and keep your strength up for your DS's sake Thanks

Original poster
aloneinthenight · 09/07/2019 03:12

Thanks bianca that's so lovely to hear.

I'm going to have a lie down.

OP posts:
Messyisthenewtidy · 09/07/2019 03:24

Oh OP, I’m so sorry. This must be devastating.

It’s so hard but try to think positive. Look at Bianca who is living a normal life 25 years later. As she says the treatment is so much better today.

My thoughts and prayers for you and your son tonight Flowers

SnowsInWater · 09/07/2019 03:40

That really is every parents' worst nightmare. Sending virtual hugs, xx

Ifeelinclined · 09/07/2019 03:43

Oh, OP. I'm so sorry. I can't imagine how scary this must be. I'm here with a handholdThanks

StoppinBy · 09/07/2019 04:05

My nephew was diagnosed at 3 with ALL leukaemia. He has just officially gone in to 'cure' stage, so 5 years in remission.

It might not feel like it at the moment but there is definitely hope. I truly wish for you the outcome that we have had xx

CocoLoco87 · 09/07/2019 04:51

Hope you manage to get some rest. So sorry you're all going through this Flowers

tryingtobebetterallthetime · 09/07/2019 05:15

Please try to get some rest and if you can't sleep try visualizing something you find soothing. Quiet time with your eyes closed is not as good as sleep but it helps. Stay hydrated. Eat even when you don't want to, even if t is just 1/2 a sandwich. You are an awesome mother and your son will be getting strength from you. Stay focused on dealing with this and moving forward. It will be ok.

Hugs.

MrsWilkinsonAthome · 09/07/2019 05:22

We know 3 families whose sons have had leukemia. All completed their treatment several years ago and are thriving.

You have a long hard road ahead but there is hope and the fact the doctors are being so positive is a good sign.

Original poster
aloneinthenight · 09/07/2019 05:46

These are the stories I need.

OP posts:
MyGastIsFlabbered · 09/07/2019 06:18

Oh OP I'm sorry. I can't offer any stories but I'm another hand to hold.

MrsMozartMkII · 09/07/2019 06:23

Unfortunately no stories from me, but a strong and gentle handhold lass

OneOfTheGrundys · 09/07/2019 06:26

My mum had AML and is with us 16 years later. My friends DS had it 6 years ago and is in total remission.
Treatments are fantastic, even better now than then.
This is the bit that has to be endured. Life will become normal and bearable again. Just keep going. I hope you had a little rest.

Original poster
aloneinthenight · 09/07/2019 06:56

Thank you - we'll see what today brings.

OP posts:
AlwaysCheddar · 09/07/2019 07:00

That’s awful. Thinking of you and your family .... hopefully they have caught it early.

AllTheUserNamesAreTaken · 09/07/2019 07:02

I’m so sorry op, can’t imagine how scared you are feeling right now. Hope you managed to get a bit of sleep Flowers

Awks · 09/07/2019 07:04

My friend and I had babies on the same day. Her son was diagnosed with leukaemia aged 3. He's just got engaged last weekend, aged 27. Treatments are very sophisticated and there is so much hope and positivity now. Much love to you all x

Impatientwino · 09/07/2019 07:19

So sorry this has happened to your family OP. A long road ahead of you but my suggestion would be to try and think one day at a time at the moment.

Another positive story here. Our good friends son was diagnosed with ALL at 11 discovered in identical circumstances to your son.. He is now clear of treatment for a few years now, just the occasional check up. He is a happy, cheerful 18 year old with a girlfriend, a job and an attitude Smile

They have been through so much but they found a way just like you will. Be kind to yourself Thanks

Greenteandchives · 09/07/2019 07:28

Thinking of you OP. I was in the same situation as you and can remember that day as if it was yesterday. Your life is turned upside down, and is never the same again. My son was diagnosed as a baby, years ago when treatment was very hit and miss, but we had wonderful care, good experiences and made lovely caring and supportive friends. So much work has been done to improve treatment. One day at a time, OP. Flowers

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