Mumsnet Talk

Glad to hear ds is ok.
You are a lovely lady ua, a wonderful mother. Wishing you strength x

Well done to UA and young Master UA. Glad that he is doing well.

I'm still reading! I regularly have a little check on your thread for updates, don't stop. So great to hear how well he's doing.

Another lurker here…...great to hear he is doing well.
x

thanks Pioneers (am up as got to give him his tabs) x

UA glad to hear your DS is doing well, I've been lurking but haven't posted before. I hope chemo goes well on Monday and the trip to the hospital isn't too stressful

Ds doing well. Had Lumbar puncture on Monday. Bit of pain in his back but otherwise ok. His blood counts have been really good.

He's got intravenous chemo on monday - so all good.

He's continued on full oral chemo with no breaks since the week in hospital.

We went to Boscastle to see friends today. He tires and can't possibly keep up with his mates but we have a nice big mclaren disabled buggy. He ran around a lot, threw skimming stones, had cake, etc.

At the lumbar on Monday he was amazing - not a singly sound when they accessed his port or de-accessed it either. First time that's ever happened. Bought him Thumpback (skylander giant) from sainsbos. Thanks if you're still reading.

Wishing you strength and luck on this long journey. There is light at the end of this very dark tunnel x

UA so glad to hear your DS has great results to start more therapy.
Could you get Nurse/Consultant to write letter of support to council to get moved faster to the area of the hospital...ask your MP to help too.

Glad to hear from you, and glad ds is doing OK. I think of you often.

thankyou x

Glad he is full of beans. Wishing you strength to keep dealing with it all.

Ds's bloods good today. He's full of beans. Jolly. But (after our week in hospital) his now-recovered blood counts mean we start back on all the oral chemo from tonight.

Got to wake him in a moment to give 60mg of mercaptopurine. Methotrexate on weds...then septrin at the weekends again..lumbar puncture next week and hospital for vincristine.

I love him so much. So very much.

Ua, glad to hear your happy news about ds. If you do move, maybe some mnetters will help you out?
['] candle still burning here for you

UA, so happy that things are looking so good. Xmas sounds great. A move could be really good, starting a new life etc.

Good luck.

A move - if you can manage to make it not too much of a stressfest in its own right - sounds like it could be good, UA. So pleased ds is doing okay.

Just had a week in hospital. Home now. Ds recovered. Think we're going to have to move near the hospital tbh as we have two years four months to go til his treatment finishes. I could have nipped h ome and picked some stuff up etc if we lived closer. But we live 2 hours thereabouts from the hospital and it sucks. As ds would say..

Glad to hear it's going well Amazonian! Long may it continue xx

yeah

I have only been lurking UA but I've cried readng your update. So pleased for you and sending you both lots and lots of positive thoughts.

Such good news.

So glad things are looking brighter for you and DS UA - what a great Mum you are to that little boy. And I know that wonderful feeling of having some time on your own!

God bless UA xxx

Xmas sounded great,sending you and your ds big hugs.

Just had a message from someone re ds so quick update: we have finished those blocks of chemo then lived like hermits for three weeks going near nobody so ds didn't catch anything as he had no immunity. he had a couple of blood transfusions and two bags of platelets (or maybe one, can't remember) and we managed to avoid getting any infections

...so had a lovely christmas eve and morning at home, then went to well (ie not unwell) friends for xmas day which was fab. Managed to stay infection-free over New Year too.

We lived like hermits again and i got the hospital to re-arrange his first Lumbar Puncture of long term maintenance, so that he could go to his first day at SCHOOL. Which he did.

he bloody loved it, ran round like a lunatic all week, went everyday and was totall amazeballs.

Today we had the Lumbar Puncture which went smoothly and he will go to school again tomorrow.

So for next two.5 years it's trip to hospital for IV chemo once every four weeks, oral chemo every dsay which i give him, a Lumbar puncture every three months.

He is doing marvellously. There will be infections in between treatment so we will have hospital stays, but it's good to be starting to have a taste of normal life again.

I have had a few hours ON MY OWN. Lalalala!!!!... I have used this time wisely doing things I haven't been able to do since his DX....like take a load of dog shit to the dog poo bins, had the chimney swept, tidied up some cupboards and got stuff to the tip.

Life is good