UnlikelyAmazonian's DS is gravely ill

[PiranhaMorgana]

Please pray for UA's son,4yo ,who has just been diagnosed with Leukaemia and is on his way to Bristol Children's Hospital this evening.
UA is currently banned from MN after an altercation on Relationships,but she has continued lurking and really misses the support which helped keep her strong for her DS since her very abusive xh disappeared 4 years ago.
She is a very dear friend of mine and her DS is her entire life.She is absolutely devastated and has no family.

How is DS now UA?
I hope you have lots of lovely Christmassy things planned together.
Take care.

Thinking of you and DS and hoping things are going as ok as possible, xxx

We had the last dose of chemo today, bringing an end to 7 months of four blocks of intensive treatment. It should feel like a big day and in some ways it does...but it also doesn't. As his blood counts are decimated, he's as pale as a sheet and likely now to get an infection as his immunity is stuffed.

I decided to leave him accessed (ie wiggly left in his chest) as he really needs a blood transfusion but that would have meant staying on at hosp another sfive or six hours and driving home very late tonight in the dark.

So if he gets poorly or lethargic tomorrow sat or sunday then we will go back to hosp anyway for the transfusion. he will need platelets next week too.

He will almost definitely need platelets and blood is whast I am saying. And probably come down with something which will mean three nights in hospital.

So although it should be a celebration tonight that we have finished the four block of chemo, it doesn't feel like it!

He's doing marvelously however. I am the house Clown as we laugh constantly as i keep his spirits up (and i defo believe that laugher is a big medicine) . We've just watched You've Been Framed. He's got a new Skylander tonight for being such a good boy and i will be Queen of silly faces when I put him to bed.

So.....7 months down and now only two and a half years of treatment to go. hahaha.

UA you are a wonderful mother. Wishing you and the DS everything that is good.

You are doing so brilliantly Amazonian. Sending you both all my best wishes.

Hoping the DS is doing well at home and that you are keeping your spirits up UA.

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

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

God bless UA xxx

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!

Such good news.

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.

yeah

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

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..

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.

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.

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

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.

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

thankyou x

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

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.

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

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.