Just had call to say niece in hospital and they think she has leukemia

[lillee]

Am feeling sick to the stomach and numb at the same time. Sister and i haven't spoken for a long time so BIL texted for me to call him back - he was in bits.

Apparently she's been in hospital all day getting tests done. They are transferring her to hospital five minutes from me to do bone marrow tests. The consultant has told them that two blood tests have come back 'erratic' and 'it looks bad' now would they say this before they do the further tests?

Don't know what to do, obviously they don't need me there at the mo. Other than to offer they come here for rest/change of clothes/shower/moral support or i go there immediately they need me i feel totally helpless.

We have already lost a cousin aged 7 to this disease (just after my 21st birthday) and its all i can think about - his big blue eyes and hers both looking at me really scared

I know Vaggy, been looking on various sites as well. On one hand they say better chance if patient is young (normally occurs in 40 to 70yr olds) but the ratio is lower that ALL for instance. Some of the info on there with regards to survival rate is contradictory. Her brain has pressure, spleen and lung enlarged and now heart murmur. As a result she will have to have treatment either initially through spine or chemo through spine. Can't remember which (again need to carry on genning up).

I am staying positive, was full of positive energy the other night. Just not the diagnosis i was praying for. Will not lose hope for her absolutely no way - she is strong though very frightened and i know she will be there to tell my DS off in years to come (she can be very bossy you see! wonder where she learned that from??). Just waiting for results as to the strain before I get myself into a further state!!

Lillee, I think a little knowledge can be dangerous, so if you are gonna trawl thru these sites, take all the positives, ignore the negatives.

Your doing a grand job McTavish. x

thinking of you lillee, it sounds like you are doing the right things in offering your home to them and time out for your nephew too, make sure you get some time for yourself too, whats wrong with your DH?

LOL at McTavish you sassinack!!!! I know what you are saying, stopped looking at the sites for the night. Partly cos i'm getting too much going round in my head and partly because DH just told me off too!

Thanks OJ, XP with you there - but what's new for me, eh?!

DH had op last year don't know tech term for it but its like a growth thingy at top of his bum!!! He had been suffering over two years and it got so bad it was a hole [sick emoticon]. Op didn't work and he's going back for same but he has been in loads of pain give him his due.

Oh how awful for them/you/her

Could I just say that childhood leukemia used to be a terrible thing (still is obv) but the survival rates are very very high now. Used to be 80% died, now is more like 20% apparently. It does take a year out of the life of the parents though. DH has had lots of experience of this in his job and has seen many good outcomes

I wish you every luck x

Is it an ingrowing hair Lillee ?

(((((huge hugs)))) couldnt not post after reading. I realy hope your niece pulls through this lillee x

it's a pylonidal sinus
(the arse thing)

Thanks Countess, i am trying not to get maudlin and wait for further results tomorrow. Maybe looking on sites was a bad idea without all info? Sis wasn't very pos when breaking the news you see. Will stay positive no matter what, that's what she needs to see.

And it really does help to hear positive stories, it brought me back from utter dispair at the beginning of this (only Friday but it feels like ages ago now!) and i'm sure its the only way to go.

Thanks Fawke - yes Countess spot on!

Oh Lillie I keep forgetting that you are over here
Sorry I missed you tonight, I am thinking of you and sending you loads of love chick.x.

Hello Lillee, how has your day been ? How is DH? Hope you have told him that last text.......might make him split his stiches

Any news on when the treatment can begin with your niece?

Just read your post, Lillee. So very sorry - what a terrible shock. Sounds like you're a fab aunty - if there are blessings to be had, perhaps it's that she's in the hospital near you so you can support her and your nephew - feels like they need someone like you in their lives.

Please keep posting and let us know the latest.

Lots of hugs to you, your niece and your nephew.

xxx

Didn't get a chance to come on here yesterday so quick update. Went to visit niece with DS yesterday. She is on the trial treatment, still chemo and receiving it through the spine. She was very quiet and no change to her pallor. She was physically sick twice and didn't want us to leave . Will be getting chemo now for next five days.

Don't yet know the strain, will know on Friday. Have not looked on info sites since other night as i was getting in a state with conflicting info. Will wait til Friday to research exactly what we are dealing with.

Thanks again ladies for your support and lovely words. Don't feel like i'm doing anything and that is a bit frustrating.

Vaggy, DH was made up with your text. He may be getting an op for a pain in the arse but i wish there was one to stop him being a pain in mine!!

You are doing plenty you worry bag. You have your own DS a DH that is having an op as we speak and to ing and fro ing to the hosp. Why oh why do we beat ourselves up?.

It just sucks when you cant take someones pain away doesn't it?. It's human nature to just wanna "fix" people, but we also know it aint that easy.

You tell your DH I do care, he's a chef FFS, but then again I was with a chef who worked at the Hilton on Park Lane in London for some years and I did most of the cooking. If you look at it like that it cant be much fun being married to a prostitute ...........................

I have gone mad !!!!!

Who over excited vaggy again? Get back in your box lady!!!

I love you

Poor little thing Lillie You have done loads. Vaggy is right don't beat yourself up about it. There is nothing more that you can do but wait,which is probably why you are feeling so frustrated. Unfortunately when it comes to things like this you have to hand the responsibilty over to the medical staff...however hard that is.

You are a wonderful Auntie to her Lillie and just being with her will be enough.x.

Over excited, who me, no never !! Tigger I do despair, you do so have the wrong impression of me.

Back passage, nudge nudge, wink wink.......

Lillee how is DH after his op ? Tell him hi from the southerners !!!!

What are you two like! LOL

DH is probably glad someone cares about him cos he's done my head in tonight, selfish tw*t! You are more than welcome to have him for any odd jobs you would like done Vaggy!!

Got up again, can't sleep. Head full of too many things likely. Fell asleep with my DS earlier cos i was exhausted then and now ting wide awake!!!!

Did two lots of hospital runs today. Saw niece before chemo and during. I really don't like seeing her getting the treatment (i know that's a selfish thing to say) but i feel she should be able to do that with only her mum or dad about cos it makes her feel really sick and tired. Earlier visit was great though, she gave me big hugs and told me she loved me. Nearly had me in tears. By the time she was getting treatment around tea-time she was grouchy (absolutely fair enough). Think she is dealing with it all really well - she is being very brave and i don't know many adults that would have the same spirit coming through at times. HOwever she is getting a bit self-consious (sp? it's late!) having to use commode etc. Heart breaks for her. DS gave her a new teddy with pink outfit on and that made her smile so that will keep me going til i see her tomorrow.

On the way out of hospital DS managed to get out of my grip and ran in the opposite direction, giggling like made. Unfortunately straight into a wall and he really smacked himself right in the head. Almost immediately had blue bruise coming up and its gonna be a cracker tomorrow! Told DH on the phone to be told this is the second time its happened when he's been with me (he's never with anyone else) and can i not be a bit more attentive to him!!!!! Arse? He is persona non grata with me since then i can flaming tell you. He's supposed to be coming out tomorrow but only if he has someone to 'escort' him home. Think i'll just forget about that hospital trip!

Anyway, sorry to bang on again, needed to get it off my chest and this is a good way for me to do it.

*giggling like mad not made!!

Agree Lillee, he is a completely selfish twat and a complete arse for judging you coz DS is a "normal" mischief pants. Let him try and do all you are doing and let you go and flip a few burgers.

He got me riled, off my list of people to give a shit about.....

PIG

You are right about direct family being with her during her treatment, what kinda message does that give the poor mite, mind you it's horrid, but i suppose it's what she is used to innit !!!

Love to all (Apart from V!!)

Your gonna have to sort out your sleep patterns, gonna turn into a night owl and we will never see you round during the day !

Was only joking bout whats his name, mind you he is on a yellow card with me !!

Lillie,whats happening? How are you and how are things going at the hospital?

Oh Lillee, lillee McSilly, where are you.....

Hi, sorry things a bit fraught and hectic round here. Tried to post last night but was having probs with DH who should have stayed in hosp another two days and signed himself out!!!

Yesterday was crap crap crap!! Neice having really bad time of it - nose bleed for hour and a half and then choking on it whilst getting the chemo. Really sick. Saw her twice. She looked worse.

Today i did some bits with my DS went to park etc and then had time out with my mate. Really needed it i can tell you! Sil was supposed to be staying with me tonight with nephew and 'forgot' to let me know she won't be tonight and stay tomorrow instead. This is before hospital visit so i wasn't in best of moods. (I know, i've got a cheek to be moody in light of what's going on!!)

Visited neice later in afternoon and took her a gorgeous cuddly cat from J and a couple of bits my friend sent her. Hooooooooge bit smiles, lots of kisses and she will not let cat move from her side. She did actually look a lot brighter today and managed to have a bit of a play with J (he's got a thing about sick bowls and thinks they are hats) so new project for her tomorrow its to decorate one for him! Left hosp feeling a lot lighter, certainly more positive. When she's like this its hard to remember what's wrong with her.

Asked sis about strain of AML, she couldn't remember but was able to say it wasn't the worst one and they are treating her for all the other ones already so that's a bit of good news for a change.

Hopefully she will get a good night's rest and carry on being as bright and not so sick tomorrow. Bless her, she truly is a gorgeous wee girl.

As for you two - Tiggs and Vaggy i'm here!!!!!! Thanks for caring girls you are both great mates.