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

how are things today lillee?

How are you today lillee.Sometimes doctors do say things like 'it looks bad] to prpare parents for the worst case scenario,they do not usually say it lightly.And there is always the possibility that the doctor will be wrong.Hope you understand,rather muddled post.Thinking of you and your family.and as others have said...being there practically etc is important.

Thanks ladies. Just quickly logging on before i go. She is to have a lumber puncture today and BIL called to say i can go up and see her now. Need to obviously keep it together cos i need to be strong for her and not let her see i'm upset. I'm sure she is petrified wondering what's going on around and to her.

Will come back on later when i get back.

Lillee {{{{{{{{{{{{{{{{{squeeze}}}}}}}}}}}}}}}

Hope you have got on ok with your visit. The only remotely useful thing that has occured to me is this: you lost your cousin when you were 21 - that is 15 years ago and in that 15 years treatments have improved a lot and the majority of childhood cancers are very treatable now. I realise that you earlier loss is preying on your mind - but I am sure your niece will be much luckier.

just so you know lukimia in children is very treatable. One of my friends recently had lukimia, my mum has had it and my grandad has too... they are all here still today. Be strong, talk to the doctors of you are worried about anything. they are very helpful and understanding and always there to give good advice. Children have amazing resources for coping with these sorts of things and the main thing is that the hosp know what is wrong and can deal and treat it. I hope she makes a speedy recovery sending hugs your way. Charlotte x

OMG Northernlurker has just let slip your age Lillee..........

Bang goes the 21 theory

How are you love ? How are the rest of your family ?

how did today go lillee?

Hi Lillee. Just wanted to tell you that my niece was diagnosed with leukaemia aged 7 as well.

We feared the worst - I think you always do with children, especially if it's anything cancer related, but she is now a beautiful 18 year old, at college and generally loving life.

Let us know how today went when you get a chance.

((Lillee)) I know its not much help, because everyone is an individual case and so on, but I also know a lovely 13 year old who had leukaemia when he was two. He's been fine for ten years now. I so hope the same for your neice - times ten.

Thinking of you all, xxx

Very sorry to hear this. I have close experience of leukaemia patients and it really depends on the patient and the cancer as far as I know, I believe it is particularly treatable in children. I don't know why cord blood, which can be extremely helpful for child leukaemia patients, isn't more generally collected, I felt terrible that mine / my son's was just thrown away.

One thing that helped me feel like I could contribute was going on the Bone Marrow donor register, even though I think they don't generally call on women of child-bearing age if they can get a match from a young healthy man. It is pretty easy, the Blood Service just takes an extra sample when you go to give blood.

You are all brilliant! Thanks for your positive words about these amazing kids who beat this horrible disease. Last night when i started this thread i didn't know why i was doing it really cos i've never started a thread before and only recently been posting on other peoples with advice/experience of my own. But from when Ledodgy started with the positive outcome to now i realise that i needed the reassurance too, even though i'm not her mummy. She and her brother are very special to me - i spoiled them both long before my own DS came into the picture. So once again thank you.

I'm just back from my third visit there today (only nipped back last time to take some more supplies) and she had made me a 'you are very special Aunty' card. She is so strong it really humbles me. As it goes she didn't get the tests done today she had to have a CAT scan as her hearing has got really bad and they suspected there was too much pressure on the brain for a lumber puncture . That has come back fine and she's getting that and the line for future treatment done early tomorrow. She tells me when she 'is to go to sleep for a little while'

She looks dreadful, skin is beyond white almost transparent, teeth totally discoloured (she had amazing white teeth last time i saw her) and her eyes are just lifeless never mind the shocking weight loss. Sis and BIL told her first thing this morning and i think they were a bit too brutal with it IMO, they then told my nephew while i was there and he was in bits. He told her he doesnt want her to die and the two of them hugged and cried together. Had to leave at that point, couldn't keep myself together watching them both in pain She told me tonight she only cried a couple of times at which BIL said 'she's been great only cried a wee bit when we told her'. Quick as a flash she said 'no wonder, the way i was told!' I thought well done you!

I'm trying really hard with sis but its very difficult, she is being a complete arse but at the end of the day its my niece i'm ther for and not her. Which is sad i know but that's the way its gotta be.

As for donating myself, unfortunately i'm anaemic again (had long history of this although was perfectly fine during pregnancy) so don't think i would be suitable. But it would have been a way to 'do something'.

Anyway, thanks for your time ladies. I have really appreciated your support and allowing me to get this off my chest! Thanks!

Aww she sounds such a mature little girl with a fighting spirit!

Lillie. I just wanted to show my support and once again a big sorry for not being a night owl when you needed it the most. I could kick myself!!!
Love ya chick.x.

Aw Tiggs don't be sorry luv. Glad you were getting some kip!! Love ya loads xx

Ledodgy, she is a brilliant wee girl and i'm sure will teach me a thing or two as she gets older! Very proud of her.

You could ask the nurses what would help? For example, sometimes in hospital the space is very impersonal so it is nice to have postcards etc round the bed, also I remember one of my friends was very sensitive to smell when she was ill so she had a pot of Chanel face cream in her drawer to sniff from time to time, she liked that.

Good idea B1977!!! I took her loads of arts n craft stuff and pens, paper, card, books and things like that to keep her occupied. Obviously card too but while i was up through the night last night i printed a BIG pic of my ds with a really cute slogan on the bottom to his big cousin. She loved that. For some reason when i was getting all this together i stuck in a night light thingy i bought her for if she ever got to stay with me (hasn't happened yet)just to take the clinical look off the room at night. Not sure if it was a good idea but might help. Will def go on the hunt for other relevant pics and postcard thingies like you say tho tomorrow before i go see her. The smelly one is also good. Brill! Thanks loads x

sounds like you have some good ideas for things to take in Lillee, thinking of you all in this.

Hi Lillee, how is it all going ?

Sending you big hugs x.x.x.x

Hope she is doing well, you sound like a fab aunty

Thanks for your support again ladies, i really do appreciate it. Haven't been on MN for couple of days as its been quite difficult to say the least.

Niece had lumbar puncture yesterday and tube inserted in vein so that drips etc can be removed everything can be done through this tube coming out of her neck now, ie blood tests, transfusions and treatments. She is now about the same girth as my ds who is under a year and a half. Yesterday she wouldn't speak to anyone. Understandable though. They did a scan and found a heart murmer too. I came away yesterday obviously broken up about her but my sis's treatment of me was disgusting by anyone's standards. Didn't sleep a wink last night - don't think any of us did.

I didn't go earlier today as i didn't feel i could hide upset from her and believed that treatment would be started today anyhow - thought she might be feeling sick etc. However, found out that treatment hadn't started and took myself off to hosp. Sis asked me to take a walk with her the minute i got there and told me she has AML - adult form of leukaemia. Don't yet know the strain and therefore survival rate but it is bad news as far as type. She will be undergoing trial treatment initially before chemo and will be in hospital for minimum 6mths in total isolation. IE when we visit we will talk to her through intercom at window. Only her parents will be allowed in room other than staff so her brother will be affected more than anyone by this.

Sis is not telling neice (thank the lord!) but they are telling nephew. Again i don't believe this is wise but i understand they have to explain the visiting situation to him and they will deal with it their own way anyway.

She asked me tonight if i think she will suit a bald head and i told her she would. She seems to be concerned her hair will not grow back the same colour. Obviously reassurances given that she will be beautiful no matter what but i need to read up more to prepare for what's to come for her and try and be better equipped with answers for her.

I know this is a long post and i'm not expecting any responses but i needed to go through the act of typing it out and sorting it all out in my own head IYSWIM?

Oh darling darling Lillee, you are doing a grand job. Just know we are all her for you and will continue to be.

If I could hug you, I would.

Take care, I know it must be hard to sleep but you have to look after yourself and your two boys first, otherwise you will have no energy left to continue the wonderfully supportive role you have been playing. Could you perhaps suggest to your sister you could help look after your nephew to free her up and to support him ?

Big hugs my love. x

Thanks Vaggy, you are a great support, your texts and phone call have really helped me get through last couple of days. You are a very kind considerate person and i love ya loads!

Have asked for nephew to come stay with me - that was part of yesterday's carryon, treating me with complete disgust. As you know he ran away couple of weeks ago and came to me. Don't think she is comfortable with our relationship and she is projecting that to him. He was very obviously awkward with me. Don't want to put him through this crap TBH.

However, when she took me to the side to tell me bout niece's diagnosis i let her fully understand that her behaviour was not only juvenile but that it was affecting the kids and detrimental to her own children. Thinking that sitch might just be easier tomorrow.

I have agreed with them that either Sis or BIL stay with me over the weekends, depending on who stays over at hospital. They take turns. As well as concentrating on niece i badly want to get nephew some time out, even just a walk in the park. We'll see what transpires.

Into the bargain, DH is going in for op at another hospital tomorrow so it'll probably be a bit manic over next couple of days. May only post sporadically.

Follow up
Many children with AML are cured. If the leukaemia comes back after initial treatment, it usually does so within the first three years. Most children with AML grow and develop normally.

Lillee, this is an exert from an AML section on the cancerbackup website.........

Love ya babe (even if I canneeee understand ye) !!!!!!!!! x.x.x.

Whats going on with DH? Sorry did not even know you had that going on too.

Big hugs too to the small wee pizza boy.