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

lillee - hi - I have an online friend whose dd was dxd with AML a few weeks ago. She's texting me regularly and I know that the first couple of weeks were really tough. Her dd is on oral chemo from this week though and has been able to spend sometime at home.

Hope the outlook improves for your niece over the next few weeks.

Found you!!!

God Lillie,you really need to take care of yourself. You are going to end up frazzled. You'll be no good to your little niece if you burn yourself out.

Try and relax at home,I know its difficult chick,but the hospital will take good care of her.x.

Thanks Saggar that's good news bout your friend's dd - great to hear a positive story. I know that for niece though she will def be in total isolation in couple of weeks and all chemo will be through spine and pipe in her neck. Think it depends on strain? Not sure, but we will only be able to speak to her through the glass in the next week or two - exposure to infection would be really dangerous for her.

Thanks for kind wishes and i hope your friend's dd continues to get better.

Tiggs!! I am trying to but keep forgetting to remember to look in the flaming mirror. I'm sure those nurses think i am the mad aunty - unkept hoooooooge curly hair pulling an unsteady toddler, three bags of shopping and an empty buggy behind her!!! Oh well, i'm sure i brighten up their day - or at least serve as a warning to never get as bad!

Hi Lillee, how has your weekend been my wee haggis ?

How is your Niece and whats his name ?

Thinking of you. x

my sister had leukemia when she was 2 very rare and told little chance of recovery however my other sister gave her bone marrow and she is now 23 and getting married next year!! I prayed every day for her to get better I am sure your neice will be ok you sound like a lovely aunty. Never underestimate the power of Love and prayers.

All the very best!

Lillie?

I have only just noticed this post, though there are no recent messages. So I hope it's ok to ressurect it. Hope you're ok Lillee?

My DH was diagnosed with AML in January 2007 (he was 46). Only 25% of new cases are for those under 25 so rare in young children. There is a useful booklet you can obtain from Leukaemia Research, 43 Great Ormand Street, London WC1N 3JJ called Adult Acute Myeloid Leukaemia (AML) or www.lrf.org.uk. It answers a lot of questions and may help you and your niece.

My DH had four courses of chemo (trial) and the first course was the worst (induction therapy to clear leukaemia cells from the blood). The second was a little better (because he was feeling a bit better by then) and then the third and fourth were Consolidation therapy (to reduce the risk of relapse). The lumbar puncture is done where they may feel leukaemia cells may be present in the cerebro-spinal fluid (CSF). Both DH's brothers were tested for a bone marrow match but unfortunately did not match, so if he needs this in the future we will be relying on the national register to help him.

My DH is now in remission but has to attend regular appointments and bone marrow tests to confirm he is still free from Leukaemia. He was in hospital until May 2007, apart from occasional weeks home in between chemo treatments, when his blood counts returned to safe levels (neutropenic is when blood counts are low, therefore no resistance to infection).

Anyway, hope things are going ok for you and your niece at the moment. I am thinking of you, please don't hesitate to ask if I can be of any help at all.

is there any update on this little girl ??

Oh ladies! Thank you so much for taking the time to post! I'm so sorry i didn't see the updates but haven't been on MN much lately.

Mummylin thank you for the reminder and for your concern x

fees lovely lovely story about your sister. Many many congrats to her on her engagement and i hope her wedding day is amazing, everything she hopes for. Her whole life ahead of her. Gives a lot of hope and i wish that for our wee Chloe. I pray that the strength she shows now will beat this and she too will have her whole life ahead if her. She's certainly showing amazing strenght and determination as i'm sure your sister has done throughout her life.

Tiggs - caught up with you didn't i?

Dippymother that's brilliant news your DH is in remission. I really pray for your family that he is free from the cancer for ever. Horrible, aggressive treatment to have to see any loved one going through or endure that's for sure. Your info is great and does really help and yes i will keep this thread updated and may well ask you for a bit of advice. Thanks! I will check out that leaflet too.

I think i got to the point when looking it up on the net i got too much conflicting information. As you say, this strain is fairly uncommon in children which is prob why there is so much confusion in the info i'm getting to processing it in my brain! I had to stop looking it up cos it was really doing my head in. However i have given myself a bit of a break from that and i will definitely look at the leaflet you suggested.

Good news for my niece is that she is no longer getting lumbar punctures ever week - she has had two clear ones back so they will be spaced out quite a bit now, just to monitor.

Brilliant news is that she's off all drips for now, just getting topped up with anti-bs every night, but most of the time she's free of the 'wires' so she can move about the room!! She even comes right up to the window and plays a game with my ds on the glass. We can actually hear each other as well without those horrible walkie talkie things. So that is lovely!

She has lost a fair bit of hair now though and she's still really self concious about it all . However, we got her some cool bandanas and i have actually made a couple!!! (Cheated though, didn't use needle and thread!) She loves them though and they do look quite cool so was made up with that.

She's still in strict iscolation, so only mum and dad allowed in the room. And she still has nosebleeds even though she's been bunged up! However the staff are very impressed at her strength and how well she's doing. Eating and drinking often enough and all that.

All in all, our visits the past few days have been good positive ones. Its just great to see her out of that bloody bed!!!!!

Thanks ladies for checking and posting, will update this now!

Hi Lillee, what wonderful positive news.

You must be thrilled to see her up and about, as must her brother too.

We all completely understand life has been mad for you and appreciate the update.
x.x.x.x

Excellent news Lilee!!!

so pleased to read the update lillee,hope she will continue to improve daily x

So pleased to read your update. It sounds as though things are very positive for your niece which is great!

When my DH was in hospital, there were people being fitted with wigs so your niece may well be able to pick whatever she fancies!

I'm pleased that she is eating and drinking well, that's a good sign. It also helps being younger/fitter when receiving the chemo - some people don't make it because they are too old to take the full quantity of chemo and/or they have other health issues that delay recovery.

Hope Chloe continues to improve. She's in the right place and they will do everything they can to help her beat this disease. You sound a fantastic aunt and I am sure Chloe knows how much you love her.

Oh I'm so pleased that things are looking more positive, lillee. I too have been checking for news. Thanks for updating us and lots of love and strength to your niece.

xxx

Ladies, i am totally humbled by the fact that you were interested in this after i had let the thread 'disapper'. Its amazing how people care, and i am truly grateful for that

I will keep my word and update when i'm about and when there are any changes.

Dippymother she did get a wig, they made one up for her the day they cut her hair short as it was matting by then. It is fantastic! It looks really natural and very similar to her own hairstyle, most certainly the exact same colour. I've told her that i'm having it when she's got her own flowing blonde hair back again!!!

I do have to say as well that the staff at the hospital are truly inspiring. Not 'just' the professional skills they have but the fantastic connection they have with the children. I was leaving the hosp at the end of a visit last Monday and came out of the lift and recognised one of the nurses. Didn't think anything of it as the hospital is local to me and thought i've prob seen her on the street. However, the young ward sister came up to me and said 'i recognise you, did your son ever stay here at the hospital?'. My DS is now one and a half and he was there for a bit of time when he was 4wks old and had an op. He's totally fine and all that now. I said yes and realised then that she had been in charge of him all that time ago (i know its not like decades but the amount of kids and parents they meet is unbelievable in that time i'm sure). I was speechless, and she almost made me cry after fussing over him when she handed him a puppet!!! She had just brought some for the ward and handed one to my baby!! Truly, truly amazing people. I felt so humbled i can tell you.

Anyway, i'm going off the subject a tad - just to say my darling Chloe was still in fine spirits today and has almost completed a sand picture and a door sign for Josh which she will be handing to him next week she tells me!!

it sounds a very caring enviroment your neice is in.How long will her treatment last do you have any idea ?

Mummylin it is a very caring environment, they estimated 6mths initially and then take it from there.

BUT today we got some BRILLIANT news!!! She may (still not definite) get out (as in out of the hospital) for a bit of time this weekend!! YAY!! Still not def how long for ie a couple of hours, a day, an overnight or whatever - but at least she'll get out of that bloody room. [oh and jumping for joy emoticon for the hell of it]

oh that will be wonderful for her ,im sure it will make a big difference as to how she is feeling.Even two hours will be lovely,any plans for that ?

That's brilliant news Lillee!

My DH came home for 7 days at the end of the first dose of chemo and then returned for the next course. He had been in hospital for 5 weeks by then, so was pleased to be out even if briefly! The treatment does last about 6 months, quicker if everything goes to plan, but there will be other times inbetween the chemo where Chloe will be able to come home before the next course begins and each time she will feel better than the time before (IYSWIM).

Fantastic news about going home for a bit.

Enjoy, enjoy, enjoy.

And lots of love,

xxx

That's good news - she'll be so excited about going home, even if it's only for a little while at the moment. There's nothing worse than being stuck in "isolation" having been there myself. I know I was so excited when I got to go home even though I had "sea legs" for a while when I did get home. Between my rounds of chemo the stays in hospital got less and my final round, which was for 5 days they let me do as an outpatient.

Dippymother - is your DH OK now - is he on any maintenance therapy? I was diagnosed with APL (a variant of AML) in July 07 which was treated with aggressive chemo. I'm in remission now and hoping to stay that way, but I have to have 2 years of maintenance therapy (chemo tablets).

Vev - DH is okay now and not on maintenance therapy, just has to go to the hospital regularly for blood and bone marrow tests. He was also treated with aggressive chemo which made him very sick. Like you he is in remission and hoping to stay that way. It sounds as though your treatment was slightly different but I know there are many trials/research in order that (hopefully) they can cure this horrible disease. Hope you're managing with the maintenance therapy, with no unpleasant side effects and that you're getting your life back on track. It certainly turned our lives upside down!

Lillee - How did the weekend go - did Chloe get out of the hospital?

Just a quick update. BTW thanks for your kind wishes ladies as always.

Chloe got home for the weekend and i believe she loved being at home and they had decorated her room couple of weeks before so that was a nice little surprise into the bargain.

The only time my DS and i got to see her all weekend to physically hug her was yesterday. I wasn't told when she was actually leaving the hosp on Saturday, so we missed her. Didn't get replies to txts until late in evening asking how her day had been. Only got to see her yesterday as she was meant to be going back in to hosp in morning but as her counts were good she was allowed to stay out another night - chemo doesn't start again til tomorrow morning but back to total isolation. They only called/texted me as i am near the hospital and it saved a journey home. I'm not going to rant about this cos the only person who matters in all of this is my niece but in the end she didn't get to stay with me either as i apparently didn't bow and scrape enough or quickly enough. I managed to catch her for half an hour before she got picked up by sister's friend and i had to bolt to the gp's for DS's immunisation appt.

I believe she is now back in today but i haven't been told anything so far.

Fab that she escaped for the weekend lillee. Sorry that you didn't get to spend much time with her.

Having initally been quite upbeat things are not very good for my friend's dd - some sort of rare chromosome in the leukaemia (I don't really know enough about it) so although she is having short periods at home the chemo is very aggressive.