Possible leaukaemia - anyone can share experiences?

[hazlinh]

DD, 5, who has been sick for about a month (I think I've posted a few threads over the past few weeks) was admitted to hospital today for low blood count. Her red blood cells and platelets were "abnormally low" and she needed to have a platelet transfusion.

Paed says it is likely to be leaukaemia, and did repeat blood tests to make sure the blood counts were not wrong.

He also did a blood film test which he says will confirm whether it is leaukaemia or not. The only problem is that the haemotologist is on leave, understandably, so paed is trying to contact him now.

And a blood marrow test on Monday would be 101 per cent confirmation. Am in shock, and it's all a bit surreal, and I don't know what to think, or expect or anything.

If it is really leukaemia, and paed says he hopes it is not, but he said to brace for the fact that it could be, he was optimistic, and said that nowadays there is a 90 per cent survival rate. But that treatments will last 1 to 1 and a half years and our lives will be changed. He didn't really elaborate but he said DD would need her blood taken 2-3 times a week and they normally just leave a line on her so they don't poke her all the time. She would also probably skip a lot of school over the next year or two. One of us would also probably need to give up our jobs. Me and DH are seriously in shock and if there's anyone out there who's had experiences with leukaemia, I'd be extremely grateful if you could share them with me.

My stepson (now 11) was diagnosed with leukaemia (ALL) in summer 2008, he is still undergoing treatment but he is doing really well. Yes, life really did change and DSS doen't even live with us, but DH has taken care of a lot of the appointments. It all sounds about right regarding missing school etc. My DH and his XP both managed to keep working but my DH got a lot of concessions from work initially, and XP is part-time so they managed it. Definitely see if your workplaces will give you some flexible working/parental leave for a year or so, it gets a lot easier after that!

DH said will come on here and give you some of his experiences but he is working tonight so it would be tomorrow. In the meantime he said that in the first 4-6 weeks, just hold onto your hat and get through it. You probably won't understand most of what they are telling you!

Where in the country are you? Will you be under Great Ormond Street?

Good luck with this but I think so far she has NOT been diagnosed with leukaemia so please try and stay positive. Try not to worry about work etc as all the practicalities can wait. Really hoping for you that it all works out well. New years resolution but myself on bone marrow register. Best best wishes and look after yourself.

Hi Hazlinh. My experience is not recent but I share your shock at the possible diagnosis. My daughter was diagnosed with ALL when she was 3. She had 2 years treatment which was thankfully successful. She's now in her 20's and her health is good, although she still has to attend hospital for check-ups.

Although it was a long time ago, I can clearly remember the feeling of disbelief that this was happening to our beautiful little daughter and although the treatment is difficult, as you have been told it is very effective and is improving all the time.

During our daughter's treatment we encountered lots of medical professionals - some incredibly insensitive and others who showed amazing empathy and care.

The only advice I can really give you (if you are given a positive diagnosis)is to try to cope with this situation a little at a time. Hopefully, you will be offered support by the hospital - we had a lovely social worker who not only supported us emotionally, but also organised grants to help with extra expenses. Accept every offer of help - you will need as much support as your daughter.

My thoughts and best wishes are with you at this difficult time. x

I will add another piece of advice we were given,
Make decisions with the information you have at the time. Its too easy to think back later and regret/think something might have been better, but you can only do so much.

Hope your ok, any news yet?

rheumatois arthtitis.other autoimmune diseases and parvo virus(chronic can cause this hazlinh ( parvo virus/...slappped cheek) can get into your bone marrow and give symptoms that are similar to leukemia
( I had this for 3 years and was convinced i had leukemia)Parvo virus gets into your bone marrow and affects red blood cell replication,hence the low platelet count and tireness ,lethargy,bruising.Pearson's syndrome.

it can also be triggered by drugs that have been taken in the last few months

really hoping no news is good new

hi everyone, thanks for all the support and replies...am so touched that there's so many.

i haven't really got time or the energy to reply individually, will try and answer questions in a general overview if that's ok.

the paed who told us it was likely to be leukaemia said he'd had 20 yrs experience with leukaemic kids and said the blood test results looked so much like leukaemia and that's why he was confident enough to tell us. i am overseas, not in the uk, but he's said to be very careful and thorough and wouldn't say things lightly. but i did find his bedside manner was really appallingly bad but he made up for it in the end by giving lots of good advice. and he did do repeat blood tests. anyway, haematologist read the blood film and said it was leukaemia and looked to be ALL (common in kids, and highly treatable) but they transferred us to another hospital (lots of miscommunication during the transfer which got me angry and frustrated and i ended up shouting at the doctors including the first doctor at the first hospital whom i telephoned very angrily, nurses and support staff, but anyway that's a different story) which reputedly has the best paed oncology dept in the country. dd's just had her bone marrow and lumbar puncture tests done today and is having a blood transfusion. this doctor has a slightly different approach, he hasn't said 100 pct that it is leukaemia and he says to wait for the bone marrow biopsy results, which is what a lot of you have said the first doc should have done.

anyway, moving on, i think i am ok, and the first doc has said DD will survive, with survival rates at 80-90 pct, and her signs are good, and so far i have been optimistic but today have seemed to hit a brick wall.

if it is leukaemia, the doc has said that treatment normally involves chemotherapy for 1-2 years, and DD will also need to take some drugs orally? She was supposed to take some atropine just now after the bone marrow and lumbar but she just refused (i have posted before on how she refuses to take any meds orally and we either have to give suppositories or hide it in her milk bt only if it's tasteless) and we forced it down her throat but she threw it all up. so now i feel really frustrated and helpless, and wondering if there are any other alternatives. i have tried to explain to her when no one was around that she was really ill and that if she didn't take it, she could die, and then mummy would be really sad, but she just cried and said she didn't want to take the medicine.

anyway sorry for the long post. and thanks again for all the support and shared experiences.

citybranch, moresproutsplease...could please elaborate more on what to expect with chemo and treaments? me and dh are still struggling to deal with one day at a time, and haven't been able to figure out what to do for the year or two ahead. i have said that i will definitely give up my job, bt dh reckons there is no need and i can work fr hospital. i think i would rather give up my job or at least just work flexi hours. but i'd really rather give it up. even if it meant we had to struggle financially

and how will life change for DD? will she attend school at all for the next year or so? can she even go out to play at the playground?

Message withdrawn

sorry it wasn't atropine, maybe, it was some other name but sounded like atropine. ok i need to get my act together

thanks for the tips bloss, and everyone else who has shared really positive and uplifting experiences, i need that right now

((hazlinh)) just adding another....my friend's ds had leukaemia when he was about 3, had 18 months of treatment and is absolutely fine now at nearly 10. I don't think there is any way through the shock but time and talking, and am glad for you that you've posted here and had lots of support: it won't stop, I am sure of it.

I've had personal experience of long term (couple of years) serious illness, and yes its a huge adjustment. Whatever you feel, however you react, remember its all normal and you're entitled to every single thought and feeling - and keep talking. xxx

None of my kids have ever had this, but a good friends daughter was diagnosed when she was four.

Two years later she is better, the child survival rate is fantastic.

On a practial level, my friend did have to give up her job as she practically lived at the hospital with her daughter, but they were able to claim disability benefits which covered her wages anyway. So there is financial support available.

I am so sorry for your daughter,and wish her a speedy recovery.

hopefully it sounds like the cureable one,but thoughts are with you. hope she feels ok soon.

hazlinh, so sorry that the leukaemia is pretty much confirmed. ALL is the easier leukaemia to treat in children, as you have been told, and has good survival rates now.

Afaik, and I hope someone will come on here who knows more personally, chemo is not given orally but intravenously, so your DD will not be able to refuse it.

As far as giving up your job is concerned, perhaps wait until you see how she gets on with the treatment - if she takes it badly, then you will want to be there more for her; but if she gets through it ok you might decide that you can still do some work. Are you able to reduce your hours or take a sabbatical without actually stopping work?

I don't have any personal experience of leukaemia but my niece was diagnosed with a brain tumour at the age of 21mo - it was a devastating piece of news, she was so little - but she had a successful operation and is now a boisterous 4yo. She still has to be checked every few years until she is at least 10 (and then again about 10y later, I think) but so far so good.

I expect there are support fora specifically for families of children with leukaemia - you might get some benefit from them at some point.

In the mean time, (((hugs))) to you and your family and will keep you and your DD in my prayers.

so sorry you are going through this.

My cousin was diagnosed with luchemia when he was three. This was obviously years ago so treatments etc will have changed since then, but what I do remember is that he was in and out of hospital for several months, that he had chemotherapy and radiotherapy and that it was a tough time for his family.

Iirc it was the treatment that was the hardest rather than the illness though. Between treatments he was a normal boisteress child who did all the normal things that other children do - it was the family who wrapped him up in cotton wool

I would say the hardest part for him was when his hair fell out and he was teased by other children because of it but he took all the other treatments in his stride - even the lumbar punctures which he apparently never even cried.

He went into remission after 2.5 years but had a relapse six months before being given the five year all-clear. He was ten then, and had a harder time with his treatments, having to have njumerous transfusions etc (although I wasn't living in the country at the time so know this only third-hand).

He did go back into remission and is now a healthy 31 year old.

The only downside is that he is unfortunately infertile, something which is sadly often an effect of the treatment.

The one thing i know my auntie took comfort from was to talk to other parents who were going through the same thing, although this can also be hard as at the time some of the children didn't survive but she still found it helpful and even now raises money for a local luchemia charity.

Where abouts are you? Perhaps it would be helpful to try to find out whether there are any support services in your country to help you through this.

good luck xx

PLEASE READ THIS!!!!!!!!!!!!

I cant believe i am reading your thread. Our DD 3.5 was diagnosed with Leukaemia on Christmas eve. I have never and hope never to have a day like it again in my life.

I am 37 weeks pregnant and cant believe we have got through the last week.

DD has started her chemo at Sheffield childrens hospital on the same day she was diagnosed. We got home last night at 6pm and will be back on Thursday for general Aneth for bone marrow, lumbar puncture and chemo in the spine. She has ALL and will be having two years treatment.

She can not walk at the minute so am finding it very hard as very big belly. The drugs have made her so weak she can not support her own weight.

I feel helpless when she crys and wish i could take every bit of pain away from her.

I hope you respond and will be looking out for your replys. I REALLY do know how you feel x

hazlinh and woodhj - I am so sorry to hear your news. As you both say, ALL is the most common and most easily treatable type of leukaemia in children and the odds are even better within the age ranges 3 - 10.

Although the method of treatment has changed in some ways since my DD had hers, the protocol is the same & you should be given this in writing as every child has basically the same treatment, even outside the UK.

Basically, they will have intravenous and intrathecal (spinal) drugs - some under general anaesthetic - with regular blood tests, lumbar punctures and bone marrow biopsies to monitor their progress. My daughter also had radiotherapy to her head which doesn't hurt at all but she was required to lie still and this can be done with sedation if necessary.

After initial remission is achieved (DD took about 6-7 weeks in hospital), oral chemotherapy is given with monthly injections at an out-patient clinic. My DD had never been good at taking medicine but we found that crushing the tablets between 2 spoons & mixing the powder with coke or lemonade was actually a 'treat' for her.

As she was only 3 when diagnosed, school wasn't an issue initially. She was still on maintenance treatment and vulnerable to infection when she was due to start school and she had a home teacher who visited us most week days. She did really well and was actually ahead of her age group once she started full-time school at the age of 6. She was able to mix with friends' kids and had a good social life - we just had to be very careful to protect her from certain infections. Luckily she coped well with any she did catch. Her older siblings were very protective of her and I don't think they were too adversely affected by her illness.

I'm so sad to hear that you are having to cope with what will be a very difficult and challenging time and wish you all the luck in the world in dealing with it. One day at a time is the only way.

Please feel free to ask me any questions - bear in mind that our experience was over 20 years ago, but I can still remember exactly how I felt during that time.

I don't have any experience or anything to offer apart from copious sympathy and well wishes.

However, this is the blog of a child who was diagnosed with Leukaemia at 7 she is now recovered.

I'm sorry to hear the news, you too woodhj. Maybe you two will be able to hold hands and find out how to get through this together. You sound so sad woodhj. I's so so sorry for you, for both of you.

You will get through, and all the answers to the billions of questions will come. One day at a time, one task at a time if needs be. Hang on tight to your family and your little dd.

Think about the job later, it doesn't matter now. It wil all hold until you are ready to deal with it.

Thanks so much for all the advice and links. I can't even begin to thank all of you individually...really appreciate all the positive stories...

Thanks pixie for the link, it's a great blog..she looks so healthy now. she reminds me of my DD, she wears glasses too...

woodhj, am so sorry..and i don't even know how you are coping, with the pregnancy...i hope you're doing ok, under the circumstances.

we haven't started chemo yet because we're still waiting for the bone marrow biopsy results. should be in later today. but she's now on alupurinol(?) and prednisilon or something or other, it's in the protocol in DD's new file DD is having another blood transfusion today, her count is still low.
how is your dd coping with chemo apart from the not being able to walk? i met some other mums in my ward, whose kids also have ALL, two of them are 3 yrs old and were only diagnosed just last month...the kids seem to be doing fine after having had one round (is it cycle?) of chemo....

she will be on 2 years treatment too. i can't believe it will take that long
i struggled at first to get to grips with it, but i think i'm a bit better now. tho my mum can't stop crying

Moresprouts, the protocol does sound exactly like the one now...thanks for sharing your experiences...am worried about school, DD did very well in school, she was always best student etc, but am worried that she'll lose out when she misses 1-2 years of school. i feel a bit better now you've shared your experiences...

tks again, everyone...

Im so glad you have replied. I feel so much better now the tretment has started and im sure you will too.

The most worrying part for me was the GA as she has never been put to sleep prevously and as this will become a weekly thing it terrified me.

I am going to list what DD schedule is so you have an idea for when it starts.

24th Dec Bone marrow, Lmbar puncture & Intrathecal Methotrexate (chemo inj into spine)

25th Vincristine (IV), dexamethasone (steriod tablet 2a day and ongoing for months) Cotrimoxazole (only 2 day, ours is thur/friday drug on going)

28th Injection into leg muscule Peg Asparaginase

31st back for 2nd lot of bone marrow etc and vincristine

5th Jan clinic for review

7th back for 3rd lot of bone marrow etc and vincristine

it sort of repeats its self for a month we are back 2-3 times a week. The Vincristine Peg Asparaginase are powerful and i found dd slept most of the day afterwards.

towards the end she will have a Portacath inserted below collar bone which will be an easier less intrusive way for them to give meds and take blood as the veins in the back of the hand dont work as well after time.

She also has platlet and blood transfusion when her counts are low and expect them to drop dramatically after the more powerful chemo drugs. dd halved each day for 5 days and have just started to pick up.

Encourage dd to drink lots and always tell them when she wee and poo as this will take her off hydration.

Good luck and please ask anything, i know the worst day of my life was only a week ago but i feel like i can handles this and you will too x

woodhj and hazlinh.

no experiences to share, but i wanted to offer you both strength and courage for what you both have to cope with...

i really hope both your little girls have an easy ride.

thinking of you and your families. x

thanks woodhj. i know i can handle this too, but i think everyone is just so taken aback at how 'good' i am handling it. i did have a couple of meltdowns privately but i think if all the docs are upbeat, then i suppose i trust them. glad to hear you're being strong about it too.

crikey, what's the GA for? isit the chemo inj into spine? my doc's not done it yet i think. is it really every week? basically we did bone marrow and lumbar punct yesterday (he did it under ketamine, is that normal??) results today confirmed it was ALL, but the stage will only be known later?

we got started on allopurinol and prednisolone syrups yesterday (this will be for 5 days to a week i think), and today is the second day. more blood transfusion, and iv drip. we're having 2nd round of bone marrow next tue, also starting vincristine and asparaginase tue, and having a chemo-pod(sp??) under the collarbone. i suppose its like your portacath?

i'm not quite sure if we're having dexamethasone and Cotrimoxazole, haven't seen it in our protocol altho i only have a rough version at the moment...

anyway, maybe we can cat each other? i have never actually done it before, so not sure how to do it...

thanks chimchar..

hackneyzoo, hope your ds has had treatment by now..yes it is so frustrating due to it being the holiday season

justaboutisfateandtired, sorry to hear about your dad

lisad, thanks for the tips...hope your dh is doing better? i'd be so grateful for the books, i haven't seen any here where i am. would you be willing to post overseas? i'll gladly pay for the postage...

To CAT, you just need to click on Contact Poster on the side of the posters post [iyswim]. You need to pay £5 subscription.

Mumsnet will then forward your message to the persons email address, and you will be able to email each other from there, or keep messaging through CAT if you like.

Or you could keep this thread going, others might join you who are in similar situations - or you could start a new thread with a relevant title.

Or you could have your thread and your private emails, can never have too much support. We'll all keep an eye on your updates I'm sure, if you find you have time and energy to update from time to time.

Might be worth looking at getting your mobile phone package to reflect the hammering it will get, you will need loads of texts and probably intenet too - for checking mail and messages and so on. Just a thought.

Hope the dd's are doing ok today.

I bet a portable dvd player would be good, the ward will have loads of things like that, but a portable one means you can watch lying down or shnuggled with mum, or take it to different departments if there are places to go and boring waits to endure.
You can also get brilliant audio books they could listen to on an ipod, audible.co.uk are really good. My dd loved the thomas stories on long journeys. Great if the ward is noisy and they need peace.

Thinking of you both. x