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.

[ajandjjmum]

No experience - but feel for you having to deal with this at a time when you must feel that the world is celebrating.
Hope it's not as bad as you fear, but this is not nearly so grim an illness as it used to be.

[alypaly]

hi hazlin...not impressed with the doc for saying brace yourself. They are normally very factual and dont say anything til they have conclusive evidence as they dont like to cause unnecessary worry.very unprofessional. There are other bloood disorders that cause low platelet counts ,so honestly,dont jump to the worst conclsion.

[merrycompo]

What awful news on Xmas day hope someone with experience comes along soon
thinking of you xxx

[hazlinh]

thanks everyone. really grateful for the support. it's been a horrible year and it's a vile month and today was the climax

alypaly, i wasn't impressed either. i asked what it could be if it wasn't leukaemia, and he didn't really reply, and he said he'd dealt with leukaemia kids for 20 years or whatever and it was likely to be leukaemia. he's not my normal paed tho. but i asked around and everybody seems to think this guy is pretty good. what other blood disorders could it be?

[ilovemydogandmrobama]

So sorry... no experience, but do not google

But DS had severe anaemia and he was tested for leukaemia, but was negative.

Happy Christmas to you and hope 2010 is better for you all.

[LynetteScavo]

As the pead says...90% survival rate.

No personal experience, just wanted to send you huge hugs and strength. x

[arionater]

I'm afraid I don't have very up-to-date knowledge, but I didn't want this to go unanswered. My elder sister had leukaemia in the 80s when she was a teenager, and I've kept up a little bit with how treatment has changed. The survival rates for childhood (as opposed to adolescent or adult) leukaemia are now very high, as the doctor said.

My sister was ill for a very long time (several years) because she was treated once and then relapsed and then had a bone marrow transplant (which worked). She had acute myeloid leukaemia (aml) but I think in young children it is much more likely to be acute lymphoblastic leukaemia (all) which responds very well to chemotherapy and almost always goes into remission with chemotherapy treatment. There'll then be further more low-dose treatment after that to maintain the remission and finally eradicate the disease completely. Some children do relapse after initial remission but that too can now be treated quite successfully. So in the first instance you're probably looking at chemotherapy which will mean your daughter being in hospital on and off for a while, and will probably make her quite unwell. I expect you may be transferred to a special unit if you're not in a big teaching hospital already.

I hope that's some help. What awful Christmas news for you. I'm sorry the doctor was not more tactful.

[hazlinh]

thanks for the support everyone, really really really appreciate it.

thanks for sharing arionater...hope your sister is better

[arionater]

Yes, hazlin, she's been fine for twenty years now, I should have made that clear! I hope you get more info soon.

[hazlinh]

that's wonderful news. thanks, i don't know what to now, waiting for haemotologist...

[VerityBrulee]

So sorry to read that you are going through this, especially at this time of the year.

Ds2 had dangerously low platelets when he was 2 and a half, it turned out to be a condition called ITP, idiopathic thromboscitapenia (sp), he needed a transfusion and was in hospital for 10 days and has been the picture of health ever since. It was brought on by a viral infection (cold and sore throat) a week or so before. I was beside myself with worry until we got a diagnosis.

Coincidentally, a boy we knew slightly was admitted on the same day as ds and he had leukemia. BUT, that was 7 years ago and we meet him often when ds plays rugby and he is on the other team. He seems perfectly healthy now, so please try to be opimistic. 90% is VERY high odds.

Thinking of you and your dd.

[hazlinh]

thank you for the words of encouragement VerityBrulee..very helpful...

[hazlinh]

thanks herbietea...

[SofiaAmes]

My kids' babysitter had childhood leukemia as a teenager and it didn't stop her from going on to uni and a masters in teaching (we need educated babysitters in this household because dd dupes all the rest). I hope that it does not turn out to be leukemia, but if it does, make sure the consultants discuss fertility issues with you because your dd's fertility can be affected by the treatments.

[gordonpym]

My bestfriend?s dd was diagnosed with acute myeloid leukaemia when she was 3.5.
As soon as the blood test came back with low numbers she was taken in another hospital for a bone marrow test, the result was given the very same day and she started chemio the next one.
It sound strange to me that they start talking about leukemia without having done a bone marrow test or delaying the bone marrow test saying the doc is on holiday. Hospitals have shift, and someone has to be there and it there is nobody, they have ambulances to go to another hospital and have the test done straight away, especially when talking about young children and cancer.

Anyway, the child had six cycles of chemio, and she spent most of the time in hospital, but the chemio didn?t work so she was put on list for a bone marrow transplant, which did work. and 10 month after diagnosis she was back at home, and now 3 years later she is fine.

Yes it is hard, but you don?t care about the difficulties, what is important is your child?s life.

[hackneyzoowithbellson]

hazlinh, I just wanted to wish you well. I don't know much about Leukemia, but understand the awful worry and stress you must be feeling. My DS (11 months) has a spinal tumour and we are still waiting for a firm diagnosis and treatment, which is especially nerve wracking over the Christmas period when time seems to go slowly and you just want life to return to its normal pace.
If you want factual information about childhood cancer and support and advice info too I have found the macmillan website very clear and informative.
I hope the weekend passes quickly for you and that you get some answers soon.

[arionater]

Just bumping this for you in case there's anyone else around this afternoon with relevant experience. Any more news from the doctors yet?

[VeronicaMars]

Sorry you are going through this, it must be agony not knowing what the results will be.

Thinking of you and your little girl. My dd is 4yo and is playing around me here as I try to type. I am even more grateful after reading what you are going through that she is healthy, I can't imagine the pain I would feel if I was going through what you are.

I am hoping and have everything crossed for you that the news is good.

[lisad123wantsherquoteinDM]

DH has leaukemia atm, and we were the same 9 minths ago. He has CML, there is so many different types but mostly children get AML. Its good that they foulnd it quickly, and DH was confirmed within 12 hours. the bone marrow tells you how far/what stage its at, they should be able to say yes or no to Leaukemia which is what the Hemo dcotrs do.

I would wait for confirmation. We have 2 macmillian nurses that are fab, and used some books for DDs, which Im happy to send you, as we dont really need them now we are further along and the girls know whats happening.

I would also ask for help from friends and family with practical stuff like cooking, cleaning, washing ect.
Most hospitals do 3 monthly car park tickets that save ££££, and also rememeber to take care of yourself.

Dont panic about work yet, most places will give you a good carers leave pay, rather than lose staff, there is also legal guidelines they have to follow.

Which hospital is she in? Do you have enough support?

The doctors do tend to forget how bad it is for people as to them its a daily thing, but I always found the nurses to be more helpful.

Hope this of some help x

[ThumbleBells]

Hazlin, sorry to hear this and I also feel that the paediatrician should have been a bit more circumspect in what he told you. Without a consultant haematologist to confirm the blood film findings, a diagnosis shouldn't be made. I hope they firstly repeated the blood test - when I worked in a haematology lab that would have been our first response with low red cells and low platelets, to rule out poor quality of blood sample; a blood film would then show what the cells look like, with the white blood cells being the important ones at that point. The bonemarrow test should only be done after the blood film has been checked.

Is your hospital quite small? Ours had 2 consultant haematologists so one being on holiday shouldn't have mattered.

So for you that you have this added stress over the holiday weekend - and hope that you have a better-than-expected outcome when the doctors return. Stay strong - childhood leukaemia is eminently treatable now, if that is what it is.

[lisad123wantsherquoteinDM]

"they should be able to say yes or no to Leaukemia which is what the Hemo dcotrs do"

should say that they should be able to tell with JUST blood.