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Original poster

Possible leaukaemia - anyone can share experiences?

106 replies

hazlinh · 25/12/2009 16:27

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.

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Original poster
hazlinh · 30/01/2010 10:40

hey there,

glad to hear your dd is ok, and has had her portacath! is it the one with the lines hanging out or is it the one which you can go swimming with? dd is having hers done next week, and i think we'll opt for the one that she can go swimming with. am dreading the GA though, so am relieved your dd went through it ok!

dd's blood counts have really improved. her neutrophils are 70 at the moment! but her platelets are still low at 53. They were 304 on Tuesday! I don't even know why! we had the 4th bone marrow on thur, that'll tell us if she's std risk or interm or high. on mon we're going for an 8-hr chemo called Cyclo something or other. Did your dd have that done? I don't think we're having Mercap at all, I haven't seen it in our protocol. What we're moving onto next week is the daily injections of Ara-C, that's Mon through Thurs, for 4 weeks. Will you be having that?

Dd's hair has started falling out a little, by strands, so we cut it very short the other day. she still looks like she has normal hair though, there aren't any bald patches. sigh

Gosh you're overdue? Hope you deliver soon, and that everything works out somehow. Will you be having help with the baby, or will you be taking care of both?
Sending you positive vibes x

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hackneyzoo · 30/01/2010 21:01

Hi Hazlinh and Woodhj, I have been checking in on your progress over the last month. I am glad your DDs are doing well and you both seem to be so strong and coping. My DS(12 months) is about to have a second biopsy next week on a tumor and has provisionally been booked in to have a chemoport (same as a portacath?) put in in a fortnight with a view to starting chemo. Its really reassuring to read your posts and see you coping so well and to know that we are not the only ones going through this.
Woodhj, good luck with your new baby. Sending both your families lots of love.

Original poster
hazlinh · 31/01/2010 11:05

Hi hackneyzoo,
sorry to hear about your DS, and he's so little too we're having our chemoport in next week as well. Anyway, thanks for checking in, and please do keep us updated.

And don't forget to take care of yourselves, yes you too woodhj, i know it's easier said than done but try and take some time out for yourself at least once a week if not more. Otherwise we'll get tired or sick or worse...

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Original poster
hazlinh · 02/02/2010 09:10

woodhj, we have just started on mercaptopurine! or something like that. must be the same as yours. they call it 6-mp here so i got a bit confused . it's a daily tablet tho...

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woodhj · 03/02/2010 08:37

Hi everyone just a quicky to let you know i had a beautiful baby boy on Saturday at 10.56pm we have called him Oscar and he is gorgeous. He weighed same as daughter at birth 9lb 2oz but still managed to gt him out within 2 and half hours from start to finish.

Original poster
hazlinh · 03/02/2010 10:09

yay! congrats! how wonderful. and goodness me 9lb 2oz and out so fast!! u must share your tips with me, dd was less than 6lb (she was really early) and it took 24 hrs!!!!

anyway quick update: dd has been finding it difficult to climb up the stairs n she was falling over a bit lately so we've seen a neurologist and did a nerve current test, and also a blood test to check potassium levels are ok. oncologist reckons it cd be the vincristine, as it sometimes causes neurological damage but he assures us it is temporary. sigh

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woodhj · 03/02/2010 20:04

DD still cant walk after her first lot of treatment on christmas eve. She has stopped having the weekly vincristine about two weeks ago and has started crawling, not very far as knees hurt. Strange being so excited about your 3.5 year old crawling.

DD (I will call her by nickname) Mi mi weight went up to 19kg with the steriods so get doing some back exercises as its very hard picking them up off the couch and pulling knickers and trousers up when they get off the toilet as you cant stand them up as their knees cant take it. It is the most difficult part for us not watching her run about playing but sat on the couch doing puzzles or drawing. They have told us it will return and we have organised some time in the hydrotherapy pool.

You may find the mercaptopurine changes dd personality Mimi has started throwing things in a tantrums and ignoring people but just take it with pinch of salt. Surprisingly she has taken to her baby bother brilliantly the only problem we have is she wants to do everything for him dress him, change bum, feed him.

We are in sheffield tomorrow for surgery day again, you will get use to GA you actually want them to go down as they are starving and constantly asking why they are not allowed food. Mimi asks when is it my turn?

Dont worry to much its a very short procedure and they come back very alert and ready for food.

Original poster
hazlinh · 04/02/2010 04:31

glad to hear your Mim's started crawling. it broke my heart to see my dd having to crawl up the stairs on her hands and knees

oh no i was so relieved to start the 6-mp and see the back of dexa. dexa's really changed dd, she's totally morose and unresponsive. she's been throwing tantrums and ignoring people for two weeks already or maybe even three.it got really bad this last couple of days too, but since she stopped the dexa on tue she's started smiling a little bit now, and also playing with the wii and toys again, and also asking some questions n being slightly chatty again. and to think i used to complain she talked too much

haha yes dd always shouts it's her turn when the doc goes off to write down some notes. she thinks he's forgotten about her. can't wait for the chemoport, we're having it inserted friday at long last. dd's nt terribly keen tho because she overheard the doc saying they will still need to prick her a teensy bit each time so she's not impressed. sigh.

good luck with the new baby and handling chemo x

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Original poster
hazlinh · 07/02/2010 16:11

quick update: dd's had her chemoport installed on fri, i was so nervous, but it went well i think. she woke up so quickly n immediately demanded to go home, and didn't complain of any pain. she's been having headaches though since then, so will ask the doc on monday about it. she's also a bit sensitive about her stitches, and she's been going about with her neck angled to one side, favouring her chemoport side. sighhhh.

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Original poster
hazlinh · 12/02/2010 02:31

another update: dd's been having a high fever since yesterday so we've been warded since then. sigh. she's not happy at all as it was her birthday and she was upset about missing a small party we were going to have in her school. so i've told her we'll have it when she's better

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PollyLogos · 12/02/2010 06:39

I happened upon this thread over Christmas and have been checking in to read the updates.

I'm sorry to hear that you and dd are in hospital - especially on her birthday but wish you all the best and a speedy return home. x

Original poster
hazlinh · 12/02/2010 13:31

Thanks PollyLogos...

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CharlieBoo · 12/02/2010 19:10

I too am following to see how your gorgeous girls are doing. You are in my thoughts and prayers and keep strong, you sound like you are coping amazingly well!! Xx

Original poster
hazlinh · 14/02/2010 10:11

Thanks CharlieBoo..

We're still in hospital, it's a fungal infection, and hopefully we'll be out soon. Sigh.

Hope woodhj and dd are doing alright

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Original poster
hazlinh · 22/02/2010 06:53

finally out on saturday thank goodness. it was like breaking free from prison.

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PollyLogos · 22/02/2010 11:09

WOW that was a long stay I bet you and dd are extremely relieved to be back home again!

I hope that dd is much better and that she will now be able to get down to the business of planning her re-scheduled birthday party!!!

lisad123wantsherquoteinDM · 23/02/2010 14:14

hi Hazlinh

I got your emailbut now cant find it and i have books and stuff ready to post can you please email me again? sorry

Original poster
hazlinh · 24/02/2010 03:40

Thanks PollyLogos, her blood counts were very good on Sat so we had the party immediately on Tue before anything else happened! she had a great time, and sang all her favourite songs and did all the hand movements and everything. and she got quite a lot of nice pressies too

LisaD, ok, will email you again. Thanks so much. Appreciate it

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Original poster
hazlinh · 11/03/2010 13:16

Hiya...
just a quick update, after several interruptions, what with the long hospital stay due to fungal infection etc etc, we are finally completing Protocol 1B or whatever it's called tomorrow, we are doing the 2nd round of Cyclo chemo (8 hr chemo).

woodhj, hope you and your dd are doing ok..

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FarloRigel · 29/03/2010 20:00

Hi

Just to say I know how you feel also, my DD (3 1/2) was diagnosed with ALL on the 1st September. We've had a few complications including a nasty fungal infection that destroyed her spleen, but her bone marrow and CSF are clear under the microscope so things are not bad on balance. Hope things are continuing to go well for you.

Original poster
hazlinh · 01/04/2010 06:45

Hi FarloRigel,
oh my goodness, i didn't know fungal infections could do that am so sorry to hear that. good that her bone marrow etc is clear though..

we're warded for the 1st round of mtx under protocol m at the moment...so far she has been given the all-clear too, no cancer cells seen fr yesterday's biopsy. and she is categorised as standard risk. but she's had 2 fungal infections prior to this..hope she doesn't get any more

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FarloRigel · 09/04/2010 22:19

Hi Hazlinh,

really glad to hear things are going well for you. The loss of spleen is apparently pretty rare even with a nasty fungal infection. She is keeping really well now that they have removed it though and we are moving again with her chemo - we were ten weeks behind which was very stressful as she is unfortunately in a higher risk group. We're just finished her first intensification and waiting for her counts to bounce back enough to start proper interim maintenance and then we can get home for a while. I really hope your DD sails through the rest of her inpatient stay!

Original poster
hazlinh · 10/04/2010 09:05

Hey FarloRigel,
Good to know your DD is back on track with her chemo. Never mind, don't worry about the delay. When we were delayed due to the various infections, I keep telling myself it's ok it's ok, slow and steady wins the race...I think, anyway. Hugs to your DD. Are you giving her any supplements btw? The mums here are really keen on all sorts of supplements. But my DD won't take them and I'm not entirely convinced of their benefits so am not forcing her... I feel guilty at times especially since DD is rather fond of fried /fast food...

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FarloRigel · 10/04/2010 13:08

She has been prescribed a small amount of a very basic and limited vitamin supplement here by the medical team, mostly because she has been in hospital pretty much continuously for the whole seven months and the vegetarian food in the hospital is ridiculously unbalanced, hardly a vegetable on the menu - it's all macaroni cheese and plain pizza shockingly. We keep going out and buying her better stuff though, we're so lucky she has such healthy tastes (at least when she's not on dex and craving chips all the time). I did read somewhere that too much vitamin supplementation, particularly if it includes folic acid, can interfere with chemotherapy action so I'm not taking any chances with a high MRD and leaving it at the bare minimum. Maybe your DD just knows what's best for her !

Funny though how their taste changes with the chemo though, she's mad for strong tastes just now; marinated olives with garlic, baby plum tomatoes, curry, strong miso soup, egg mayo and pickled onions are her absolute favourites at the moment. Odd enough choices for a 3 yr old.

Hope all is going well with you.

Original poster
hazlinh · 10/04/2010 18:04

wow your dd does have healthy tastes...hmm our hospital food sounds much more balanced, there's always veg on the side, usually rice or noodles if not pasta, as well as a veggie soup, but dd won't take any of it but she's starting to like curry a lot now and a bit of egg mayo too! she never used to like anything remotely sauce-like, must be the chemo doing weird things to her taste buds...the paed did give her a very basic multivit so that's about all she takes apart from the dexa and 6mp, and i don't even give it to her everyday, probably 2-3x a week if at all. yes i read somewhere that high levels of vit c can protect cancer cells from chemo, so i'm not taking any chances as well!

thanks for sharing your experiences, take care...

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