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URGENT query for those with chemo/leukaemia/neutropenia experience

(9 Posts)
hazlinh Fri 12-Nov-10 03:04:35

My dd (6) has leukaemia ALL (i started a thread on dec 24 2009 upon her diagnosis). She has completed the first year of her 2-year chemo and is in hospital on an extended stay initially due to infection and fever but now her fever has gone down but we're still here after 14 days cos her ANC is crawling up too slowly. Her white blood count is currently 3 and her neutrophil is currently 7. It was 2.9 and 4 respectively on Wednesday. We were planning to go on holiday on Monday to celebrate the end of the first year and I would like to know if anyone has any TIPS on how to raise ANC faster so we can go home before Monday and then go on holiday!!! Please, anyone? Am desperate.
xx

hazlinh Fri 12-Nov-10 12:50:02

bump

hopalongsausage Fri 12-Nov-10 12:53:49

Hi Hazlinh - am a paediatric nurse, but not in oncology - however, have you spoken with your paediatric oncology nurse specialist for some tips? If you are still in, get the nurse looking after your DD to page / bleep them. Otherwise, talk to the Dr based on the ward. Where were you planning to go on holiday? If its overseas, best also check your insurance policy....

Hth a bit.... x

lisad123isgoingcrazy Fri 12-Nov-10 19:20:13

sorry no hints, but how you holding up?

hazlinh Sun 14-Nov-10 03:23:46

hi hopalong, i have asked them but they said there's nothing to do but wait, and just to make sure dd eats well in order to boost the counts. she is eating a lot, she has a good appetite and i've been feeding her all sorts, fast food, pasta, rice, veg soups, chicken, fish, wheatgrass drinks, lots of fruit, hot chocs, multivitamins. the Dr said that some people take longer to build up. He did say there is something that could be given to normal patients to raise neutrophils, but it is not suitable for leukaemic patients as we don't want the cancer cells to come back, and i guess a sudden artificial increase in the white cells could prompt this?

i was just hoping and wondering if by some chance some mother had discovered a particular type of food that magically raised neutrophils! like how chicken liver, leafy veg and beans are supposed to be good for haemoglobin


we're in malaysia, and we were planning to go to singapore which is just next-door, and we've been told to go to the National University of Singapore in case of any emergencies, dd's Dr works closely with them and all the bone marrow samples get sent there and they have DD's file. But you're right, I just realised we forgot to check on insurance or costs!

Hi Lisa! It's so nice to hear from you again, hope everything is going ok on your
end? Dd's doing well, still in remission, just the occasional infections, sigh. I think I was starting to suffer from cabin fever, being stuck in hospital for so long, but we've just been discharged yesterday, although her counts are still low, but Dr said to go home, not to go anywhere, and to come back for another blood test on Monday.
Am still working full-time, just from home or hospital or wherever I happen to be. It's stressful at times, I don't even know how I manage but at least I haven't got any other children to take care of, so that makes it easier I guess. And the good news is that dd has finished the first year which is more intensive than the second one which is the last. phew

CharlieBoo Sun 14-Nov-10 10:43:19

So pleased your are home. I followed your old thread and have thought about how you are getting on often. Great news your dd is in remision. Best of luck for this next year.

hopalongsausage Sun 14-Nov-10 17:01:20

Oooh I see, sorry I can't be of more help - wish I could give a magical answer! That's great you've got fab links with Singapore and they have your DD's file. It's also really positive that she has a great appetite as obviously getting all the nutrients in etc is the best thing for her. Am not an expert on children's cancer (I do hormones!) but it sounds like your Dr is on your side. Fingers crossed for you, and lots of luck! Hope you get to go on your holiday! smile

oddgirl Sun 14-Nov-10 18:48:01

Hiya-not sure if ANC measured differently over where you are but here a neutrophil count of 7 is above normal-it would have to be below 1 to be considered neutropenic but I guess different measures may be used...there is no "natural" way to increase neutrophils-you can use a drug called G-CSF which can promote neutrophil growth. However we are often reluctant to use esp if neutrophils are coming up nicely on their own umless a child is running into real problems with bacterial or fungal infections and has prolonged neutopenia. Really hope she continues to recover well.
HTH

hazlinh Wed 17-Nov-10 16:46:04

Hey CharlieBoo, thanks so much for thinking of us! How are you?

Hey Hopalong, no worries. Thanks for the support She's got a massive appetite as she's often on steroids. She's not on them at the moment, but the effect seems to have lingered on from the last round. Either that or it's comfort eating...
The good news is that her neutrophils percentage and ANC shot up after a day of being at home! So we're in Singapore now and she's having such a great time She isn't looking forward to going back this weekend. Not sure if the improved blood counts were just because it was on its way up anyway, or if it was the familiar, relaxed environment of home without the added stress of nurses poking here every 2 hours for temp or bp, or if a tip given by one of the mums helped a bit. She said to slow-cook black beans and chicken into a soup which I gave dd on Sunday.

oddgirl, sorry meant to say that her neutrophil percentage was 7 on friday. it was 9 on saturday but miraculously went up to 20 on monday. her anc was 0.2 on saturday, and went up to 0.7 on monday, which was not exactly brilliant but good enough for us to go on a break.

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