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Thread: My 5-year-old daughter was recently diagnosed with Acute Lymphoblastic Leukemia

  1. #1
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    My 5-year-old daughter was recently diagnosed with Acute Lymphoblastic Leukemia

    I am trying to find a forum/discussion group that I can join that will be of some support. I feel supported with friends and family, but it is not like talking with someone who also has a child going through the same thing or similar. Are there people out there wondering the same?

    Tessa

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    Regular User Chiocciman's Avatar
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    My kids are fine and for that I am happy. I am recovering from ALL....but I am 62. Very strange. I'd be glad to help or answer questions (that I may be qualified to answer). The odds of full recovery are very high, especially in children. That's a really good thing.

    Best of luck. You will be in our thoughts.
    Chuck
    Chuck was diagnosed with A.L.L. in Nov, 2009 at age 61,
    Remission, July 2010, Diagnosed with MDS in Jan. 2011
    Stem cell transplant in July, 2011, Just passed day 130 post Tplant.
    =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=
    Cancer might rob you of that blissful ignorance that once
    led you to believe that tomorrow stretched forever.
    In exchange you are granted the vision to see each today
    as precious, a gift to be used wisely and richly. (UCSF 11 Long)

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    Hi Chuck,

    Thanks for your thoughts! After we got the news and our daughter Emma had spent the first week in the hospital, I finally found some peace of mind to read about it. I was glad to find out the prognosis is very good, but it was still really difficult to hear and start moving through the phases. Emma is in the second phase of therapy called Consolidation. We also just found out that she is low-risk.

    I understand that childhood leukemia and adult leukemia is quite a bit different. Our daughter will be in treatment and remission for 2 1/2 years. Is that the same for adults or is it chonic?

    Tessa

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    Regular User Chiocciman's Avatar
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    Quote Originally Posted by tessaflores View Post
    Hi Chuck,

    .....I understand that childhood leukemia and adult leukemia is quite a bit different. Our daughter will be in treatment and remission for 2 1/2 years. Is that the same for adults or is it chronic?

    Tessa
    Tessa,
    It's about the same for adults, but much tougher because adults don't bounce back the way kids do. Attitude is huge. Try to help Emma keep her attitude high and her spirits up. It will help her through this. That will be tough, as you know, but she will do OK. Even if it comes back, they have a plan for most of it. I see a lot of old people in the clinic who seem to be OK, haha.

    I am new here too and still in treatment, but I want to help others like people helped me. Let us know how Emma does and we'll be thinking good thoughts.

    Chuck
    Chuck was diagnosed with A.L.L. in Nov, 2009 at age 61,
    Remission, July 2010, Diagnosed with MDS in Jan. 2011
    Stem cell transplant in July, 2011, Just passed day 130 post Tplant.
    =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=
    Cancer might rob you of that blissful ignorance that once
    led you to believe that tomorrow stretched forever.
    In exchange you are granted the vision to see each today
    as precious, a gift to be used wisely and richly. (UCSF 11 Long)

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    My 5 year old son was also recently diagnosed with ALL

    Quote Originally Posted by tessaflores View Post
    I am trying to find a forum/discussion group that I can join that will be of some support. I feel supported with friends and family, but it is not like talking with someone who also has a child going through the same thing or similar. Are there people out there wondering the same?

    Tessa
    We've just got him home from 10 days in hospital and I seem to be the only one in the house who seems to be worrying. My husband is running around like there's nothing wrong and Alexandre (son) seems to just be sad he can't play with his friends for the moment. My emotions feel like a yo-yo. Am still waiting to find out the results of whether he's high or low risk and I honestly don't know if I want to know, and just forge on in ignorant hope.

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    hey there i wounder that evryday. i have a 2yr old son who was diagnosed wif ALL october last year and we are from whangarei and spent just under a month down at starship hospital and at the time i was 8mnths pregant.

    i totally agree with u on the bit of having support from friends and family but no its not the same talking to someone going threw the same or similar thimgs. i am only just turning 21 dis month and sometimes i feel soo alone and silly being so young and having to deal with this big step in my life on top of looking after my lill gurl who is nearly 8mnths.
    i find it hard at times and wish i had someone nxt door i can talk to that is gping threw the same fing but unfortunately i dont.
    just the other day i was doing some research and found this site. so atm im reli enjoing it and being able to find other people out thier going threw the same or familier is just a relief but reassureing that im npt alone and thier are others that are doing the same or in some cases thier are some that a worst...

    but yes i am here and very familier wif wats your going or maybe going threw

    teash

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    Hi all postees, I am new to participating in forums, but as my son was diagnosed with ALL 10 weeks ago (4 days after his 9th birthday) I thought that I should have a look at these forums and both give and receive support from the leukaemic community out there.
    My son is now doing well. He was severley affected with muscle weakness form the Steroids, but has now recovered. The other major setback was when he started fitting as a result of the intrathecal methotrexate (IT MTX) but all is under control now and he is back on the IT MTX.
    I was wondering how many other children out there have a hickman line rather than a port a cath? We had a new community nurse today and she wondered why he had a hickman line. Any views on which is better.

    Take care everyone.
    Heather

  8. #8
    Regular User Chiocciman's Avatar
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    Heather, sorry I have been away for a few weeks. I was getting a bone marrow transplant, but am now doing well at 62. I started with ALL and it IS much tougher in adults. I had a real tough consolidation phase, but the kids seem to bounce back. At 50+ we are losing muscle so it's harder to get strong again. Have faith a and a great attitude, that's critical. You guys will be OK...or at least controlled.

    I have had dual ports, pic lines and now have a Hickman. The Hickman has three lines, is easy to maintain, totally painless (after installation), AND you can wear T shirts instead of hospital gowns since it comes out under your shirt, not on your arm. I love mine. My wife maintains it daily. Ask for one if it's available. I think it depends on how many ports they need.
    Chuck was diagnosed with A.L.L. in Nov, 2009 at age 61,
    Remission, July 2010, Diagnosed with MDS in Jan. 2011
    Stem cell transplant in July, 2011, Just passed day 130 post Tplant.
    =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=
    Cancer might rob you of that blissful ignorance that once
    led you to believe that tomorrow stretched forever.
    In exchange you are granted the vision to see each today
    as precious, a gift to be used wisely and richly. (UCSF 11 Long)

  9. #9
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    hi heather
    sorry to hear about your son but thank goodness for sites,forums etc like this. i hv a 2yr old son who was diagnosed october lastyear with ALL and he has a powerport. we hnvt had a hickmen line at all and honestly i have no idea of wat a hickman line looks like so i searched it. looking at the images i am happy to say that the power port looks alot easier then a hickmen line as it is under the skin and thier are no lill tube or nefing hangout. only time u see nefing hanging is wen he is accessed hvn chemo, but as ur son is a lill older u dont have to worry bwt him pullin hia cords or something like myself, or a toddler tugging on them. hia is a pic of the powerport that my son has. what it looks like and wat it looks like under the skin.
    http://1.bp.blogspot.com/-lsuau8_A0K...ly+22+2011.jpg

    this is new to here in new zealand and is similer to a port a cath i fink and very painless, and easy for chemo, iv antibiotics etc
    i hope this helps you some how

    Letitia Rossiter

  10. #10
    Regular User Chiocciman's Avatar
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    Just my two cents: I have had two Pic lines, one "dual" power port and I now have a Hickman. I found the dual port painful because they penetrate the skin each time they infuse or draw blood, and there is only one or two ports. The Hickman comes out over my left breast and "Y"s into three lines, a red one for blood infusion and draw and and white and blue for other (totally separate) needs. I obviously don't have to deal with a bra, but the lines hang comfortably inside my shirt, above the belt line, and the staff love them. We flush them once a day and they are fast and totally painless. Just another opinion to toss into the mix.
    Chuck was diagnosed with A.L.L. in Nov, 2009 at age 61,
    Remission, July 2010, Diagnosed with MDS in Jan. 2011
    Stem cell transplant in July, 2011, Just passed day 130 post Tplant.
    =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=
    Cancer might rob you of that blissful ignorance that once
    led you to believe that tomorrow stretched forever.
    In exchange you are granted the vision to see each today
    as precious, a gift to be used wisely and richly. (UCSF 11 Long)

  11. #11
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    Hello. I am also looking for info and support about ALL. My boyfriend was diagnosed about a month ago with the T-cell type. Please keep us updated on Emma's treatment and recovery <3

  12. #12
    Regular User Chiocciman's Avatar
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    This is a good ALL thread, with lots of young people involved. A couple of thoughts from a veteran. First, I know you're scared, but you have to be strong. A positive attitude is everything, especially in a patient. If they see you running around like a chicken (haha) they will pick up on it and worry to. There is enough to worry about even if you ARE positive....but it will all work out. I am not being critical here, but attitude is soooo important. At 62, I am sure I did better because of it.

    Secondly this whole thing is a refined process (Protocol). It's very long and I have often been discouraged, but it gets better. They MUST drink what the doctors tell them too (which is often more than the kids want). The medication will easily dehydrate you so you have to keep up to stay strong. There is a lot of weakness due to the steroids, etc, but as you have heard it goes away. Keep 'em walking but listen to your body and don't push too hard (the kids). Finally stay the course and do all that they say to do. You guys will do fine.
    Chuck was diagnosed with A.L.L. in Nov, 2009 at age 61,
    Remission, July 2010, Diagnosed with MDS in Jan. 2011
    Stem cell transplant in July, 2011, Just passed day 130 post Tplant.
    =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=
    Cancer might rob you of that blissful ignorance that once
    led you to believe that tomorrow stretched forever.
    In exchange you are granted the vision to see each today
    as precious, a gift to be used wisely and richly. (UCSF 11 Long)

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    Hi everyone. As some of you may know my now 3yr old son has ALL. He has had his ups and downs along the way. And it is so true that no one can really understand what your going through unless they to have or are experiencing the same thing. It was extrememly hard to get oral meds into Khan. Now at the age of 3 he will remind me that he needs his meds before bed lol. He had a port put in 8+ mths ago and that has been wonderful. It got infected and had to be removed and another put in, just one of the many issues i guess.

    Chiocciman great news to hear that your transplant all went well. Its always good to hear of the success stories.

    If anyone has any queries or questions feel free )

  14. #14
    Regular User Chiocciman's Avatar
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    Thanks KEmum, I'm 63. If I can do this, your paths with young people will NOT be easy but it should be successful. Just remember that attitude is everything....yours and the child's. Kinda' tough to get a three year old to have a good attitude, but remember A.L.L. is a mostly childhood disease. We older folks have to fight harder but today they DO have a handle on ALL. Trust them and do all that they say.......and drink and shower a lot. It flushes the medication through the system and washes off the medication sweated out during sleep and other time. It does make a difference. Hang in there guys. It does get better.

    Chuck
    Chuck was diagnosed with A.L.L. in Nov, 2009 at age 61,
    Remission, July 2010, Diagnosed with MDS in Jan. 2011
    Stem cell transplant in July, 2011, Just passed day 130 post Tplant.
    =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=
    Cancer might rob you of that blissful ignorance that once
    led you to believe that tomorrow stretched forever.
    In exchange you are granted the vision to see each today
    as precious, a gift to be used wisely and richly. (UCSF 11 Long)

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    The good news is: Leukemia is 97% curable in children
    Last edited by po18guy; 08-15-2014 at 06:37 PM. Reason: Non-charitable comment removed

 
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