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Thread: 2 1/2 year old daughter diagnosed with PH + ALL Dec

  1. #1

    2 1/2 year old daughter diagnosed with PH + ALL Dec

    My 2 1/2 year old daughter was diagnosed on December 10th 2012 with Acute Lymphoblastic Leukemia, 1 week after that we were told that she has the Philadelphia + Chromosome. We are on day 20 of Treatment and my little girl is just so upset. She is very irritable, sleeps alot, and is hardly eating. She came off of the Decadron on the 16th day and started Prednisolone, I was told it takes some time to see her gain weight but I am impatiently waiting. She is so skinny only weighing 23lbs, my heart just breaks for her. She hardly says a word, she just lays down and can't walk yet. We were in the hospital for 16 days and this is our first week home and still no improvement. I'm really looking for any advice possible as I freak out over every little thing. I just want to see her smile.

  2. #2
    Administrator Top User Didee's Avatar
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    Hello. I am so sorry to read about your daughter.
    It is every parent's worst nightmare that something serious will happen with a child.
    I am not familiar with this cancer at all and I am posting to welcome you to the forum.
    I hope someone will be by who can help you.
    We also have a busy caring and support board should you wish to post on it.
    I hope her treatment is successful and that she will smile soon.

    Best wishes.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  3. #3
    Administrator Top User ChemoMan's Avatar
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    Quote Originally Posted by AngelinasMommy View Post
    My 2 1/2 year old daughter was diagnosed on December 10th 2012 with Acute Lymphoblastic Leukemia, 1 week after that we were told that she has the Philadelphia + Chromosome. We are on day 20 of Treatment and my little girl is just so upset. She is very irritable, sleeps alot, and is hardly eating. She came off of the Decadron on the 16th day and started Prednisolone, I was told it takes some time to see her gain weight but I am impatiently waiting. She is so skinny only weighing 23lbs, my heart just breaks for her. She hardly says a word, she just lays down and can't walk yet. We were in the hospital for 16 days and this is our first week home and still no improvement. I'm really looking for any advice possible as I freak out over every little thing. I just want to see her smile.
    Hi

    My heart breaks for you. take hope in the fact that children deal with this much much better than adults and their powers of recuperation are legendary. If there is no marked improvement in a week then you should contact the doctors for some advice. Don't be shy, be strong and persistent. As the saying goes the squeaky wheel gets all the oil, so be that squeaky wheel it is the best thing you can do for your daughter.

    As Didee says drop into the support forum if that is what you need, plenty of people to walk with you there.

    I hope things improve soon, let us know how it goes if you feel up to it.
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  4. #4
    Thank you so much for your replies, I took her to the clinic on Wednesday for her chemo treatments and it turns out she was dehydrated and her sodium and sugar levels were dangerously low, we were admitted to the hospital again for extensive fluids and they also added some more medications. She is now on 2 steroids to see if it will increase her appetite. If we don't see a difference soon they will want to put in a feeding tube. I'm hoping that we will be going to the Childrens Hospital of Philadelphia soon where they have an entire unit dedicated to just Leukemia, although only 5% of children with ALL have this philadelpia positive chromosome, i'm hopeful that we will be able to find someone who understands how to treat and cure this disease. Angelina is my life and I just need her to be cured ! We should know soon if my son is a match to her bone marrow because the transplant will be very helpful to her during the next courses of treatment. Saying my prayers everynight

 

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