Quantcast Update on my son with ITP/chemo.
 
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  1. #1
    Join Date
    Jul 2002
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    Default Update on my son with ITP/chemo.

    Discouraged & heartbroken. After a visit with the hematologist and his latest CBC, the Doctor is pretty certain that he is not responding favorable to the chemo :/ He said that usually if it's going to work, you will see a small rise in the platelets during the first 4 weeks.
    Unfortunately David's platelets were 50K during his last round, and have steadily fallen over the last 4 weeks. Now they are at 24K, near critical-low level He hasn't had one rise since his chemo completion. Though the doctor did say that it can take up to 12 weeks, however statistically the odds are not in his favor.
    We can either do another round of chemo, or go onto a different treatment. But of course the "higher" you go, the more severe and often lasting side effects there are.
    We don't really want him to go through chemo again. So the hematologist said that we can treat with IVIG as needed.
    The hard part is that basically he still can't do the "full fledged" kiddo thing.
    Who knew over a year ago that this would still be going on.
    This is all so draining on him, on me, on the family. Combined it with his ASD, SPD, and anxiety and.....I don't know. I'm just weary.
    Terra - Wife, mother, special needs teacher. Disney addict! o

    Advocate for my 2 sons. David: Auto-immune disorder. Praying for remission!ASD/SPD & Aaron: ADHD/Anxiety/ASD. Life makes us stronger!

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  3. #2
    Join Date
    May 2000
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    I'm so sorry for what you and your son are going through, Terra. As a nurse, I know that hematologic disorders are so difficult to manage. I can only imagine how heartbreaking this is for you. I will be praying that you find the right treatment to put the ITP into remission.
    Beth
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  5. #3
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    I'm so sorry, keeping your son and family in my prayers.
    - Lynn -
    INTERCOT Staff: Theme Parks, DVC

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  7. #4
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    I am so sorry to hear that, you, you son and family will be in my thoughts and prayers.
    Cher (aka TheSorcererofFantasia)

    If you live each day to it's fullest you will never have regrets . . . there is no rewind.

    4/15/55 - 4/7/08 Til we meet again
    2/25/87 - 4/27/11 Always & forever in my heart & soul BKB!

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  9. #5
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    So sorry to hear. I was so hoping you would have better news to share.
    Linda aka: Faline
    INTERCOT Staff: Vacation Planning,Trip Reports and Disney Camping
    faline@intercot.com

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  11. #6
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    I am so sorry. When I saw the threat title, I was so hoping that it was a good update. Sending prayers, and strength for you - I hope they find the right combination of treatment soon!
    Heather aka ibelieveindisneymagic
    INTERCOT Staff: Vacation Planning, Nightlife, Shopping & Waterparks, Collectibles


    Engaged at the castle!
    My Disney Home is POFQ


    Upcoming: Carnival Cruise & Disney October 2020

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  13. #7
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    Oh Terra - I so wish you would have had better news to share with us. I have been thinking and praying for you and your son as well as the whole family. I definitely would move on to a different treatment. I hear your words and I cannot even fathom whatvyou are going through each & every day. Just remember you have all of us here to lean on and while we are not next door we are literally a text away. You have the strength to do this and so does he. Have faith even though it is beyond difficult on most days. I am sending more good thoughts and prayers for you all.

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  15. #8
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    Lifting your family in prayer. So sorry that y'all aren't getting the hoped-for results right now.
    Carrie

    CBR: 2/21-2/25/17
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  17. #9
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    Thoughts and prayers from PA. Stay positive.
    Lanny
    Have been going to WDW since 1981
    Have a Great Day
    Health and Happiness to all Disney Freaks

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  19. #10
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    I'm so sorry! I'll be thinking of you today, Terra! I wish you and your family all the best. Here's some pixie dust!
    "I want to be apart of your world."

    All Star Music 2000-present & future

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  21. #11
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    Terra, I am so sorry to hear that the treatment did not help improve his condition. Will keep you all in my prayers.
    Christine o

    Intercot Staff-Accommodations, Dining, Guests with Special Needs

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  23. #12
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    Thank you all so much.
    Terra - Wife, mother, special needs teacher. Disney addict! o

    Advocate for my 2 sons. David: Auto-immune disorder. Praying for remission!ASD/SPD & Aaron: ADHD/Anxiety/ASD. Life makes us stronger!

  24. #13
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    I'm so sorry for your struggle. You and your family remain in my thoughts and prayers.
    Chris, aka Strmchsr
    INTERCOT Staff: Vacation Planning, Guests with Special Needs, and Weather Guru

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  26. #14
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    So very sorry. I can only imagine how hard this has been on you all. I'll continue to send all my best wishes your way and hope for some positive news for you. What a little trouper he must be to go through so much.
    Sherri
    Next: Aulani Celebration 10/2018 (50th)
    Past Stays: Contemporary, GF, Poly, BC, POP, POR, Dolphin, AKL Kidani, BLT
    1990 August Honeymoon- GF
    Delighted Disney Return Guest since 1981, DVC (BLT) since 2014


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  28. #15
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    Very sorry to hear such discouraging news. I can't imagine how difficult this must be on you all. As if ASD and its related issues aren't enough...I know THOSE struggles, and I can't fathom having to add health problems on top of it.

    You are stronger than you think, though, and you WILL get through this. Stay positive for your son and I hope he is able to get back to being a kid again very soon.
    Natalie
    INTERCOT Staff: Disneyland Resort-California, The Water Cooler

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