Any experience with pediatric brain tumors?

Discussion in 'Off The Beaten Track' started by Holley Calmes, Sep 11, 2012.

  1. BittyBug

    BittyBug Kiteless

    Joined:
    Jan 27, 2003
    Messages:
    15,150
    ((((((Spaz)))))) You have my heartfelt wishes for a positive outcome, and I hope you will be able to apply the same determination, perseverance and great attitude that has allowed you to be so successful in skating to your disease and that you will beat it.
     
  2. agalisgv

    agalisgv Well-Known Member

    Joined:
    Jan 29, 2005
    Messages:
    23,908
    Keeping you in my thoughts and prayers, Spaz.
     
  3. skatemommy

    skatemommy Well-Known Member

    Joined:
    Jun 24, 2004
    Messages:
    3,214
    Love and prayers Spaz...I want to meet you at Adult Nationals! :hat1:
     
  4. Simone411

    Simone411 aka IceSkate98

    Joined:
    Feb 28, 2007
    Messages:
    7,213
    (((Spazactaz and Anna))) Keeping you both in my thoughts and prayers.
     
  5. Spazactaz

    Spazactaz New Member

    Joined:
    Nov 7, 2004
    Messages:
    1,812
    Yes it did! I should've updated you all here, as so many of you were supportive at that time. The doctors here kept telling me it was just dry air, etc... so I went to a different city to see a specialist. He put the camera up my nose and in 5 seconds found the tumor!! Thought it would be benign... took out a few chunks for a biopsy, wasn't that lucky. :(

    It's a slow growing cancer so apparently chemo would do nothing for it... and since it has spread he said surgery is not an option, so idk. :S the radiation was the worst experience of my lifeeeee. I went 3 months with no food... having to shove a straw down my throat and force myself smoothies. horrrrrrible!

    I might be absolutely insane, but if I have it my way I will trying for regular nationals! haha. I skated yesterday and did a double sal... so it gives me 1.5 months until sectionals to at least get up through triple lutz back. impossible probably, but we'll see. :p

    and thanks so much, all of you! <3
     
  6. Anita18

    Anita18 Well-Known Member

    Joined:
    Apr 22, 2001
    Messages:
    11,074
    Damn. :(

    Yeah in hindsight, my friend was showing some of the classic symptoms of pancreatic cancer, but because of his youth and complete lack of risks and family history, the doctors refused to say it was cancer. Only until they had crossed everything else off, did they really start considering it. Not that it helped, since he had a ton of scans looking for digestive issues and they didn't see anything until it had already spread. :(

    Yeah from what I heard from my friend, chemo is no fun either. He still has his hair, but lost a ton of weight from his already thin frame.

    It's good that it's slow-growing, but it sucks that they can't take it out. Is it really gonna be touch-and-go at this point?
     
  7. Spazactaz

    Spazactaz New Member

    Joined:
    Nov 7, 2004
    Messages:
    1,812
    It's so sad that they never take young people seriously. I was going in all the time, going to the ER, etc... something was WRONG and I knew it! But they just kept telling me "you're young and healthy" and brushing me right off. I am sooooooooooooooooooo frustrated with doctors. They still give me zero answers and don't care about any of the problems I'm having.

    But yeah.. they're just going to keep doing MRIs apparently to monitor me and see how fast it's growing or whatever.
     
    Sparks, oleada, jamesy and 3 others like this.
  8. SHARPIE

    SHARPIE Hapless Board Owner Staff Member

    Joined:
    Apr 16, 2001
    Messages:
    16,787
    My very best wishes to you Spazactaz, especially with your skating. xox
     
  9. shan

    shan Well-Known Member

    Joined:
    Nov 3, 2003
    Messages:
    16,886
    ((((Spazactaz))))
     
  10. flowerpower

    flowerpower Well-Known Member

    Joined:
    May 29, 2005
    Messages:
    1,687
    Best wishes Spazactaz. Hope you make it to Nationals. I'll be cheering for you!
     
  11. barbk

    barbk Well-Known Member

    Joined:
    Nov 22, 2002
    Messages:
    5,959

    Me too!!!
     
  12. victoriajh

    victoriajh Well-Known Member

    Joined:
    May 26, 2002
    Messages:
    1,998
    Me three!!!!
     
  13. Holley Calmes

    Holley Calmes Well-Known Member

    Joined:
    Jul 18, 2006
    Messages:
    3,860
    Anna's tumor was a pineal blastoma. Rare but aggressive. 50% survival rate in older kids. Recurrance general in 2 years or so. We'll hope she's among the 50%.
     
  14. tarotx

    tarotx Well-Known Member

    Joined:
    Oct 26, 2003
    Messages:
    1,528
    ((Anna))

    I hate "rare" cancer cause it means it gets little funding and you have to rely on doctors trying to find a cocktail that kind of works but has a good chance to kill you it's self.

    Unfortunately most Childhood cancer is labeled rare even if it's not really.

    And Spazactaz I hope your Cancer is so slow growing that you only have to worry about nose bleeds for 50+ years. You deserve the chance to feel mostly healthy for a traditional life span.
     
  15. Really

    Really No longer just a "well-known member" Yay!

    Joined:
    Apr 27, 2001
    Messages:
    29,459
    Good luck, Spaz!
     
  16. Garden Kitty

    Garden Kitty Tranquillo

    Joined:
    May 26, 2002
    Messages:
    25,063
    Sending good thoughts and prayers for Spaz and Anna.
     
  17. Holley Calmes

    Holley Calmes Well-Known Member

    Joined:
    Jul 18, 2006
    Messages:
    3,860
    They are trying to slowly shut down the shunt that's draining the fluid in her brain, and it's not going well this morning. We're directly our thoughts and prayers to this procedure. They will decide in the morning whether she will have to have a permanent shunt, which is not at all what we want!

    Hugs to spaz!!!!!
     
  18. skatesindreams

    skatesindreams Well-Known Member

    Joined:
    Sep 30, 2002
    Messages:
    13,845
    Keeping Anna, and those treating her, in my prayers.
     
  19. cholla

    cholla Fearless Musher

    Joined:
    Jun 11, 2004
    Messages:
    9,195
    If you haven't already visited these sites, you can find very useful information HERE and HERE. All my best wishes and hope to young Anna from the bottom of my heart.
     
  20. Holley Calmes

    Holley Calmes Well-Known Member

    Joined:
    Jul 18, 2006
    Messages:
    3,860
    I am trying to send rep to many of you, and I can't because I need to spread some around! But thank you to everyone. xoxoxoxoxo.

    Just got this message from Anna's mother on Facebook. I like to share good news.

    So, again, you guys prayed and God answered! A lot of stuff happened so fast, I haven't had time to update. Anna Mott took a way long nap. When she woke up, she was unbelievably better! Back to the level we had accomplished! Speech showed up, she did well. Then pt and ot came in right after and got her in a chair!!!!!!!
    YOUR PRAYERS WORKED. I wish you were all here to see the change. THANK YOU, WE LOVE YOU ALL!!!!!!!!!!!!!!!&#9829;&#9829;&#9829;
     
  21. Really

    Really No longer just a "well-known member" Yay!

    Joined:
    Apr 27, 2001
    Messages:
    29,459
    Glad to read the good news!
     
  22. skatesindreams

    skatesindreams Well-Known Member

    Joined:
    Sep 30, 2002
    Messages:
    13,845
    I'll be praying for more good news to follow.
     
  23. ChelleC

    ChelleC Well-Known Member

    Joined:
    Jul 7, 2002
    Messages:
    4,442
    ((((Spazactaz)))) Will keep you in my prayers, and best of luck with your skating!

    Holley, I will keep Anna in my prayers as well.
     
  24. skatemommy

    skatemommy Well-Known Member

    Joined:
    Jun 24, 2004
    Messages:
    3,214
    Prayers rising (and praise!) for Anna & Spaz.
     
  25. cholla

    cholla Fearless Musher

    Joined:
    Jun 11, 2004
    Messages:
    9,195
    Any new Holley Calmes ?
     
  26. Holley Calmes

    Holley Calmes Well-Known Member

    Joined:
    Jul 18, 2006
    Messages:
    3,860
    Yes, Anna was doing extremely well Sunday and yesterday. They had her sitting up in a chair. She's eating well. Her vision is still very affected. They took the shunt out.

    Then this morning I read that the pressure had started building up in her brain again, so a permanent shunt is having to be put in, which was not what we wanted.

    It's a roller coaster. But she's still here, she knows everyone and speaks to them. One day at a time. She'll start chemo and radiation next week.

    Thank you so much for your prayers and thoughts. We need them. She has a huge support system with all the other dancers she's grown up with. It's tough on them too-they range in age from about 12 to 17. Most have never faced this type of thing. It's very sobering to them, but they are of an age where they believe if they support her enough, she'll be fine. Sigh. I am praying she will be fine or at least survive and live a fairly normal life. I can happen! I've read the web sites, and it is possible.
     
  27. barbk

    barbk Well-Known Member

    Joined:
    Nov 22, 2002
    Messages:
    5,959
    Holley -- I'm so glad her community of dancers and their families are there for Anna and her family. I hope the shunt placement does the trick for her.

    Spaz -- Wishing you the very best at getting the jumps back, but even what you've accomplished so far is amazing after what you've been through.
     
  28. Holley Calmes

    Holley Calmes Well-Known Member

    Joined:
    Jul 18, 2006
    Messages:
    3,860
    Update on Anna. She has been in the hospital one month as of today.

    She has an infection. They did a procedure to clean out her stitches and the infected area, but the fever is still coming back. Nothing further can be done until the infection is gone, so we are all praying for that to clear up. She really needs to start radiation before the 5% of the tumor left starts growing again.

    She's had good and bad times. Like I said before, it's a roller coaster. The family seems to be holding up well. Inch by inch....
     
  29. skipaway

    skipaway Well-Known Member

    Joined:
    May 24, 2002
    Messages:
    7,546
    I am praying for Ana. So hope that things get better very soon.