Any experience with pediatric brain tumors?

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

  1. Holley Calmes

    Holley Calmes Well-Known Member

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    Actually, the sinus infection thread led me to start this.

    A lovely young ballerina from my pre-pro company is battling brain cancer. She literally dropped to the floor without warning in her home ten days ago and was taken to the ER. They found a 5cm brain tumor at the base of her brain in the back....

    She has had 2 surgeries, and they will start chemo in 2 weeks. I am just grateful she survived the 2 major brain surgeries. She is a strong girl, but this kind of thing is brutal to say the least.

    Her only symptoms were constant headaches that were diagnosed as sinus and allergy issues. I didn't want to put that on the sinus thread for obvious reasons....

    I wondered if any of you have had experience with brain cancer/tumors in young people. What are her chances?

    Here is a photo of her:

    http://www.pbase.com/rcalmes/image/118291922


    She is only 16, and she is a lovely girl. Her name is Anna. Your prayers and best wishes are greatly appreciated.
     
  2. rfisher

    rfisher Satisfied skating fan

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    I'm sorry for the girl, but survival really depends on a number of factors including exactly where the tumor was located and the cell type. Chemo is not typically effective against many brain tumors due to the blood-brain barrier. Gamma knife (very intense, highly focused radiaiton) is often more effective, but her oncologist certainly makes the call. I doubt her oncologist or surgeon are giving her or her parents a lot of survival statistics because it just really depends.
     
  3. Alex Forrest

    Alex Forrest Banned Member

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    What kind of cancer is it? My cousin died at age 14 from (I think) Glioblastoma. She was diagnosed in September, and died in April of the next year. When her parents wanted to give her a bangout Xmas knowing it would probably be her last, the only gift she wanted for Xmas was to be alive. I was just a child when she died, but that is pretty powerful. I still remember it.

    It really depends like the above poster stated on location and what exactly is the diagnosis. Even "benign" tumors can end up killing you in your cranium.

    Also, I'm very sorry for her and her family and friends. Thanks for posting.
     
    Last edited: Sep 12, 2012
  4. genegri

    genegri Active Member

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    How terrible. :( I am so sorry.

    There are many different types of brain cancers and prognosis greatly varies. Were they able to have a full resection, take out all know lesion? Even today the single most effective cure for most cancers is still to find it early before it spreads and physically take it all out. The fact they did 2 surgeries on her was good news because it means at least it was still somehow operable. But it doesn't mean they were able to take out 100% known lesion. To be honest, base of the brain is usually a worse than average location because of that's where the brain stem is and it's more difficult to operate. :(

    Cancer is cruel.
     
  5. harekrishna43

    harekrishna43 Active Member

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    You might want to be in touch with the people at stupidcancer.com (I'm too young for this)

    It's an organization that focuses on young adult cancer patients and the unique issues they face and the founder is a 17 year plus survivor of pediatric brain cancer.

    They are an amazing organization with tremendous first hand knowledge of all forms of cancer and treatment options.
     
  6. Holley Calmes

    Holley Calmes Well-Known Member

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    Thanks everyone! I appreciate your advice and concern. The tumor was a 5cm giant and it was on the lower back of her head. Her vision has been affected very badly. Her eyes won't move and are stationary in the lower left of her eye, and she can barely see at all. They said they got 95% of the tumor out. We don't know yet what type it is-or her parents haven't said.

    My heart is just broken for this precious girl and for her family.
     
  7. Wyliefan

    Wyliefan Well-Known Member

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    Oh, Holley, I'm sorry. I'll pray for Anna.
     
  8. Gypsy

    Gypsy Watching the Leaves Change!

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    This is so heartbreaking.

    My nephews son was 5 when he was diagnosed with a very aggressive cancer. (his tumor was in the ear area) He was only 7 when he lost his battle.

    Cancer is so cruel.

    I will keep Anna, her family and all of those who love her in my thoughts and prayers.
     
  9. Lanie

    Lanie Well-Known Member

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    That is so sad. :( I'll pray for her.

    My English teacher in 11th and 12th grades had a tumor in the same spot but it was benign so they aren't doing anything about it. I don't know anything about it.
     
  10. skatesindreams

    skatesindreams Well-Known Member

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    Holley, I'm so sorry.
    She, and her family and friends will be in my prayers.
     
  11. skatemommy

    skatemommy Well-Known Member

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    Holley, beautiful photo as always by your husband. I pray Anna can return to that form. Hugs.
     
  12. alexikeguchi

    alexikeguchi Active Member

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    I'm so sorry for your student and her family.

    I am an adult medical oncologist with an interest in treating brain tumors, but there is some overlap with pediatric diagnoses. As other posters have mentioned, prognosis will be greatly affected by the tumor type and the extent of residual tumor after resection. If they got 95% of a 5 cm tumor, that should improve the odds, but it sounds like more information is still needed. Medulloblastoma or ependymoma can occur in that location and are still potentially curable though significant disability from treatment can result. On the other hand, some subtypes of brainstem glioma are pretty catastrophic.

    I hope and pray that the next news is as good as it can be at this point.
     
  13. IceAlisa

    IceAlisa Épaulement!!!

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    Thanks for the insight, alexikeguchi. Please keep us posted, Holley. Hoping to hear good news on the pathology report.
     
  14. tarotx

    tarotx Well-Known Member

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    Sending this young girl and her family positive thoughts and prayers. I hope the pathology is as positive as possible. Is there a caringbridge or facebook prayer circle for her?

    Here's the facebook of a little girl who died of Brian cancer 1 year ago yesterday. They have a foundation now and posting there may get you some info and young Anna prayers.
    https://www.facebook.com/getwellgabby

    And here's a facebook of a little boy fighting a brian tumor. The mother often sends out prayer request for other children/young adults who are in need of prayers

    https://www.facebook.com/Pray.for.Grey.The.Journey

    I hate life threatening childhood illnesses. It's so sad that young people have their life dramatically changed at best. September is childhood Cancer month. I hate cancer.
     
    Last edited: Sep 12, 2012
  15. skatesindreams

    skatesindreams Well-Known Member

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    Holley, please let Anna/her family know that many people are sending support and encouragement to her.
     
  16. Bailey_

    Bailey_ Guest

    She will be in my thoughts and prayers. I lost my mom to cancer last year - a terrible disease. However, my cousin had a malignant brain tumor when he was young and he is now a 45 year old father of two beautiful children. There is always hope.
     
  17. LilJen

    LilJen Well-Known Member

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    What a terrible thing to happen. My heart goes out to Anna and her family and friends. Praying all will be well.
     
  18. Holley Calmes

    Holley Calmes Well-Known Member

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    That truly gives me hope, Bailey, and I will pass your story of your cousin on to Anna's mother. Thank you! And thanks to everyone who has responded.
     
  19. victoriajh

    victoriajh Well-Known Member

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    Any updates? A local dad in our community just was diagnosed with brain tumor yesterday. We have no info yet on if it is malignant ..... How long do pathology reports take? This must be an agonizing wait for the family.
     
  20. beepbeep

    beepbeep Taking homeless Fabian home

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    There's a video about a student with the Anaheim Ballet that had a brain tumor and recovered from it.

    Wishing for the best possible outcome for Anna.
     
  21. vesperholly

    vesperholly Well-Known Member

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    My cousin also had a brain tumor when she was in her mid-20s (not sure if it was malignant or not). She had surgery and is fully recovered and has a 12-year-old daughter.
     
  22. Holley Calmes

    Holley Calmes Well-Known Member

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    Anna had a good day! She was transfered out of picu yesterday to her own room. Today she ate a lot!! Which is fabulous, and she sat up for awhile, turned her head on her own, and her eyes are slowing starting to come back to the center. Her vision is still bad, but we are hoping it is just going to take time. This is the first decent news we've had in 3 weeks. Or almost 3. She will start chempo probably in a week.

    I am still trying to find out the name of the tumor. It's very rare and is associated with the pituitary. I'll try to find out what it is!

    One day at a time. Today was a good day. Thank all of you for your love and concern.

    Just sending another photo of Anna. I think it means more when you can actually see the person you are sending wishes to....

    http://www.pbase.com/rcalmes/image/123833253
     
    IceAlisa and (deleted member) like this.
  23. numbers123

    numbers123 Well-Known Member

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    could it be this one: large pituitary tumor (macroadenoma) can put pressure on the pituitary gland and nearby parts of the brain, such as the nerves leading to the eyes (optic nerves)
     
  24. alexikeguchi

    alexikeguchi Active Member

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    Is it some kind of germ cell tumor? Although they typically start in reproductive organs, they can also occur anywhere along the midline of the body, including brain. There are different cell types within that category, but many are highly responsive and curable. Lance Armstrong had brain involvement from his testicular germ cell tumor, and obviously he did really well.

    Glad to hear that Anna is doing so much better and will be strong enough to start additional treatment.
     
  25. Spazactaz

    Spazactaz New Member

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    Sounding quite similar to my situation. I just turned 25... was finally diagnosed at the beginning of this year with adenoid cystic carcinoma. They found a tumor in my sinus cavity... which has spread to my brain/neck. I did radiation treatment and it apparently shrunk it only to half its size... and they say there aren't any other options for me. :(
     
  26. Alex Forrest

    Alex Forrest Banned Member

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    There are always options, but it is good news that you are doing well! Congrats!

    Germ cell tumors, don't those involve teeth and hair? Huh. I guess I need to get out my Neurobiology textbook again. I do know that pituitary tumors are one of the most easily treated, first of all because they manifest very quickly and are caught early and it is not as difficult to get to the pituitary.

    I have faith in medicine. She hopefully will be fine.
     
  27. tarotx

    tarotx Well-Known Member

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    :( Spending you positive thoughts and energy sweetie!
     
  28. Anita18

    Anita18 Well-Known Member

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    I'm so sorry. :( It's so hard, especially when you're young, to hear a diagnosis like that. Did it have anything to do with the terrible nosebleeds you were having earlier this year?

    My coworker was finally diagnosed, after months of debilitating abdominal pain (as well as a round of severe jaundice), with stage 4 pancreatic cancer. The cancer is continuing to spread, even after a month of the hardest chemo regimen they have. There are "too many lesions in the liver to count," and now it's in his spine too. Last we heard, they were gonna continue chemo. Presumably with different drugs. He's 30. I mean, just what else is there to do? :( Our only solace is that he's at home in France with his family, and the painkiller cocktail he's getting is working really well, so he's in minimal pain. He was hospitalized several times when he was still in the States earlier this year and it was terrible to see him suffer so much.

    Since your tumor responded to radiation (one type? Multiple types?), I still say there is hope. Is chemo on the table? Some kind of drug cocktail? Clinical trials? You're young, and in good shape. It's too soon to give up.
     
  29. skatesindreams

    skatesindreams Well-Known Member

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    Joining in; and sending more of the same, Spazactaz!
     
  30. LilJen

    LilJen Well-Known Member

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    ((((((((((Spaz)))))))))) :(