I'm just a Mom

teamtrooper
teamtrooper Member Posts: 1
edited March 2014 in Childhood Cancers #1
Good Afternoon All,
I'm just a Mom named Joey, I have 4 Children. My oldest son is almost 11, I have an angel that passed at birth, he would have been 9 in November, I have a Daughter that is 7, and a son who is 2. My 2 year old has Neuroblastoma. He was diagnosed in December at 15.5 months old. He completed 5 rounds of Chemo, resection surgery of the tumor in his abdomen, Tandem Stem Cell Transplants, 3 days (2x daily) Total Body Iradiation, and 6 days of tumor bed radiation. He did all of this without the slightest complaint, and sailed through treatment. Just 2 weeks ago, we found out that he relapsed only +90 days from transplant. He has new growth behind his left eye and in his leg, there is no evidence that it's in his bone marrow.

Since we are on Carepages, and we've been in the hospital for so many months, we are very close to other kids that have NB. We are seeing a RIDICULOUS amounts of relapse with NB. I have never been so scared. He endured 6 more days of radiation to the new tumor site in his head, he has responded well to it. He still looks as though he got beat up by a gorilla, but he is feeling better. My problem is that he did well with treatment the first time around, he's doing well this time around, but he still relapsed.

I guess what I'm looking for is some renewed faith that my son will beat this. There aren't many survivors that I have met. Especially ones that beat it twice. I just need some uplifting survivor stories. Could someone help a scared Momma? Thanks so much for reading.

Hugs and Love,
Joey

Mom to Trooper Dante
Carepages: trooperdante

Comments

  • srisko
    srisko Member Posts: 33
    #2
    Hi Joey
    Dear Joey,
    first let me how sorry I am about your son. I can't imagine how frightened you must be. I had leukemia when I was five and 24 now but I have a friend who had neuroblastoma also. I met at The Hole In The Wall Gang Camp which is a camp for children who currently have cancer or had cancer. My friend Emily is one of the smartest people I know. She's at Harvard and she wants to go into politics. Don't give up hope, your son can beat this and I'm sure he grow up to be a very sucessful young man. Sending you and your family positive vibes,
    Sarah
  • maryruth1035
    maryruth1035 Member Posts: 16
    #3
    Survivor of neuroblastoma from 1958
    Hi Joey. I'm so sorry and can't imagine what you are going thru. But I thought I might tell you about my own experiences as an infant with neuroblastoma (those that I can still recall after 50+ years.) Back then they didn't have any of the diagnostic tools they have now--so we have no idea how far advance my tumor was, except that it had already started attaching itself to my spinal chord by the time they removed it when I was 8 weeks old.

    I do not know whether or not you consider yourself to be a spiritual person, but what I can tell you is that my mom tells me that I NEVER cried as a baby. Not even when I underwent a series of radiation treatments and my mom tells me I was red and burned and she'd rub A & D ointment all over my tummy and legs--I was ALWAYS happy! I know that this doesn't make much sense from an outside perspective--I must have experienced enormous pain, you would think, and yet, I know my mom is not lying--I was a happy, pre- & post-surgical & during radiation treatments- baby. The only way I can make sense out of this is thru my earliest memories. I remember that I WAS NOT ALONE. There was a Presence that surrounded and 'held' me--and in that Presence, there was no pain--only life. I honestly believe that the God of the universe came down to earth and 'held' me in my darkest moments--and that I was happy in that presence, even in the midst of what must have been pain. I cannot explain it, but I still know the Presence today. He is ever with me, calling me forward into life.

    Obviously I can't know that your son will survive. I will pray that he does. And I will also pray that the God of all creation and all comfort will encircle you with His loving arms and comfort you during these long days ahead. And I also know that HE cares about your son, even more than you could, and that He cares for you also, and that He is good. Because I am no one special that he should have cared as much as to be with me as I was in pain--that He will not also be that Presence, in which there is only life, with and surrounding your son.

    In His Service, Maryruth
  • maryruth1035
    maryruth1035 Member Posts: 16
    #4
    just noticed--
    I just noticed the date of your last posting. Has your son survived, or has he gone home? I would just like to know if you get this. --Maryruth
  • avereecken
    avereecken Member Posts: 1
    #5
    your story
    Dear Joey,
    Your story touches my heart. My son was diagnosed with a polycitic astrotoma last year when he was five months old. Reading all of the stories of these survivors gives me hope that he will make it through this. And by the grace of God, I hope he never remembers a minute of these days.
  • careydavison
    careydavison Member Posts: 1
    #6
    Great things are being
    Great things are being accomplished with the treatment of this monster, Neuroblastoma. My daughter, Brooklyn, also faces the daily challenges of keeping this disease at bay. We are currently receiving 3f8 treatments at Memorial Sloan-Kettering cancer center in New York City. Have you researched MSK's antibody treatments that include 8h9. 8h9 is producing promising results in children with relapse in the brain and skull. MSK is currently in the process of clearing a vaccine for patients with relapse that is showing MUCH promise. Contact me if you have questions or reach me ( Carey, Brooklyn's daddy ) through her caringbridge site at www.caringbridge.org/visit/brooklyndavison. Neuroblastoma is a very unfortunate challenge, but now is a very exciting time to treat it. Carey Davison

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