Our Loving 12 yr old son

LuckysMom Member Posts: 4
edited June 2011 in Brain Cancer #1
It breaks my heart to hear so many people going through similar situations with their loved ones as I am going through with my noldest son. My handsome, strong boy has had a brain tumor in the center of his brain since he was 9 yrs old. At that time that they discovered he had it, he just needed a third ventricular shunt placed in his little head because he had alot of fluid build up. We took him back every 3-6 months for follow ups & MRI scans. His tumor was then thought to be non cancerous as it would only grow about 1 mm every 6 or so months. This past late September he started vomiting again and we new it was due to his tumor. Little did we know it had grown a substantial amount. He had an actual shunt placed in his head to help with the extra fluid. His small shunt had been blocked by the growth of the tumor. He had another MRI scheduled for December, and we took him. After the MRI he was to go see his neurologist. He started feeling funny and felt numbness in his head. He had a seizure in the waiting room. It was such a terrifying experience for me and my husband. They rushed him to the ER. Upon looking at his new scan they now said his tumor was a stage 3. We lost it at the hospital, and thought our life was crumbling down. We stood at the hospital with him, hurting for our other 3 beautiful children who had to stay at our families home. Few days later the Oncologist called us in for a private talk with him. He showed us the MRI scan, and showed us how the tumor had spread to the majority of my babies little brain and even down his spine. He told us there wasnt really anything we could do for him. We should just take him home, make him comfortable and let the disease take its course. We both lost it!! I couldnt eat or sleep for several days after that.. We did not agree with the Dr. We chose to fight for our sons life and do all we can to have him with us longer. He underwent 30 sessions of the strongest radiation they can give anyone and has been taking Kepra twice a day, Tarceva every day and Temador once a month for 5 days. Thank God he feels no pain and has no nausea. He is doing pretty good considering how advance and severe his cancer is. We pray every day and thank God for every day we have him with us. We have another MRI scheduled for this Thursday 6/16/11. And I pray theres only good news!!!! He has a few problems here and there and we really have to watch him as if he was a very small child. But its worth having him with us. I have been so scared to read stories online about similar stories, but i have found some that have given me more hope. It hurts so bad because my son has an adult cancer, there are only about 6% children who get this type of cancer.. Any wonderful news would be great.


  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    We are all on the same road
    We are all on the same road here. Praying for a miracle for your son...
  • LuckysMom
    LuckysMom Member Posts: 4

    We are all on the same road
    We are all on the same road here. Praying for a miracle for your son...

    Thank you so very much. I
    Thank you so very much. I have faith that God will hear all our prayers. God bless you and your family
  • palmyrafan
    palmyrafan Member Posts: 396
    Your Son
    I am so very sorry to hear about your beloved son.

    You have probably already done this, but if not, please seek a 2nd, 3rd or even 4th opinion. Try making one of those opinions at St. Jude Hospital (Danny Thomas) to see if they can help.

    Sometimes limiting ourselves to one 1 doctor or just a couple in our immediate area, limits the treatment and knowledge to only what those doctors know. Sometimes getting another opinion in another city gives you options and knowledge that your doctors don't have.

    I have multiple meningiomas. Not bad right? Wrong. Every meningioma patient will tell you that the worst thing we hate to hear is: well, if you have to have a tumor, it least it is a meningioma. I know patients who are looking at 18 surgeries, repeat radiation, physical therapy, rehabilitative therapy, years on medication, etc. I was only given a 20% chance of surviving surgery at the age of 32 in 1994, that's how massive and widespread my tumors were. My neurosurgeon (who pioneered skull base surgery) said the MRI and CT Scan didn't show 1/2 of what was really going on in my skull. He later told my husband that he thought my surgery would take 8 hours. Instead, it took 18 hours.

    My point is this. Please don't listen to the doctors who try to give your son "time limits". Time limits ought to be banned. They become self-fulfilling prophecies, sometimes, leaving patients feeling like they shouldn't even bother trying to fight. And that is wrong.

    Please keep fighting. For your son, for you and for countless others who have lost the battle. But please also keep the Faith, the Hope, the Peace. For in the end, cancer doesn't truly win. It can't follow us to Heaven.

    Keeping you and your son in my prayers and praying for his healing.

    God's Blessings,
  • tntg
    tntg Member Posts: 5
    your son
    Your sweet boy is a hero, thank you for letting us know that us parents aren't alone.god bless
  • alutiiqmom
    alutiiqmom Member Posts: 256
    praying for you

    My beautiful 17 year old was diagnosed with Anaplastic Astrocytoma 3. She had surgery, radiation and is now on chemo for a full year. She gets so sick from the chemo she doesn't do anything. She is our oldest daughter, we were preparing her for college. Many of her friends are leaving for college. Now she cries because her friends are going on and she can hardly function. She was an honor student and now she struggles to write her name. These brain tumors are dreadful.

    There have been many blessings on our journey. Sitting by a pastor on a plane, an accidental meeting of another young woman who survived a brain tumor when she was three years old and all of the prayers. Try and find good in every day.

    I wish you God's presence in your struggle and the love that all mother's know when they are with their children. Enjoy every day and every minute. God Bless you and your family.