Coming up on my last days of treatments. My story and experiences.

Czab
Czab Member Posts: 6
edited March 2014 in Brain Cancer #1
Well i currently only have 4 more radiation therapy treatments, and then i am finally done with all my treatments and i can go back to my "Normal" life. These past couple months have been pretty tough going from a perfectly healthy athletic 15 year old boy to having discovered i had brain cancer. I would like to share my story with all of you because i see myself as an EXTREMELY lucky person and that i have a guardian angel looking after me. And hope that my story can bring inspiration and hope to other kids fighting cancer.

In July 2009 I was playing a baseball game with my travel team, and i was at 2nd base fielding position. The batter hit a high pop up into the air and i had lost the ball in the sun and the ball hit me full force in my eye. I had a big cut underneath my eye and it was bleeding a good amount, so my mom decided to take me to the ER in case i needed stitches. While in ER the doctor took a look at it and said it looked like it should heal up fine and we will clean up the cut and you will be on your way. So he cleans up the cut and says he will be back with the discharge papers. As soon as he left the room, i started to vomit. And then from my surprise i noticed we were in the same room my Uncle had passed away in from a heart attack a couple months ago. I started to break down crying and got real emotional and the nurses came running in and my mom had to explain that i was upset because of the room and they transferred us to another room. The doctor then comes back in the new room with the discharge papers but my mom told him i just vomitted so i think he may have a concussion. The doctor then says lets do a CT scan. So we go and take the CT scan and the results come back saying i had a broken cheek bone and orbital eye socket bone and to our surprise he also said they had found an "Abnormality" in my brain. We all looked at him like he was crazy and said what is that...He said he could be anything from Blood Vessels to a brain tumor. And when he said brain tumor my parents laughed and said that is impossible. I had zero symptoms of any sort of brain tumor. I was perfectly healthy and it made no sense. The doctor then suggested that we make an appointment with a neurosurgeon and have an MRI. So couple days later we go see a neurosurgeon in our city but to have been denied because he doesn't work with pediatrics. So he suggested us to a Childrens Medical Center about an hour away from my town to have a Pediatric neurosurgeon take a look at the MRI. So we drive up there the next day to meet with the neurosurgeon Dr Johnathon Martin and take a look at the MRI. As we were sitting in the room with his computer and he was pulling up the MRI there was clearly something wrong in the center of my brain. Right smack in the middle was what looked like yellow grapes and there i knew i had a brain tumor. I was in complete shock but not as much as my parents were. I turned to them and i could see the pain and sadness in there eyes. They were both crying there eyes out, yet i couldn't squeeze one out. It was then when i realized that i had to be strong for my parents because i knew that they were going to have a tough time. I never seemed down or depressed and i had a saying that i always used to tell them. "There's no turning back now, what needs to be done, needs to be done." So Dr Martin went over all the possibilities of this tumor but wouldn't get an exact type unless he had a biopsy of it. The region the tumor was in was the Pineal Gland in the third ventricle of the brain. Pretty much smack dead in the middle, and i didn't even know till after surgery that the Pineal region is the hardest region of the brain to do surgery on. So he scheduled a date for my brain surgery to be on July 28th 2009. I had a really good connection with Dr Martin and had 100% trust in my safety of the surgery and was sure he would help me. So i have my surgery that lasted 11 hours and by some kind of miracle he had removed 100% of the tumor. My family and I were so happy to hear that news and i see Dr Martin has my hero. But with with good news comes bad news. The pathology came back as a Mixed Germ Cell tumor. (90% Mature Terratoma and 10% Germinoma) The Germinoma was Cancer. Yet another total shock that a 15 year old has to deal with is that he has cancer now also. So I spent 10 days in the Intensive Care Unit recovering the best i could have. I had a pump placed in my head to allow brain fluid to flow to the spine and had double vision for quite awhile. I could barely turn my body in bed and had to have 2 nurses literally flip me over to one side because i just couldn't do it alone. But as the days went on i got better and better and was soon up and walking with assistants. They were worried that they would have to put a shunt in my head for the brain fluid to flow correctly but as another streak of luck hit me the day before they were going to decide to put the shunt in my head my fluid was flowing normally without the pumps help, so they decided i did not need a shunt. I had the pump removed and was sent home 2 days later to continue my recovery. I had over 60 stitches in my head in the shape of a "C" kinda ironic when i think of it too because my name starts with a C.(Chris) =P So now the doctors had to come up with a plan to treat the cancer. They looked all over the United states, had us visit a doctor in New York and even talked to people in Paris. They then came up with a plan of Chemotherapy and Radiation. I were to have 3 rounds of Chemotherapy with the drugs of Carboplatin and Etoposide(VP-16) and have 3 weeks total of radiation therapy. 2 weeks radiation on the Linear Accelerator machine to all the ventricles in the brain and 1 week of Tomotherapy to the pineal region of the brain. Chemotherapy was a real struggle, i would be in the hospital for about a week and literally go 5 days without eating a bite of food. I had really bad nasuca and stomach pain. But i stuck with it and it was soon over and then i started radiation 2 weeks ago. Radiation pretty much saps all my energy and i usally just sleep all the time.


That pretty much brings everything up to date. I currently only have 4 more radiation treatments and then I'm all done. (Hopefully) The doctors had given me a very good prognosis but there's always chances of reoccurs they say. (Less then 20%) But if that ever happens I'll be ready to fight it with everything i got. I've learned so much these past couple months of battling cancer and seeing the emotional impact that goes on. My heart goes out to all those kids that are far worse off then i was and i say to you to keep your spirits high and never give up. You are just as normal as any other kid out there.

I have many goals i want to achieve and plan on achieving them. I will be back playing the game i love and my passion baseball. I will be playing for my Highschool in the spring and will be practicing every single day with 100% of my effort to be back at the state i once used to be. The road ahead seems to be a bit less rocky now and i can't wait to start persevering.




Thank you for taking the time to read my story and experiences. Sorry if it was a bit long. God bless.

-Chris

Comments

  • beacon
    beacon Member Posts: 77
    what an amazing story,
    what an amazing story, chris,of how a freak accident led to the discovery of the tumor, and its treatment, and how great you got to treat the tumor sooner, rather than later.
    i will be praying for a long and healthful life for you...

    you sound like a wonderful, mature, and inspiring teenager, and wise for your years!
  • sue Siwek
    sue Siwek Member Posts: 279
    have often wonder about you.
    have often wonder about you. so glad to hear things are so hopeful. rest, eat well and soon you will back to normal but with a much different view of the world. you are a strong and amazing young man that c on your head stood for courage too!
  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    sue Siwek said:

    have often wonder about you.
    have often wonder about you. so glad to hear things are so hopeful. rest, eat well and soon you will back to normal but with a much different view of the world. you are a strong and amazing young man that c on your head stood for courage too!

    Hi Chris
    You are an amazing and mature young man, you are far wiser and stronger than your years. Thank God for that baseball injury as it helped you to find your problem before it got worse. Your courage, strength and great attitude reminds me of my kid sister who was just diagnosed with brain cancer this year. She has handled this so much better than the rest of us and she has kept us sane. Keep the positive vibes coming, it makes a big difference for you and all of your loved ones.

    Please stay in touch and we wish you continued success.
  • Czab
    Czab Member Posts: 6

    Hi Chris
    You are an amazing and mature young man, you are far wiser and stronger than your years. Thank God for that baseball injury as it helped you to find your problem before it got worse. Your courage, strength and great attitude reminds me of my kid sister who was just diagnosed with brain cancer this year. She has handled this so much better than the rest of us and she has kept us sane. Keep the positive vibes coming, it makes a big difference for you and all of your loved ones.

    Please stay in touch and we wish you continued success.

    Thank you all.
    Thank you all for your kind words and for reading my story. I really do hope that my story can inspire and give strength to other kids that are battling cancer. Always keep your head held high. :]
  • patriciam
    patriciam Member Posts: 39
    Czab said:

    Thank you all.
    Thank you all for your kind words and for reading my story. I really do hope that my story can inspire and give strength to other kids that are battling cancer. Always keep your head held high. :]

    GREAT Inspirational story
    Chris,
    Thank you for sharing your story. It sounds so much like my daughter's story. She also was diagnosed with a brain tumor, we took her to the ER because she was hit by a softball on her head and we thought she had a concussion because she was throwing up. I read your story to her, she is now 17, was diagnosed last February at 16. Again, thank you for sharing your story, You helped me and her.
    pat
  • arkansasbrains
    arkansasbrains Member Posts: 38
    Czab said:

    Thank you all.
    Thank you all for your kind words and for reading my story. I really do hope that my story can inspire and give strength to other kids that are battling cancer. Always keep your head held high. :]

    hot damn and hell yeah!
    hot damn and hell yeah! (sorry, seemed appropriate! ha!) that was the best thing i have heard in a while. thanks for some high hopes! it does wonders. congratulations to you!
  • lawslegal
    lawslegal Member Posts: 38
    Inspirational
    Hi,

    What a great story. I am glad you shared it as people need inspiration. My son too had a brain tumor and I wrote a book called, "Michael's Journey" to inspire and help other families. You can visit www.michaelsjourney to find out more about his story.

    I wish you all the best and you and your family a Happy Holiday Season!!!

    Laura (Michael's Mom)
  • dalbertson
    dalbertson Member Posts: 1
    thats wondweful God Bless
    thats wondweful God Bless You .
  • cycleman
    cycleman Member Posts: 4
    Pineal Blastoma
    I was fifty years old when I was diagnosed with this cancer.

    I have had 6 weeks of direct radiation, and current going through 4 monthly chemo treatments.

    The main side effect from this treatment is a vert upset stomach, which I take Prilosec , and compazine.

    Chris you will get back, it sounds like you have a good people behind you, like I have Family, friends, and co-workers in my case.
  • Brandibaggett
    Brandibaggett Member Posts: 2
    Chris, I have read your story

    Chris, I have read your story and hope things are great for you these days! Since you are now several years into remission, I would like to ask you a few questions if you do not mind?

    My 10 year old son was diagnosed October 2017 with 2 germinomas...one on the pituitary gland and one on the pineal gland. He has finished chemo and has done very well, but now we start radiation for 4 weeks. My question is......

    1.How did you do with radiation? What side effects did you have?

    2. Do you still have side effects and if so, what are they?

    I am just trying to learn and prepare him and myself for what is to come. 

    Thank you, Brandi