On June 12, our world was rocked when we learned it was a chordoma, then in the following weeks we learned there was still tremendous tumor left. We followed up with MD Anderson where he had a second surgery. Raza got all of it out, but it had spread into the cavernous sinus and the first layer of dura. There were no symptoms and our surgeon said we were lucky to have caught it.
He did end up with meningitis from this surgery due to a spinal fluid leak, but it was easily resolved with 5 more days in the hospital and 10 days of home antibiotics.
The Ben and Catherine Ivy Foundation
He ended the year with 35 rounds of proton beam radiation with very little side effects. My biggest piece of advice would be to listen to the people at the Chordoma Foundation they originally said I should wait to see another doctor before the first surgery if there was a single bit of suspicion that it may be a chordoma.
Ryan is now a stay at home dad and travels to Houston every three months for the next three years. We have all slowed down and enjoy the moments more. We just make the most out of each day and try to make memories to last a lifetime, no matter how long that may be. I was 15 when I was diagnosed with a Clival Chordoma and my only symptom… I snored. I then proceeded to get 2 major surgeries within a week of each other and get radiation treatment in a different country.
I got through it seeing the world a little darker and a little brighter. Enjoy the little things because the darkness in the world can be very dark. I smile a little bigger now to spread the good in the world because you never know who needs it. My dark days however are also a little darker because of it.
Two years later it came back in a lymph node in my shoulder. I then got another surgery to remove it. Four years later its back again. We found out it was growing again because the radiation from the first round had deteriorated my spine so much it broke.
I then met my surgeons on a Wednesday and was in for surgery on the Friday where they fused my C4 to my skull and took a piece of hip to do it.
I sent it away for testing to see if there were any other options for me. I now have a few options. However, while I was waiting for the results I pursued other non-traditional medical treatments. My 2 month follow up CT showed no growth since starting these non-traditional treatments. I do my best to hold onto the good moments and live my life to the fullest. When I first started this journey, I thought I could do the surgery and radiation and be done. I realized when it came back the first time that it would be a lifetime of monitoring and got very depressed for a long time.
I still struggle with it. This is a lifetime diagnosis for me. I am still working on living with it and hoping to help some people along the way. My family is great and always there when I need them, however, it would have been nice to know someone was going through something similar. So, for anyone reading this. You are not alone. I was diagnosed with cervical spine cancer at the age of seventeen. It changed my world forever. I discovered that I now will always be a warrior, not a worrier.
I learned to love my self, have courage in myself, and for sure know that I was stronger than I thought. Having my mom, dad, brother, sister, so many other family members and even strangers by my side during this entire journey. I underwent two major surgeries over the course of a month in August.
Having PT, OT, and so much more just to regain my strength back. I even had to learn how to walk again. I wore a neck brace for five and a half months. I went through forty-four doses of high radiation and even though it was one of the worst things to go through, I definitely came out a stronger person and was praying that this crazy machine would kill this awful cancer. I was no longer the normal girl in school, I was now known as the girl with cancer.
I get asked questions every single day. I felt and knew I was the outcast. Going through this makes you a stronger person for sure. You learn not to take things for granted. Children, adults, and even elderly people are never alone no matter what. I learned that cancer is a serious situation and they need to find a cure. Even though this took over my life and I wish I was never given it, I know there is a reason for everything.
Everything happens for a reason. Cancer will only be a chapter of my life, not the whole story. Love yourself and stay strong. You are loved. My story with a clival chordoma skull based tumor started 13 years ago. I asked for a brain scan, and he told me it was a waste of time. I was in a panic, but had to be strong for them and keep my full-time job.
I did a lot of praying and crying. I was told to schedule an appointment with a neurosurgeon.
I chose Dr. He wanted to know how it was found because he had never seen one so small. He explained to me that usually they are found when they are baseball sized, and interfere with vision and hearing. I said I insisted on having tests done. He said it was a good thing. I had a transphenoidal resection which basically means the tumor was small enough that they removed it through the sinus cavity , no head shaving or anything. I had Gamma Knife radiation in case any cells were left. It was a difficult and painful time for me and my children. I had wonderful support from my family and friends.
She picked her up, and dropped her home to keep her busy, and even donated gymnastics lessons for her.watch
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I was truly blessed. I just saw my daughter get married, and my son grow into a fine young man. I married a man five years ago who is my best friend. Life is good. Always listen to your inner self. Take care of yourself, and be your own advocate. Your life and your family depend on it. I thought it was the end, but it was only the beginning. Never give up hope, or faith. God works miracles. God bless you.
I had no symptoms, but I had stomach surgery on August 2, My chordoma is still completely contained inside the clivus at this point, but the radiologist said that the edge was eroded. So, after lots of research, YouTube videos, testimonials, a second opinion from OHSU in Portland, and looking into proton therapy…my wife and I decided that we would wait three months and have a set of follow-up MRIs, in the hope that the current state may have been this way for 20 years or more!
If things turn out differently, we may need the surgery not a fan.
ABOUT CATHERINE IVY
My lovely wife needs me around so we can work together for the Lord in our retirement. We hope to go on many mission trips helping people. So, I do want to do the best thing for us. Thank you to those who share your stories. This is not where I want to be, but I think God wants to give me a good challenge! I hope I can make good of it!
I was diagnosed with chordoma of the clivus in December I had the tumor for at least nine years and never had any symptoms. I started getting a weird headache and finally had a CAT scan done where the radiologist thought it was a cyst. They recommended me to see a neurosurgeon.
Dedicated to finding a cure for brain cancer
The neurosurgeon sent me for an MRI and it revealed the tumor. While trying to absorb the bad news, my wife and I were on a mission to find the right team to deal with this. We ended up finding the Chordoma Foundation and were very excited to find we were not alone. The team of doctors had a lot of experience with chordomas.
Had the surgery on April 12, They were all great.