The Sky Is the Limit

The Sky Is the Limit

Name: Kyle F.
Type of Cancer: Ependymoma
Diagnosed: 2021
By: Kyle F.
— Categories: Adult   Pediatric  

Strange Sensations Caused Concern

Starting in the summer of 2020, right around when I graduated dental school and moved to Arizona, I started having some pain in my upper back. No matter what I did I could not seem to make it go away. A few months later I noticed my left pinky and ring finger felt numb. This numbness progressed to my right hand and eventually my legs and feet and even my throat. During this time I bounced around to multiple doctors trying to find answers. September 3rd, 2021, over a year since my symptoms first began, I received my answer and found out I had a tumor growing in my spinal cord that resembled an ependymoma and it did not look good. From that moment on, it all felt like an out of body experience. Like I’m just a spectator in my own life. I guess I was just in so much shock that none of it felt real.

Shocking Diagnosis 

The tumor was so big (it took up 80% of my spinal cord in its largest section) that my doctors estimated it had been growing for 3-5 years and possibly even longer. It also had 2 large cysts projecting from the top and bottom. It was impossible to say for certain what type of tumor I had without a biopsy although we were fairly certain it was an ependymoma. Since the spinal cord is so invasive to get to, if you go in for a biopsy you might as well try and get the whole thing out while you’re in there. Surgery was really the only option with radiation to follow, and before I knew it I was scheduled for surgery September 21st.

My surgeons were not confident they’d be able to remove all of the tumor and some degree of paralysis was a very real possibility. Around this time while I was trying to process all of this and prepare for surgery is when I discovered the CERN foundation. I found that they by far had the most up to date information on ependymoma and are currently conducting research to better understand it. Research that I’m now actually a participant in. I’ll be honest, it helped reading everyone’s stories and experiences and made me feel less alone, but it wasn’t exactly comforting. It seemed there was one thing that was universally true, everyone’s life was altered significantly.

A Hard Recovery That is Still Ongoing

I can’t tell this story without mentioning how fortunate we were to be in Arizona. Nothing in particular brought us out there other than my wife’s company having an office there and us wanting a new adventure. Little did we know that a year later we’d become regulars at the Barrow Neurological institute in Phoenix, which is one of the top neurosurgery clinics in the nation. In hindsight, it’s so easy to see the Lord’s hand guiding us there so I could receive the best care possible. 

So the surgery happened, and took 8 hours. I want to share a cool thing that happened while I was waking up from the surgery. I have no recollection of this, but apparently the first thing I did was wiggle my fingers and toes and say “the power of prayer. God is good.” I think nothing short of a miracle occurred in that operating room. The post op mri showed a gross total resection which means they were able to remove all of the tumor. Although I now felt completely numb from the chest down and was experiencing crazy new sensations, I still had most of my motor function and was up taking short walks within 2 days after my surgery.

I’m not going to lie, as great as I just made it sound, and as normal as I may appear today, the recovery was still rough and is still ongoing. I lost a lot of strength and dexterity in my hands that seems to slowly be coming back, but my left hand is still pretty useless. I’ve lost a lot of my balance and coordination due to my entire body feeling numb. I still feel sensations I can only describe as shockwaves or a short circuit traveling throughout my body. I’ve undergone countless physical therapy sessions, occupational therapy sessions, and underwent 25 days of radiation therapy in February of 2022. I’m no longer able to practice dentistry, and not confident I’ll ever be able to go back to it, although I do have some alternative career options in the works.

A Different Outlook on Life

I say all this to show, it has certainly been a rocky road with many highs and lows. It’s a blessing yet so frustrating to appear so normal now when I still feel so far from it. The truth is, like everyone else that has shared their ependymoma story, my life has been altered significantly. I've changed physically, mentally, emotionally, spiritually and socially. However, instead of focusing on my limitations, I choose to see how much I’ve grown as a person throughout this journey. To anyone going through something like this, I pray that you can stay positive and find a way to keep pressing forward with an attitude of gratitude. This mentality has allowed me to achieve things in just one year of recovery that shouldn’t be possible. I’m already competing in crossfit again and am back out on the golf course! I love the way Pierre said it while sharing his story, “the future is as bright as you’ll dare to see it!” The way I see it, the sky is the limit!

Taking Action 

Update: Kyle and his network of family and friends took action by hosting a golf outing to raise support for the ependymoma fund. Learn more about creating community events!

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