Ebbin's Journey Home

This update was given to me a few weeks before his passing. Even during his last few weeks, Ebbin never let his disease dictate his life. He will be missed by so many:

"Since getting released from the hospital I have been living my best life day by day with family and friends. I have a great new nurse that fits right into the family that brings me 2 of my favorite meals each week and comes and checks on me and make sure that I have everything I need. Had a lot of great events and trips coming up in the next couple of months. Just shot my first elk with my grandpa and we got to bring it home and my grandpa made the best elk heart and elk burgers out at our lake. Our weekend getaways are usually with family and friends at the lake jet sking, fishing and drving around in the golf cart or in grandpa new ranger. Super excited to go to my friend Vince's house to go hang out the pool and enjoy the sunshine kids event. Then my mom got some exciting news that her bosses bought me and my mom a trip to Disneyland to go spend some one on one time together. Can't wait for all the fun events to come."

"Hi! I’m Ebbin Gehrke! I’m 16 and as far back as I can remember, I wanted to play football for USC. I love pretty much all sports, video games, fishing and cracking jokes with friends and family.

In February 2018, when I was 11, my right knee began to hurt. My doctor said it was “growing pains” and told us to buy a strap brace for it, but it got so bad that I couldn’t put weight on it and I asked to sit out at my basketball game. My family knew the pain was bad when I didn’t want to be on the court! The doctor then ordered physical therapy, but the physical therapist looked at the lumps below my knee and said “that’s not normal” and told me to see an orthopedic Dr before he would work with me. We were not expecting the bone cancer diagnosis that came next. First thought to be osteosarcoma, cultures from the biopsy showed it was Ewings sarcoma.

We went to UNMC for treatment with our amazing oncologist Dr. Coulter and Child Life Specialist Debbie. They told me about the chemo and surgeries that I would need to get this cancer out of my body. I told the Dr I was ready to take the cancer out NOW! But he told me I needed to get chemo to kill it before they could remove it. This is a lot to deal with at any age. We adopted the motto “step by step, day by day.” I did half the IV chemo, then the surgery, followed by the second half of the IV chemo. I lost all my hair (my baseball teammates videoed their head shaving party to show their support for me!) and my face swelled from the medications. We chose rotationplasty, a surgery that removes the bone affected by the cancer and puts your foot on backwards so your ankle now becomes your knee (we called it my “Knankle.”) This surgery eliminates phantom pain and would give me the chance to play sports again! My family worried that I would be shy about people’s reaction to my leg, but I was excited about it and told them “everyone’s gonna want one!”  

I finished my chemo on December 30, 2018 and started 2019 NED (No evidence of disease.) Unfortunately, NED was short-lived and mets were found in my lungs at the first 3 months scan. This started my new battle against Ewings. The mets were treated with radiation to shrink them followed by surgery to remove them, and a new IV chemo plan. Early in 2020, my surgeon noticed a lump in the soft tissue of my leg near the rotationplasty. A biopsy showed it was recurrence of Ewings and a full leg amputation was required. Because of Covid, I wasn’t allowed visitors at the hospital like I had been before, (and my Make-a-Wish trip was cancelled.) When I got home from the hospital, people from all over town formed a parade of cars that drove by my house to cheer me on! I was given oral chemo pills to take every day and that worked for a while. Each time mets returned, I was given a new chemo and surgery to remove the mets. I started IV chemo again last fall and this time Ewings was also found in a lump that started growing at the base of the left side of my head. This chemo did not stop the growth and was the last chemo available for me to try. I will be having surgery again to remove the mets in my lungs as well as radiation now on my spine. This last hospital stay is where I found out that hospice will be coming home with me."

As his mother, there are still things I would like Ebbin to enjoy, but medical expenses have become pricey as insurance doesn't always cover everything. We are trying to raise funds to cover these remaining expenses.