My Story

The Chemotherapy:

In preparation for treatment, a Central Venous Internal Line (also called a “Port”) was inserted into my chest, which allowed the doctors to draw blood, administer chemotherapy, and inject other medications without having to locate veins in my arms.

On July 8th, 2011, I had my first round of chemotherapy. Sessions were generally 3-5 days and consisted of both inpatient and outpatient clinic visits. While initially there were only supposed to be 2-week gaps between rounds, it was not always possible to maintain that schedule due to the ways chemotherapy weakens the body. Blood cell counts had to be closely monitored during chemotherapy treatments, because, in addition to destroying cancer cells, the chemotherapy also attacked any healthy cells that tended to divide quickly. This included blood cells.

Because of this, there were often delays between rounds of chemotherapy to allow my body to recover. Between rounds, I had to be injected with a white blood cell booster medication every day to keep my white blood cell counts healthy. I also had to get blood drawn about twice per week after each round of chemo to check my blood counts. As a toddler, I hated getting poked, and I cried and squirmed a lot. There were a few times I had to go to the local ER to get blood transfusions when my blood counts got too low. Thankfully, the treatment was working, and I was able to get through all six rounds of chemotherapy and prepare for my impending amputation.

The Amputation:

Because I was so young at the time, my growing body presented some limitations in treatment. Because of this, the surgeon recommended that my parents choose a rotationplasty amputation, which involved carefully removing the tumor-infected bone with some margin while keeping the blood vessels and nerves intact, saving the lower leg and foot, rotating them 180 degrees, and reattaching them to what remained of the femur. The now backward foot functions as a knee joint. Admittedly, the result can look quite strange, which is one of the reasons the procedure is so rare. Thankfully, there were surgeons who were familiar with the procedure at Stanford, and my parents decided rotationplasty would be the best option for me. It gave me the best chance to be physically active after treatment. On October 10, 2011, after a 10-hour operation, the surgery was concluded, and the doctors informed my parents that everything had gone well and as expected.

After Surgery and Treatment:

After a long delay—almost six weeks instead of the expected two—due to slow healing and a follow-up surgery to fix it, I was finally able to resume my rounds of chemotherapy. These treatments were necessary to eliminate any remaining cancer cells in my body. According to a pathology report after the initial 6 rounds, chemotherapy had successfully destroyed 99% of the cancerous cells in my femur.

In May 2012, I completed all 17 rounds of chemotherapy, and my cancer was officially declared in remission. I began to recover from the chemotherapy and surgery, albeit with one setback. It turned out that the area where the surgeons had reattached my bones during surgery was not fusing together properly. They suspected this was because of the intensive chemotherapy I went through. To fix the issue, I had to have a bone revision surgery. It was successful, and by the end of that year I had fully recovered from that incident and the chemotherapy side effects,

I started Pre-K in September 2013, and life settled into a new normal. I was almost a regular kid again—just one with appointments with his oncologist, prosthetist, and physical therapist. The regular scans that I had to get to make sure I was still cancer free never yielded anything concerning, although the lead up to them was still stressful for my parents.

In 2014, my family moved to Washington State, and I was able to go to Shriners Hospital in Spokane to be fitted for prosthetics. At first, it was difficult to explain to the prosthetist and other healthcare providers how a rotationplasty prosthetic should work. But luckily, Shriners soon hired a new prosthetist with experience in rotationplasty, and he was able to create much better prosthetics for me. Thanks to that, I’ve been able to participate in a wide range of physical activities, including Taekwondo, Kendo, Track, Swimming, Rock Climbing, Tennis, Table Tennis, and more.

In 2022, I passed the 10-year mark—cancer free. Now, I’m a high school student and continuing to live a full, active life. Shriners has continued to support me with prosthetics and physical therapy at no additional cost beyond what insurance covers. I can remain a patient at Shriners until I turn 21. After that, I’ll need to find a new prosthetist to work with as I move into adulthood.

Reflection:

As I revisit what happened during my diagnosis and treatment and learn more of the details that I was too young to understand or remember, I realize just how lucky I was for my treatment to go as well as it did, considering how rare Ewing Sarcoma and the rotationplasty amputation are.

My family happened to live close enough to Stanford to receive world class care without having to travel a very large distance. (There are services, such a the Ronald McDonald House that assist with housing parents of kids in the hospital.) We also had good health insurance, meaning that the cost of treatment did not affect us too much. We also had an great support network of friends and family to help us through the process. If they had not been there, there would have been a lot more strain put on my family during and after the treatment. Later, we were also lucky in discovering Shriners Children’s Hospital, which has allowed me to have free and well constructed prosthetics throughout my childhood and teenage years. Overall, my family was extremely fortunate. However, not every family has access to the same resources.

Now that I am more removed from the stresses of cancer diagnose and obtaining prosthetics, I would like to in some way assist those who may be going through a similar process.

I believe more support is needed for families navigating serious illnesses, including increased funding for research aimed at finding a cure. There are many dedicated organizations pursuing this goal, and they need to be supported. Even small contributions are vital, and worth doing. In addition to providing more information on the treatment process, I also hope that this website will direct people towards volunteer opportunities to provide more support to families who are dealing with serious illnesses.

The Diagnosis:

When I was two years old, my parents received a call from my daycare notifying them that I had begun limping and needed to be picked up early. My parents then called my pediatrician’s office, and they attributed it to growing pains since I was not exhibiting any other symptoms. The limp had ceased the next day, so my parents did not think much of it. A couple months later they got a similar call, except this time I had a fever along with the limp. The pediatrician we visited ordered some X-rays, and after looking at the results, he suspected I had a malignant tumor. He told us to go immediately to Stanford Children’s Hospital for further testing.

To get to a more specific diagnosis, doctors had to perform many scans and tests. Some tests required getting blood drawn or fasting prior, both of which were very difficult for a toddler like I was at the time. Finally, the doctors determined that I had Ewing Sarcoma, a rare and aggressive type of bone cancer, and I would need to receive chemotherapy and an amputation to fully treat it. Thankfully, the cancer had not spread, and my chances of survival were greatly increased. About a week after arriving at the Stanford Children’s Hospital, we were discharged with a treatment plan. I would get 6 rounds of chemotherapy, then receive a rotationplasty amputation, then more chemotherapy.

Throughout this process, family and friends offered their support to us. My parents (specifically my mom) needed to continue working during my treatment since I was on her employer-provided insurance. Having that additional support from family and friends helped a lot going into the treatment phase and dealing with all the disruptions it caused.