It was a typical Saturday morning in April 2005. My children, Avi and Ellie, ages 2 and 5, were playing downstairs with my husband, Jeff. Avi decided to come upstairs to get me. I heard him coming up the stairs and then I heard a blood-curdling scream. I jumped out of bed and ran to scoop him up off the floor; as I held him and rocked him he told me his leg hurt. It took him a very long time to stop crying, which was not normal. Like any toddler he fell often and usually a quick hug and kiss and he was up and running, not today. We thought he broke his leg.
We went to Suburban Hospital in Bethesda and were quickly transferred from the triage area to pediatrics. After Avi had an x-ray, Jeff and Ellie left because she had a birthday party.
The doctor came in and asked where my husband had gone. She said that perhaps I should wait until he returned to discuss the results. I was nervous but asked her to tell me anyway. She explained that Avi had broken his leg but that there was a mass on his bone that likely weakened the bone and caused the break. She was concerned about the mass and had called the Orthopedic Department at Georgetown Hospital. They suggested we bring Avi in on Monday. The doctor was not satisfied with this response so she called the Pediatric Oncology Department and spoke with Dr. Aziza Shad. Dr. Shad told her we should bring Avi in right away. I asked the ER doctor if she thought Avi had cancer and as I said the words I could not believe they were coming out of my mouth. She said it was possible but not to panic just yet. But, she told me to go straight to the hospital.
Some quick calls to friends and I had a ride for Ellie after the birthday party and a playdate. We went to Georgetown without a change of clothes or a toothbrush and wound up there for 3 nights. There were x-rays, CT scans, a nuclear bone scan, and blood tests. As the doctors poked and prodded Avi, we remembered that he had fallen a few weeks earlier and limped a bit after but other than that his health had been normal.
Jeff went home each night to stay with Ellie and I slept in the hospital with Avi. He didn’t like the hospital bed so slept in his stroller. As I sat in the dark, rocking him, Dr. Shad sat with me. She told me she thought Avi had osteosarcoma, bone cancer, but that this type of cancer was rare in a child so young so they were being extra cautious in making the diagnosis.
The treatment for osteosarcoma involved 6 rounds of chemotherapy (3 different drugs) to shrink the tumor, then surgery to remove the tumor, and then another 12 to 14 rounds of chemo. Because of Avi’s age, and the location of the tumor, Dr. Shad felt it was unlikely they could remove it and save his leg. Although there are limb-sparing procedures available for sarcoma patients, Avi had years and years of growth that needed to happen in his leg and the limb-sparing surgeries don’t accommodate that well. So, we were looking at an amputation.
In the span of days, we went from being the parents of a healthy toddler to facing months of chemo and an amputation. It was devastating. But, I never doubted that Avi would survive. The tumor had not spread and Dr. Shad said given this, and his age, he had a very strong prognosis. She sat with me, as I cried, and told me stories of children she treated. She explained our options, gave me recommendations for surgeons, and connected me with other patients with a similar diagnosis. She arranged for the social workers and the hospital physical therapist to come talk with me. I never could have gotten through Avi’s treatment without Dr. Shad and her team.
Avi started chemo the following week. It was grueling. He suffered all of the expected side effects from chemotherapy and it was heart breaking. All of the treatments were inpatient so we spent 3-4 nights at the hospital each time. I took a leave of absence from work and stayed with Avi for every treatment. After awhile the treatments became routine. We had hospital bags that were never fully unpacked and bin of sanitized toys that we brought back and forth. I made Avi’s room as engaging as possible – we would read, finger paint, use PlayDoh, and he watched a lot of Barney and Elmo. The nurses loved him and visited him all the time and the Child Life Specialists and Art Therapists helped keep him entertained.
Avi’s treatment ended in November 2005, just before Thanksgiving. He was fitted for his first prosthesis – prior to that he used walker to get around. Avi adjusted to his prosthetic leg quickly and has now had 9 different prosthetic legs. With each one he learns new ways to be more mobile and agile. He is now 11 years cancer free!!
Avi’s cancer changed our lives. In addition to years of follow up medical and prosthetic appointments, fears about recurrences, and the mobility challenges of having a prosthetic leg, it changes your outlook. When Avi was in treatment, if he was feeling well and we were all home together, it was a celebration. The everyday annoyances and minutia of life fade away and you just appreciate each other. As Avi moves further and further away from that time, I try to remember and appreciate the simple fact that he is here. Had he not fallen on the stairs that day, we might not have discovered the cancer for months, and it could have spread. Had the ER doctor not been so insistent, we might have waited to check it out. Had we not wound up at Georgetown, we might never have met Dr. Shad.
As soon as we finished treatment, we wanted to give back. We did a toy drive for the hospital and made dinner for patients staying on the pediatric floor. I organized a charity walk for sarcoma research and volunteered for Make-A-Wish. A few years later we found out about Just Tryan It. Avi wanted to participate. The organizers could not have been more accommodating. They said he could walk the run part, skip the bike, I could go into the pool area with him to help him with his leg, Ellie could do a part of it – whatever we wanted! Avi was 8 but, because of his leg, still used a bike with training wheels. Nonetheless, he completed the short course. I helped him in the pool and Ellie helped in bike transition. We did a ton of fundraising. Avi was the top fundraiser that year and won an X-Box. He donated the game to Georgetown and started planning his fundraising for the next year.
For his second tri, Avi was the top fundraiser again! This time he won a bike. That prize he kept and Avi was determined to complete the bike course on the new bike, which did not have training wheels. He worked hard to learn to balance and power the left pedal with his prosthetic leg. He completed his third triathlon the following year on the new bike and was one of the top ten fundraisers. Avi completed two more triathlons with Just Tryan It before deciding to stop racing and become a full-time volunteer. He serves on the Student Advisory Board and volunteers throughout the year. I am very involved with Just Tryan It as well. I volunteer at the race, and this year am on the Race Committee as the Volunteer Coordinator.
Being involved in Just Tryan It is a way for us to pay it forward. I cannot ever repay Dr. Shad and all of the people who helped us get through Avi’s treatment. But the funds raised with Just Tryan It help other families struggling through childhood cancer as we did. This Mother’s Day, I am thankful, as always, to have two healthy children.
Bobbi is this year’s Bethesda race volunteer coordinator