“Jacob’s Journey” — Roger Conde
I ride for my son Jacob who was 9 years old when his life changed on April 2, 2015.
Jacob is a fun loving, outgoing, unstoppable kid with tons of energy. He takes a licking and keeps on ticking. The first day that Jacob mentioned that his left thigh was hurting was on New Year’s Eve 2014 as he was playing with his brother and two friends. His complaint was not a surprise in the beginning, since he has always had an occasional spat with growing pains, as do most kids this age, especially when a minute later he is off running and jumping around again. About three weeks later he again complained about his left thigh but said it wasn’t horrible and ran off down our street playing with the neighborhood kids. In our minds, he had just finished football and started playing basketball right away and maybe pulled or strained his thigh muscle. We kept a close eye on him and his leg. We’d ask him occasionally how his leg was, and he would say it was fine and only hurt a little bit. No pain, no gain for this kid (or most nine year olds)!
Our concerns increased substantially after the first week of March. Jacob had always been a great sleeper. When he had growing pains, we would give him children’s Tylenol and he would be fine shortly after. Not this time. He had taken Tylenol earlier in the night and around 3am he woke up crying and in pain. We stayed up with him for a few hours and then he finally fell asleep. He woke up in pain a few more nights and medicine showed no signs of relief. At the same time, we also noticed a decrease in his appetite. He was eating near to nothing at meals.
We called his pediatrician to set up an appointment to determine what was going on. After going through our family history and the normal run through of information, she recommended blood work to rule out any genetic concerns. A blood work appointment was scheduled for mid-March. No one looks forward to the miserable process of drawing blood from a scared and screaming 9 year old, but proved to be crucial.
Several days later the pediatrician called with the test results. Genetic concerns were ruled out but there were some irregular numbers in his blood report. She wasn’t sure of the cause but suggested we see an orthopedic doctor for x-rays and additional tests. There wasn’t much evidence to go on but these additional steps she took would prove critical. The blood work and second opinion made for the best possible outcome. Most doctors would not consider these steps necessary until it was too late. We called the orthopedic doctor for an appointment and the first available was a week later on April 2, 2015.
My wife, Jacob and I arrived at the orthopedics office and after friendly introductions, took Jacob for x-rays. In the exam room, the doctor turned to his x-ray screen then quickly back to us with concern in his eyes. The x-ray showed a blurred contour along the lines of Jacob’s left femur bone. He told us to immediately go see his partner at the Children’s Hospital for more tests in the Orthopedic Oncology Department. Something was wrong with our son.
At Children’s Hospital he went through a series of tests: MRI, CAT scan, body scan, chest X-rays, needles, more blood work. We were there all day and into the evening. We could only wonder as to what would happen and hope for the best.
On Friday, April 3, 2015 we got a call late in the morning to inform us that Jacob had some form of bone and/or tissue cancer. My wife and I will never forget that moment. Paralyzed in disbelief, overwhelmed with the deepest sadness, our hearts ripped from our chests – all within seconds of hearing the news that doctors dread telling a parent.
All I remember from that Easter weekend is that I could not function. I had to try not to let him know that something was seriously wrong and I was worried sick and scared to death. My wife, feeling the same, began a desperate mission to find answers. She was trying to understand how and why this could happen, what to do and where we could go to stop it. She researched related cancer types, the best hospitals and accredited facilities to treat rare pediatric sarcomas.
Come Monday, when the truth had set in, I went to my office, closed the door and spent all day researching just as my wife had. There were two things I read repeatedly:
1) Make sure you find a great team, meaning a surgeon and an oncologist.
2) Make sure your doctors are part of a “high frequency” hospital, meaning they have extensive (15-20 cases) experience with your type of cancer and have a strong history of treating it.
These would be key to giving Jacob the best possible chance of saving his leg, and more importantly, his life. By the afternoon I knew we should have a back up plan even though our appointment at Children’s Hospital was the next day. I reached out to an oncologist at UCLA Santa Monica. He introduced me to his team and an orthopedic surgeon and we set a consultation appointment for Wednesday. For Jacob’s type of sarcoma, UCLA is ranked #3 in the country. M.D. Anderson in Houston, Texas is ranked #1 and Philadelphia’s Children’s Hospital was #2, but UCLA didn’t require a plane flight.
As we were headed to Children’s Hospital LA for our meeting with the orthopedic/oncology team, we heard rumors that their orthopedic surgeon was moving – to take a position at the Philadelphia Children’s Hospital. Knowing the team at Children’s Hospital was going through a change left us concerned and grateful that we had formed a back-up plan.
Our Wednesday meeting at UCLA went well and we felt very comfortable with both the oncologist and surgeon. We ultimately decided to have Jacob treated at UCLA in Santa Monica. We set a biopsy for that Friday to determine exactly what type of sarcoma he had.
The following week, in the hospital after more tests, scans and biopsies they confirmed that Jacob had Ewing’s sarcoma. Ewing’s sarcoma is a tumor that grows in bones or the soft tissue around them that affects mainly children and adolescents. It is considered rare as it accounts for only 1% of all childhood cancers. If found early and before it has spread, Ewing’s sarcoma can be treated successfully in 50% to 75% of cases.
Since April 14, 2015 when Jacob was first admitted, he’s had 26 chemo cycles, five different chemo drugs and too many tests and procedures to count. There have been endless needle pokes and accessing the port in his chest (two to three times each week) for blood draws, transfusions, and medicines. On July 20, 2015, Jacob had surgery to remove the cancerous part of his left femur bone. He now has a cadaver bone and lots of hardware and luckily, the doctor was able to preserve his growth plates. In total, Jacob has spent six months in a wheel chair or with a walker. As if that’s not enough, he’s spent over a hundred days in the hospital. Going forward, he faces three more months of wearing a full leg and hip brace.
Now, in January of 2016, Christmas and the New Year couldn’t have come fast enough. For our family, it’s the beginning to an end. We look forward to 2016 as a “New Year” and “Another Year” for us to be together! Cheers to you all, and cheers for many more years of life – for Jacob and all those facing cancer!
Roger J. Conde, loving father dedicated to my son and a cure