Sebastian Nicolas Ortiz, the second of our three boys, was born on May 10, 2000. He unwittingly stole the spotlight from his mom Rose’s 29th birthday. Needless to say, she never received a better birthday gift before or since that day.
Our world changed drastically and rapidly after a pediatrician visit in October of 2015. Sebastian felt an irregular mass, which concerned his pediatrician enough to suggest we immediately see a specialist at Nicklaus Children’s Hospital the next day. He ended up undergoing surgery that very afternoon to remove and biopsy the mass, and we were given a diagnosis of rhabdomyosarcoma before the week was out. We were in utter disbelief.
After a few more medical opinions with local pediatric oncology groups, we then learned what was ahead of us and the difficulties of battling a childhood cancer diagnosis.
We continued to inquire about other treatment options for Sebastian’s diagnosis. Unfortunately, our many discussions with reputable medical organizations and with a parent whose child had a similar diagnosis taught us our first difficult lesson in dealing with childhood cancer …options are limited.
HIS PERSONAL FIGHT
The Children’s Oncology Group (COG), which partners with research scientists globally to understand the causes of childhood cancer and find more effective treatments specifically for children, had only one treatment protocol available for Sebastian’s diagnosis. Despite the lack of options, we were nonetheless thankful we had two local facilities that were qualified to treat Sebastian.
His protocol required an initial, highly invasive surgery. That took place in November of 2015 and it took a total of 7 hours. The longest 7 hours of our lives at that point. After five days of recovery in the surgical ICU and another three days for good measure, he was discharged and we went home.
Sebastian’s first chemo treatment began in early December, nearly 10 days after being discharged from surgery. It would be the first of 20 chemo treatments scheduled over the next 6 months. His protocol would also require 23 radiation treatments that would start in March of 2016.
The side effects of chemotherapy were significant. Sebastian lost 30+ pounds and had peripheral neurophathy, damage to his peripheral nerves, as side effects of the chemotherapy medication. It causes weakness, numbness and pain, usually in his hands and feet. The chemotherapy would also lower his blood counts, for which we needed to admit him to the hospital for blood/platelet transfusions on several occasions.
It was devastating to Sebastian every time we got the news of a low blood count as it meant more hospital time. As a parent, it brought about some of the more difficult moments we encountered on this journey. He would plead with us not to go to the hospital as he truly hated being there. It was so hard because we knew we had no choice but to take him.
Finally, in May of 2016 – on his birthday to be exact — he came to the end of his treatment schedule. Unfortunately, scan results came back inconclusive. After another tortuous three weeks of additional scans and tests, a biopsy was needed to see if the cancer was gone. Unfortunately, the cancer had spread so we moved forward with a much more intense chemotherapy protocol.
It was brutal to learn that Sebastian would have to continue to undergo more chemotherapy and suffering. We also recognized that this significantly changed the odds of a positive outcome. But, after a couple of stress filled days, we gathered ourselves and started the next phase of treatment.
It was even more difficult than the first.
The second phase would go on for another four and a half months and require three different types of treatments/chemotherapy drugs, one of which required five-night stays in the hospital. Those were particularly difficult. This treatment phase would culminate with yet another major surgery to remove any remaining tumors, as well as internal chemotherapy.
On top of this new protocol, Sebastian was scheduled to take part in a clinical trial starting in January 2017. The trial would involve the development of a vaccine that would help his body fight the cancer. They would take cells from the tumor and also remove some of his white blood cells. Then, they would manipulate his white blood cells to recognize tumor cells and then fight them off.
So, in November of 2016, Sebastian underwent another surgery. This surgery took about 5 hours and they were the longest hours of our lives to date. There are moments in life that one remembers vividly, when things just seem to slow down. The surgeon coming down to speak to Rose and me that day was one of those moments. He shared the devastating news that the cancer had spread throughout his abdominal cavity. We knew what that meant but had to keep that news to ourselves until we could figure out what’s next. That included a long recovery of nearly one month in the hospital after his surgery.
As we explored and discussed what other options were available to us over those weeks Sebastian was recovering, we came to the realization that we had nothing other than more chemotherapy with no prospects of a cure, just more hospital time.
We then made the most difficult decision of our lives. To come home and await the inevitable.
Our promise to him was that we wouldn’t spend another night at the hospital. Within two weeks of coming back home, Sebastian passed away in his sleep on December 29, 2016.
THE FIGHT AGAINST CHILDHOOD CANCER
As challenging as it may be to read, we share the details of Sebastian’s treatment because they are at the root of why the SebastianStrong Foundation was established. We’ve got really limited options for kids with cancer.
Since Sebastian’s passing, we’ve become acutely aware of the unique challenges kids with cancer face.
Children’s cancer research receives less than 4% of the National Cancer Institute’s budget for cancer research. Since kids only represent roughly 1% of new cancer cases annually, there are also limited resources and efforts from the pharmaceutical industry to find a cure. Because those two groups, government and the pharmaceutical industry, provide such limited resources to pursue cures for childhood cancers, supporting foundations that are focused specifically on childhood cancer research are critical if we are to be successful.
We’ve also come to learn that many of the larger and more recognized cancer related foundations and the majority of their fundraising is geared towards adults. Many of you have supported our fundraising efforts in the past for the American Cancer Society as well as Sylvester Cancer Center (where Sebastian was treated). Unfortunately, not enough of those funds go to fight childhood cancer.
As a society, we’ve made significant strides in the fight against many adult cancers. Thirty years ago, breast cancer and prostate cancer claimed many more lives than they do today. The advances in diagnostic testing to detect may types of cancers in early stages, the discovery of more effective treatment options, and development of hundreds of new drugs have been critical toward helping more adults achieve more positive long term outcomes after a cancer diagnosis.
In stark contrast, over those same three decades, only eight (8) drugs have been developed for use on children with cancer. And unfortunately, there are no early diagnostics scans for children. Children – and parents — come to realize they’re sick only when symptoms from the disease are evident.
FIGHTING THE GOOD FIGHT
Sebastian embodied what ESPN Sportscaster and Stuart Scott shared while undergoing his own battle with cancer — “When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.”
By that definition, there’s no doubt in my mind that Sebastian beat cancer. Anyone who saw Sebastian could see he was sick, but if you just talked to Sebastian, you’d never know. He never asked why me? He lived his entire life and through this entire battle with a positive attitude and fought until the very end. He’s was a true warrior.
Sebs, we love you and miss you so much. We will spend the rest of our lives honoring you and working to find a cure for other children.
Children deserve better! Please help us make a difference.
Oscar P. Ortiz
Executive Director & Sebastian’s Dad