On March 9th, 2005, Isabella Joanne Santos came into the world. Her first two years were filled with memories and milestones just like every other child. In the summer of 2007, she began to complain of frequent back and stomach pain.
After months of misdiagnosis, an MRI revealed a tumor in her abdomen and showed the disease had spread to her bone marrow. On October 4, 2007, she was diagnosed with stage 4 Neuroblastoma.
Isabella’s mom has told her daughter’s story more times than she can remember. But that doesn’t mean it gets any easier. In fact, the more time that passes, the harder it becomes. Each day brings the knowledge that Isabella is no longer here, that the world is missing out on the person her daughter could have been.
Each time the words come out of her mouth, she is reminded that she must talk about Isabella in the past tense. The way she says the words may change – sometimes her voice cracks, other times it’s almost deadpan, matter-of-fact.
But the details are always the same: 2007. Age 2. Pain. Doctors. Tests. Tumor. More tests. Diagnosis. High-risk neuroblastoma. Cancer. Rare. Survival rate. Treatment plan. Chemo. Surgery. Radiation. Cancer-free. Antibodies. Relapse.
Wash. Rinse. Repeat. Isabella endured five relapses with neuroblastoma before she passed away at 7-years old in 2012.
Rare is one of those strange words that can have exactly opposite meanings, depending on what you are describing. It can be beautiful, like a precious gem carved from rugged stone. But it can also be very, very ugly, like Stage 4 neuroblastoma. In the case of the latter instance, it means 700 children are affected each year. It means children, usually under the age of 5, are diagnosed with a form of cancer. It means scary statistics about survival rates and relapses. In the case of the latter instance, rare is not one of the words you want to hear.
The Isabella Santos Foundation wasn’t born just because Isabella died of neuroblastoma. It was certainly a marker for motive. But the work of the team with countless volunteers, supporters, board members, and partners has blossomed into something else – something rare. It is an extraordinary glimpse at how one special, beautiful child’s legacy can help save others. Others who have to face terrible news, whose parents have to tell (and retell) stories of their journey, thrusting themselves back into those haunting moments of fear. It is a window, an opportunity, to see how one child’s legacy can lead to funds for research and treatment, in an effort to change the statistics for the better. It is a unique look at how people can continue to fight even when one battle is lost. And, in this case, the word rare gets to become something positive again.
ISF has donated nearly $5 million to expand the scope of research and treatment, and to fill various needs surrounding neuroblastoma and other childhood cancers. It has partnered with major hospitals, institutions, and charities to support children, families, caretakers, doctors, nurses, staff, volunteers, and all who are – or have been – affected.
And it exists because of Isabella, because of her story. Her motto was: Beat. Grow. Live. “Beat cancer, grow my hair, live my dreams.” The foundation in her name dedicates itself to broadening that so that they -and others- may Beat (the odds), Grow (awareness), and Live (without fear). Join us
Isabella’s Diagnosis & Treatment
On March 9th, 2005, Isabella Joanne Santos came into the world. Her first two years were filled with memories and milestones just like every other child. In the summer of 2007, she began to complain of frequent back and stomach pain. After months of misdiagnosis, an MRI revealed a tumor in her abdomen and showed the disease had spread to her bone marrow. On October 4, 2007, she was diagnosed with stage 4 Neuroblastoma.
Isabella immediately began a treatment regimen of chemotherapy to contain the disease. Her parents researched her treatment options and determined that her primary care would be transferred to Memorial Sloan Kettering Cancer Center (MSKCC) in New York City where they specialize in Neuroblastoma. Over the next 9 months, she received 7 rounds of chemotherapy, surgery, and radiation. In April 2008, she was declared cancer-free and enrolled in an innovative 3f8 antibody treatment regiment developed by MSKCC. Unfortunately, just three months later, scans showed that her cancer was back in her brain.
Isabella and her family relocated to NYC to begin an 18-month treatment regimen that would include brain surgery, chemotherapy, radiation, and more experimental treatments. This time a port was placed in her head and treatment would be administered directly into her central nervous system. In December of 2009, Isabella completed a year and a half of treatment for her relapse. But only three months later the cancer had returned yet again… this time to her bone marrow.
The following year was filled with more chemotherapy that would destroy her cancer, only to have it return again in the fall of 2010. This time she would receive two rounds of her most intense chemotherapy to date. It was heartbreaking to watch what the poison did to her little body but once again she was declared disease-free.
In March of 2011, Isabella was enrolled in a clinical trial at MSKCC that tests an extremely high dose of 3f8 antibody. The pain was intense and the days were grueling but she was hoping for a cure. She received this treatment one week a month for 6 months until she relapsed again in August.
Isabella’s treatment was moved to the Children’s Hospital of Philadelphia that last fall and she was enrolled in an MIBG therapy treatment plan. This therapy would fill her little body with liquid radiation in the hopes of slowing down the cancer’s progression. From August through February, the treatment seemed to be slowing the progression and destroying the majority of the cells completely. However, once this treatment was complete, there were few options available to children with minimal disease and a high frequency of relapse. In the last 5 years, Isabella had tried almost all forms of treatment available and the decision was made to maintain a good quality of life for her while living with cancer.
This plan seemed to work for a couple of months, but scans in May of 2012 showed that the disease was now present on Isabella’s bones. She was placed on a new Phase 1 trial, hoping research was progressing fast enough to save her yet again, but this time it was too late. After one month on the trial, the disease was taking over and had formed masses up and down her entire spine. The decision was made in June 2012 to discontinue treatment and take Isabella home.
Isabella and her family flew to Orlando for one last Disney World trip as a family. She was able to enjoy watching the fireworks over Cinderella’s castle and met every Disney character they had. Once they returned to Charlotte, they settled into their home and made Isabella as comfortable and pain-free as possible. On Thursday, June 28th, 2012 Isabella lost her battle with Neuroblastoma after almost five years of fighting. She took her last breath with her Mommy and Daddy beside her.
After the loss of Isabella, the dream is that her fight will change the outcome for other children. Isabella always dreamed of a world with “No More Cancer.” The Foundation continues in her name, hoping another child will be saved through funds raised in Isabella’s memory.