Meet Saoirse! She is the inspiration for this foundation, and our pride and joy. She has inspired thousands to get off their butts and do something about childhood cancer, especially Neuroblastoma.
At 11-months-old, and after weeks of misdiagnoses, we were told that Saoirse had a malignant tumor called Neuroblastoma in her abdomen. On first examination, her doctors were hopeful that, due to her young age, she would be able to be treated as an intermediate risk patient. However, after her initial staging tests, doctors were concerned with the aggressiveness of her tumors, and we were left with a “wait and see” approach to her initial treatment response.
Unlike most NB kids, Saoirse had two primary tumors – one on each adrenal gland. Her entire abdomen, from ribcage to pelvis, was full of tumor. She also had lesions on her skull and behind her eyes, and disease throughout her bone marrow. Even further biological testing showed that her tumor was nMYC (the NB oncogene) amplified, placing her into the high-risk category, requiring much more aggressive and extensive treatment. The only positive result we received initially was that her abdominal tumor was over 90% dead, causing them to have to send bone marrow samples for her biological testing because they could not get enough testable tumor from her abdomen.
To our excitement, Saoirse responded amazingly well to her treatment. We could visibly see the tumors in her head shrinking in front of us. She looked like herself again just three weeks after her first round of chemo. She continued to do amazing, never letting her treatments get her down. She flew through her surgery, recovering faster than anyone thought, and was declared NED (no evidence of disease) at the end of her induction therapy. We were thrilled, and we took her to Sloan Kettering in NYC to discuss different treatment options for her next phase of therapy.
Sadly, just two weeks after we got the all clear from Saoirse’s testing, the doctors at Sloan discovered disease in her bone marrow. We were hopeful that one additional round of high dose chemotherapy would clear her marrow, and we could continue on to antibody therapy. This was not the case. Saoirse’s disease had become resistant to chemotherapy, and she relapsed – her disease progressing extremely rapidly. We tried to control her disease with radiation and other chemotherapy drugs, but the progression was too rapid, and she was taken from us on December 13, 2011.
During her treatment, we learned a great deal about Neuroblastoma, and how it is conventionally treated. Since her death, we have been researching new ideas and treatments that are becoming available, and we are striving to change the way that this killer is treated. We promised Saoirse that we would fight for her, and we plan on seeing it through to the very end. No parent should have to survive their children, and no parent should have to watch them endure such horrible treatments.
So let the smiling, giggling, happy, funny girl inspire you to do what you can to help other kids. Saoirse would never want to see anyone suffer what she did, and we can make that happen. All it takes is a little perseverance – something kids have in endless supply!