If you would like to watch a brief video of why we created the Best Day Ever Foundation, please watch at this link. Amy Kappen shares their story beginning at 9:16 if you want to skip the intro part of the video.
This is why we fight and support pediatric cancer research and funding.
Imagine hearing the words, “your child has cancer.” If you’re like us, you would believe those to be the worst possible words to hear as parents. Turned out, the words, “we’re out of options” hurt a hell of lot more.
On April 6th 2016, our beautiful, then 5-year old daughter, Sophia, was diagnosed with the most common and curable form of pediatric cancer, Acute Lymphoblastic Leukemia, or ALL. We were told Sophia was considered standard risk and that remission rates were greater than 90%. All we had to do was get her through the three- year treatment protocol. It sounded so straight-forward. Simple compared to the initial shock of the diagnosis.
Sophia did achieve remission after her induction period. However, a month later, Sophia had a seizure as a result of side effects from the current standard chemotherapy protocol. We then realized that while overall cure rates were very high for kids with ALL, the toxic side effects of conventional treatment had not advanced much at all in the past 40 years.
In July of 2016, we believed Sophia was experiencing yet another toxic side effect of the chemotherapy with severe leg pain. In reality, she had relapsed faster than any of her doctors had ever seen. Sophia’s cancer returned within three months of achieving remission. The standard protocol for a relapsed cancer patient was to go after Sophia’s cancer with more aggressive chemotherapy treatments; hoping to obtain remission again and move directly to bone marrow transplant. That never happened.
Sophia’s oncology team at Cincinnati Children’s was aware of the CAR-T cell clinical trials at The Children’s Hospital of Philadelphia. We harvested Sophia’s t-cells on August 1st, 2016 with the hope of never needing them. Within one month, we quickly realized Sophia’s cancer had become resistant to chemotherapy, and we knew time was working against us.
As CAR-T cell therapy was still in trial, things did not move with ease or expedition. Sophia’s cancer was extremely challenging to keep at bay while we waited for her t-cell date. During that waiting period, Sophia became unable to walk or ambulate to use the bathroom. This resulted in Sophia wearing diapers, which infuriated her. She was not speaking or interacting with anyone, and she could barely move. Sophia was miserable. She looked pitiful. She was on a continuous narcotic pain infusion. Our previously vibrant, spunky, inquisitive five-year old, now almost six-year old, had transformed into a withdrawn and frustrated little girl overwhelmed with pain. She was losing her zest for life. We could not bear to watch our daughter suffer like this.
By October, her body began to swell. We assumed it was yet another horrible side effect from some of the medications. When we arrived in Philadelphia, we learned Sophia’s leukemia was not only in her blood, but it had mutated into lumpy solid tumors scattered throughout her body. We were blindsided and had no idea leukemia could do this. Our already large list of concerns grew significantly more at this point.
After Sophia received her manufactured t-cells in November, she endured a severe storm as anticipated based on her high level of disease. We knew this was our only hope to save our daughter. During her storm, Sophia turned six.
But after the storm, we witnessed something we never expected; a miraculous change. Sophia’s swelling began to decrease. She was more alert and engaged. She was coming back to us. Her spunk resurfaced. Her smiles returned.
Sophia’s fight was back.
Sophia’s bone marrow went from greater than 90% disease burden to 1% at 28 days post-infusion. Her tumors shrank significantly, although not completely. Sophia was on her way to trying to walk again. She was determined.
The transformation from October to December 2016 was unbelievable. The sparkle in her eyes returned. Sophia never looked more beautiful. We were given three and a half months with our spirited and strong daughter. We made every minute count. The trial, which was funded $40M by LLS, and the researchers and doctors gave us the most incredible gift and level of hope we had ever experienced.
But then came the 1st time we were told we were out of options. Even though Sophia’s bone marrow responded as expected with the T-cell therapy, her disease was beyond challenging. The team went off protocol, and a surprise to us all, it worked. For a little while.
At her three-month bone marrow aspirate, we learned the cancer was returning, and her leukemia was now CD19 negative. Our hearts broke yet again.
2nd time told out of options.
So we planned a Make A Wish trip in under eight hours and we were on our way to swim with mermaids in Sarasota Florida. Sophia had the best trip ever with the people she loved! Even though she couldn’t walk, she swam every day. She never looked more beautiful and we couldn’t believe the cancer was really back. We kept praying it was a bad dream.
The day we returned from our trip, we were informed Sophia had one more chance – another CAR-T clinical trial. But this time CD22. Sophia never knew about being out of options, she was always ready to fight! Greg and I were in awe of her stamina and determination.
The CAR T-cell therapy did what it was intended to do for her marrow. Unfortunately, the mutation of her disease was too much. We could not stop her cancer. She never made it to the second clinical trial.
Sophia passed away on April 5th 2017, exactly one year to the date she was diagnosed with her standard risk leukemia.
So we learned we were wrong, “your child has cancer” are not the worst possible words. The worst possible words a cancer patient or parent could hear are “we’re out of options.”
Finding cures isn’t going to happen overnight, but we’re moving in the right direction. In August 2017, the FDA approved the CAR-T cell therapy. Sophia’s story was part of the unanimous approval. LLS was an influential partner every step of the way of this treatment approval. Currently, it’s only approved for relapsed leukemia patients, but we fight for it to one day be a front-line defense against this ugly disease.
By supporting organizations who understand the critical needs for advances in treatment, we can work towards the first step of ensuring no one should hear the words “we’re out of options” ever again.
Since 2016, Sophia’s story has impacted the organizations we support by over $525,000 (net)! We will never stop fighting for a cure while uniting families.