Imagine finally completing your family. Imagine getting through all of the tough sleepless nights of infant and toddler stages , finally feeling that you are ready to really start living and building the next phase of bonding with your children. The phase where as parents we really start forming a relationship with our kids. Then out of the blue one trip to the doctor changes your life forever.
In July of 2021, our daughter Sophia was a lively, healthy 7-year-old little girl who was finally able to physically go to school after a crazy year and a half of COVID. She was looking forward to a year of normalcy and ready to be a Country Parkway 3rd grader.
Sophia began experiencing a pain in her side. We thought she pulled a muscle learning the monkey bars. After a week of no relief we asked Sophia to show us where she felt the pain. That is when we felt a lump. The next day we took her to her Dr., from there we were sent for a sonogram; within 3 hours of the sonogram we received a phone call saying we have to go to Children's for a CT scan, that an 8mm solid mass was found on Sophia's rib cage. The following day we went in for the CT scan. The scan showed not only the tumor on Sophia's rib cage but also a few on the lining of her right lung. We were immediately admitted and a biopsy was taken. After that felt like an eternity.
About a week later we received the phone call that no parent ever wants to receive, Sophia had Ewing’s Sarcoma, an aggressive and rare form of cancer. She immediately began treatment, 14 rounds of chemotherapy at Roswell Park and Oishei Childrens Hospital and 31 rounds of radiation at Sloan Kettering Memorial in NYC.
Sophia and many kids with tumors receive a chemo drug called doxorubicin that is nicknamed “the red devil”. It gets its name because it literally turns your urine and tears red. It causes nausea, vomiting and diarrhea. Doxorubicin is associated with significant cardiac toxicity. It can cause irreversible heart muscle damage that can lead to heart failure. So they closley monitor you heart throughout treatment. This is just one of the 5 chemotherapy drugs Sophia was on. They were all approved in the 1970s. Most of the time chemo can cause a significant drop in your bodies white blood cell count. Sophia had to take a shot called Neulasta after every chemo treatment to boost her white blood count. Neulasta often causes severe muscle aches and low grade fevers. When a child with cancer has a port, which in most cases they do (it is how the chemo is administered) and they spike a fever of 100.3 degrees or more, it's a guaranteed trip to the ER where cultures are ran and antibiotics are immediately given. It's protocol to ensure the port isn't causing an infection. For Sophia most times the fever was caused by the Neulasta shot and she was given antibiotics for absolutely no reason. Even if the cultures come back negative and the child is Neutripenic (meaning they have an extremely low white blood cell count), they must remain in the hospital until they are fever free for 24hrs and cultures come back negative.
Despite all of the challenges, including many ER visits, blood transfusions, needing platelets, and fevers, Sophia triumphed and became cancer-free in April, 2022.
In hopes to prevent relapse Sophia was put on an 8 week maintenance chemo. All summer we would take daily trips to Roswell to receive her infusion. We would talk about all of the love and support we have been given throughout her journey. From childhood organizations, to friends, family and perfect strangers. The community support is something we will never forget and are so grateful for.
Sophia decided she wanted to start giving back. She knew the importance of support and she wanted to make her nurses and fellow cancer warriors smile the way people made her smile.
Sophia decided to host a Lemonade stand. Like every child Sophia loved hosting Lemonade stands on hot days to make some extra cash. But this one was different, Sophia prepared for weeks for this event. Before we knew it it was soaring through social media. We decided we were going to need a bigger space other than our front lawn, so we moved it to our deli on Maple Rd. All plans were made, everything was set. We were ready to celebrate the end of maintenence chemo, ready to go back to a somewhat normal life. Sophia even came up with her own sandwich to sell at our deli called the Going Gold Sangwich, where all proceeds would also benefit her mission.
Unfortunately, cancer had another plan. On the first day of the last week of Sophia's maintenance regimen, one week before her event, Sophia’s scans revealed a relapse with new inoperatable tumors near her heart. We were devastated. We were always told odds were not in Sophia's favor once Ewings Returns. That her survival rate would be less than 5%.
We had to tell Sophia that even though she had been doing everything she needed to, the cancer had returned and that she had to do it all over again. Think about telling your 8 year old daughter that her hair would fall out again, just when it started to grow back. That she most likely wouldn't be able to attend another first day of school, that this time we would have to travel out of state every two weeks for treatment. Imagine having to answer yes and seeing the fear in her eyes when her first question was, will I have to get Neulasta again? Imagine your 8 year old child crying to you asking why her prayers aren't working. Why God isn't listening. It was devastating. We felt helpless. But we remained positive.
Despite the news of her relapse, Sophia insisted on continuing with the Lemonade stand. She wouldn't take no for an answer. She sold cookies and Childhood Cancer Awareness yard signs, she raffled off a pair of Bills tickets and sold her Going Gold sandwich. Sophia Raised over $7,000.00 that day. She wanted to donate the money to Shine Gold (a childhood cancer campaign ran by Hope Rises). But Sophia wasn't stopping there. She wanted me to help her write a letter and send it to mayor Brown stating why September should officially be declared Childhood Cancer Awareness month in the City of Buffalo. We wrote the letter, and off to the mayor it went. On the morning of the Shine Gold Fireworks event in 2022, Sophia was hand delivered the official documentation that September would indeed be declared Childhood Cancer Awareness month in the City of Buffalo.
That night,
Sophia The Fierce Inc was born. Thanks to a selfless lawyer, we had Sophia's foundation up and running in no time. Sophia had big dreams for this foundation; with a mission to bring joy to other children battling cancer, their families and caregivers through activities like Bills games, camping, quality family time, and so much more. But Sophia's kindness didnt end there despite all she was going through. Sophia wanted to continue to help others. From taking a care package to a homeless man under a bridge that she noticed everyday on her ride home from Roswell, to making homemade Valentines Day cards for the nurses on J12S at Oishei Children's Hospital. Sophia's mission was simple …. to make people smile.
Sophia the Fierce Inc. ultimatley had to be put on hold. Over the next 9 months we found ourselves taking weekly trips to Cleveland Clinic to receive trial treatments for Sophia's relapse. We were in a race against time to try and defeat this beast that was growing inside of her. The treatments helped, but were not working as hoped, and they quickly shifted to another trial treatment. Fluid started to accumulate in her lungs, but Sophia beat the odds and the fluid eventually stopped and we thought we were headed in the right direction. But we were wrong. A few months later fluid accumulated around her heart, and she had a paracardial window put in. Because the fluid showed to be malignant around her heart we knew that if the window was put in, it would undoubtedly spread the cancer to her left lung and it would only be a matter of time before there was nothing more they can do. If we didn't have the window put in, the fluid could cause her to go into cardiac arrest. We decided to put the window in and continue the fight. As we suspected tumors started to grow, more showed up in her spine leading to emergency radiation, Sophia lost the ability to walk on her own.
On the day we were supposed to start another trial chemo fluid was found in Sophia's abdomen, and we were told there is nothing more they can do, and to go home and spend as much quality time with our daughter as we can.
We weren't giving up. We then contacted a Naturalpath, and we had her on a regimen requiring her to take 81 supplements a day. It seemed to be effective as the fluid around her abdomen seemed to dissappear. However, within a few weeks it was back. We saw Sophia was declining. She had to be put on around the clock oxygen and couldn't get out of bed. Everything we were trying wasn't working.
On May 9th, 2023 at 9 years old Sophia gained her Angel Wings. She didn't want to go, she still wanted to fight.
Sophia was a beautiful, smart , funny, wholesome faithful little girl, who was taken from us way too soon. She wasn't ready to give up, her body simply just wouldn't allow her to keep going. Many parents don’t talk about the ugly details that come with this journey, it's simply too painful. So many cancer kids are fighting for a life they will never get. We need help get more awareness for our kids. It's because of children like Sophia, why awareness is so important. There are more than 50,000 kids right now that are battling this disease. Sophia shouldn’t have died. She shouldn't have lost her childhood, she shouldn't have had to suffer.
