Kylie Rose Jacobs was diagnosed with cancer, at the age of five, in January 2015. She was enjoying her kindergarten year at Arrowhead Primary School in Copley. She loved playing with her sister Emmie, who was three at the time, and her brother Blake, who was six months old. She had experienced on and off constipation for about a year, and her pediatrician at the time was treated it as normal. At the beginning of December, 2014, she began experiencing more stomach pain and was having trouble sleeping due to leg pain. Again, we were told this was constipation and growing pains. Thankfully, we live next door to our now family physician, Dr. Kelli Sabin. We asked her if she could come over and examine Kylie’s stomach. She immediately felt the tumor and ordered a CT scan at Akron Children’s Hospital for the following day. We never left the hospital, for they found a Wilm’s tumor, a type of kidney cancer. She was admitted and stayed for 30 days, which included a biopsy, a seven day stay in the PICU, multiple drainage surgeries, and the beginning of her chemotherapy. For the next seven months, she received 16 rounds of chemotherapy, a major surgery to remove her tumor and kidney, and radiation therapy. It was during her first stay at the hospital when we continually told her that we were proud of her for being Sweet, Smart, Strong, and Brave. We said it multiple times a day and it became her mantra. That is how SSSB originated.
In August 2015, Kylie was declared “Free of Cancer!” The family was able to celebrate this news with over 700 people on August 30, 2015 at Kylie Rose’s Run, our first annual 5K and Family Fun Run that rose over $15,000 for Akron Children’s Hospital’s Oncology Dept. Kylie was able to return to school in September as a first grader!
That Christmas, 2015, she asked Santa for a sewing machine. She began sewing simple bags for her sister and grandmas. She then decided to sew bags for the children in the hospital and stuff them with fun activities that they would enjoy. These bags are called Kylie’s Bags of Love and we have already taken over 500 bags into the volunteer office to have delivered to the patients. This project has become an amazing thing to witness. Once her idea got out, the community, her school, neighbors, friends, strangers, etc. have embraced it and have been contributing the various activities to stuff in the bags as well as volunteer to sew some bags.
In February 2016, just six months after Kylie was declared cancer free, they found a spot on her liver at her 6 month CT checkup. Obviously we were devastated, but we knew we would fight with full strength and hope. After two surgeries and six rounds of harsh chemotherapy over a six month period. During this time, Kylie remained the most positive, graceful young girl we have ever witnessed. She also continued to make, stuff, and deliver the Kylie’s Bags of Love.
In August 2016, Kylie and her family held the 2nd annual Kylie Rose’s Run which gathered over 1000 runners and raised over 17,000 for Akron Children’s Hospital Oncology Dept. It was such a fun, family event. Kylie was once again declared cancer free in September 2016. She was so excited to get back to school as a second grader.
In December 2016, just three months of being cancer free, the cancer came back in her liver once again. We headed down to Cincinnati Children’s for a ten hour surgery, coming home On Christmas Eve. Starting in January, Kylie received 18 rounds of specialized proton beam radiation at Cincinnati Children’s. We were there for a month, but certainly made the best of our situation. Once she was back in Akron, she went through two rounds of chemotherapy, and then in mid April, was admitted to Akron Children’s Hospital for 36 days. She received an extremely intense chemotherapy treatment followed by stem cell transplant. Kylie was strong enough and had high enough counts to come home at the end of May. We could not be more proud and amazed as to how she handled this. She had to remain out of the public and was only permitted to eat home cooked meals for 100 days - which was until August 5th, 2017. She had her 3 month, post treatment scans right before that, which were clear, so she was able to have her port removed. We definitely had fun celebrating!!
We held the 3rd annual Kylie Rose’s Run on August 27th, starting at 4:00. The event offered a competitive 5k, a competitive one mile, and a one mile family fun run. It was truly a day of celebration. After the third Kylie Rose’s Run, we have been able to give over $52,000 to Akron Children’s Hospital Oncology Department. It has truly become a community event!
Our 4th annual Kylie Rose’s Run will take place on Sunday, August 26, 2018 at 4:00. Go to the Kylie Rose’s Run link to sign up and for more information.
Kylie was able to begin third grade at Arrowhead Primary School in Copley on time in 2017! Her 12 month scans on June 1, 2018 were clear - no evidence of disease, which is the longest she has ever remained free of cancer. She is currently nine years old and is loving every minute of life. Emmie just finished first grade and Blake will be four in July.