Simon, Jack, Avery, and Mackenzie
The Ride Janie Ride Foundation would like to introduce to you four very special people. It is our honor to have them as part of the Ride Janie Ride family and we take great pride in announcing that Simon, Jack, Avery, and Mackenzie will be the recipients for Ride Janie Ride 2020. Continue scrolling to read each of their biographies. Ride Janie Ride would like to thank all of those who nominated individuals. We will not forget any of the nominees and hope that they may be part of Ride Janie Ride in the future.
During the summer of 2019 Simon lived the life of any 8 year old. He spent a week in Durango, Colorado with his aunt where he attended science camp in the morning and spent the afternoons hiking, rock climbing, whitewater rafting, and enjoying other outdoor adventures. Over the 4th of July, he marched in the parade with his cub scout troop, attended a BBQ, and watched the fireworks. He rode the train to Montana to spend nine days on the Blackfeet Indian Reservation working at a local school and mission doing summer maintenance and spending time hiking in Glacier National Park. He did a six mile hike up to Virginia Falls; barefoot on the three miles up because that's just what he wanted to do. Upon our return to Illinois at the end of July, Simon planned to spend a day at Six Flags with his uncle. After a fun day spent riding roller coasters in late July, Simon began to complain of back pain. Within 36 hours the pain was so bad that we went to the ER early on a Tuesday morning. An x-ray revealed a compression fracture of his T8 vertebra. After a number of other MRIs, CTs, and ultrasounds, more than 20 tumors were found in Simon's kidneys, one on his spine, and one near his pancreas. Wednesday he had a biopsy of a kidney tumor and a bone marrow aspiration. Thursday he was diagnosed with Acute Lymphoblastic Lymphoma. Friday he has a port-a-cath placed in his chest and began the first round of chemo during phase one of the treatment. We are now in phase three of treatment and Simon is officially in remission as of November 7, 2019. The past few months have been an emotional rollercoaster ride as we've come to terms with his diagnosis, struggled with the side effects of chemo, and learned how to best navigate third grade academically and socially for a kiddo with cancer. We are blessed to have a huge extended family to provide support as well as the best neighborhood, school, church, and community to support us as we travel down this road. Right now, we focus on maintaining clear scans until November 7, 2024 to be able to rejoice in his being cured!
Jack was born on 3/27/06. He’s always been an active, happy, energetic child. He loves to play football, ride dirt bikes, listen to music, play video games, and spend time with his family, friends and pets.
Jack began complaining of “side pain” on his left flank and abdomen area in May 2019. The doctor examined him and determined that maybe constipation was the cause. The pain would come and go but got progressively worse. After 4 doctor appointments and no real answers or relief, we decided to go to the ER one evening in late September. After X-rays, blood work, and a CT scan, we left the ER with the news that we needed to see an oncologist ASAP! There was a growth on his 10th rib that looked very suspicious. We were immediately referred to Lurie Children’s Hospital and by that Monday, we were faced with many more tests, revealing tumors in the 10th rib, both lungs, his left humerus, and left femur. Devastating news! When we spoke to Jack about his feelings, he bravely replied, “I’ll take whatever treatment they need to give me, as long as I don’t die.”
Jack has been an amazing patient and he tolerates his treatments like the strong, brave kid he’s always been. As of December 2019, he is in his 3rd round of chemo and will face more testing in January 2020. This will determine if surgery is an option, as well as radiation and more chemo for sure.
Although our family is devastated and frightened, we feel blessed by the amazing support that we have received from our family, friends, and church. We have hope that someday Jack will be in remission and that maybe someday we can get back to our “normal” life once again.
Avery began his life already a miracle. He was welcomed home by his two-year-old brother Evan, and the two of them have been best friends ever since. Avery, fondly called Tiny Tank, is never without a smile or a pacifier. He loves to play peek-a-boo, roar like dinosaurs, and wrestle. He is now 15 months old and was diagnosed on August 18th with Rhabdomysarcoma. Doctors originally thought it was a dermoid cyst that was removed during a craniotomy and nasal resection a few days before. Unfortunately, once it was biopsied we were given the heartbreaking news. Avery is the only child with this type of cancer, in this location, that had it operated on without knowing it was cancer, in the world. Due to his age and size radiation and additional surgeries are not an option. We are at the mercy of an intensive 40-week chemo regiment to kick cancer's butt. And that is exactly what Avery will do!
June 1st was when our lives changed forever, we heard the word that no parent ever wants to hear, Mackenzie was diagnosed with AML leukemia. AML is the rarest form of children's leukemia, only 1 in 5 get this form. The next day she started her first round chemo that lasted 10 days. 2 days after it was completed and she was released from the hospital, she ended up back in the hospital with a fungal infection in her lungs, with a fever of 106. She had to stay in the ICU for 8 days until they got it under control and was able to go to the Ronald McDonald house. Round 2 and 3 went as smoothly as one can hope with aggressive high doses of chemotherapy. Mackenzie was able to start high school with everyone else and went for four days. The morning of August 23rd everything changed; she woke up with a 105.3 fever, was immediately rushed back to Luries, and immediately put back in the ICU. 10 hours later her whole body was crashing and was in complete septic shock, and full organ failure... and the doctors had no idea what was causing it. 12:30am the next morning she was rushed into emergency surgery to be put on full life support because they had no other options; the odds of her surviving the surgery were slim to none but they had to buy themselves more time so see what was trying to kill her. Four days after she was placed on ECMO we finally got an answer - she had contracted virdens strep and we were able to switch the meds to kill the virus. She stayed on life support until September 9th at which time they felt she was strong enough to try to start her organs back up again. We were in the CICU for the next month. Mackenzie was then given the option to not finish her chemotherapy just because of how much trama she had been through, and they just didn't know if her body could take it. Mackenzie being the warrior that she is said that she wanted to finish what she started. So with alot of prayers she started her last round October 2nd and it lasted until October 7th, she had to stay in the hospital until October 30th and then November 1st her bone marrow biopsy results came back and she was cancer free! Over the last 6 months she has been through 100s of procedures, transfusion, infusions, platelet infusions, B cell fusions, lumbar punctures, and bone marrow biopsies. She has also had intense occupational therapy and physical therapy to learn how to swallow, talk, eat, and walk. As of today she is back at school and is, as the doctor's say, a complete medical miracle. Mackenzie said something to me the day she was diagnosed that has become her catch phrase, "This is just a chapter, not my story " and she has proven to us how strong and determined she is. I have never meet a stronger person in my life. We are all#MackStrong.