Chris Ellis, Ramona Bond, Sara Bragiel and Matthew Bragiel
The Ride Janie Ride Foundation would like to introduce to you four very special people. We have been blessed to meet Chris Ellis, Ramona Bond, Sara Bragiel and Matthew Bragiel. Each of them have been diagnosed with various types of cancer. It is our honor to have them as part of the Ride Janie Ride family and we take great pride in announcing that Chris, Ramona, Sara and Matthew will be the recipients for Ride Janie Ride 2016.Continue scrolling to read each of their biographies. Ride Janie Ride Foundation would like to thank all of those who nominated individuals. We will not forget any of the nominees and hope that they may be a part of Ride Janie Ride for 2017.
Chris was diagnosed with stage IV neuroblastoma in July 2014 after a kick to his eye from his big sister led to its discovery. After an emergency craniotomy to debulk the tumor and save his eye he was scanned and disease was found predominantly on his left side but throughout his thighs, hips, pelvis, spine, skull, and in his marrow. In his upfront therapy he was declared 'no evidence of disease' after just two cycles of chemo. We continued with the entire protocol and the clinical study he was enrolled in leaving nothing to chance. All of this included 7 total cycles of chemo (roughly 42+ rounds); an adrenalectomy to remove his left adrenal gland that was completely taken over by the primary tumor; MIBG therapy clinical trial where a high dose of liquid radiation is infused in the patient making them highly radioactive; stem cell harvest and transplant of his own cells resulting in 100 days of isolation, severe mucositis, 3 weeks in the PICU fighting VOD and discharging after 10 weeks total, 12 rounds of proton therapy, immunotherapy. During all of this it was discovered that Chris also had SVT (supra ventricular tachycardia and an extra membrane in his left atrium). With one week left of inpatient immunotherapy after 15 months of continuous treatment our world was shattered once again to find out that even after all he had endured Chris had relapsed. Spots were found in his thighs, pelvis, and at the base of his skull. Since mid October 2015 Chris has had his gallbladder removed courtesy of a 2cm (that is cm, NOT mm) stone only to find his gallbladder was no longer functional, his liver 'swallowed' it upon shrinking after VOD. He had to abruptly cease chemo to undergo an emergency 20 rounds of radiation to his head to shrink the recurring tumor by his eye which was causing pain and eyesight problems. He just returned home from 11 days in the PICU due to an extremely low heart rate and blood pressure from what we don't know. As a result he had to have an ablation to eliminate his SVT because he could no longer take his heart medications. He is now approaching cycle 3 (1 week inpatient/2 weeks home/repeat for 17 cycles) of a chemo/antibody regimen that only 17 kids have had and 8 of the 17 are in remission. He will be scanned at the beginning of February and if the tumors remain unchanged or show shrinkage we continue and if not we stop. This desperately needs to work or we begin grabbing at straws. Neuroblastoma is a beast but Chris is a tank. This has devastated our lives but we aren't broken. Chris' dad told him that cancer hates happiness so we need to stay positive. 8 children with refractory disease are now in remission from this latest treatment. We have no reason to believe our Chris won't be number 9. It is after all his lucky number.
Ramona Etta Bond was born on july 22, 2011. She was a healthy, perfect, sweet baby girl! She remained very healthy up until her leukemia diagnosis in 2014. She woke up on December 10th with a fever and wouldn't walk because her leg hurt. After 2 weeks of different tests she was diagnosed with Acute Lymphoblastic Leukemia. Ramona is the toughest little girl i know and has given me the strength to endure the past 2 years of treatment. She loves all things girly. She loves playing with her friends, going to preschool, dancing and singing. She loves her older brother Sebastian and her baby sister Elliette.
Sara was born on 07/24/01, she is our youngest and only daughter. Sara is as tough as her brothers because she had no choice and she bosses them around and truly believes she rules the house. Sara attended St. Rene Goupil Grammar School and is currently a freshman at Queen of Peace High School. Sara played softball, basketball, was a cheerleader and plays volleyball for Queen of Peace. In August of 2015, just as our son, her brother, was recovering from his access port infections we discovered a lump on her neck right below her ear. She had gotten this lump a couple months earlier but it had gone away so we attributed it to an infection after she was prescribed antibiotics. This time it wasn't going away. After consultation with yet more doctors it was determined that they would remove the mass and have a biopsy done. After the results came back we were devastated with the news that the mass tested positive for Hodgkin's Lymphoma. It was further learned that Sara had another mass behind her stomach which also contained Lymphoma cells. As long as I live, I will recall the day, sitting in the hospital bed adjacent to the bed Matthew was in and telling her the news. Her first words were, "Why? Why?" as she began to sob. She saw and had living proof from the young man laying in the bed next to her, the fight that she would be up against. Again we went through the process of learning of a plan on how to fight the ailment that was going to reduce our once vibrant daughter to a sick child. I couldn't help but silently think to myself, as I sat and watched her digest the horrible news, that she would lose all her beautiful long blonde hair. Sara herself even said to Kathy and I, "It took me 2 long years to grow this." Fortunately we learned that her treatment would not be as intense as Matt's. The diseases, although the same (Lymphoma), were uniquely different. Sara's protocol of treatment would be 6 cycles of 2 outpatient treatments each. We were also advised that possibly 2 rounds of radiation would be needed depending on how well she responded to chemotherapy. As it happened her struggle has not been as horrible as Matt's. After each cycle Sara would be sick to her stomach and tired for a few days after treatment but was able to attend most of her classes and find and maintain her "new normal." As parents there were moments that broke our hearts watching Sara go through her struggle. I recall looking in the garbage can of the bathroom one morning and saw what appeared to be her entire head of hair in the trash. It seemed like it waited and just fell out all at once. Another moment was a day that I picked her up from school. As all the students exited the school I saw my beautiful daughter come out wearing her beloved Blackhawks knit cap. It was then I noticed all the other girls with their long hair and Sara, the only student, wearing a hat, in the still warm days of September. Although Sara was stricken with this horrible disease and was not able to play volleyball, she attended almost every game and practice in support of her team, wearing her Blackhawks hat every single time. Sara just finished her last cycle of chemotherapy about 2 weeks ago and today (3/11/16) Sara went for her PET scan to determine if radiation or further cycles of chemotherapy would be needed. As with Matt, Sara has lasting effects, most notably, the scar on her neck where the lump was removed. I guess if that's the price we have to pay for a healthy daughter, consider it paid. Note: I have noticed other children going through this horrible and hard fight. I've noticed that parents update their websites regularly. I used to do that with Matt, on his webpage. It seemed though, that every time I updated with good news something horrible would soon follow. I'm not much into superstition however as desperate as we were, I was willing to try anything, to include remaining silent, to try and turn luck in our favor.
Matthew was born on 12/12/98, he is our middle child. He followed in his brother Joey's footsteps with everything from likes to dislikes. He attended St. Rene Goupil Grammar School and is currently a junior at St. Laurence High School. Matt played football, baseball, basketball, bowled and skied. In February 2015, Matthew started to have reoccurring stomach pain. Since Matt ate everything in the house that wasn't nailed down Kathy, his mother, and I attributed the pain to eating too much. After the pain lasted more than a week we began to think something may be wrong. The last weekend of February 2015 the family went on an annual school sponsored ski trip. Although Matt skied with his friends it seemed something was not quite right with him. Upon our arrival home Matt missed school Monday with stomach pain and Tuesday Kathy took him to Imedia-Care to have him checked. After a blood work up Kathy was informed that test showed something wasn't right, that he may be bleeding internally and that he should be taken to the emergency room immediately. Kathy took Matt to Loyola Medical Center and after a series of tests it was determined that Matt had a mass growing in his small intestines and another in his sinus cavity. Follow up tests and ultimately a biopsy revealed that Matt had non-Hodgkin's Lymphoma. After consultation with the oncologist and research, an intensive chemotherapy treatment plan was put in place for Matt. The treatment consisted of 6 rounds of in-patient chemotherapy each lasting 5 days. Matt started his treatments and from the very beginning problems began. After EACH and EVERY chemotherapy session Matt suffered from some type of complication, so often that even his primary oncologist told us that he'd never seen someone have such a difficult time. Matt's issues included the flu, shingles, infections and ultimately after the 5th cycle, 3 different infections at his access port. The last issue was so bad that Matt had to be put into a medically induced coma so that his body could focus alone on fighting the infection. For 14 days we watched our son, lay prone, not able to communicate or even open his eyes. I found out later from the director of the Loyola Pediatric Intensive Care Unit that she was supposed to go home the night we brought Matt in but she didn't because she didn't know if he was going to make it through the night. It was the hardest thing in the world for us when they gave us time to say goodbye when they were about to "put him to sleep." When Matt recovered, the oncologist informed us that Matt was finished with his treatment plans. His latest PET scan showed that Matt was clear of the 2 masses (stomach and sinus cavity). In the doctor's words, "he has had enough." Matt spent 14 days in a coma and a total of 28 days in ICU. When he was brought out of the coma, Matt had to learn how to walk again. He had lain so long in bed that his leg muscles atrophied rendering him unable to walk. Matt also suffered long term effects. The infections damaged his eyesight and to this day he has trouble with his left eye. It is unknown if his left eye will ever be 100% although we remain hopeful. Today, Matt is picking up where he left off. He is trying his hardest to regain a year of his life back. He has since obtained his drivers license, applied for jobs so as not to burden my wife and I asking for money and even joined the St. Laurence hockey team (even though he never skated, again, following in his brother's footsteps). With Matthew we are adapting to the "new normal." In the past a cold was a cold, the flu was the flu and a stomach ache was a stomach ache. Now, when Matt gets these ailments, we worry, we become fearful and we pray even harder. Through it all, Matt told us all the time, I'll be fine. He's our inspiration.