Honored Kid

Tyler R.

Age 16
Tyler R. Kid Photo

Location

Tinley Park, IL, US

Diagnosis

Rhabdomyosarcoma

Date of Diagnosis

February 2012

Status

Cancer free

Treated At

Comer Children's Hospital

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My Story

Tyler is a 7 year old little boy who was diagnosed with Rhabdomyosarcoma on February 14, 2012. The week before Christmas Tyler had started to smile differently and we thought it was Tyler just being a silly 6 year old boy- so we ignored it for about a week. After going through Christmas Day asking Tyler to smile and him insisting he couldn't - we decided to take him straight to our pediatrician the day after Christmas. As soon as the nurse and doctor saw him they both agreed that Tyler had Bells Palsy. Tyler could only shut his left eye 70% and the left side of his face seemed to be paralyzed. Our pediatrician felt it would be wise to get a firm diagnosis from a neurologist- so we immediately made an appointment for the next day with a neurologist. The neurologist took one look at Tyler and confirmed that this was a clear case of Bells Palsy due to his symptoms. We had read online that sometimes the doctors perform a CT scan to diagnose Bells Palsy, but this doctor saw no need for a CT. He prescribed a steroid to try to help with the palsy. Tyler began having severe jaw pain within a week or so of the diagnosis and when we spoke with the doctor he said that often times when a nerve is regenerating itself -pain is common. But, the pain was extreme- keeping Tyler up at night crying and screaming in pain. As mommy, I never had a good feeling about the diagnosis- just mothers instinct ( like the saying goes- it is really true ). Tyler began physical therapy during the month of January to help regenerate the 7 th cranial nerve that was paralyzed. After about a month of therapy - things were not getting better - so we asked the doctor if we could have a prescription for a CT Scan. We got the CT scheduled and the day before the CT we dropped Tyler off at school and when I went to meet him after school at the book fair- his left side of his face was all swollen- unknown to us - this was Tyler's tumor. The next day Tyler had his CT and they said he had Mastoidis - which is an infection of the mastoid bone- they said no tumor- relief. Tyler was up all night in pain and we met with the neurologist the next day at 10 am and he read the scan and he thought it was either Mastoidis or Mumps- so he sent us to the Hope emergency room and from the minute we dropped off Tyler's twin sister and admitted Tyler to Hope - our lives were forever changed. They admitted him and started to treat him for Mastoidis. Everything changed the next morning when our pediatrician sent an ENT in and he looked at Tyler's face and said that he did not have Mastoidis - because of many different reasons. The ENT said because Tyler was having such extreme pain on his jawline he wanted to get a MRI immediately of the whole area, my heart sank- I just had a horrible feeling. The next morning Tyler was put to sleep for the first time of many and my husband and I sat and waited 3 hours while our baby was undergoing an MRI. By the time evening came- the ENT and our pediatrician both came in with the MRI report which stated Tyler had a large, deep mass in his left side of his face near the ear. The ENT said he had already called an ENT at Loyola who was world renowned for biopsing this type of tumor- because it was so deep he did not feel comfortable doing the biopsy. Hearing that he had made us appointment in 2 days made our hearts sink further. The report suggested that the mass was one of 2 types of cancers. I couldn't talk or look at Tyler - my worst nightmare was coming true and I didn't know what to do. Tyler had his biopsy on February 14, 2012 and within less than 2 hours the doctor came out and told Jason and I that Tyler's mass was malignant and the radiologist said from the early findings he believed it to be Rhabdomyosarcoma. At that point I looked into my husbands scared face as he said cancer and said we cannot ask why did this happen, but we had to be strong and know that Tyler would be ok. For the next week we researched doctors and made appointments to speak with different oncologists at many children's hospitals - we were told Tyler had to start treatment within the upcoming weeks. We were on a mission and would not stop until we found the doctors and hospital that was going to help Tyler get through this journey. We made our decision and chose Comer Children's Hospital at the University of Chicago. Within a week of choosing Comer Tyler had more MRI's, another CT scan, and PET scan and the CT showed that their were spots on his lungs too - so they biopsied his lungs and found that the cancer had spread to his lungs. This would change his course of treatment - he would have an intense year of 6 different chemotherapies and 28 days of radiation to both his face and chest. Within a few days Tyler had surgery to put in a double port to help with his treatment. Tyler was a little boy who had never missed a day of school until this happened - so his world was turned upside down in a matter of days. Tyler's treatments included one five day inpatient stay per month and one two day inpatient stay per month and 2 clinic visits every week. During the lung biopsy Tyler also had to have a tube that was attached to his lungs and came out of the side of his rib cage to drain the lungs- he was in excruciating pain and for a time was no longer the same happy little boy. But after Tyler had a few rounds of chemo- he changed and took on this amazing fighting attitude. He got used to being "poked" every week and had such an amazingly positive attitude that made so many people amazed. Tyler decided he wanted to play baseball and with a little hesitation - we knew this would be the best thing for Tyler. So when he felt well enough he played baseball with all the effort in the world - amazing all around him. Tyler continued to go to school when he was not in treatment and continued to succeed in his school work. When he lost his hair he started wearing baseball hats to school and never let it bother him. After a summer of intense treatment Tyler began radiation and the hardest part of his cancer journey. Every day for 28 days Tyler would get up at around 5 am and force himself to eat breakfast because he had to refrain from eating after 7am and refrain from drinking after 9am. He would go to school every morning during radiation and then leave around 10:30 to go to the hospital for radiation. Due to Tyler's young age and anxiety Tyler had to be put asleep every day for 28 days and would wake up and many times would get home and put on his soccer uniform and go play a soccer game after a full day of chemo and radiation. He amazes everyone who he meets- he lost 10 pounds during radiation and got horrible sores in his mouth and down his throat which caused him not to be able to eat- which lead to feeding Tyler through something called TPN through his port every night. Tyler went to school throughout this whole process of being accessed ( which means he had to keep his needles and tubes in all the time) but he was determined to go to school and we feel like the "normalcy" is what kept him going. Tyler is such an amazing, strong little boy who understands what it takes to make him feel better and gets up every day with a positive attitude and goes to school, soccer, boy scouts, and the hospital all in a weeks time. Tyler is a very brave boy that has overcome so many fears in the past year - fears that even an adult cannot always handle. He has a t-shirt that he wears to the hospital that says "Go Ahead, Poke My Port" - if that doesn't explain his attitude- I don't know what does. Tyler is a role model for young cancer patients who have overcome so much in their young lives. We believe that God only gives you what you can handle and that Tyler and our family are going to take this difficult experience and use it to help other pediatric patients and help raise awareness and funding for research to help cure Pediatric Cancer. When we were asked if we would be interested in having Tyler participate in St. Baldrick's - it was such an honor. Being a part of St. Baldrick's is the first of many steps Tyler and our family plan on taking to help Pediatric Cancer. No child or family should ever have to go though what Tyler and our family have gone through. Tyler has a story to be told for many years to come and he will help many other little children with his strength. He is doing very well and is due to be done with his chemo treatment in May. His last scans showed that his original tumor had shrunk by 80% and the cancer that had spread to his lungs was gone. The doctors are very happy with Tyler's scans and we are blessed to have such an amazing team of doctors and nurses who take care of Tyler. Tyler finished his 52 weeks of treatment on May 2, 2013! Tyler is doing wonderful. All his scans have been clear, he is a healthy little boy. Tyler is now almost 13 years old and is in 7th grade and doing all the wonderful things a 7th grader should do:) We are so very blessed and happy to have our little boy. We continue to now find ways to help fight this disease, so that one day, no child will ever have cancer.

The Childhood Cancer Ripple Effect

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