Adley loves to play dress up, swim, play outside and Frozen! On April 17, Adley was diagnosed with neuroblastoma. Adley has three tumors and is currently on her 3rd cycle of chemotherapy. She has had one major surgery removing a tumor on her spine – the doctors were able to remove 75% of the tumor. Adley is very brave, always has a smile, and really has made a lot of progress. Mom and Dad have been with her every step of the way. Over the next several months there will be more chemo, surgeries, and plenty of hospital stays. St. Louis Children’s has been great; they really go out of the way for Adley and her family. Techs, nurses, doctors and all other staff have all done an amazing job, from the moment you walk in, to the moment you walk out. Adley loves the child life specialist and playing in the playroom. Adley and her family would like to participate in this program so that Children’s can keep doing what they are doing; the more research the better.
Ariana enjoys singing and playing cards, and is a big gan of Tye Tribett. She also likes helping with her new baby sister. Ariana was diagnosed in April 2014. She had surgery along with 30 rounds of radiation and 9 rounds of chemo. This lasted until July of 2015, and she relapsed in November of 2018. Ariana had another surgery, 39 rounds of radiation and 12 rounds of chemo. She socially distanced rang the bell on March 30, 2020!
Ariana and her family deal with late effects, but hopefully a life of no evidence of disease. Ariana will start high school in the fall. Siteman Kids at St. Louis Children’s Hospital has been nothing short of amazing in the 6 years Ariana and her family has been fighting. Angels walk the hallways and take care of the children. Neuro-Oncology has provided excellent expert care.
Elizabeth loves dancing, art, pageants, showing animals (4-H/FFA), fashion, poetry, reading, and travel. She is PASSIONATE about advocating for Childhood Cancer. Elizabeth is a huge fan of Grant Gustin, Mercy Me, St. Louis Cardinals/St. Louis Blues, University of Illinois and Friends.
It has been a long enduring battle with cancer; this will be Elizabeth’s 5th “anniversary” with Pedal for the Cause. Her family is so thankful Elizabeth is still with them despite the fact the battle is far from over. Elizabeth and her family have seen tiny miracles along the way as their faith has been tested over and over again.
Elizabeth is a true inspiration – a treasure for all who get the chance to meet her and get to know the dedication she has to the pediatric cancer world! Whether from a hospital bed, on the road, or home, she might be calling Congressional leaders, Governors or influential individuals regarding the need to save “tomorrow’s leaders”…kids with cancer….what if one of them holds the keys to unlock so many unknowns in the world of cancer?!
Elizabeth has many passions; one of those passions is pageants. She turned one of the most life altering events a person could go through into a positive with her platform Crowns Fight Cancer: Just a Girl Changing the World One Rhinestone at a Time, impacting young/old, poor/rich, healthy/sick! No one chooses cancer for their child, but if a kid was going to get cancer, it met its match with Elizabeth. She’s the right person for the job of warrior princess. Over the last 4.5 years, Elizabeth has had to overcome partial paralysis, heart, lung, endocrine, learning challenges and hearing loss due to the toxic treatments she has taken. This winter, she received her first pair of hearing aides to help compensate as her hearing continues to erode. Elizabeth completed 18 months of COG protocol therapy at St. Louis Children’s hospital (at time of diagnosis it was estimated that 95% of Elizabeth’s total body had metastasized cancer stemming from original tumor site in her right pelvic area [estimated to be the size of a softball]) and was a participant in many, many research trials during that time. It was discovered at the conclusion of her therapy that her bone marrow was resistant to traditional therapies. This was very difficult news to hear for everyone! They quickly began a search for additional possible clinical trials that might give them time or even a possible cure. News from some of the best cancer colleagues in the nation was very difficult to hear over and over. They now split her care between St. Louis Children’s and Cincinnati Children’s Hospital.
Similar to diagnosis, every dream you ever had as a family was suddenly in danger once again. They set to work on a “life list” of sorts. They got her back into some of her passions such as dance and she had a period of “stability” with her cancer until a tumor was found on the T10 area of her spine (relapse #2) in January of 2019. A new Phase 1 clinical trial was found to be effective in eliminating the tumor; however, that joy was short-lived with the discovery in January of 2020 her cancer had relapsed again (#3) and spread aggressively into areas that had years prior been eradicated throughout her body. It is hard and confusing to understand how these can be labeled as “relapses” when she’s never known what it was like to be “cancer free.” Elizabeth and her family’s world was yet again shattered. It was quickly determined that MIBG therapy and scans were no longer options for Elizabeth. Doctors decided to revisit some older immunotherapy drugs with new dosages to see if that would halt the growth of her cancer. This combination was difficult on Elizabeth. Following the first round, she was extremely weak, unable to walk unassisted, but determined to rise up and fight back. She left the hospital after 10 days of treatment and stood from her wheelchair at her High School basketball game with assistance for “school song” in her Pom uniform. Although she couldn’t stay for the remainder of the game, she fought back hard – soon dancing at the State finals placing 9th as a team in her division.
After two cycles, it was determined this treatment wasn’t providing the response doctors had hoped for considering the toll it took on her body. Consultation with some of the nation’s best doctors had them considering Texas Children’s Hospital as their next partner, but thanks to Covid-19, those plans were quickly interrupted. Instead another Phase 1 Clinical trial spot came open with the adult drug Ventoclax typically used to treat patients with Leukemia. Although unlikely, her team offered this option as a possibility to slow the growth of her cancer. At the time of this writing, Elizabeth has now completed 3 cycles of treatment on this trial. It has made some small progress that lead doctors to believe it might be what they were looking for. The next goal is to find the correct dosage as she’s often in the hospital for transfusions of blood or platelets.
Elizabeth continues to defy the odds; she continues to seek out options that may help others and she continues to HOPE for a better tomorrow. The constant stress is taking its toll on Elizabeth and her family. Although cancer has shaped them, they do not let cancer strictly define who they are. They are a family; they are faith driven, steeped in community service, a passion for animals, and a deep desire to see “a world without cancer.”
They do not know exactly what the future holds, but whatever is to come they know Elizabeth will always be hopeful, and her strength to fight comes from within. Elizabeth plans to major in pediatric oncology nursing in college and come back “home” to St. Louis Children’s Hospital where her journey started! Elizabeth remains committed to this program so that she can serve as a role model for other teens and young children diagnosed with cancer. Her story is one of hope and determination at every juncture! Statistically speaking she shouldn’t be here with us “celebrating” 5 years, but she is quite literally a walking miracle. Her purpose is to reach into the hearts of adults to educate/compel them to take a ‘ride’ with her, learning how to live life and finding tomorrow’s cures.
Elsa loves swimming, volleyball, basketball, art, and reading. She is a big fan of Disney’s Stitch, Taylor Swift and the St. Louis Blues. Elsa was diagnosed at 5 years old with AML on October 29, 2015. She had a stem cell transplant from her newborn brother. She relapsed after 1 year; and she was able to get back into remission with a DLI and Revlimid. Elsa relapsed again in 2019 and was a candidate for the NK trial at St. Louis Children’s Hospital. The NK trial gave her family an option of treating Elsa’s cancer without the toxicity of the standard protocol of treatment, a second transplant. She is currently recovering at home, and most importantly in remission.
A cancer diagnosis changes lives in the blink of an eye, but when the cancer diagnosis is your child, it changes your entire family’s lives. When Elsa was first diagnosed, she was the oldest child at 5 and her two siblings were 2.5 years old and a newborn. Life was hard balancing the hospital and home, but Elsa’s family made it work. Now the children are older, and they know why Elsa has to see her doctors or have procedures done. They know that she is sick and fighting cancer. They ask many questions about their sister and feel many of the emotions people experience with a cancer diagnosis. Elsa’s little brother Eli has even been called to action to help Elsa, not one time, not two times, but three times. He has given her his blood, his cells, and his immune system & blood type. Eli has sheds tears of sadness and fear; he has earned his name of Superman Eli! Elsa’s parents hope Elsa has a future filled with happiness and fun! They don’t know what her future truly holds, but they do know she is an incredible girl that has beat high risk AML three times with the help of her sidekick, Eli!
Harper loves dancing, singing, and music, as well as playing on her ipad. She loves Adam Levine (Maroon 5), Mickey and Minnie Mouse, Elsa, Baby Shark and the Mizzou Tigers! “rrrrahhhhrr!”
In August 2018, Harper’s pediatrician referred her to the Washington University Neurofibromatosis Clinic at St. Louis Children’s Hospital because Harper had physical symptoms (cafe au lait spots and neurofibromas) that mimicked neurofibromatosis (NF1). Harper did not have enough indicators at that time to receive a NF1 diagnosis without a genetic test. Because the test is very expensive and was not covered through insurance, the team advised not doing the genetic testing at that time. Shortly after her first birthday, Harper began to regress in speech and was delayed in many motor skills. She was not gaining weight and was overly tired, sleeping 14-16 hours a day. This was an area of concern so in February of 2019, the doctors did an MRI of the brain and found four tumors: one on each optic pathway nerve, one on her brain stem, and one deep in the center. This confirmed her NF1 diagnosis. Doctors conducted a brain biopsy on Harper the beginning of April 2019. Results showed the tumor was active and growing- not a normal finding for an NF tumor. The active tumor has been treated with weekly chemo to try and shrink it and stop it from growing. Radiation causes NF tumors to grow and removing it is not an option because of the size and location. Unfortunately, all NF cases are different and affect people in different ways. This makes her journey one that is unclear. Harper wears glasses to help with her vision loss, receives speech and physical therapy services, and visits her heart specialist to monitor her mild heart defect. Harper had a port put in her chest and has been completing weekly chemotherapy since April 2019. She has a MRI to monitor the tumors every 3 months and the treatment type and duration is dependent on results. The goal is to get the tumors stable, and to see stable or improved vision. Harper has dealt with a lot this past year but she is one tough little girl! Harper has had many ups and downs and unexpected side effects, but she does it all with a smile on her face. She reminds us all of how strong we can be! #HealingHarper #HarperStrong #IKnowAFighter
Harper loves to go to the doctor! She gets excited to go to the ‘doc doc’ and screams with joy when they pass the hospital. 🙂 That is a true testament to the treatment she receives. The doctors, nurses, and staff are all very welcoming and caring. They show true compassion for Harper and her family. They are helpful and kind and go out of their way to make sure Harper’s parents understand everything. Harper and her family are excited to participate in Pedal the Cause to show their thanks and to raise awareness for all of the special children and families they have met over the last year. They are blessed that people are raising money for research and to help all of these children!
Jackson (Jax) loves video games, Legos, Chevy trucks and cars, Fortnite, as well as exploring woods and streams. He is a big fan of Youtuber – Unspeakable.
Jax had swollen lymph nodes in early May of 2019. His pediatrician thought he had strep throat and put him on a 10 day antibiotic. When that was over and no changes happened, he sent us to St. Louis Children’s Hospital for a visit with an oncologist. A biopsy at the end of May showed that he has T-cell ALL Leukemia.
Jax has been a solid trooper through everything – from when they put it his port, to the occasional 101+ fevers that put him in the hospital for 8-10 days, to losing his hair, growing it back, and losing it again. His parents and 17 year old sister have struggled occasionally throughout the last year with missing school and work to take care of Jackson, but all in all they are in a good spirits. Jackson usually hits numbers with minor delays and seems to be responding well to the medicines for the most part. His schoolmates and teachers have been wonderfully supportive and watch out for Jax when he can make it to school.
Jax and his family really have been fortunate through everything – from catching it early to good response to meds, to support at work and school. His doctors and nurses and ALL staff at STL Children’s have been absolutely phenomenal and they are blessed to be so close to a great hospital. STL Children’s doctors, nurses, and all support staff are incredibly caring and supportive. Jax and his family feel it is an honor to be asked to help raise funds and awareness for this great hospital.
Kailey loves listening to audio books. She is a huge fan of Tom Petty, the Beatles, Junie B. Jones, the Cardinals and the Blues.
When Kailey was 2 years old she was diagnosed with Glioblastoma (a stage 4 Brain Tumor). She has undergone chemotherapy, radiation, and multiple brain surgeries at St. Louis Children’s Hospital. Kailey is now 6 years old and her tumor still remains. She currently is on a new clinical trial and doing very well. She continues as always to fight with a smile and spunky attitude.
Unfortunately Kailey has lost most of her vision due to her tumor. She is learning to walk with a white cane and is learning braille in school. Even though Kailey has faced many challenges she is always happy and smiling. She is the life of the party, loves talking to people, and doesn’t know a stranger. Kailey and her family have spent much time at Siteman Kids at St. Louis Children’s Hospital. Cancer can be a lonely thing for a family to go through, but the smiling and familiar faces have somehow helped them feel not so alone. Siteman Kids at St. Louis Children’s Hospital is somewhere they go to see their friends, as Kailey says. They have made many friends at Siteman and are blessed to have received their care.
Kailey and her family love Pedal the Cause and it has become one of their favorite weekends. They look forward to it each year! Kailey and her brother Reid now cheer on the sidelines as their mom and dad ride in it each year now. 🙂 Kailey is always her parents’ inspiration to ride.
Miles loves Legos, soccer, and playing outside. He is a huge fan of Scooby Doo.
Miles was diagnosed in 2016 with Acute Lymphoblastic Lymphoma. He went through the 3 years of treatment and rang the bell on July 31st, 2019. On September 13, 2019, his family found out Miles relapsed so he was hospitalized and went through re-induction for 30 days. Unfortunately he failed re-induction and on December 10, 2019 he did CAR-T therapy. This did put him into remission, but unfortunately the CAR-T cells only stayed in his body 2 months and they need to be in there 6 months to avoid relapse.
On March 10, 2020 Miles received a bone marrow transplant and will be inpatient for 30 days or until his labs show his numbers improving. This has been really devastating for Miles and his family. Miles and his mom have been gone on and off since September. Miles’ siblings are suffering, as they have only had one parent in their life and they miss their brother. Miles’ family is hopeful that he will finally be cured, but their lives will be full of appointments and check-ups for years to come.
Miles and his family love Siteman Kids at St. Louis Children’s hospital. The doctors, nurses, and all the staff are amazing; they truly care for the kids. Miles and his family participate in Pedal the Cause because it raises so much money for research, which is important in finding a cure. It’s so amazing how many people volunteer for Pedal the Cause to raise money and awareness.
Mohammad loves basketball, dancing, painting, fortnite and the St. Louis Cardinals!
Mohammad was feeling ill for awhile, and he was taken back and forth several times to the pediatrician and to the hospital. Mohammad was finally diagnosed on November 2, 2019 after he had an urgent MRI done which showed the tumor. That’s when their lives changed forever. It felt like it wasn’t true; everything just went silent. Mohammad was admitted to the PICU for 7 days. He had surgery to remove the tumor, followed by his treatment plan, which consisted of 6 weeks of high dose radiation and 6 cycles of high dose chemotherapy. Mohammad now has balance issues after surgery and chemotherapy, so he is unable to do many things; even walking is a struggle sometimes. His family feels their lives will never be the same; their lives have really changed in every single way. They will always worry about his next scan and hope it will be free of disease. It was so hard seeing Mohammad go through all of this but he has truly showed his family what a brave warrior he is. Mohammad’s family wishes him and all cancer warriors a long and health life! They all deserve the best.
Mohammad and his family had a great experience overall at Siteman Kids at St. Louis Children’s Hospital. The team and staff were all so amazing and were so helpful. They felt as comfortable as they could be in the most difficult time of their lives!
Natalee loves swimming, fishing, and spending time with family and friends. She is a big fan of the Cardinals, Blues, and Fox Theater.
Natalee was diagnosed with tuberous sclerosis and a polycyctic brain tumor in November 2015. She has had an MRI guided laser ablation, 8 months of IV chemo, and is currently on a 24 month regimen of oral chemo. Natalee experienced decreased movement of her right hand and leg due to the location of the tumor. She does PT/OT 5 days a week and is currently still going to school full time. She is not able to do sports and other activities her classmates are able to do which is hard for her at times. Natalee is a very compassionate and empathetic of others because of all she has gone through. Her older sisters are very supportive and encourage her to keep working hard.
Natalee was also on treatment last year and participated with PTC. She fundraised and it was a great way for her to be able to give back! It was really a good experience for her entire family and helped Natalee feel purpose in her journey. Natalee’s MRI guided laser ablation received funding from PTC (according to the research page!) so this organization is really important to Natalee and her family. Natalee was in a wheelchair when she had the surgery and without it she would not be the independent girl she is today! Natalee and her family are so thankful for SLCH, Siteman Kids and PTC for all the care she has received during the last 4 1/2 years. They live over 2 hours away which seems like a long drive but they know it is nothing compared to what some families travel to get treatment! Natalee has the best Neurosurgeon Dr. Limbrick and best oncologist Dr. Gauvain!
Paige loves riding her bike, dancing, and sports! She is a huge fan of Paw Patrol, Dora the Explorer, Cinderella, Blaze and the Monster Machines, Bubble Guppies, Team Umizoomi and Peppa Pig.
Paige was diagnosed in December and it has been a whirlwind ever since. She finished treatment in late February and is currently in remission. The future looks bright for Paige!
The nurses and doctors at the clinic were amazing. Paige and her family owe everything to them. They would like to participate in Pedal the Cause to have something positive to involve Paige in; she loves to be outside and active!
Ryan loves playing and watching baseball, as well as going to the lake. He is a big fan of the St. Louis Cardinals, St. Louis Blues, and Green Bay Packers.
Ryan was diagnosed with ALL on June 1, 2019. It turned his life upside down, but with the support of his family, friends, the St. Louis Children’s Hospital Oncology Team and his Pedal the Cause Team: Beer and Salsa, he is battling back. Ryan is in the maintenance phase of his treatment and now has many more good days than bad. He is positive about his future and plans to beat this and return to playing sports. Ryan enjoys playing baseball and has been working hard to get back on the field this summer! The team at Siteman Kids at St. Louis Children’s Hospital has been amazing. If any child has to go through this, this is the team you want fighting alongside you. Ryan’s team is knowledgeable, patient, kind and understanding.
Savanna loves singing, reading, playing with her dog, painting, drawing, baking and cooking. She is a fan of the Backstreet Boys, Evanna Lynch, and the Cardinals. Savanna and her family’s lives changed the moment they stepped into the ER at Children’s Hospital shortly before midnight on 1/26/2019. When asked where they wanted Savanna to receive treatment, without hesitation, they chose St. Louis Children’s Hospital. From that very moment, they have felt the love, care, and fight for Savanna and her battle with cancer. Savanna and her family have no regrets; they are forever grateful for the complete comfort and healing SLCH provides.
On 7/31/19, Savanna received a bone marrow transplant. Today, she remains cancer free. Her donor has since been introduced to their family, and they are so ecstatic for this new addition. Savanna and her family became closer because of this disease, and they continue to grow together, but with a much different outlook on the appreciation of life. Savanna wants to be an advocate for children who experience hurts, illnesses, and diseases by becoming a nurse one day.
The entire staff at St. Louis Children’s Hospital, from the cafeteria workers to Savanna’s transplant doctor, has been nothing short of angels and blessings. Savanna and her family had all of their needs met; nothing left to want or ask for. St. Louis Children’s Hospital consistently and constantly provide the absolute highest level of care, compassion and concern for Savanna.
Sydni loves art, coloring, & watching movies. She is a huge fan of the St. Louis Cardinals, St. Louis Blues, and the Kansas City Chiefs. Sydni was diagnosed May 2018 & finished treatment June 2019. She relapsed 3 months later. Sydni has continued to fight since then and has shown great strength and courage. St. Louis Children’s Hospital has been a blessing to Sydni and her family. They wouldn’t want to go anywhere else.
Tyrayah loves painting, art, listening to music and watching movies. She is a fan of Lilo & Stitch – Stitch is her favorite! July 27, 2019 is a day Tyrayah and her family will never forget. Tyrayah started complaining of chest pains and was referred to St. Louis Children’s Hospital by their local ER to run tests. On August 1, 2019, at 10:26am, they received the news that there was a softball size mass in Tyrayah’s chest, along with a blood clot in her neck. Chemo was started right away. That was the first time Tyrayah’s parents felt so helpless.
Tyrayah is so loved by many; they have prayer chains everywhere. She is a fighter. Chemo is so rough on her; she has spent almost an entire year in the hospital. A rare side effect of the chemo is nerve damage, and on May 4, Tyrayah lost all mobility from the neck down. Now Tyrayah is starting neurotherapy, so she will be able to walk again hopefully. Tyrayah and her family take it one day at a time. She’s going to do big things. This is making her stronger.
Siteman Kids has been awesome – such friendly people and staff. Tyrayah and her family believe there will be a cure someday if we keep working to find it.