Azalea is a sweet funny little girl. She loves dancing, sparkles, girly colors anything fun. She is a girly girl. She loves animals, her siblings, and the beach. No matter what obstacles she’s faced with she always has a smile on her face and keeps fighting.
She was diagnosed on 3/7/2017 at age two and relapsed on 10/19/18 just before her fourth birthday. She has currently been NED for three years and is off of active treatment for one. Before diagnosis, her stomach was distended, she was having terrible night sweats, tired a lot, anemic, and on and off throwing up.
Azalea has been through nine rounds of chemotherapy, twelve-hour surgery to remove her tumor, radiation to her abdomen and right arm, ten rounds of immunotherapy, and a Neuroblastoma vaccine trial twice. She’s also had countless central line survives, biopsies, scans, and blood transfusions.
She brings hope to a lot of people as she is a survivor. She truly is a miracle and we are so blessed to have her.
Addison was diagnosed with Neuroblastoma on Nov. 1, 2006, at the age of 5 months old. She had a fever in the first part of October. The doctor said it was probably a virus. Her stomach started to become hard and she was uncomfortable after eating. She had a developmental screening on Nov. 1 at which the doctor told us her liver was enlarged and needed further testing. A tumor was discovered during an ultrasound.
She had six rounds of chemo, stem cell transplant, and radiation treatment. She has had frequent checkups and appointments. She has hearing issues and growth issues.
Addison has lost a twin sister who also was diagnosed with Neuroblastoma.
Addison will be a senior this fall. She plans on attending college to earn a degree in psychology and plans to be an advocate for children going through similar issues.
Mason is a delight. He is always smiling and playing. He loves slinkies and will probably have one in his pictures. He’s very active despite his challenges.
Mason was diagnosed with High Risk Neuroblastoma on October 25th 2019. Before he was diagnosed, he had stopped walking. Mason is nonverbal and autistic so he was unable to tell us what was wrong. He just stopped bearing weight on his legs.
He went through frontline treatment that consisted of chemotherapies, resection surgery, two bone marrow transplants, 12 rounds of radiation, 6 rounds of immunotherapy and then some months of maintenance therapy. He then relapsed and had CAR T therapy, more chemotherapy, immunotherapy, radiation, and two MIBG therapies. we struggle financially because mom had to quit her job to care for Mason so now we live on one income. Cancer has changed our lives in many way. We will never be the same.
We don’t know how much longer we have with Mason. We are running out of options for treatment and struggle getting hospitals to do certain treatments because of the autism. There are a lot of preconceived notions about what he can and can’t do. We had to fight to get a hospital to give him the MIBG therapies but he rose to the occasion and did both with no issues. No one believed he could.
We are heartbroken to report that Mason recently passed away. We are sending our love to Mason and his family. Thank you for allowing us to share his story. His mom was kind enough to share the following statement with us.
Mason Davis was a fifth-grade superhero who had a heart of gold and a smile that would light up a room. Every person who met Mason would leave him beaming and experiencing pure happiness. His energy overflowed with genuine love and affection. He had the strength of four men and that’s no exaggeration, because no matter the depths of the treatments his disease required, he would pull himself through with a smile, and a giggle. No matter the fear or the pain, Mason had a squeeze and a hug waiting for you when it was over. Throughout the journey, Mason has been blessed with so much but above all, he blessed so many with his strength, his joy, his perseverance, and his love. We are so thankful we got to experience Mason these ten years and that we were granted the opportunity to share him with so many.
McKay is a video game connoisseur, as he has a lot of time on his hands with treatments and not always being able to leave home. He love playing Zelda, Mario games, Hollow Knight, and Splatoon, among other games. He also loves to play board games with his siblings. When he has time to just sit and talk with his siblings, his personality comes out and he can get silly. Those are my favorite moments, because we don’t get to see that all the time. He loves soccer and baseball and riding bikes, but those activities have taken a backseat for now.
McKay was diagnosed with stage 4 neuroblastoma in Feb 2014, when he was 3. After undergoing 17 months of grueling treatment, he attained NED (no evidence of disease) in July 2015. He loved getting back to “normal” kid life, but unfortunately, after 5 1/2 years of being NED, the cancer came back with widespread, metastatic disease in Feb 2021 when he was 10, seven years to the exact weekend as his original diagnosis. He’s been fighting relapse nonstop since then, and had a huge setback in January 2023. He’s awaiting the opening of a first-in-human trial, in hopes of being able to kick the cancer down with a treatment that his body hasn’t yet seen and will hopefully be effective.
Prior to his diagnosis, over a 3.5 week period, he kept having “off” things happen, and it wasn’t until I took him to the doctor for the 4th time in that time span that it was discovered that he had cancer.
McKay’s treatments have been extensive. Frontline treatment included 5 rounds of chemo, stem cell harvest, tumor resection surgery, MIBG therapy, stem cell transplant, 14 rounds of radiation, immunotherapy, and 2 years of maintenance drugs. Relapse treatment has included 21 cycles of chemo/immunotherapy, 28 cycles of radiation, 2 rounds of MIGB therapy, 3 cycles of oral chemo, and now awaiting a CAR-T therapy trial to open. Due to his treatments, McKay has bilateral hearing loss, and he is small and kind of fragile, so being active like he used to be is difficult.
The family dynamics of both original diagnosis and relapse have been huge. We always focus on “living in the now”, because tomorrow is never promised. We try and focus on our other kids’ strengths and passions so they know how important they are in the shadow of cancer, but know that that isn’t always possible.
McKay is a special boy that rarely, if ever, complains about everything he has to go through. He may be quiet at times, but you know if he freely talks to you, you are someone special, too.
Norah is a born performer! She loves to sing and dance and act. She loves Disney princesses and wants to be an astronaut when she grows up. Norah is quick to laugh and she has an infectious laugh. She also likes to draw and read.
Norah was diagnosed with Neuroblastoma in 2015 – she was only 2 years and 7 months old. Norah was very young and couldn’t tell us what was wrong. She just kept crying, wasn’t sleeping, and barely ate. Initially, we were told she had an ear infection…then her molars were coming in…then she was constipated. It took about 3 weeks to realize none of these were the cause of her discomfort. It was cancer all along.
Norah has relapsed twice so she has been through a lot; Chemo, radiation, and immunotherapy. She has spent a lot of time inpatient whether for treatment or treatment-related side effects. We travel to NYC to receive treatment from the best neuroblastoma specialists in the world. Our family of 4 has been split more often than I can count. Due to her treatment, Norah wears bilateral hearing aids but otherwise has no limitations.
With traveling from Kansas to New York City since 2016, our family has been apart a lot. It’s difficult when your heart lives in two places. My husband and I have always said that in the future the only time we will go to NYC is to see Norah perform on Broadway.
Cancer has changed everything. We love deeper, laugh easier, hold each other closer, and live more in the moment.
Karsen is shy at first glance and then a wild child at second glance. He’s 100% boy and loves everything from Hot Wheels to video games to riding bikes. He’s full of life and loves hard.
Karsen was diagnosed with stage IV high risk Neuroblastoma in June 2019 at 4 1/2 years old. He didn’t really have any noticeable symptoms until 4 days prior to diagnosis when he began complaining of a mild tummy ache.
He has had chemotherapy, surgery, radiation, immunotherapy, and maintenance therapy, and only has one kidney now.
We have been through so much and are just grateful for each day. Each day is a true blessing!
