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!
Davey really is a warrior. Since diagnosis, the hospital has become “normal” for her. She is meeting her milestones in and out of the hospital! She is learning new words every day. She loves her iPad and watching Frozen and signing along to Let it go and Baby shark.
Davey was diagnosed with stage 4 High-Risk Neuroblastoma on November 4th of 2021. Before her diagnosis, she had a distended belly, night sweats, and a skin nodule.
Davey has had rounds of chemo, and abdominal surgery for tumor resection. She will receive Immunotherapy and radiation next.
Cancer has changed our lives significantly, but we are lucky that Davey has no current limitations due to her diagnosis and treatment.
Thatcher is a very outgoing and social seven-year-old boy. He loves learning and school and enjoys math and science the most. He has many aspirations for his future, including being a chef and dad when he grows up. He has many hobbies, including performing magic tricks, jokes, and pranks, and performing with the local theater program.
Thatcher was diagnosed with Neuroblastoma in September of 2019. Before his diagnosis, he was having stomach pain and random bouts of vomiting for almost exactly a year before his main tumor was found during an abdominal ultrasound. We took him to urgent care multiple times during that year where they performed chest X-rays and said he was just constipated. The gastroenterologist only looked at Thatcher’s upper digestive tract. Finally, an ultrasound was ordered by his pediatrician and the ultrasound discovered a large mass around his adrenal gland. We were sent to St. Jude Children’s Research Hospital where he was officially diagnosed with stage 4 high-risk Neuroblastoma.
Thatcher has had 2 double lumen power Hickman central line placement surgeries (the first one had a blood stream infection), 5 rounds of chemotherapy, antibody treatment, a 10 hour tumor resection surgery (removing >95% tumor, multiple lymph nodes, and left adrenal gland). He had an additional 2 rounds of high-dose chemotherapy, 2 autologous stem cell transplants, 12 doses of proton radiation, 2 ICU stays, 1 emergency heart surgery placing a pericardial window, 6 rounds of immunotherapy, 4 bone marrow aspirations, countless blood transfusions and units of platelets, and 150+ injections.
Side effects caused by treatment include pulmonary hypertension, pericardial effusion, high blood pressure, renal hypoperfusion, metabolic acidosis, hyperkalemia, stage 2 chronic kidney disease, prolonged anemia, recurrent C. difficile, shingles, required NG supplemental feeds and TPN, permanent grade 3 ototoxicity hearing loss, and hair loss.
Throughout treatment, Thatcher’s diagnosis brought many challenges. Lindsay (Thatcher’s mom) had to take leave from teaching to become Thatcher’s full-time caregiver in Memphis. Thatcher’s little brother, Gideon was only 19 mos. old when Thatcher was diagnosed. His routine was turned upside down. Kendal, Thatcher’s dad worked remotely from Memphis every other week and traveled home to Nixa, MO to work on the opposite weeks. The pandemic began between Thatcher’s two stem cell transplants which made what normalcy we had as a family more difficult to maintain.
Clementine is the most positive little rule follower with a slight side of sass! She likes order, routine, and being prepared. Her moves are methodical. She loves all the colors of the rainbow but mostly red and GLITTER! She’s smart and kind and naturally “leads”. She enjoys science experiments, arts and crafts, tiny dolls, and toys. She can’t wait to get married and be a mommy one day.
Clementine was diagnosed with Neuroblastoma one week after her 3rd birthday on Feb 20, 2018. She had a normal check-up with her pediatrician and she was growing and learning perfectly! One afternoon she got a fever and a belly ache. We gave her Tylenol and the fever didn’t go down. We took her to Phoenix Children’s Hospital where they told us that night our baby had cancer.
Clementine started treatment in AZ. When we learned of better treatment options we traveled back and forth to Memorial Sloan Kettering Cancer Center in NY. We then moved to Michigan where she is currently finishing up a trial medication that she’s been on for the last 2 years. She has had surgeries, chemotherapy, radiation, and immunotherapy and has been in trials and studies since the very beginning. We were lucky enough to have supportive family and friends to help but this has and still does take a toll on the entire family.
Clementine is a happy, energetic 7-year-old but cancer treatment hasn’t been without its challenges. She wears hearing aids due to the chemotherapy she received and she has permanent lung tissue damage and scarring. She has a port on top of her head where they administered medication directly into her brain, she has scars and tattoos on her body from radiation and procedures and lasting endocrine and hormonal changes that we are still learning about.
Cancer has definitely changed our lives. We had to put a wall up in our living room to separate our immunocompromised baby from our growing, curious, healthy baby. We didn’t visit playgrounds or have playdates for months. We would have to rely on the kindness of strangers to watch our healthy babies when Clementine had to suddenly go to the hospital. My husband who is an airplane and powerplant mechanic lost his job and had to learn on the fly how to be a nurse and stay-at-home caregiver.
There were times I wasn’t sure when this day would come. When would we finally see the other side of all this? I can look at pictures and distinctly remember, “Before Cancer” yet it also feels like a lifetime ago, a different life. I would like to commemorate this time in our lives and close the chapter on this part of Clementine’s story. She fought so hard and so did our entire family and we’re finally HERE!
Ivy is 3 years old and has the best big sister and little brother, who she loves so much. She is our sassy child – she knows what she wants and when she wants it and she isn’t afraid to tell you no. She loves her big sister and playing with her. She loves bubbles, playing outside, and loves the water. She is a big fan of Minnie Mouse and Blues Clues and she is a daddy’s girl through and through.
Ivy was diagnosed with Neuroblastoma in March of 2021. In January of that same year, Ivy started shaking constantly. It was like a consistent tremor that never stopped. She started to lose her ability to walk and talk and couldn’t even look at us. Her eyes were constantly moving, she was vomiting 10-15 times a day and we just didn’t understand. We were sent for scans but they found nothing and put her in PT/OT. While that helped a little, something still wasn’t right. We went for follow-up scans in March and that’s when they called and said they found a mass. We found out the next day she had something called Opsoclonus-myoclonus syndrome which is an inflammatory neurological disorder. OMS is characterized by associated ocular, motor, behavioral, sleep, and language disturbances. She was also diagnosed with Neuroblastoma.
Once the OMS was treated, Ivy stopped shaking, started talking, and began running and walking again. She then started cancer treatment; Ivy has had 7 rounds of chemo, 7 surgeries, tumor removal, 12 days of radiation, 3 stem cell transplants, and is currently in immunotherapy.
Cancer has changed so much in our lives. I was 6 months pregnant when Ivy was diagnosed. We also have a 7-year-old daughter. Every time Ivy has to go to the hospital, my oldest has to stay with my mom because of my husband’s work schedule and he has to take our almost 1-year-old to a babysitter during the day. I spend most of the time in the hospital with Ivy and take her to and from appointments which involve long commutes.
Ivy has end-of-treatment scans at the end of October and is set to ring the bell at the beginning of November! Ivy continues to blow us away with how strong and brave she has been through all of this and never lets anyone forget she’s got this!
