Meet Daniel – Neuroblastoma
Daniel is funny and he loves the Spider-Man and Cars movies.
This is Daniel’s second battle with Nueroblastoma. He was diagnosed in September of 2020.
Hope Session by Angela Eller Photography | Facebook | Instagram
Meet Thatcher – Neuroblastoma
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.
Hope Session by Terra Fondriest Photography | Instagram
Meet Clementine – Neuroblastoma
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!
Hope Session by Nicole Martin Photography | Facebook
Meet Ivy – Neuroblastoma
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!
Hope Session by Erin Leigh Photo | Instagram | Facebook
Meet Jaylene – Neuroblastoma
Jaylene loves painting, putting makeup on, and playing fun games. She loves playing tag and being chased. She also loves anyone spending quality time with her. Jaylene is the baby of the family, the only girl out of 3 boys. Her favorite color is pink.
Our beautiful daughter was diagnosed with Neuroblastoma 8 days after she turned 2. We noticed a lump in her belly the day we were having dinner for my son’s 4th birthday.
Jaylene has had 5 sessions of chemo, resection surgery, biopsies, fertility preservation surgery, and g tube placement. She just recently finished her 2nd stem cell transplant.
Jaylene’s cancer diagnosis changed our life forever. Now we cherish every second and value our family more.
Hope Session by Loch & Key Photography | Facebook | Instagram
Meet Addilinn – Neuroblastoma
Addi was a very small baby. The doctor always said she had failure to thrive and said she couldn’t poop. After fighting with the doctor for a treatment plan for that, Addi then begin to stop eating, She got nose bleeds constantly and stopped walking. I took her to the children’s ER and they said there were signs of infection in her blood. This led them into thinking she had arthritis. We saw a specialist for that and that doctor said she did not have arthritis. So we were back at square one.
They ended up discharging her and said we just needed to follow up with her pediatrician. Then Addi had a big lump show up on her neck. I took her to the pediatrician who then told us she just had a swollen lymph node and sent her home. She just kept getting worse and worse as the days went by. We took her to see the oncology team and they did blood work and her CBC came back abnormal. They tested her for different types of blood cancers and those came back negative. We were back to square one, once again.
Two weeks later, Addi wouldn’t wake up. I rushed her to the doctor’s office, where she saw a new pediatrician, and she walked in, looked at Addi, and said “I will be right back. I’m calling the hospital and letting them know you are on your way, Don’t leave until you have answers.” That’s when our world got dark and scary.
We got to the ER and they did an X-ray where they saw an abnormal shadow. Then they did a ct scan and that’s where they saw all Addi’s masses. They admitted her right away and ran more tests. A few days later, they confirmed our worst nightmare, our sweet 2-year-old has stage 4 high-risk neuroblastoma.
They proceeded to tell us that there is a high chance we would lose our sweet girl. They started treatment to give her a fighting chance. The nurse told us that she was the worst case they’ve seen.
Addi went through 2 1/2 years of treatment. She beat all the odds. After two years of fighting with the pediatrician to figure out what was wrong with her, the doctor misdiagnosed her, and not caring if Addi was getting better – we got our baby girl on the right track.
Addi still has 5 masses left and is currently being monitored. She is thriving and doing great!
In October 2020, I had another baby girl and she got diagnosed with neuroblastoma as well. Thankfully they were able to do surgery to remove hers and she’s in remission. Addi unfortunately isn’t in remission yet.
Hope session by Erica Finnan Photography | Facebook | Instagram