Rocky is a very shy and timid teenager. He loves video games and Micheal Jackson.
Before he was diagnosed, Rocky experienced some pain in his chest. He was only 13 when he was diagnosed with T-cell Acute Lymphoblastic Leukemia on March 10, 2020. Three days later, all of the schools were shut down because of the pandemic. It was a horrible time. We got stuck in the hospital for over 30 days and he spent his 14th bday in the hospital. He had a lot of side effects and a lot of different doctors but, Rocky is a rockstar and he pushed through. Now, after 2.4 years of treatment, he will ring the bell on July 27th. FIGHTLIKEROCKY!!
He had 2.4 years of treatment which included chemo, lumbar punctures, blood transfusions, scans, and physical therapy. His diagnosis affected his mental status as well. He sees over 8 specialists that manage his ongoing healthcare. He also has focus issues and can’t walk for a long period of time. We didn’t have a lot of support from family and friends so it was just his dad, his brother, and rocky and I pushing through. Your life is never the same after your child is diagnosed with cancer.
Rocky is a fighter!! His treatment has ended but the side effects don’t stop. He actually has 3 more surgeries in the Fall. He has a long road to recovery.
Finn loves the colors red and dark green! He loves dinosaurs, especially carnivores! He also loves anything with a motor, planes, helicopters, boats, cars, and trucks. He loves to “wrestle” with dad and Bubba. He loves to get tickled and be chased.
Finn was diagnosed with B-cell Acute Lymphoblastic Leukemia in April of 2020. Before diagnosis, he had night terrors and sweating, where he would wake up screaming but couldn’t be touched or consoled. He was pale, with dark circles under his eyes, and red spots on his body. Eventually, he got big bruises on the tops of his feet and started to limp. On the last day before diagnosis, he had a low-grade fever and was lethargic.
He is in occupational therapy, physical therapy, and speech therapy and has some hearing loss. Mom has stayed home to take care of Finn since diagnosis and we delayed starting kindergarten until he is six years old.
We are an active duty military family that had just moved from South Carolina to Guam in February 2020. In April mom brought Finn to the emergency room. Less than 24 hours later our family was on an Air Force plane to Honolulu for diagnosis and treatment. Guam couldn’t treat him. In Honolulu, Finn was diagnosed and started treatment. His doctors wanted him to stay in Hawaii because of the uncertainty of the pandemic and flying commercially. So, we lived in Hawaii for a year in complete isolation. After a year of treatment in Hawaii, we were transferred to Connecticut to continue treatment. This move also got us closer to family.
Miller is strong, stubborn, and silly all at once. His smile lights up a room, and his laughter is contagious. His favorite toy is his little giraffe, Squacky. She goes with him everywhere and has been with him since the day he was born. He loves Minions, Trolls, and Hotel Transylvania. He loves Nerf guns, blowing bubbles, and swimming. Most of all, he loves his two-year-old golden retriever, Luna.
Miller was diagnosed with leukemia in January 2021, less than 3 weeks after his eleventh birthday. Before diagnosis, Miller complained of stomach pain. We spent 8 hours in the ER having tests run. They checked blood and urine, did an ultrasound, physical exam, and finally a CT scan. They found nothing wrong and sent us home. We followed up with our pediatrician and an orthopedic specialist when he complained of shoulder and back pain. Our last stop was the hematology/oncology clinic, where they ran bloodwork for the third time in one week. We were told they believed he had leukemia and to go home and pack a bag immediately. He was checked in to Children’s Medical Center that same night, and preparations were made to begin chemo the very next day.
Miller had a bone marrow aspiration to confirm his diagnosis and surgery to place a port within 24 hours of being admitted. He has had many spinal taps in which chemo is injected into his cerebrospinal fluid. He has received chemo, steroids, antibiotics, and several transfusions. One of us has always been by his side. The company I used to work for closed its doors in February 2021, so we were able to divide and conquer, taking care of Miller and his younger brother, Austin. We spent a lot of the year apart, and FaceTime became a regular part of our routine. Without any family to help us, we have had to rely on friends, and we are grateful for the ones who have stood by us.
Miller has Down syndrome, so his treatment has been very carefully monitored since his very first admission. Kids with Down syndrome process chemo differently and are more likely to develop infections. He spent 231 days in the hospital in 2021 and finally finished front-line treatment in January 2022. He finished fourth grade virtually and spent most of the fifth grade in the homebound program. He returned to school in March 2022 and was able to attend his fifth-grade completion celebration with his peers.
I went back to work nine months into treatment. It was hard because Miller was still in the hospital, and I needed to be home when Austin was not in school. Austin has struggled to deal with his brother’s diagnosis and often felt neglected as Miller needed so much attention. I felt extremely guilty and overwhelmed by the diagnosis, and there were days I could barely function. Miller’s dad had to stop working almost completely for 2021. Now we are in maintenance, and everyone is home together. We cherish every moment and hope for a bright future when treatment is complete in 2023.
Eleanor is Little Miss Sunshine. Her voice, her smile the way she cares and helps everyone around her. She talks about maybe being a nurse when she grows up. She is enjoying therapeutic horseback riding and dance, she loves books and plays. She plays cello and sings, loves art, and will try to be a part of life as much as possible. She is famous for saying “today was the best day ever.” And we all try to live like that and take not one moment for granted with her and each other.
Eleanor was diagnosed with high-risk Infant Acute Lymphoblastic Leukemia at 6 months old and spent most of the next 2 + years of the beginning of her life in the hospital in Buffalo, NY fighting for it. She has been surviving against all odds since then. She continues to face many uphill battles and long-term late side effects because of the harsh treatments.
Before she was diagnosed, she had begun sleeping more, feeding less, and was first thought to have a double ear infection. The morning she was diagnosed, she never woke up from nighttime sleeping.
Her treatment protocol was chemotherapy only. But, she is having neurocognitive functioning problems associated with memory and executive functioning, attention, processing speed, and learning retention resulting from her chemotherapies. Eleanor is considered at high risk for cardiomyopathy, diabetes, hypertension, heart disease, osteoporosis, osteopenia, avascular necrosis, hemorrhagic cystitis, and secondary malignancies, including leukemias and melanomas.
We all struggle with PTSD, anxiety, depression, financial issues, and security. But we all look out for each other, we are very protective of each other, we are a family of four and it’s been mostly just us sticking together the best we know how trying to keep afloat.
This September 2nd we will be celebrating her and her 10th year of surviving cancer as we look back on this mountain we have climbed together.
Paisley loves crafts, music, rainbows, glitter, princesses, and unicorns. She used to obsess over her hair but after losing it, she now obsesses over her nails instead. She loves anything pink and she just started kindergarten and loves to learn!
Paisley was diagnosed with Acute Lymphoblastic Leukemia (A.L.L.) two months before her 5th birthday in June 2020. She began experiencing leg pain and trouble sleeping, and would often wake up crying, complaining of her back hurting. We took her to see her orthopedic doctor and an x-ray revealed that she had fractures in each of her L1-L4 vertebrae. Paisley was born with a brittle bone disease called osteogenesis imperfecta, in addition to being diagnosed with Juvenile Rheumatoid Arthritis around her 2nd birthday, so these symptoms, while troubling, didn’t stand out as cancer warning signs.
Around Memorial Day of 2020, she developed a cough and a fever and was diagnosed with pneumonia and was given medication. The medication didn’t help and her pneumonia persisted for weeks, as did the fever. Finally, on June 15th, the doctors ordered a CBC and within an hour of the labs being drawn, we received a call telling us we needed to bring Paisley into the hospital for admittance into the Oncology unit. Three days later she was officially diagnosed with A.L.L.
Paisley had had many inpatient and outpatient chemo treatments via her port, iv, spinal lumbar punctures, and oral. Her struggles are numerous ad she is 100% physically dependent on us. Her bone fragility has continued to worsen and she is very autoimmune compromised.
To her parents, this was by far the most terrifying ordeal of their lives. To Paisley, this was just another obstacle that she wouldn’t let stand in her way of living life to the fullest. We also have 2 younger children who were 4 months and 2 yrs at the time. Between cancer and covid, we did not go out and spent a lot of time separated due to hospital stays. I, her mom, went from working full-time to part-time in order to take her to her chemotherapy treatments
Within 30 days Paisley’s cancer was in remission and she completed 26 months of chemotherapy treatment 2 days after her 7th birthday. There is still a long road ahead and Paisley continues to fight battles on a daily basis, but her spirit is an inspiration to all of us.
Joy is a silly, sweet, and smart little girl. She loves to dance and listen to music. She can be shy at first in new social situations but will warm up and become your best friend. She loves other kids, especially her age. Her favorite things are princesses, SpongeBob, tea parties, and playing outside.
Shortly after her third birthday, Joy was diagnosed with Acute Lymphoblastic Leukemia in November of 2020. She had developed a fever near Halloween. I remember skipping trick-or-treating that year. She visited the pediatrician about five days into the fever and her doctor just thought it was a virus. After 10 days of fighting a fever, we returned to the pediatrician, who ordered blood work. Joy was pale and fatigued. Later that day, results showed that Joy was severely anemic, We were immediately sent to the ER where we were given her official diagnosis of leukemia.
Joy started receiving chemotherapy the day after she was diagnosed. Her treatment will last about 2.5 years. She is currently in maintenance and takes daily oral chemo pills. She visits the hospital every month for labs. Every three months when she has her lumbar puncture, she receives chemo in her spine and port and receives steroids as well. Her treatment will continue until February of 2023.
We face similar struggles as other cancer families: anxiety, the weariness of all of the medication, and watching how cancer treatment has affected Joy’s behavior. All of this has made us stronger in some ways because we didn’t have a choice other than to face this head-on. My sons have raised money for cancer support organizations and are big cheerleaders for their little sister.
