Lydia was diagnosed with acute lymphoblastic leukemia (ALL) in May 2011, and she completed treatment in July 2013. Lydia is celebrating her ten-year end-of-treatment anniversary this year, and she thought a photo shoot would be a great way to remember the occasion!
Lydia was only two when she was diagnosed with leukemia. She was not able to verbalize that she did not feel good. She got fussy and always wanted to sit on Mom’s lap. Then she kept getting a fever. We finally took her to the doctor thinking she might have an ear infection, but her lab work showed otherwise.
During treatment, Lydia’s cancer diagnosis significantly changed our family life. Due to the risk of infection, travel and other activities outside of the home were limited. There were many visits to the oncology clinic for infusion treatments, emergency room visits if Lydia’s temperature exceeded a certain level, and inpatient hospital stays. Lydia’s twin sister and older brother also saw their normal routines disrupted during treatment. Throughout her treatment, Lydia inspired many others who have seen her spirit, courage, and perseverance. She was an example to us as parents, family, friends, neighbors, and even strangers about how to respond to adversity with a positive attitude.
In the last two years, Lydia has come to better understand and embrace what she has experienced, especially her cancer treatment and its long-term side effects. She has learned to advocate for herself and others. One outlet to inspire others is through her artwork, which allows her to promote awareness of children’s cancer. Lydia is an active participant in Children’s Cancer Connection activities, where she can share her experiences and help others. Lydia recently painted an Adirondack chair with scenes from Camp Heart Connection, which was auctioned off at the annual Children’s Cancer Connection fundraiser. She also has raised over $6,000 this year to support Camp Heart Connection through their Campership Challenge. In the future, Lydia would like to use her passion for art to help children in cancer treatment through art therapy.
Benjamin is a born storyteller. He is happiest when he is in costume acting out a grand adventure. He loves animals and Lego and wants to be a “zoolineer” when he grows up (an engineer that helps animals). He is very social, a loyal friend, and the best big brother in the world.
Our son Benjamin was diagnosed with ALL in February of 2019 at the age of 4. He finished treatment on June 5th, 2022. Before his diagnosis, he experienced a series of illnesses including an ear infection, the flu, and strep throat. One morning he woke up and couldn’t walk due to leg pain. Blood work and additional testing at our children’s hospital eventually led to the diagnosis of ALL. His diagnosis process was long due to his presentation with necrotic bone marrow.
Benjamin underwent the very high-risk protocol due to bone marrow necrosis at diagnosis. This protocol included Frontline chemo over the course of the first year and maintenance chemo for another two and a half after that. His medication was administered orally, via his port, and into his spinal fluid. Our greatest struggle throughout treatment has been the mental/emotional impact. Benjamin suffers from PTSD because of the challenging diagnosis process. This anxiety has affected his daily functioning. We have also been extremely isolated due to the combination of his compromised immune system and Covid. We’ve all struggled greatly with the isolation.
We had just moved to NY when Benjamin was diagnosed, and so we went through the treatment process without friends and family to help. We learned to rely entirely on ourselves and I think our strength as a family unit grew. And of course, we will never take a moment together for granted now that we know how quickly the world can change. We definitely have a sense of both gratitude for Benjamin’s success in treatment and recognition of every day together as a gift.
Benjamin is my hero. His resilience and adaptability continue to amaze me every day.
Rose is a very positive person and has an unrelenting ability to keep moving forward. She almost never complains and is very patient in dealing with her medical challenges. She loves our dog and all things art. She is even working on ways to take photos using her wheelchair joystick as a tripod.
Rose was diagnosed with B-Cell Acute Lymphoblastic Leukemia on July 6th, 2022. Fifteen months before Rose was diagnosed with cancer she became very ill. It’s a long story but in the Spring of 2022 Rose’s GI system began to fail. She became unable to tolerate even feeding tube feedings. In an attempt to help, she had surgery to have a different feeding tube placed. During the surgery she sustained a spinal cord injury and hasn’t been able to sit, stand or walk since. The surgery didn’t work so Rose is fed through IV’s.
In 2022 Rose had major spinal surgery and spent 260 days in five hospitals in five different cities. She came home in December of 2022. In Jul, routine labs showed leukemia. The doctors can’t find a connection between Rose’s other medical issues and the leukemia. On July 6, 2022 Rose was admitted to KU Medical Center. She spent over 11 months in the hospital receiving cancer treatment. She is so thrilled to be home and is bravely facing the next 18 months of cancer therapy while still learning how to live as a power wheelchair user.
Rose spent 11 months in the hospital getting chemo. She had several surgeries and procedures during treatment. Everything was more complicated due to her other medical issues. She had brain surgery to place a port in her brain to get chemo. There were many complications from that surgery. She has battled through many infections and intense headaches from leaking spinal fluid.
Her biggest limitations are related to her spinal cord injury and using a power wheelchair. She has a lot of fatigue and has a hard time being out of bed for long periods of time. She is working to regain stamina but fatigue is a big battle every day.
Our family is very close and having Rose in the hospital was very hard on everyone. Rose says the hardest part of all of this was being apart. Rose spent two birthdays, two Thanksgivings and two Christmases’ in the hospital. Our family is hopeful that in 2024 we will enjoy a holiday meal in a location other than a hospital lobby. Rose’s favorite holiday is July 4. A big goal for 2024 is for her to be home and to be able to enjoy a fireworks display in person.
Cora is so happy and sweet, she loves animals, bubble guppies, and Elmo.
Cora was diagnosed with Leukemia in May of 2023. Prior to her diagnosis, she had fevers and bruising. She is in the consolidation phase of treatment. Total treatment time will include eight months of intensive chemo and then two years of maintenance therapy. Due to her treatments, she is immune compromised.
Cancer has completely changed our lives. I was out of work for a month and a half and away from my older daughter Mariah (10 years old). The girls’ father and I have separated since diagnosis as it was too much for him to handle, unfortunately.
Ryent is a sweet and happy boy. He LOVES sports and physical play. He loves to play catch with our dog, Copper and go to the park. We call him our superman. He also loves Mickey Mouse and Toy Story guys. Ryent has a special blanket “Gaga” that we wrap around him like a cape when he needs a break. He is shy at first but warms up and is your best friend. When we go out in public Ryent is the kid who says hi to the guy sweeping the floor or stocking the bathroom. He always finds the people who look sad and asks “ok?”
Ryent was diagnosed with B Cell Acute Lymphoblastic Leukemia on May 25th, 2021 when he was 15 months old. He had started in a toddler program in March of 2021. At first we thought he was tired from school but we began noticing bruising an immobile child shouldn’t have. He was also pale and extremely fatigued. He hit his head (lightly) on May 24th resulting in a large goose egg that shouldn’t have even bruised and we decided the next day to bring him to the ER at Childrens Minnesota. We could tell the doctor was very concerned right away and they took blood. Forty five minutes later they came in and told us our son had Leukemia.
Ryent has been through many kinds of chemo, both IV and oral. He has had five blood transfusions and three platelet transfusions. He had e coli and c-diff infections along with staph and pneumonia. He has overcome motor skill delays and is working hard to catch up to his peers. We still keep our distance from large gatherings and he is not allowed to go in lakes or petting zoos. He is very curious and will love to explore more post treatment.
We have learned to take every moment in and take nothing for granted. We celebrate every little victory and give praise for even a small win. We appreciate little things and let the negative go. One thing I have said a lot is that if the hardest part of your day is something trivial you are blessed.
Last July we discovered that Ryent also has Noonan’s Syndrome. His fight for his health is long from over as we will be working on those challenges at the end of his treatment on August 5th.
Truman is the sweetest most loving child. He loves his siblings, especially his identical twin brother Liam. He loves to play outside when he can, he loves to ride the tractor on the farm. He loves dogs and cats. He loves Disney cars, Sonic the Hedgehog, and Minions.
Truman was diagnosed with Acute Lymphoblastic Leukemia on March 25th, 2022. Before his diagnosis, he had a lot of infections, hospital stays, and fevers that would not go away.
His treatment(s) have included bone marrow aspirations, over a dozen lumbar punctures, weekly chemo treatments, and immunotherapy. Some of the treatments cause him trouble with walking.
Cancer has changed our lives immensely, especially when he was first diagnosed. He is treated at St. Jude in Memphis so we lived there for about 5 months off and on. We have three other kids so it was really hard on them. Now we only travel once or twice a week, a little over an hour for treatment so it’s not as bad. Truman is not able to do as much as the other kids though, so it changes a lot of our daily life.
Truman has shown us how to really fight. He has been so strong through it all and is so resilient.
