Hendrix was diagnosed with ALL on February 23, 2023. Before diagnosis, he had a weird rash on his bum, then petechiae all over his body.
When Hendrix was two weeks into maintenance for acute lymphoblastic leukemia. Hendrix went diabetic ketoacidosis. And almost passed away that night. He then later became an official type 1. He’s navigating two unrelated diagnoses to the cancer. It has truly shown his resilience and the continued strength he has. Having gone through the intense phases of chemotherapy treatment. To later have a lot more complicated life. But it does not slow him down one bit. He takes life with strides.
This has put our lives on hold for a very long time, and a lot of things got put on the back burner. A year of Hendrix and all of our lives came and went.
Ollie is a little shy at first, but when he warms up, he is very silly and goofy. He loves to tell jokes and play pranks. He laughs at all our jokes (even bad ones) and likes to make up his own jokes and silly songs. He loves superheroes, paw patrol, sharks, cars, Elephant and Piggie books, pokemon, and video games like Zelda and Minecraft. He’s very adventurous and brave (he’s been jumping off tall furniture since he could walk), but he still wants to snuggle with his blanket when he’s a little overwhelmed.
He was diagnosed with ALL in the spring of 2022. He started limping about two weeks before his diagnosis. He also was very tired, cranky, and clingy. I noticed petechiae on his body and my sister pointed out how skinny he’d gotten.
Ollie has had two surgeries to place and replace his port, multiple bone marrow biopsies, lumbar punctures, and around a dozen or more blood and/or platelet transfusions. He’s done a variety of chemotherapy treatments and has spent most of the past 2 and a half years on chemo. He’s spent around 50 days in the hospital in the past 2 years. I quit the full-time job I had when he was diagnosed and I’ve had to change jobs multiple times to find ones that will cover our finances and allow me to miss days when he’s in the hospital or when I need to bring him to appointments. We’ve all struggled emotionally with this, needing therapy and medication to help with the psychological toll seeing our sweet boy go through this has done.
I feel like I value my time with my kids much more and I’ve become a much more patient parent. My motto now is that there’s no mess too big that we can’t clean up, and I try to say “yes” to as many things as I can because life is so short and precious.
Ollie is the bravest little boy I know. He takes big scary medical procedures that would make any adult worry and does them like they were nothing. He has fought so so hard these last 2 years and we are so proud of him. If he can do this, I know I can do any big scary thing I have to face.
Eden was diagnosed with Osteosarcoma at the age of 14. Her diagnosis was just before Christmas in December of 2021. She had treatment until September of 2022 and was in remission for about a year. Then during a routine follow-up appointment in October of 2023, a scan of her chest showed lymphoma. She has been in treatment since, and in June of 2024 she received a bone marrow transplant.
When Eden was a freshman she was a swimmer on her high school swim team. She started having knee pain in her right leg towards the end of the season. At first, she wondered if she had perhaps injured her leg while doing a flip-turn. However, she couldn’t recall any specific incident that would have caused an injury. Despite follow-ups with various healthcare professionals, the pain continued to increase with a limp forming and getting worse the longer she went undiagnosed. It was becoming difficult for her to sleep or attend school due to the pain in her leg. Eventually, she connected with a specialist who was able to x-ray her leg and help her get further imaging that led to a diagnosis.
Eden currently has a weakened immune system. She typically social distances and isolates as much as possible. She has also had some difficulty walking and sometimes can get off balance due to some of the side effects of the prior chemotherapy. For long distances, she uses a wheelchair. For shorter distances, she used a walker.
Eden has had surgery, been under anesthesia multiple times for biopsies and placements of medical devices, and has taken multiple different medications for many different things. As a family, we are doing okay, but definitely appreciate all of the love, support, and generosity from our family, friends, and those in our community. Organizations like yours are so wonderful and truly help so much. Eden was looking for senior pictures and connecting with Kara and learning about this organization was such a blessing!
It has impacted all aspects of our family life. As a family, we have adjusted our routine as Eden now does virtual school and needs medications throughout the day. As parents, we have learned how to manage an IV line at home and administer different meds. Even with the changes to our family life, we still have fun as a family and have movie nights as well as days out on the weekends.
Eden is truly a beautiful person inside and out. She has been so resilient and has been able to maintain a positive attitude and good spirits while dealing with the most difficult of challenges. She has handled things with maturity and grace. She is a true partner in her care and advocates for herself and her needs. She has continued to complete school credits virtually and is hoping to rejoin in-person school sometime this year. Eden enjoys a variety of activities. She particularly loves theater and being on the stage in plays and musicals. Eden is also an avid reader and has shelves of books. She is interested in history and she is considering being a teacher or school guidance counselor in the future. She is also interested in pursuing opportunities in theater in the future.
In the fall of 2023, Eve suffered random bouts of sickness, but without any fever and always recovered almost immediately. She saw her pcp a few times because of all this but there were no immediate concerns. It was when her gait changed and her balance became a bit unstable that her doctor then felt she should have some imaging done.
Eve had a full tumor resection, followed by 6 weeks of radiation and she is now unseeing chemo, with a few more cycles left. Eve’s energy can be impacted hugely after a chemo session, at these times school hasn’t been possible, or outings if her immune system is very low.
For the most part, we try to just get on with life and keep it as ‘normal’ as possible for everyone. However, our calendar is now a series of weekly medical/therapy appointments. As Eve is special needs, this can be very taxing on her as she doesn’t fully understand what is going on and she is not always able to express how she is feeling or what she needs. This can be very frustrating for her. Her older brothers have been brilliant in helping her through this time with their patience and the time they give her by playing with her, taking her out for walks or just hanging with her!
Eve is a little live wire who always manages to get her point across despite her language limitations! She is feisty and strong-willed, hugely affectionate, and always happy to be the joker and enjoy a laugh!
Gracie was diagnosed with leukemia on December 2, 2022, when she was 11 years old. Gracie was a Club soccer player. She started having a lot of pain in her legs and back. First, we thought it was growing pains. But after several trips to the ER when she was in excruciating pain, they started diving more into what could be going on. An MRI of her hips and legs showed she had lesions all over her bones. We were immediately checked into rabies and there for a few days while they ran several tests and within a few days determined that Gracie had leukemia.
Gracie has had the normal types of procedures and treatments that come with a diagnosis of leukemia. She has a port to receive chemotherapy. She’s had bone biopsies as well as multiple MRIs. She’s had 12 or more lumbar punctures/spinal taps. Countless blood transfusions of different varieties. Multiple long-term hospital stays. She developed a vascular narcosis from the steroids she had to take. Thankfully they found an alternative so that is no longer a concern. She’s required physical therapy for neuropathy. It’s been a long road and we still have just over a year ahead of us, but she is in a better place today than she was even just a few months ago.
There are just so many layers of your life that become affected by a diagnosis like this. Gracie has an older brother and a younger sister. They kind of feel like we lived through COVID again in the sense that we had to keep Gracie isolated for so long. my husband and I took turns taking leave from work, which caused some financial struggles. The kids no longer had friends inside of the house, so their social lives were impacted. Our son was able to continue playing baseball and attend middle school regularly for the most part. Aubrey, Gracie’s younger sister, needed to be pulled out of school and some of the indoor activities she was part of such as gymnastics, In order to keep Gracie safe. Aubrey was homeschooled for a year and a half with her sister and even shaved her head with her sister.
Family is always been important to us, but living through something like this makes you appreciate every moment you have, we always look for the silver lining even on the hardest days. This School year both my husband and I as well as Aubrey have returned to full-time work/school. Gracie is still in a homeschool program and supported by family members.
Gracie is an incredibly strong kiddo who has handled treatment with an amazingly positive strong mindset.
Matthias was diagnosed with optic nerve pathway glioma in August 2023. He lost his vision in his right eye. The glioma has also affected his gross motor skills, as he is not able to stand or walk on his own. It has limited his speech to only a few words, and it has limited his fine motor skills.
We had Matthias when my husband and I were 44 years old, after trying for years and having 2 miscarriages. Matthias was our amazing gift from God, as we were in the process of adopting when we found out about the pregnancy.
Matthias was born with Down Syndrome and when he was 2.5 years old he was diagnosed with Neurofibromatosis (NF1). Neurofibromatosis is the reason for the optic nerve glioma.
This has shown us how important family and friends are. This diagnosis has put in perspective what is important in life and that without your health nothing else matters.
