Juliette loves stuffed animals; they seemed to comfort her when getting evaluated. She’s always loved playing with her sister and running around everywhere.
Juliette was admitted on October 31st, 2022 with what we were told was a tumor on the back of her brain (Posterior Fossa Tumor). Leading up to the diagnosis she had been drowsy, not eating or drinking, and couldn’t walk properly. Everyone thought it was a virus because she had thrown up a few times as well, but the walking part did not make sense, so a CT scan was ordered, revealing the mass.
Juliette will begin radiation in a few weeks and will begin chemotherapy a month after the radiation is finished.
Cancer has changed our lives in many ways, particularly for our other daughter, Juliette’s twin Adela. It seems odd to have identical twins when one is fighting cancer. It is important to us to document this time when our lives were altered so much but also to highlight our family’s joy and faith through the struggle.
Kai is the sweetest soul. He genuinely loves helping others and we often joke that he is a professional big brother. He’s the second oldest of our 4 children. When we are near other children he goes out of his way to assist the younger kids and makes everyone feel welcome and loved. He loves dressing in costumes and wore different character pajamas to his chemotherapy appointments. He also loves all things Disney, Lego, and spending time at the beach/in the ocean. After taking a break during chemotherapy he is happily back to his jiu-jitsu training and is working towards his grey/white belt.
Kai was diagnosed with a brain tumor – Thalamic Glioma – when he was 2 years old. He had a CT scan after falling and hitting his head, and that’s when the tumor was discovered.
Kai has completed a year of chemotherapy. He endured pokes, surgeries, infusions, and MRIs. His father drove him weekly to his infusions and appointments, over 2 hours each way. A few months into his chemotherapy protocol I (his mother) was also diagnosed with cancer. A large tumor was discovered near my heart. Primary mediastinal large B cell lymphoma was my official diagnosis. Having 2 family members going through chemotherapy, mid-pandemic, was difficult, to say the least. We both completed our treatments in the fall of 2021 and I’m thrilled to report Kai’s tumor is stable and I am currently in remission.
Kai is steadily regaining his strength and endurance. His brain tumor is centrally located in his brain and is considered inoperable. He will be carefully monitored by MRI every 3 months. Medical trauma and anxiety is likely something he will always have to live with.
Kai’s diagnosis was so early on in his life that it’s become something we have almost always had to live with. It’s been difficult but also given us all a perspective of gratefulness. We know tomorrow is not promised and are grateful for every day God grants us to be together.
We are just so proud of Kai. He hasn’t let his struggles define him. He instead shows incredible kindness and love to all.
Mackenzie loves science (astronomy) and lacrosse. She is shy but funny. She adores her chocolate lab Loki who is one year old. She is outdoorsy and a Cub Scout. She is a big Harry Potter fan and loves school too.
Mackenzie was diagnosed with a brainstem Glioma in July 2022. Prior to her diagnosis, she was experiencing strong headaches. Her treatment has included radiation and two surgeries, one for a biopsy and one for VP shunt placement.
Doctors still are amazed that she was only having headaches. She was doing Lacrosse tryouts and shooting sports the week before she was diagnosed. She is ready to start training again. She rocks each radiation session. Mackenzie and her mom wear Harry Potter robes to put some magic into her treatment. Her radiation mask has Luna Lovegood’s face. We love her medical team. She has not stopped going to scout meetings and the day she was discharged from the second surgery she wanted to go to her den meeting and wear her new uniform.
Joseph and his brother enjoy a good fart joke (LOL). They also love going kayaking and playing video games.
Joey was diagnosed in 2019 with “CNS Embryonal Tumor – NOS” on the left side of his brain. Before his diagnosis, he was going cross-eyed and seeing double so we took him to the ER and a CT scan showed that he had a brain tumor. He went through 33 rounds of radiation and 6 months of inpatient treatments before finally having NED (No Evidence of Disease). He was NED for about 4 months and then showed a faint amount of growth on the opposite side of his brain. Back in 2019, St Jude’s did a pathology report on his original tumor and they found characteristics of Glioblastoma cells so we were going to assume this and treat the new growth as Glioblastoma, however, Methylation testing was requested on a piece of the original tumor and his diagnosis has been updated to “CNS Neuroblastoma, FOXR2-activated”.
This is when things changed completely. We had no better option than waiting for the next MRI and seeing if his tumor grew enough to biopsy, and it did. We have a biopsy scheduled for November 8th; all of the necessary tests to get the most accurate results will be redone so we can determine the correct treatments. This is where we are in his journey at the moment.
Cancer has changed our lives, 100 percent. We moved to be closer to the hospital and are paying triple the amount in bills. We have a younger son as well and he is also affected.
Huxley is a very active happy boy. He loves being outside and going on walks with his brothers and sister. He loves music and will sing along to almost anything. However, his favorites are The Wheels on The Bus and You Are My Sunshine. He also loves to cuddle and watch his show Ladybug and Cat Noir.
Huxley was diagnosed with Atypical Teratoid Rhabdoid Tumor (ATRT) in July of 2021. He also has Phelan Mcdermid syndrome; one of the symptoms of this disability is trouble with balancing, however, around Huxley’s 3rd birthday his balance got worse along with his eyesight and ability to communicate. Since he does have Phelan Mcdermid syndrome, it puts him at risk for NF2 tumors so he gets an MRI every 2 years and on one of the routine MRIs we found a mass. We repeated the MRI six weeks later to see if the mass had grown and it had. Huxley had surgery to remove the tumor and then 2 weeks later we got our diagnosis of ATRT.
Huxley’s treatment plan is 2 rounds of induction chemotherapy and 3 rounds of high-dose chemo with stem cell rescue. He will then have 6 weeks of radiation and possibly a year of maintenance therapy.
Cancer has changed our life significantly. We have had to go down to one income and Huxley has three siblings that miss him terribly when he has to be in the hospital.
