Miles is so kind and loving. He has an incredibly strong faith in Jesus and loves giving and doing for others. He’s an incredible little old soul. He loves building Legos, coin collecting, and playing piano. He always finds a reason to dance!
In February of 2023, Miles was having what we thought were sinus headaches from the dusty Arizona climate. The urgent care didn’t find anything wrong, so I took him to the eye doctor. The eye doctor sent us immediately to the ER because his optic nerves were swollen, where we found out it was a brain tumor.
He has had three brain surgeries and is currently in treatment. He takes oral chemo at home and is doing well on it so far. There have been a lot of emotional and financial struggles for sure. He has two older brothers who have taken it really hard also.
We have definitely gotten closer as a family. We have learned to adapt and change to the constant specialist appointments and what Miles’s limitations are. We are thankful for every day we have together.
We have been blown away by all the love and support from our community. I’m sad it took this happening for us to realize how incredible all of the people around us are and how blessed we are.
Jacob is such a kind young man. He has a funny, sarcastic sense of humor. He lives for golf. Golf has helped him focus on something other than his diagnosis.
Jacob was having frequent headaches. I already had one child diagnosed with cancer, so the pediatrician wanted to do a scan to make sure Jacob was okay. We figured it was just migraines, none of us expected it to be brain cancer.
We currently are scanning every few months to watch for tumor growth. He deals with frequent headaches and nausea.
Having two kids with cancer has been absolutely devastating. As a single mom, this has been challenging in every aspect of our lives. Traveling over two hours away for appointments has not been easy. Throughout our journey, we lost our home, my job, and our sense of normalcy. We try to live each day knowing it is a blessing, but that fear never goes away.
Kallie was diagnosed with diffuse midline astrocytoma/glioblastoma in June 2021. She had cold-like symptoms the week before and then had what we thought was a stomach bug over the weekend. She was very weak, lethargic, and vomiting. When she wasn’t fully recovered by Monday we went to our local ER and was Kallie was diagnosed with mono and received fluids. By the afternoon, she hadn’t perked up and they sent us to CHNOLA to be further examined. Once there, they performed a CT and found the mass.
She had a partial tumor resection in June which gave us the official diagnosis, completed 33 sessions of radiation, and had 45 nights of chemo. We have an MRI this Friday and then will start maintenance chemo. I (mom) am an RN and had to give up my full-time position to be available for treatments and appointments and to be her primary caregiver. It is also hard on her almost 2-year-old sister that understands Kallie goes to the doctor but hates having to be separated from us when we have to go.
Kallie has always been a bright light and very happy girl. She has always had a heart for making people feel good and making them smile. Even through this journey, if you ask how she feels she tells you “happy” every single time and tells you “great” with a big ole thumbs up if you ask her how she’s doing.
Jack is a very thoughtful 8-year-old. He takes a minute to warm up to people, but will very quickly start talking your ear off about Pokémon, or rocks, or his dog Eevee. He is silly and feels intensely. He has a newfound interest in geology and has rock collection he is very proud of.
Jack was diagnosed with ALL in May 2017. He was diagnosed with JPA in December of 2017.
For ALL, Jack had extreme pain in his leg. At first, we thought he had growing pains. Then it got to the point where we couldn’t touch him without him crying out in pain so we took him to the ER thinking he had a fracture. They did bloodwork to rule out a blood infection and found blasts in his bloodwork.
His JPA was asymptomatic, we found it by chance. Jack had a reaction to one of his ALL chemotherapy medications that resulted in abnormal neurological behavior. We took him to the ER because he was non-responsive but awake. The neurological issues turned out to be Methotrexate toxicity, a side effect of chemo treatment. But when the doctors ran an MRI to confirm this diagnosis they found an unrelated tumor near Jack’s brain stem.
Jack has been in treatment for just over 2 years and has 8 months left for ALL. He went from intense weekly chemotherapy in the first 9 months of treatment to one a month treatment for maintenance.
The JPA was partially removed in December of 2017, but the doctors were not able to remove it all because of its location in relation to his brain stem. Because he is in treatment for ALL we have been unable to treat his JPA further. We are monitoring the JPA with regular MRIs. We will see how the tumor behaves once ALL treatment is over to see if we need to do anything else in treating his JPA. So far only small fluctuations have been seen.
Grayson is amazing! He’s always smiling, shy at first but once he gets to know you that’s gone.
In the summer of 2018, he was falling and his hands would tremble. We kept taking him to doctor and ER and they would say he was fine. I finally begged for a neurologist to look at him and after his MRI they confirmed our worst fears. He had a Grade 4 Astrocytoma.
He’s had treatment weekly as outpatient but the first 4 months were completely inpatient. The medical bills are finally to add up and its becoming a financial battle.
We can’t help but worry daily, plus his immune system is compromised weekly so we hang in the house a lot.
