Adelia was diagnosed on 2/27/2023 with diffuse midline glioma. She has been through almost 63 rounds of radiation, 4 brain surgeries, and countless other procedures. She was doing very well for the first 8 months, and then the cancer spread to her brain stem and she lost function in her left arm/hand, and has trouble with balance and walking. Last month, we found out that the cancer spread to her spine, and she is currently undergoing radiation. We are hoping to get her to the CAR-T trial in Seattle in mid-April, the soonest she can go. Throughout it all, Adelia has remained fearless, optimistic, and in good spirits. She never complains and takes everything in stride. She is an avid reader, devouring many books a week, loves school, crafting, painting, cooking, and her little sister Esme.
We thought Adelia had the stomach flu, and she had been in and out of the ER with treatments of Zofran and IV fluids. Her symptoms presented extremely rapidly, over a few days. We took her to a different ER finally did an MRI and found the golf ball-sized tumor in her brain. We were ambulanced up to Boston Children’s for emergency surgery. Looking back, there were subtle changes that we should have picked up on but didn’t know any better. Two weeks prior, she had her annual visit with her PCP and she said her vision was blurry on the vision screening, but could still name all of the letters accurately. She was probably having double vision then but didn’t know how to articulate it. The day she was diagnosed will always mark a before and after in our lives.
Beginning in about June of 2020 we noticed Ryhan had stopped eating and was losing weight rapidly. However, we thought this was due to him hitting his puberty stage of height growth. He went from being about 5’4″ to about 5’9″ in less than about 4 months. But because of the weight loss he shortly later started to complain of stomach pains and started puking after certain meals. He grew super tired very easily every day. He was always complaining of a headache, and thirstier than anything we had ever seen. He could drink an entire 5-gallon jug of water within 3 hours of waking up. So the doctor ran a panel and called us to come in. He informed us that his thyroid had stopped working and he was going to need his gallbladder tested. He was placed on special meds for both. In February 2021 we had to remove the gallbladder. It stopped a few of the issues but brought out others. He started getting blurry vision randomly and started complaining he couldn’t see except in front of him. So we called the eye doctor and were told we would have to wait for 2 months to get in. So the days he woke up complaining couldn’t see he would not get to drive his truck to school.
He finally got in to see the eye doctor after he had an accident in his truck. We got down there and he wanted to scan the optic nerve. Ryan wanted to go back with his brother and wanted me to wait in the lobby. So I waited until the doctor came out and got me telling me something was wrong. He had found a huge mass that was crushing his optic nerve. That was Sept 10. On Sept 13th we were admitted to Children’s Oncology floor in Oklahoma City. We had his 1st surgery on Sept 21st and found out the results on Sept 26th.
He went through 6 surgeries, chemotherapy for 6 months straight, and radiation for 4 months. He is forever on special medications for his thyroid, diabetes insipidus, and testosterone for the rest of his life.
Going through this has made us all stronger. It has made us learn to love more, give more, and help more! He missed an entire 2 years of life basically and school and spite that is still current with his class! He is graduating this year! He is our Senior!
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.
Tyler is strong, a literal angel! He is my Christmas baby and the best present I’ve ever received. He’s courageous and sweet.
Tyler was diagnosed with ganglioglioma on 2/26/2020. Before diagnosis, he had unusual eye movements.
He has had chemotherapy, surgery, targeted therapy, EKG, and EEGS. We’re limited on travel based on how much oxygen he needs. He uses oxygen 24:7 and is currently bipap most of the day.
Tyler has younger siblings and his sister is realizing he can’t play like her cousins can. His dad and I live in worry, but it changed us positively too, we’re happy to have spent and continue to spend every day with Tyler. he’s amazing!
My son, Ethan, was diagnosed with ATRT brain cancer in November 2022. This is a very rare and aggressive type of brain cancer. Ethan was a happy and seemingly healthy 2.5-year-old who was meeting all of his milestones. Suddenly, during the first week of November 2022, he started having trouble walking. He was having trouble with his balance and within a few days was starting to crawl again. This was the only symptom he had. We took him to his pediatrician who referred us for an MRI. To our shock and devastation, the MRI showed a large tumor in his cerebellum and he had hydrocephalus from the fluid buildup in his brain. Ethan was immediately admitted to the hospital and we were emergency transported in an ambulance from the hospital at Mizzou to St. Louis Children’s Hospital. After a biopsy of the tumor, we received the devastating diagnosis of ATRT brain cancer.
We spent 130 nights in the hospital during Ethan’s treatment. Ethan had his tumor resection surgery and multiple rounds of brutal chemotherapy including a stem cell transplant.
Ethan was treated at St. Louis Children’s Hospital which is about 2 hours away from where we live. During this time my husband and I switched off being in the hospital with Ethan or being home with our older son, Jonah, who is 6 years old. Our family was separated during this time for about 5 months. This was a very difficult and challenging time.
Ethan’s cancer diagnosis has changed so much. We miss our life before his diagnosis and we never thought anything like this could happen to our family.
Ethan’s diagnosis, treatment, and spending so many nights in the hospital were very traumatic for our whole family. Right now we are focusing on cherishing the time we have together and helping Ethan heal from his treatment. We also try to maintain a sense of normalcy for our older son, Jonah.
Ethan recently had his routine MRI on October 18th, 2023 and he had clear scans! His type of cancer is very aggressive and there is a high chance of relapse, so this is amazing news!
Avery is that little girl who punches above her weight and finds a way to stand out in the crowd. She’s a compassionate, energetic, athletic, mischievous little prankster who loves soccer, skiing, and sailing and most of all loves getting a rise of “Averrrry!!??!?” out of her friends and family who love her. Avery was diagnosed with diffused midline glioma just before Christmas of 2021. Before that, she had a series of headaches.
Avery has endured four brain surgeries, and two radiation programs (2022 & 2023) and is currently on a clinical trial medication to slow the re-growth of her cancer. Avery’s has been very fortunate thus far. She’s still in school and active with her friends and family. It’s exceptionally rare given her diagnosis.
Life is completely different now. Long-term survival for Avery’s cancer type is 3 years, she’s currently at 22 months. We’re thankful for every second of every day but obviously, we’re also stressed about what is next every second of every day. Avery is doing well at the moment. She had radiation this summer which was difficult with headaches and side effects from a necessary medication regimen following the radiation. These have now been reduced significantly and she’s feeling much better. As such we’re trying to capture memories from some of these happiest of days.
