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.
Meredith is our more serious and reserved child. She is 12 years old. She loves her pet bunny, succulents (and plants in general), Boba tea and Ramen, her friends, and going on new adventures. She has been playing the piano and taking dance classes for 5 years, and we hope she can continue both after recovering from her most recent treatments.
Meredith was diagnosed with cancer in 2020. Her brain tumor was completely removed. We discovered it had regrown in September of this year.
Meredith had 1 brain surgery in 2020, and she just completed 6 weeks of radiation at St. Jude in Memphis. She is on 4 lifelong medications. She cannot sweat, so she cannot be outside in heat for long. There are other complications, but they’re harder to explain – basically, minor incidents (like vomiting or a fender bender) can land her in the hospital immediately, and this will be lifelong also.
We are all the more thankful for God’s gift of life and each other.
At nine months Madison started to become very irritable, crying a lot, then she started to throw up every day and have yellow bile come up in the mornings. It got to the point where she did not want to play on the floor at all and had to be held all the time. This was not like her, she had always been a very happy go-with-the-flow baby.
After a few weeks and doctor visits I decided to take her to the hospital. It was then we learned that on her CT scan, she had a 4cm tumor on the back of her brain. She was immediately rushed to Duke Hospital where she underwent surgery and has been in the hospital since then getting treatment.
Madison has undergone three extended stays of chemotherapy in which she was in the hospital for five months getting treatment and had many complications. She was able to come home in August for three weeks in which she did a great job. After her three-week stay at home, she was re-admitted to the hospital for her first chemotherapy and bone marrow transplant procedure. After about four weeks she was able to come home for about a week. She was admitted this past week for her second round of chemotherapy and bone marrow transplant. She will be in the hospital for about a month and will have one more treatment after that. The goal is for her last treatment to be over by the end of the year.
I went from being a stay-at-home mother to a two-year-old and a nine-month-old. to having to stay in a hospital Monday through Friday with Madison and only getting the weekends with my other daughter. Also, my husband works full-time and would switch out and come to see Madison and take care of her on the weekends. It has taken a huge toll on her family but we have so much love and support from all of our family and friends. It has not been an easy transition but we have gotten through it and Madison is stronger than ever.
Griffin is the sweetest boy, just so full of joy! He loves being outside with his Mama and going on adventures. He is a tough kid who goes through everything without complaining. He loves to giggle and dance to music! His favorite song is Fire on Up by Paper Kings.
Griffin was diagnosed with a brain tumor on January 15th, 2023. He was 13 months old and very advanced, walking confidently and playing like a toddler. New Year’s Day 2023 we started to notice a slanted smile and he was starting to lose balance. A week later he had stopped using his right arm. We thought this was due to a stroke or an infection but an MRI showed that he had a mass in his brain roughly 1/4 the size of his actual brain. This began our journey and fight.
We have been through four rounds of chemo so far, and this has been a huge hit to our life both emotionally and physically. But, this has also been one of the things that has brought our family closer to each other and closer to God.
Griffin had some limitations early on, however after the original biopsy the incredible surgeon was able to remove fluid from one of the cysts in his brain and relieve pressure on the center of his brain. This gave him the ability to walk and play again! This has been a huge blessing during this battle.
Kennedy is fun, stubborn, afraid of missing out, and loves his family. He also loves hot wheels, music, and golf.
Kennedy was diagnosed with ATRT, a brain tumor, in August 2021. Prior to his diagnosis, he was vomiting and had head torticollis.
He has received two rounds of low-dose chemo, three rounds of high-dose chemo, three stem cell transplants, and 28 rounds of radiation to the brain. He requires a feeding tube (G-tube dependent), has problems with his balance, facial paralysis, sensitivity to sunlight due to chemo, and vision palsy.
It’s hard balancing brain cancer and life along with raising your other child, maintaining a relationship with your spouse, and the unknown of your child’s prognosis.
Kennedy turned two in October and shows courage and strength in his own way. He has brought an amazing spirit to everyone he has ever met.
