By Janet Lopez
Mommy to Gabriel
Grade 3 Anaplastic Astrocytoma of Thalamus
April 8, 2016 – February 4, 2023
Gabriel was born the spring of 2016. He was a happy, healthy baby, and we were so happy to finally have him in our arms. He had all his regular newborn screenings, and we were discharged two days later. We had our first check up with his pediatrician and his jaundice levels were elevated so he was put on a home light blanket to help. When we went in for another checkup a few days later and his levels were getting better.
Not long after that, Gabriel began projectile vomiting continuously after feeds and his weight began dropping so his pediatrician was seeing us for weekly weigh ins. We were changing formula and adding oatmeal, doing everything we could to help him tolerate feeds better. During this time his left eyeball had also been veering off to the left but would bounce back to the center after a while. His pediatrician believed it was just a lazy eye, he had seen lots of babies with it, and said it should clear up on its own.
On May 26, 2016, we called his pediatricians office due to Gabriel’s eyeball not looking like it was moving back to center anymore. Due to Memorial Day weekend the office was closed so we took Gabriel to Mercy Joplin hospital’s emergency department. We were checked in and immediately put back into a room. The doctor came in to check him and said that his eye possibly just needs clipped to allow that eyeball to come back to center. This was something she had done before and assured us everything would be okay.
They took him back for an Xray and when the doctor came back into the room, I just knew it was something more serious than a lazy eye. He was life flighted to Springfield Mercy, when we arrived, they told us from what they could see on the Xray’s they believed he had fluid buildup in his head, and they would be doing an MRI scan for further testing.
When MRI results came in, a radiologist came to tell us they found a mass in his brain, and we would be life flighted to St. Louis for further care. We were transported and when we arrived, we just remember so much was happening, there were lots of doctors and nurses coming and out of his room hooking him up to all their monitors and exanimating him. We had two neurosurgeons come into his room and pulled up imagines on their computer, they told us what they found was a brain tumor and that it had grown throughout his tissue and optic nerves. They said it was inoperable, but they would be doing a biopsy as soon as possible to know what type of tumor he has for treatment options.
We got results about 3-5 days later; his oncologist came in and told us he had what was called a Grade 3 Anaplastic Astrocytoma of Thalamus. He said it was the first case he had seen in a baby of Gabriel’s age; this type was mainly seen in adults or older children. He presented us a protocol chemotherapy treatment they used for brain tumors and said he wanted to start Gabriel as soon as possible. We started cancer treatments a day or two later.
In that moment we were two 18-year old’s that had just graduated high school being told our baby had a rare brain tumor and to be prepared for many possible outcomes. Some doctors were asking if we had thought about what to do if scans showed no change with treatments. At the time our hopes and dreams were to heal our baby boy and free him from pain and suffering.
The St. Louis hospital was four hours away from our home. With the help of our family and friends we were able to stay at the Ronald McDonald house across the street the entire time he was in the hospital. We were there for seven months. we were both out of jobs and had to adjust to being away from family during such a difficult time. Our lives were impacted like any other parents when you have a child your life changes, it becomes about doing everything that’s in their best interest and building a good life for them.
When we got home, we had to travel every week to St. Louis for checkups. All our focus was and has been for our baby boy. We’ve had to spend holidays away from family and isolate ourselves when his counts were low and he was at his most vulnerable. We spent a lot of time in a hospital where doctors and nurses became family. Our lives were impacted greatly by his diagnosis, but we adjusted the way other parents would for their child.
He finished his treatments in November 2017 and underwent routine MRI scans. Around October of 2018 we got the news his tumor was showing growth. His oncologist came to us with two treatments options: a clinical trial at a local hospital, or a chemotherapy pill used in the trial that our oncologist could get. We met with the clinical trial doctor, and she evaluated Gabriel, but the trial was not going to start for months and there would be a possibility Gabriel wouldn’t qualify for the trial. We ultimately decided to start the chemotherapy pill with Gabriel’s current oncologist. She had seen good results from other patients she currently had on it and had high hopes it would help Gabriel.
He was given the pill every day and we were doing MRI scans to monitor treatments. In August of 2019, treatments came to an because multiple scans showed growth of the tumor and Gabriel’s pain level was increasing. There were no words in that time that could explain how we were feeling. They had someone come in and speak to us about moving him into hospice care and what we could do to make his quality of life better.
At the time medical marijuana had passed in Missouri and we had heard of this oil that could possibly help. With the approval of his oncologist, we got him his card and got the oil and began to give it to Gabriel. We were getting routine MRI scans to watch his tumor every two months and it seemed to show stability and most of all helped control his pain. Sadly, in December of 2021 after scans had showed even more progression, we made the difficult decision to begin hospice care.
On Angels’ Wings became a part of our journey in the beginning of our hospice journey. It was a hard transition for our family and wanted to make memories we would cherish for a lifetime. This is when the hospital put us in contact with On Angels’ Wings to get family pictures done for us. We were beyond grateful to the organization for helping our family during a very difficult time.
Gabriel lost sight in both his eyes; he was also diagnosed with hydrocephalus which caused his head to be larger in size. It impacted his growth and mobility, but he has worked hard over the years with physical, speech, and vision therapists. Our lives became about fighting together and being together every step of the way. We’ve been under hospice care a year and a half now and we’ve been working alongside his care team to keep him comfortable.
From the start of our journey, we wanted nothing more than to have our boy healed, healthy, and pain free. We hoped peace would overcome his life and he would be pain free, that he would get to live the life a child deserves. He is now, even if it’s in another world we won’t be a part of until we meet with him again – Gabriel passed on February 4, 2023. Our baby fought a great fight, and we are so proud of how strong he was. He will forever be our little warrior.
