We are the Garrison’s, a Christian, homeschooling family of special health needs. Jon and I have been together for 23 years and have been blessed with four wonderful boys. Josh is our oldest and is 16, Joey is 13, Jameson is 7, and the baby is Jackson, who is 2. We also have a fur baby named Luna. She is a mixed breed, with what we are told is Gordon Settler, Lab mix, but we think she may even have Rottie in her as well. No matter what her mix is, she is the emotional support the boys need with their day-to-day medical troubles. Such a lovable addition that we are blessed to have.
Glory to God
God has shown his grace in so many ways, especially these past six months. I honestly don’t know how our family would have gotten through if it was not for our faith in the grace God provides.
Our family’s journey has provided us with a reality of how frustrating our medical system is, how fragile our children are, and how society is out to ruin our children. (Side note- Don’t ever stop fighting and praying for your children, even a little complacency can wreak havoc).
My oldest son Josh has struggled with mental illness for a few years. Rightfully so, with all of the medical traumas he has endured. With having EOE (Eosinophilic esophagitis, a chronic disease of the esophagus), chronic migraines that can last for days, abdominal migraines, insomnia, asthma, and allergies, has been healing from a traumatic brain injury since he was 5, and still, an undiagnosed GI issue (could be autonomic system related) that we are working to find (we have an upcoming visit to the Mayo Clinic in Minnesota in the near future). Top that all off with anxiety and depression and our society’s lovely agenda with our children. His mental illness is justified. Not that it has to be. Just saying it is.
These past few months have shown my husband and me, more than ever before, the importance of ensuring we, as parents, closely guard our children. By guarding their hearts, minds, and souls and making sure as parents that our children understand values and beliefs that are truly surrounded by what God is asking of us.
Being an advocate for our children is something Jon and me know that no matter what, we have to fight for our children. Their voices are just not big enough to advocate for themselves.
The next trial we have been enduring is with our 7-year-old Jameson. He was born in November 2015. His birth was not terribly remarkable. Unless you count an epidural that caused issues. But I digress.
Jameson was 12 hours old when Jon and I were trying to wake him up to nurse (something that, up until that point, he was doing amazing at). It was then that we noticed that something was not right. While trying skin-to-skin to help wake him for nursing, I looked down and noticed Jameson was starting to turn blue. My mom brain at first thought “oh, he is just cold” and asked Jon for a blanket. But then soon realized he was not breathing. We pulled the alarms; nurses rushed in, grabbed our son, and whisked him off to the nursery. Another nurse was trying to calm my hysteria down, and after what seemed like hours but was really a reality of only minutes, a third nurse gave us the news that Jameson was back to breathing but still having episodes of apnea. We rushed to the nursery where he was to see him.
Only two hours earlier, our pediatrician had come and done his newborn screening and told us that he did not see anything unusual and that Jameson had passed his evaluation.
The nurses in the nursery all agreed something had been missed, and so they first called down to the doctors in the NICU. They stated to the nursery nurses to just keep him upstairs and watch him. The nurse in the nursery, who I feel was like an angel in disguise, looked right at Jon and me and said I am calling his pediatrician.
Mind you, we had been with this pediatrician since Josh was a baby (almost a decade), and as Jameson is our third child, our pediatrician knew our family quite well. So, it was a surprise to him that he was getting this call. He didn’t like the NICU doctor’s response to just watch him in the nursery. He demanded that Jameson be observed in the NICU and have him evaluated more thoroughly. About an hour later, we were transferred down to the NICU. That is a long side story I will tell in another post.
Time for an MRI
While in NICU, the neonatologist decided an MRI was warranted as Jameson still had difficulty with normal and safe levels. This was the longest hour of our lives (at that point in time) while waiting for him to be taken down and brought back up.
The neonatologist visited us a few hours later to tell us Jameson had a blood-brain lesion. That could be a slight reason for what was happening. Jameson was born a week before Thanksgiving, so about two days after the scan, they felt he was well enough to be released to go home. This was exciting to us and we took our little turkey baby home to be with the rest of our family.
However, it would be with an apnea machine and orders to see our pediatrician and the neurosurgeon at Children’s.
This started our now seven-year journey of repeat MRIs and visits to Children’s Hospital. More and more additions to the team of doctors Jameson sees. It literally grows each year.
Point of No Return
Fast forward to 2020. June, to be exact, Jameson had his repeat MRI for that time frame. Generally, after the MRI in the morning, we go later that afternoon to see the neurosurgeon about the results. But this time, because of Covid restrictions. We had a virtual visit with him.
Sidenote- At this time, I was days away from having Jackson and at home alone with our two older boys. As Jon was still at the hospital with Jameson waiting to be released from the MRI. For each MRI, because of his age, Jameson has to be sedated. So, once they complete the MRI, it is about 1-2 hours before they release him.
The naivety I had going into that appointment made the shock of what I was about to hear even harder to swallow. I could tell from the demeanor Dr. L. had that the results were different. And they were. This time the tumor had grown, and it was at a size that if action was not taken soon, irreversible damages would wreak havoc on his brain.
This meant in a few months, Jameson would start the process of testing and doctor visits that are needed to move forward to Jameson having brain surgery. The fact that we were catching it at the size it was allowed for a laser ablation versus a craniotomy.
Side note- If the incident at 12 hours of age didn’t happen, warranting the MRI as a new born, this type of tumor is usually not caught until irreversible damage has started.
Jon and I rightfully so were scared by this news. I mean, someone was going to do surgery on our child’s brain. There was the possibility of risks and complications.
March 8, 2021, after dropping Jackson off at my parent’s house (Josh and Joey were already there). Jon, Jameson, and I drove the 20 minutes to the hospital. This trip was different as we were going in with nervousness, unlike any previous visit before. Jameson was going for his brain surgery.
The whole surgery was to take 4-6 hours from when they put him to sleep to when we would see him again. Six hours later, we were able to see our baby. We were in the Neurology ICU for only two days. Then they send us home. We were shocked at how well Jameson was doing.
But on March 12, a hiccup, he had an urgent MRI to see how healing was going and to see how the swelling was looking.
This MRI concluded he needed additional steroids to help with the swelling as it was not going down as well as they would have liked.
Fast forward to July 15, 2021, and Jameson had his next MRI, the post-op MRI that was to be the new baseline for how they were going to measure if Jameson was stable and no new growth was happening.
Six MRIs later, this brings us to January 18, 2023. And another day of bad news. I was home with Josh, Joey, and Jackson, while Jon took Jameson to the MRI and follow-up appointments with neurosurgery and the oncology clinic doctors.
Side note-In between MRIs, seizure activity has also increased since having the surgery, so there have also been overnight stays at Children’s Hospital to have in-patient EEGs completed. The most recent stay was on February 10, 2023.
When Jon called to tell me he was on his way, I knew by his response that the results were not good, but he stated he would just talk to me when he got home.
Once home, Jon pulled me aside for a shocking result. The tumor is currently regrowing. And now, we are talking with neurology and neurosurgery about the timing of Jameson’s next surgery. It is looking to be summertime. But the testing and talks all have to take place before the decision of that day takes place.
"For I know the plans I have for you,” declares the LORD
So, what does the future look like? Well, hospital stays, doctor visits, the possibility of having holes drilled in my baby’s head, and surgery to remove a portion of his brain. (how much is still the variable) Recovery time and therapies, plus a lot of unknowns.
For Josh, we have endless appointments to get him the help he needs, plus a four to five-hour drive to Minnesota, a week (maybe month) long stay, to see specialists and have testing done to find answers we have been searching for a large portion of his life.
The future holds more answers, but we have to take each day as it comes. Hoping that the decisions we make on those days are the right ones. Decisions that will provide our children with a long life full of happiness and health.
So Jon and I hold onto the hope that God has provided. And his word, “ For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11