Goodness Unveiled

The week after the skin graft surgery from the burns, in August of 2020, Garren started having migraines. He had never done this before, so we assumed it had something to do with the trauma. He was no longer on pain medications, so it wasn’t a withdrawal symptom at that point. Over the course of the next several months, we took him to the chiropractor twice a week and his doctor tested him for varying issues that could be related to extreme trauma. He started trauma counseling, thinking that could help him process everything and alleviate the headaches. The headaches continued off and on for the next year and sometimes it seemed chiropractic and migraine medications helped. In August of 2021, he started complaining that his eyes were bothering him, so I scheduled him an eye appointment for early September knowing that it had been about 2 years since he had a new prescription when we were so focused on the burns. It was Thursday, September 2, 2021, that lingering things with the burns were finalized. We were ready and hopeful to move on from that trauma. That weekend, on September 5, Garren told me he was seeing double, but when he took his glasses off the double vision went away so I thought he just needed new glasses. On September 6, he started wearing an ice pack on the back of his neck due to the pain and he told me he thought he had a brain tumor. I told him that was probably just his worst-case scenario thinking that he had been discussing in counseling. I asked him if he Googled his symptoms, he said no, that he just had a feeling. I called his doctor for him to go see her after his eye exam on that Tuesday. Jonathan and Garren both had the eye exam early afternoon on Tuesday, September 7, and Jonathan called me in the middle of it saying that Garren’s eye exam showed extreme fluid on the optic nerves. The eye doctor told Jonathan that Garren needed to go to the ER and be checked for a brain tumor because of the fluid and the fact that he could not track his eyes up.

My sister came over and she sent the eye pictures to a friend of hers who was an ER doctor at a local hospital. He said that night was crazy due to high COVID numbers and to come in around 7:30 the next morning. We went in early on September 8, which was my birthday, and he had a CT scan that showed a ping-pong ball size tumor in the middle of his brain. While Jonathan and I just stared at it, Garren calmly said “This is just another chapter God has for me”. I am still in awe of the preparation God gave him just days before, as well as his continual calm and trusting spirit. We prepared for flight to Cook Children’s ICU where he would have brain surgery to relieve the pressure on his brain. Jonathan drove to Fort Worth while I flew with Garren. He was in triage in the ER for a couple hours where doctors kept coming in to show students his tumor pictures and his eye tracking. They told us then that if you can’t track your eyes up, it’s not “probably a tumor”, it’s “definitely a tumor”. Around 7:00 that night he went into an MRI that they expected to take 4-5 hours. He was able to watch a couple movies in the MRI which made it a bit easier, and Jonathan got into Cook’s while he was in there. After the MRI, he was admitted into ICU for severe hydrocephalus. The ventricles in his brain were extremely large and full of fluid, they told us he would have died by the weekend if the ophthalmologist had not caught it when she did. They watched him closely for seizures that night and were surprised he had not already had any with the amount of fluid on his brain.

Early the next morning, we were visited by a team of neuro-oncologists. I remember being in denial that this was possibly brain cancer, convincing myself that it was just protocol that they were there to visit with us. They explained to us that the location of the tumor was almost impossible to remove with surgery, it was too dangerous. The head neuro-oncologist explained how he wanted it to be reactive to chemo and radiation, that was Garren’s best chance of survival. I am so thankful how professional and calming the doctor was in explaining these things to us.

The neurosurgeon came in to prepare us for surgery to biopsy the tumor and create a new drain for the fluid. Garren was scared that he would be blind, or not make it out from surgery at all. The neurosurgeon answered all of our questions but was very clear on the long list of things that could go wrong with this type of surgery. This was not to scare us more, but to let us know that he would back out if he didn’t think he could do it. If he moved a hair in the wrong direction going through the brain, Garren could be disabled for life, blind, behavioral changes, or death. After we processed this information and we asked all the questions we could think of, we settled in to wait for surgery. I had some phone conversations with my sister-in-law to share with Jonathan’s side of the family and then my Dad to share with my side of the family. The information and risks of going into this type of surgery were too overwhelming to really comprehend.

While I was in the hallway in ICU on the phone, a good family friend and mentor to both Jonathan and I beeped in. He and his wife were in the middle of their own long struggle with her cancer, and he said to me “God is still good”. I have spent my whole life believing that. Even with all the pain I had endured in my life, I always had known that God is good. But at that moment, those words caused an instant gut punch. I didn’t have time to think or process those words, but it felt like my body was revolting against God, who I thought I could trust with my child. I felt it in my stomach, in my lungs, my muscles, like a heaviness pushing my shoulders down. How could He be good when my burned child is now sitting in ICU with a brain tumor? Exactly one week from the burn issues being finished. It felt so cruel. I felt betrayed, crushed by the One I had spent my whole life serving and trusting.  As I look at it now, I know that He was good in that moment, that He was trustworthy. But I felt true despair right then. I remember when Garren was a baby, we were standing in church in front of our friends and family, praying a prayer of dedication to entrust our son to God. But in that hallway in the hospital, I was taking him back and telling God I could take better care of him.

In Cook’s ICU, multiple chaplains floated around regularly. You know who they are because nurses are busy running around, the chaplains seem to float slowly around keeping an eye on devastated parents. One of the chaplains was quickly by my side and she escorted me to a room. I screamed, I yelled, I sobbed. For the first time in my life, I told God that He was not good. How was that possible when my son now has a tumor in the middle of his brain, within 15 months of getting severely burned? In that little room, even though every part of my body was telling me God is not good, He still was. He was still working all things for His glory. His character did not change because of how I felt in those especially dark moments.

 The chaplain sat there next to me as I cried, calmly patting my back. She suddenly asked me what Garren’s name meant. At that point, I hadn’t thought about what his name meant in years. When I was pregnant, we found his name in an old baby book, which said it means “Spear Ruler of Strength.” The meaning of his name was very important to us when we had him. And here I was sitting in an ICU room with a chaplain asking me what his name means. I remember the first time my aunt came to see him as a newborn. She walked into my living room and looked at him and said, “He will pierce hearts for God and be a pillar of strength for many”. In that hospital room, even in my crying out and feeling abandoned by God, He was showing His goodness to me.

Later that morning, Garren was wheeled down to the OR and we were able to sit with him before the surgery. Understandably, he was incredibly scared at the outcome, and he looked us in the eyes to tell us goodbye. He was not sure he would make it out the same, or at all. After some very serious and hard conversations, we laid hands on him and prayed over him. We felt the strong loneliness of being in the hospital with COVID restrictions, no one was allowed to come in and physically lift us up in prayer. We felt the absence of my Dad, who had a few minutes before been tearfully insistent that we make sure and lay hands on him, just as he had dealt with any of our illnesses growing up. We felt the absence of Jonathan’s dad who passed away in 2016. He was a pastor and would have definitely used his clergy privileges to be there with us. I don’t think he would have left our sides.

Then the neurosurgeon came in and he asked if he could pray over Garren. It was such a surreal moment, where he took his large hand and laid it right on top of Garren’s head and prayed the prayer of a true believer. A sense of peace filled that room. That doctor took the place of both of our fathers at that moment and was a beautiful picture of the love of God as our Father. I hope one day I will get the chance to tell that doctor how much that prayer changed our lives that day.

Garren made it out of surgery miraculously with only two things that changed him. He doesn’t like Chick fil A or In’ n Out Burgers anymore. I am still in awe at the wisdom God gave these doctors to know the exact pathway to get through his brain, and God guided his hand the whole time. We were released from the hospital that weekend to wait for diagnosis. Jonathan’s oldest brother and his wife live 15 minutes from Cook’s, and they took special care of us during that time. Our diagnosis appointment was set for Tuesday, September 14, but the neuro-oncologist called on Sunday night to tell me that it was cancer, and the one he was “hoping” for. Pineal Germinoma. It was a rare brain cancer that is very reactive to radiation, but that we would do chemo first. The survivability of this one was over 97%. The best part of this news was that we wouldn’t have to do a very risky brain surgery to remove the tumor, the location and that magnitude of a brain surgery would most likely not end well. The neuro-oncologist presented this information in a way that we felt relief more than fear, after how scared we were before the brain surgery. The only way that I can explain the peace we had was God’s provision of that peace. We had a very knowledgeable team at Cook’s that I will forever be grateful for, as well as highly intelligent research team from New York City and Japan. The rarity of his cancer gave our son plenty of attention worldwide to make sure he got the best care possible. Pineal Germinoma starts in utero, before he was born. This cancer is formed by certain cells that are supposed to go to one part of the body, and instead go into the brain. It is almost always found in teenagers between 15 and 17 years old.

Garren went through countless tests, multiple lumbar punctures, and 4 rounds of chemo in Amarillo under the guidance of the neuro-oncology team at Cook’s. Within the first few weeks of chemo, he lost all of his hair and the shock of everything really hit us hard upon seeing the physical effects. He then had 24 rounds of radiation to the brain at the Texas Center for Proton Therapy in Irving. We took turns spending the week with him in DFW over 5 weeks. While waiting in a hotel room in DFW over those 5 weeks, he was able to work on homeschool in order to graduate. Jonathan and I spent wonderful one-on-one time with him during those weeks and we will forever treasure that time, even though the reason we were there was scary. He finished treatment on March 3, 2022, and all of us were together in Irving to watch him ring the bell.

Garren was declared cancer-free on April 14, 2022, with less than 3% chance of any cancer returning. He graduated high school the next month, and he turned 18 that June. We were very intentional to spend the next year focusing on healing: physically, mentally, and spiritually. He continues to have long MRIs and oncology visits every 4 months and will have to have MRIs for the rest of his life.

Our other four kids have gone through the trauma of us suddenly leaving twice with no idea if their brother would return home either time. I am so incredibly proud of my kids and who God is creating them to be. They are compassionate, loving, loyal, and have a heart for God and other people. They have been through so much too, and I know God will use this story in their lives as well.

Garren finally was able to start driving and is living a very normal life now for his age, which we are so thankful for. Our family had the most amazing trip to Disney provided by A Wish with Wings out of Fort Worth. He attends college online with the intent to go into a life of ministry. He is still incredibly social, and I feel like I barely see him now that he is driving. He loves his friends. He is an exceptional young man and always has been. He is loving, loyal, and has a calm spirit. In the burn unit, when he was in unimaginable pain and unable to walk, he said on multiple occasions that he was glad it was him and not his friends. There were times after the cancer he was more concerned about Jonathan and I than even himself. We have asked him this question more than once concerning those years of hardships, “If just one person comes to know Christ through your story, is it all worth it?” His answer has always been yes.