August 9, 2016, Lindsey was scheduled to get her MRI to possibly figure out what was causing her dizziness and severe headaches. This was the day before her sophomore year of high school. I woke up that morning and told Bill that I knew something was just not right with Linds. He kissed me on my forehead and said, everything will be fine. Later that afternoon I picked Linds up to head over to the hospital. We were called back for her MRI. We had to answer some routine questions before they proceeded. I sat there so nervous, praying that everything was alright. Figuring what was causing her dizziness and headaches was from when she had fallen and hit the front of her head a couple of weeks prior. The MRI was finally finished. I took Linds home and I went back to work. As soon as I sat down at my desk, the phone rang and they wanted me to bring Linds immediately back in for a CT scan. Well at that point I was a little frantic. I called Linds and told her I was on my way to get her again because the hospital had called and wanted a CT scan. She asked why and I told her it that it was probably routine. I was trying my hardest to be as normal about it as possible but, inside, I knew that something was wrong. Once she had the CT scan I called work and told them that I was going on home with Linds to wait to hear back from our doctor about the results. My son was mowing grass at the time. I went to him and told him that we were waiting for the results. My sister n law, Gracie and my nephew Isaac had stopped by the house to wait with us. My husband was still at work with no cell service.
When the phone finally rang, I answered it with hesitation. The nurse from the doctor’s office said that we needed to come to the office so the doctor could go over the scans with us. At that point, I went and got Billy Jack and, together, we headed to the doctor. They took Lindsey and Isaac and put them in one room and the rest of us went with the doctor.
Hearing my child has a brain tumor on her brain-stem was not something I ever expected to hear.
Tears started rolling down my face. We were told how serious this was and that they had already started reaching out to different hospitals, to go home and pack. It was important to us at the time to be completely honest with Lindsey. The nurse went and got her so that we could tell her what the MRI results were. She really didn’t say much at the time until she saw her brother starting to cry then she broke down. We were all in disbelief. Bill finally made it to us as we were walking out of the office. This was the day that forever changed our lives.
August 10th, we got up from a sleepless night. We were all still in disbelief from what the MRI revealed. You never think something like this could happen to your family. I kept telling myself that I needed to start packing. But I honestly didn’t even know what to pack. We still had no idea where we were going and how long we would be there. I remember all of us being in my bedroom talking and crying and just trying to figure things out while we were waiting on the phone call. I told my family, at that time, that the devil was going to try really hard to tear our family apart and that we had to keep our guard up against him. As I tried to get my thoughts together, Bill said that he was going to go talk to Christy at our doctor’s office. He was not there as we got the news the prior day. While he was gone, Linds and I started gathering clothes to pack. I remember Linds trying to be as brave as she could but still so scared at the same time. She never wanted us to worry about her. When Bill came back home he said that there were a few hospitals that had gotten back to Christy but it would be at least a week or two before they could see her. Bill said she was still waiting on a few more to get back to her before she wanted us to decide. So there we were packed and ready to go but still not knowing where that would be. As we all know waiting is not something any of us like to do, especially in a situation like this. We finally got the call that St Jude Children’s Research Hospital in Memphis, TN could see her the next day, so obviously, that is the one we chose because we didn’t want to wait, even one more day. Before we left Princeton we stopped by our church for prayer. Pastor Hercey prayed over Lindsey and our family. So there we were, traveling almost 10 hours from our home on the day Lindsey should have started her sophomore year of high school.
We had no idea what to expect, and despite the thoughts that we had imagined, we weren’t prepared for the news we would get when we arrived. We arrived at St Jude at 11:16 pm (ct). We were in awe of how big and beautiful this place was. The Lord gave us such peace on our decision that this was the place that we needed to be. We sat down in an office room where they took our insurance information and asked some other questions. We were then taken to the “Med Room” so they could check Lindsey’s vitals, weight, and measurements. We were so tired and just wanted to go to sleep. As the nurses were getting this information one of them approached Lindsey with a small measuring tape. Lindsey kind of chuckled and looked at me like, “this woman has lost he mind, does she really think that’s going around my boobs?” Linds didn’t say anything to the nurse and just let her proceed. The nurse quickly saw what Lindsey was chuckling about and said, “we are not all that blessed up there.” We needed a good laugh at that point because everything had been so serious. After we were finished in the “Med Room” we were sent over to the Tri Delta to check in. The Tri Delta is like a hotel inside the gates of St Jude where families stay when they first arrive there.
August 11th, we woke up early from yet another sleepless night. Lindsey had appointments all day with the first one starting at 9:00 am. We walked over to the main entrance of the hospital, still in awe of how beautiful this place was. Last night when we walked in, it was so empty, which we thought was so odd. However, this morning was totally different. There were people everywhere. As we stood to wait our turn to check in we noticed these sweet little faces being pulled in little red wagons by their parents. Some were hooked up to IV poles receiving chemo and others were watching movies on their iPads or just sleeping. Lindsey felt so out of place because she didn’t look sick. But we would soon learn she was one of the sickest kids there. As we try to find our way around the hospital we immediately notice that everyone was so friendly and had smiles on their faces. All we could think is how can everyone be so happy? We’re in a hospital with a bunch of sick kids who are fighting for their life.
But that is the beauty of St Jude. They don’t make it about a bunch of sick kids. They try to make everything as normal and happy for the kids and families as they possibly can. The way that we looked at it; it was the saddest yet happiest place there was.
We spent most of the morning in the E clinic. They had Lindsey do the typical neuro exam: Follow my finger, touch finger to nose, walk in a straight line, stand on one foot, etc. They still have not reviewed the scans from Monday but told us they had ordered scans for tomorrow, August 12th. So, after a long day of appointments and blood work we could TRY and relax for the evening. Up until this point we still did not know that the tumor was DIPG (Diffused Intrinsic Pontine Glioma). On August 12th, we were up early. Lindsey had scans at 7:00 am. We were anxious and nervous and hoping these scans would reveal something much different. We were still in disbelief that this was happening to our family. I mean how could our sweet girl have a brain tumor. As we were waiting, I remember praying not only for Lindsey but praying for my mom, Billy Jack and Kadi as they were traveling from different directions to be with us. As Bill and I continued to sit and wait we couldn’t help but discuss and worry about our life at home. We both had jobs and bills still needed to be paid. Responsibilities did not stop because Linds was sick. Obviously, the thought of losing our house did cross our minds. At this point we hadn’t fully given this to the Lord. We were trying to handle things on our own. Lindsey finally came out from the MRI. and we had a few other appointments that morning. We were anxious for 1:00 to get the results. After her other appointments, we headed over to the gift shop to pass some time and bought a few shirts. We were all so tired. The last several days we hadn’t got much sleep. We decided to head back over to the Tri Delta to rest before we got the results from the MRI. No sooner than we got there it was time to head back over to the E clinic.
As we arrived, the child life specialist was there waiting to take Linds with her as the doctors took us to the conference room. The first thing that I noticed was the box of tissues that was on the table. I knew then, that this was going to be bad news. As Dr. Vinitsky pulled the images up on the screen I immediately saw the tumor. I was so numb. Bill grabbed my hand as we listened to everything they were saying to us. Hearing the words, inoperable, no cure, and that the median survival time was 9 months… these words were so cruel. There was just no way that this could be possible. “No Cure?” how can someone say this to you? How can we live in this day and time and there not be a cure for something? I stood up with tears rolling down my face and said, “I hear what you are saying and I see the image with my own eyes. But we believe in miracles and I know the Lord is going to heal Lindsey!”
I then sat down and we discussed how we would tell Lindsey. Bill and I made it perfectly clear that we would not keep anything from her. How could we? She was the one going through it. That would have been so selfish on our part to keep anything from her. And if you know Linds, if she thought for one second we were keeping something from her she would have put us in our place very fast. The one thing that we told the doctors before they brought her in was that we would be the ones to tell her. We would be the ones to tell her that there were no survivors of DIPG. Linds was brought in. She could tell that we had been crying and she sat sown between me and her daddy. She grabbed my hand and her daddy put his arm around her while the doctors proceeded to show the images and explain the tumor and what the next steps would be. Linds being Linds, she looked at us and asked why we were crying. She knew that it was serious but still didn’t know the prognosis. She was ready to leave and go get something to eat. We headed to the cafeteria and sat down. We tried to act as normal as possible but she knew that there was something we weren’t telling her. We told her that we needed to talk but it could wait until we got back to our room. She didn’t want to wait, she wanted to know now. She was very persistent. At that point, Bill started to explain things, knowing that this was not the place but Linds would not have it any other way.
She looked at us and said, “are you saying that I am going to die?” There was no sugar coating it and once she asked that question she could tell by the looks on our faces and the tears in our eyes. That’s exactly what the doctors had told us but not in so many words. I will never forget the look on her face. She immediately started crying and got up from the table. We followed her to the Tri Delta. When we got to the room she completely lost it. She screamed and cried as I held her so tight. We just laid in bed and cried together. But again, Linds being Linds, she got up wiped the tears from her eyes and said,
“Gods Got This!” At that point, I knew this would be hard on her but she was going to be OK. Looking back, I believe the Lord spoke to her and she knew what was ahead for her.
Maybe not knowing everything completely yet, but still knowing. August 13th, my mom, Billy Jack, and Kadi had made it safely to us. We were so glad to see them. One reason being it was Billy Jack’s birthday. It was so nice to TRY and have some normalcy in our lives for a few days before we started the week back up with appointments. Even though it was Billy Jack’s birthday, it was all about what Linds wanted to do, (Billy Jack wouldn’t have it any other way) so we headed to Germantown to go shopping. This was Lindsey’s favorite thing to do, especially shopping for new makeup. Sephora became a weekly shopping habit. If anyone knows Lindsey at all they know that she loved her makeup. We had a great day! We soon came back to the Tri Delta to celebrate Billy Jack’s birthday. Little did Linds know that her brother and mamal both bought her bracelets. She was very surprised to have gotten anything since it was her brother’s birthday. We laughed and cried throughout the day. My best friend and her husband from Kentucky came to see us later that afternoon. As I had said earlier, we still had not given this entire situation to the Lord yet. I believe the Lord had sent Jennifer and Chris to us to help us get focused on Him. Through the rest of that day we prayed and prayed. I’ll never forget, we were all outside of the Tri Delta on the sidewalk, holding hands and praying so hard. It was still daylight and as we were praying the Holy Spirit was moving. Suddenly as we continued to pray the light bulb that was above us exploded (it wasn’t even on). From that moment, we gave it all to the Lord. We knew He was going to use this situation for our good and His glory. Little did we know just how big it was going to be.
August 14th, we were sad that Billy Jack and Kadi had to leave us. Billy Jack started the first day of his junior year of college that Monday and Kadi had to return to school as well. Them leaving us was one of the hardest things we had experienced up to that point. As one could imagine, there were a lot of tears that fell that morning. My friend, Jennifer and her husband were still visiting. We had lunch with them before they had to head back to Kentucky. It was such a huge blessing that they had the opportunity to come and see us. But again, it was just part of the Lord’s plan. He used them to help get us focused on Him through what was going to become a very long journey over the next 32 months.
After saying our goodbyes to Jennifer and Chris we went back to the Tri Delta. My mom was the only one who could stay with us. This girl really needed her momma to be there. Bill and myself were looking at different clinical trials around the world. In our minds, doing nothing was not an option. We had some time to figure things out because Linds would first go through six weeks of radiation. And Linds made it perfectly clear she was not giving in to this and she was going to fight every step of the way with the Lord’s help and guidance.
Lindsey was under St Jude’s care two years to the day. Other treatment options eventually took us to San Diego and Cincinnati Children’s Hospital and Lindsey was under their care the last seven months of her life. Lindsey’s neuro oncology team from St Jude remained in close contact with us throughout the entire journey.