The end of church camp not only meant that summer was coming to an end, but it also meant that the school year was just around the corner…little did we know that our lives were about to change in the biggest way possible. July 24 was the day that our lives, our priorities, and our walk with the Lord began to shift.
July 24, 2014
The babysitter called me that Thursday afternoon, I could hear Cole crying in the background, she told me that Cole had been crying uncontrollably and she could not figure out why. Puzzled by what it could be, I drove across town to check on him. When I arrived, he was still crying, his cheeks were pink, and he immediately reached out his arms for me. I observed him for a few minutes; he was holding his neck while pacing around the room saying that his “neck hurt.” The nurse in me noticed that he had full range of motion in all of his limbs, he wasn’t vomiting, no fever, and there really wasn’t anything noticeably abnormal other than the crying. He eventually calmed down, but I decided to take him on home to rest. I simply chalked it up to maybe he just had a crick in his neck. We continued about our day at home and it wasn’t until later that evening he had another episode of crying while holding his neck. At that point, I decided that if he wasn’t better by the next morning, I would take him in to see his pediatrician.
July 25, 2014
Friday morning started out as a pretty typical morning at our house, but it wasn’t long before Cole started fussing and crying, complaining his “neck hurt” again. The fussing lasted approximately 20-30 minutes, and then he went right back playing again. I finally convinced myself to take him in to the doctor, but still, I second-guessed myself the entire drive to the clinic. With school starting the next week, I knew I needed to go ahead and take him to be seen. Of course, Murphy’s Law kicked in and he was in a great mood from the moment we walked in the door. I remember telling our doctor, “I know you’re going to think I’m crazy, BUT…he really was just crying a little bit ago.” Our pediatrician listened to my concerns and examined him, almost exactly the same way I had done the day before. She didn’t notice anything noticeably abnormal either. We were sent home with orders for Ibuprophen and rest for a possible crick in his neck.
July 26, 2014
We tried our best to take it easy most of the day Saturday. Cole continued to have 3 or 4 fussy episodes throughout the day Saturday, but we doctored it with Ibuprophen, assuming we were treating a crick in his neck. Each time, after given medicine, he would calm down and go back to playing. To most people these episodes could pass for a typical two-year-old temper tantrum…
July 27, 2014
Sunday morning we attended church then drove out to my parent’s house to visit for the afternoon. Cole had a few fussy moments throughout the day, but nothing more than what we had already experienced the past few days. We returned home later that evening to get ready for the workweek ahead. On the ride home, Cole began having a fussy episodes. My assumption was that he was just tired and irritated that we were headed home. This wasn’t the first time he had gotten upset wanting to go back to grandaddy’s house. While unloading the car, it didn’t take long to figure out that this was not a typical “tantrum” cry. I walked around to get him out of his seat, and I noticed that his cheeks were much more flushed than usual, and I also noticed that the area around his lips had a really pale/blue tint. I took him inside, where he began holding his stomach and saying that his “belly hurt.” I examined his stomach and I noticed that he had a protruding lump, about mid abdomen, just below his ribs. I told my husband that something just wasn’t right. Within about 10 minutes of being inside Cole calmed down, and he almost immediately fell asleep. I decided to let him rest for the night, and I would make a trip back to the pediatrician in the morning. Kyle and I stayed up discussing a whole list of possibilities that could be going on. I was now convinced that he could have possibly swallowed a toy, it went down his throat (which would explain the “neck hurt”), and now it is in his belly, (which would explain the “belly hurt”). In my mind, I went to sleep thinking that the worst-case scenario is waiting a few days for this “toy” to pass, or even possibly requiring surgery to remove it.
July 28, 2014
Monday…my daddy’s birthday! We headed back to the pediatrician’s office. I updated the pediatrician on the events that happened over the weekend. I also presented my new theory that he had swallowed a toy. I explained that Cole went from complaining about his neck to now complaining of stomach pain. I lifted his shirt to show our pediatrician the protruding spot on his belly, and I could immediately see the concern in her eyes. She called in another doctor to examine him, and then another… Of course, the nurse in me knows all of the possibilities, but still at this point I was convinced that he had a toy in his stomach and we were most likely about to have to have surgery to remove it!
Our pediatrician sent us immediately over to the hospital for a CT scan. I called Kyle to inform him of what was going on, and he met us at the hospital. The entire CT scan experience was quite traumatic for all of us. Cole was crying and screaming…I’m pretty sure I was also crying and screaming! When the procedure was over, we asked the nurse when we would know the results. The nurses told us that the radiologist was not there, but they would send the scans to be examined. We were told that if they saw something urgent then we would probably hear from our pediatrician pretty quickly; otherwise, we could just contact our pediatrician in the next few days.
Well…they weren’t kidding about being quick. As soon as I walked through the door at my house, my phone rang. It was our pediatrician. She asked if I was sitting down, not even thinking twice about this question, I told her we had just gotten home from the hospital and were trying to get everything in the house. I remember that I stopped right there in the doorway to try to listen carefully to what she had to say. I don’t remember her exact words, but she proceeded to tell me that Cole had a mass on his liver…one of my first questions to her was, “like a TOY mass?” I heard her say “No, it’s not a toy,” and I don’t remember much of what she said next, but I do remember making eye contact with Kyle sitting on the couch and the tears just started falling. It took a minute to get myself together, but I was eventually able to ask, “How to we remove it?” “Where do we need to go to get it treated?” “Will I need to call and tell them I won’t be at work tomorrow?” Of course our pediatrician didn’t know a lot of the answers to the questions, she just told me that we needed to pack a bag and decide which pediatric hospital we would like to be sent in the morning to hopefully find some answers.
July 29, 2014
Over night, we made the decision to head to LeBonheur Children’s Hospital in Memphis. After a long 2 days of tests, procedures and an ICU stay, we were told by his doctors that they were 95% sure that Cole had a rare type of cancer called Hepatoblastoma. With only 150 other cases currently in the US, doctors wanted to confirm this possible diagnosis with a biopsy of the mass in his liver.
August 4, 2014
Cole underwent a liver biopsy and chemo line insertion procedure at St. Jude. With the results from the liver biopsy, doctors were then able to confirm that Cole did, in fact, have Stage IV Hepatoblastoma. Hepatoblastoma is a type of liver cancer that usually affects children younger than 3 years old. Stage IV diagnosis means that the cancer had already metastasized (spread) to his lungs. Our doctors told us that the most common site of metastasis for this type of cancer is the lungs. We were extremely blessed that the spots in the lungs were really small.
August 7, 2014
Cole began chemotherapy treatments just 3 days later. Our doctors followed a “non-protocol” treatment plan, which basically means that everything was a “trial and error” treatment. The treatment plan consisted of 10 weeks of chemotherapy with the drugs, Cisplatin, Doxyrubicin and Carboplatin. Each treatment consisted of a week long stay at St. Jude. Our days were filled with chemo, isolation, masks, therapy, blood draws, mouth sores and each other.
November 11, 2014
Dr. Langham, at LeBonheur Hospital, performed surgery to remove the primary tumor in his liver. This was a 7.5 hour surgery… and one of the longest and scariest days of our lives! We followed up with 3 more chemo treatments after surgery just to make sure every bit of cancer was gone.
January 5, 2015
Cole’s very last chemotherapy treatment. There has been no sign of cancer in his lungs or liver since then! Praise the Lord! Cole is now back to being a normal energetic little boy. He does have some high-pitched hearing loss because of the chemo treatments he received, but it’s not even really noticeable at this point. We will continue to monitor this frequently to be sure hearing aids will not be needed in the future. Cole is now in preschool, he is happy and loving life. Although we continue to follow up appointments and scans, he doesn’t seem to remember the experiences we went through 2 years ago, but we often show him his scar and remind him. When people ask him about his scar he tells them, “God saved me!” …and to us, that’s really all that matters!
2 Corinthians 4:16-18
16 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. 17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, 18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.
We know that God always has, and will have, a plan (good or bad), and we want to be certain that He shines through our story! We thank you for following Cole’s story and we would like to ask for your continued prayers… And please, when you share things about our sweet Cole, be sure to share things about God! We have seen so many amazing things throughout our journey, and we want to give God ALL the glory! God is the true healer in this situation!