“Tyson is our smallest little guy. He’s the youngest of 4 and I’ve never figured out how so much personality fits inside such a little kid. Tyson was 2 years old and full of life and always playing or running around constantly except for the rare moments where he would wear himself out and find his mama to cuddle and take a nap. He loved playing with his older brother and 2 older sisters.
Halloween morning Tyson woke up early crying that his tummy was hurting. My wife Lacey rubbed his tummy to comfort him and felt a hard lump in his stomach. We dropped the kids off at school and took him to the ER to have it checked. In the ER they scanned him and then we waited for the results. Hours passed without an update. The big kids were getting home from school soon, so we decided to have Lacey go home to help get them ready for trick or treating. The doctors at the local ER didn’t seem to know what it was so they said they were going to have Tyson transferred to a well-known children’s hospital nearby that could help us. At the new hospital Tyson was given his own beautiful room. We played and laughed as I tried to make the best of a long day at the hospital knowing at this point that we were going to miss trick or treating with the family. Doctor HaDuong then entered the room. Tyson and I had been sending pictures to Lacey and the energy in the room was playful, but I could sense a change as Dr. HaDuong introduced herself. The conversation was short, ‘I’m sorry to have to tell you but Tyson has cancer.’ She proceeded to share that they’ve looked at the scans and Tyson has a 6-inch tumor in his liver and it didn’t look good. I’m sure so much more was said as she reassured me that they would be doing everything they could to save Tyson but in that moment my mind went black. The words shared disappear and I can only remember the emotions. The doctor quickly left after sharing the bad news.
I was alone most of that night. I didn’t share anything with Lacey for a while because there was nothing we could do about the situation that night and I didn’t want to ruin Halloween for the other kids. So I waited. I remember the loneliness, the helplessness. I remember the intense fear. God, that bitter fear. Not a fear that makes you want to run away or fight, but a fear of loss. It’s a fear that makes time stop. Everything slows down as you instantly remember every special moment with our baby and how much we loved him. You see every smile and happy moment as if every memory fit into one picture that you can see all at once. In that moment I was filled with so much love for our baby and the fear of losing him became unbearable. It filled my soul as Tyson rested in my arms until it couldn’t fit inside me anymore and caused my body to shake. The weak trembling hands and waterfall of tears all just releasing the emotional pressure inside as I lay alone next to Tyson. Later that night I called Lacey and shared the news and tried to comfort her as she went through all the same emotions I had just experienced. That was the longest night of both of our lives as Lacey and I were separated by distance but together in our pain and cried together. Our entire lives changed that night.
That week Tyson had his first surgery to biopsy the tumor and have a port placed in his chest. The port was a device placed under the skin that accessed his heart so when he was administered chemotherapy the chemo would go directly to his heart and quickly transferred to every part of his body. The doctors brought Lacey and I into an office after a few days and said they had the results back. Tyson had stage 4 Metastatic Hepatoblastoma. A type of cancer that began in his liver and had spread to his lungs. He had at least ten nodules on his lungs. Once the cancer has spread the chances of survival go down significantly. By this time the doctors had been feeding us details every day and so we had an idea of what it was, but the confirmation still hurt. In that very moment we were then asked what care we wanted to give Tyson. We were given two options. One was the normal standard of care and the other was an experimental treatment. We were told to take as much time as needed to decide but to not take too long since they needed to start chemo as soon as possible since the cancer had already started to spread. We opted for the recommended standard of care and the next day Tyson received his first dose of chemo.
Over the next week Tyson did well and was allowed to come home. We were combing his hair and large chunks of his hair started falling out. It was all over the place and was getting in his eyes. During this time Tyson was uncomfortable with pictures and didn’t like that he looked sick. His hair falling out only made pictures more uncomfortable. However, Tyson loves to play matching games and always wants to match Lacey or I so when his hair started falling out we shaved his head to manage the mess and I shaved my head to match Tyson. Tyson loved it.
Chemo was brutal. Tyson threw up constantly and it became impossible to keep food down. During this time Tyson kept losing weight. He had always been a solid kid but he dwindled away to almost nothing. It became hard to hold him as we could feel his frailty, nothing but bones and skin. His thick cheeks had disappeared. He looked like a living skeleton. The chemo was proving to be effective but Lacey and I started to wonder if he’d survive the chemo treatments long enough to beat the cancer.
During this time Lacey and I were constantly switching places so we were rarely in the same place together. One would stay at the hospital with Tyson and the other would be home with the big kids. Once the kids at home made a video for Tyson wishing him a good night. Thinking it would cheer him up we shared it with him and his eyes immediately filled with tears as he saw his siblings at home. ‘Home please. Home PLEASE!’ He would get so homesick being in the hospital.
Occasionally during this experience, the pain would get to Lacey and she’d cry or feel scared. In these moments Tyson would often notice and check on her, ‘Okay mama?!’ Or sometimes when it was my turn to stay with him he’d share how mama had been feeling sad, ‘Mama, sad.’
During Christmas season, some dear friends put on an event at the hospital where they brought Santa to the hospital and all the kids got to meet Santa and get gifts. We took Tyson to meet Santa and attend the dinner after. Tyson loved his gift but when we tried to eat dinner Tyson still couldn’t eat without throwing up. Sometimes when Tyson’s body wouldn’t keep food down, he’d feed Lacey or I his food and vicariously eat through us. This Christmas dinner Tyson wasn’t feeling well but enjoyed seeing all the other sick kids that looked like him. He matched them. Since Tyson wasn’t feeling well he started feeding his mama his Christmas dinner and sharing it with her to make sure she was getting her food. I think he would notice how little Lacey and I would eat ourselves at the hospital. When you’re there you almost forget to take care of yourself, but little Tyson would look out for us.
Tyson once had a complication from the chemo that caused him to be unable to have any food or water in his stomach or intestines for two weeks. During this time, he couldn’t eat or drink anything and received all nutrients through an IV. He would beg for food. With tears I tried to explain to a baby that he couldn’t eat because the doctors said it would hurt him. After negotiating with him for hours we finally agreed that he could have cookies if he would just hold them. I gave him a bag of cookies and watched him take a cookie out and smell it as he breathed in heavy and breathed out expressing his pleasure, “Mmmmmm.” Then he put the cookie back in its bag and just held the bag the rest of the week until he was allowed to finally eat the cookie. Food became a comfort for Tyson. He could rarely eat the food but loved being surrounded by it so we always surrounded him with anything he wanted, and he would have his bed full of all his treats that he’d hold and look at but rarely eat. He became pickier as time went on and eventually decided that he only like orange colored food, haha.
During Tyson’s time in the hospital he wasn’t allowed visitors since it was winter and flu season, so he was always alone with either Lacey or I. To make Tyson’s time in the hospital pass we’d take him to the play room. In the play room there was an awesome car Tyson could ride in. At night when people were out of the halls, Tyson and I would race through the halls. I’d hold his IV stand in one hand and push his car with my other hand as we’d race through the halls as fast as we could, skidding around corners and trying to avoid hitting the nurses in the hall. Tyson loved it!
Tyson would often look at pictures of better days in Lacey’s phone as he sat in the hospital and focused on a visit we took to the zoo once. There were pictures of him running around the zoo and visiting the gorillas. This image of being at the zoo became a focus for Tyson. He’d spend his entire time in the hospital asking to go back to the zoo. We even brought him a map of the San Diego zoo and he’d plan his next trip to the zoo. When he was allowed out of the hospital we’d often take him to the zoo early before other people were there and let him emotionally heal by sitting outside in the sun for a minute and cuddle us as he watched the gorillas play.
When Tyson was allowed home his sister Eden would always cuddle him and read him stories as she held him. The big kids were so good to him and did anything they could to help him. This was an extremely difficult time for our family but there was always so much love in our home. I remember being home once and watching the kids play. We often have music on at home and this day a Lukas Grahm song came on. In the song there is a line that says, ‘we’ll never really be alone because we got a lot of love and a happy home.’ I began crying as I felt the comfort of knowing we’d be okay regardless of how things played out for us. We have a happy little family and a lot of love and no one can ask for more. We learned to appreciate all the small moments and every day we got to see each other was special just because we were together. It didn’t matter what we were doing and knowing we might not always be together made us value every moment. It gave us a new look at life that I’ll always appreciate. Those were special days and in those moments we couldn’t have been happier!
During Tyson’s treatment’ we scheduled an appointment with a doctor to discuss the possible need for a liver transplant. We were told that Tyson would not be a candidate for a liver transplant since he had nodules on his lungs and until the nodules were gone there was no point. He’d most likely die anyway and it wasn’t worth the risk of giving a liver to a kid with such a low chance of survival. We understood the logic behind it but that was a rough day. We were told that if the nodules weren’t killed by the chemo we may want to consider Tyson’s quality of life and just enjoy the last days with Tyson rather than putting him through continued treatment. We were determined to figure it out though. We contacted a doctor out of Sloan Kettering who helped advise us on treatment and eventually the chemo killed all the nodules on the lungs and the tumor in his liver shrank down to 4 inches and the surgeon determined that he would be able to remove it. Tyson went in for surgery and had 60% of his liver removed.
Tyson had 3 more rounds of chemo post-surgery. Once chemo was over Tyson started putting his weight back on and began to recover. Every year we take the kids to Yosemite for family vacation. Tyson was starting to recover and was feeling better by the time we went to Yosemite but still a little frail. There is a lake where kids jump off a large rock in the middle of the lake and Tyson saw these kids jumping in the lake. He asked to jump off the rock, so I took him out with our other kiddos. One by one the other kids jumped in the water then Tyson and I jumped in together. After so much time in the hospital it was great to see Tyson get his adventurous spirit back and it felt amazing to be making new happy memories outside again.
Surprisingly now Tyson is doing great! He has no signs of cancer even though he still gets regular checkups. Each checkup is still very nerve-racking since there is always the chance that the cancer can come back, and we’ll need to go through it again. But for now, everything is good and we’re still enjoying every moment together.”
This story was submitted to Love What Matters by Jake and Lacey Bredsguard. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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