the phone call I never expected

Moms Sharing Miracles is a blog series dedicated to stories of Dayton Children’s patients shared by their moms! If you have a story to tell please email us at stories@childrensdayton.org .

By: Suzanne Booher, Caulin’s mom

Standing in the Lego section of ToysRUs, just three days after Caulin had his tonsils and adenoids removed at Dayton Children’s, I answered my cell phone. I was surprised to hear the voice of Dr. Collins, the doctor that did Caulin’s surgery. My first thought was of how kind it was for him to call and check up on Caulin. Those thoughts quickly turned when Dr. Collins informed me that he noticed that Caulin’s removed tissue looked suspicious and he had sent it to the lab for pathology. He didn’t tell us because he didn’t want us to worry. The lab found malignancy. Caulin likely had cancer. Dr. Collins told me to pack a bag for Caulin and return to the hospital as soon as possible. He told me that they would be waiting for us in the Dayton Children’s Emergency Department. I calmly collected Caulin and exited the store. I remember him asking me why we were leaving and if something was wrong. I mumbled an answer and put Caulin in the car. I then stood behind my car, dialed my husband’s cell phone number while my hands were shaking, and told him about the call from Dr. Collins. The wave of shock that ran through me was like nothing I’ve ever experienced. Our daughter Madison was in 6^th grade and still at school so I called my friends to ask if they could get her off the bus. She was innocently attending school, unaware that our lives were about to change drastically.

I packed our bags, trying not to upset Caulin in the process. He did not like staying overnight at the hospital for one night, let alone multiple nights. My mind was spinning while trying to remain strong for all of us. I gathered some games, favorite items, and our bags and we headed to Dayton Children’s. Inside, I felt like I was going to fall apart. On the outside, I pretended like what we were about to encounter was not a big deal. I did not want to scare him and our faith was strong. It was our job to help protect him and I would soon find that our attitude directly impacted how HE felt. I would find that the “matter of fact” attitude that we used to begin our cancer journey was the same attitude we kept for Caulin throughout many rough days to come.

Caulin and I arrived at the Dayton Children’s ED and I walked to the desk. The kind nurse looked at me, my eyes filled with tears, and she asked if I was Caulin’s mom. She took us right back.

They had been waiting for us.

That moment will never be erased from my memory because it was the moment that I knew something was wrong. I was trying to convince myself on the way to the hospital that there must have been a mistake. Caulin was playing soccer only two days before his tonsils and adenoids were removed. He didn’t look or act sick and he wasn’t pale or bruised. Certainly, they were wrong.

Soon after we were put into an exam room, my husband Larry arrived. He, too, tried to remain calm for Caulin’s sake, masking his fear with courage. After undergoing some blood tests and a physical exam from several different doctors, our soon-to-be oncologist arrived in the doorway. I knew him only because our best friend’s daughter, Ally (pictured with Caulin), had just finished her treatment for leukemia. We had visited several times during her inpatient stays and we knew some of the oncologists because of her journey. Now, one of them was standing in OUR room, for OUR son. My mind was reeling.

I watched Dr. Dole as he examined Caulin. He pressed on his liver and spleen and talked to him in the process. Caulin contently played on my iPad, unaware of what was going on. Dr. Dole then turned to us and began to explain what they had found from the tests. He indicated that we would need to be admitted immediately and they would be doing a bone marrow biopsy in the morning to determine exactly what kind of cancer Caulin was facing. I can’t tell you my exact reaction at that point, but I do remember feeling like everything around me was moving in slow motion. They took us up to the oncology/hematology unit and Caulin was admitted. We walked the same halls that we had been down several times before to visit Ally, except this time it was for Caulin. They welcomed us as if we were family and the nurses doted over Caulin. They brought slushies and games and showed him how to use the Play Station in the room. It wasn’t until evening that he asked how long he had to stay. “A few nights,” I told him while choking back the tears. He still did not know why he was there.

The next day brought the news that started our journey. On February 9, 2012 Caulin was diagnosed with high-risk T-cell Acute Lymphoblastic Leukemia (ALL). He had a lumbar puncture, bone marrow biopsy, and a surgery to place a port in his chest for the administration of chemotherapy. It wasn’t until the third day that we were at Dayton Children’s that I told Caulin that he had cancer. Heartbroken, I watched my 9-year-old son process a very adult problem. I explained it to him in terms of what we needed to do to get rid of the leukemia. There was never an if, it was always a when. I felt like his innocence had been taken away. Every part of me questioned why a child had to deal with this kind of challenge. Telling Madison was equally as difficult and her reaction would have brought even the strongest person to tears.

During our stay, Larry and I supported Caulin as his compassionate nurses, wearing protective gear from head-to-toe, accessed the port in his chest with a small needle and administered chemotherapy to him. He earned Beads of Courage for a necklace for each blood draw, biopsy, scan, procedure, chemotherapy administration, clinic visit, and inpatient day. By the end of that week, Caulin had a full necklace of beads. Those beads would come to be one of our most prized possessions. Multiple people came to the hospital to visit Caulin during his stay, and as the news spread more and more people began to pray for him.

Within a month of treatment, Caulin was not responding typically to the chemotherapy regimen. Further testing showed that he had a genetic translocation, making his type of leukemia more resistant to treatment. Dr. Dole presented us with a choice. Caulin could remain on the current chemotherapy protocol and pray that he would not relapse. Or, we could opt for a bone marrow transplant at Cincinnati Children’s. Due to the high chance of relapse, we decided to go to Cincinnati Children’s for the transplant.

Caulin continued with chemotherapy treatment at Dayton Children’s, often missing days of school or playing outside due to illness. On August 21, 2012 after four days of total body radiation and three days of intense chemotherapy, Caulin received bone marrow from a perfectly matched unrelated bone marrow donor. It is the day we call his REbirthday because it was his chance at new life. Caulin was put into isolation and remained in the hospital for the next 42 days during which he became extremely ill as his body learned to accept the new bone marrow. I rarely let Caulin see my brokenness, escaping to the hospital chapel to pray for his perfect healing. Larry and I worked together to keep life as normal as possible for Madison. With the help of family and friends, we were able to allow her to remain at home while one of us lived at the hospital or Ronald McDonald House with Caulin. Life had to continue despite what we were facing.

We felt it was essential to help Caulin remain a kid during the entire process so we brought games, a nerf basketball hoop, puzzles, and Lego’s to the hospital when we stayed. We always pulled up the blinds and let the sunshine into the room, and encouraged Caulin to get out of bed at least once daily. Caulin received instruction from a tutor at the hospital so he would not fall behind on his 4^th grade work. His unbelievable determination pushed him to do his school work even on days when he was not feeling well. His perseverance helped him take control of his situation and we set goals for him to work toward. We were honest with him about the procedures they were doing and I taught him about his disease and the medicines he was taking. In the process, Larry and I learned more about cancer and the immune system than we ever wanted to know.

After almost a month of healing, a fairly common side effect from a bone marrow transplant occurred… Graft vs. Host Disease. Caulin was treated with medication to suppress the condition.

Tragically, due to a mixture of reasons, Caulin developed cancer again.

Three days before Christmas, Caulin was diagnosed with lymphoma and began fighting cancer for the SECOND time. He spent Christmas day, his 10^th birthday, and the first month of 2013 in the hospital. The isolation was becoming increasingly difficult and our path was uncertain. The effects from the chemotherapy were even more devastating than the bone marrow transplant. Miraculously, after only 1 ½ rounds of chemotherapy and a stay in the PICU, Caulin’s scans showed no evidence of the lymphoma. Much like the day when we arrived at the Dayton Children’s ED for his initial diagnosis, it was a day I will never forget. Shocked by the clear scan, the hopefulness in our doctor’s voice was God’s way of telling us, “I told you I would heal him. All I needed you to do was trust me.” He completed two more inpatient rounds and has been chemotherapy-free since March 2013.

By the time Caulin was finished with treatment, he had earned five full necklaces of Beads of Courage, marking all of his accomplishments. Those beads are like his Olympic gold medal. He earned them.

After a long, intense year, Caulin began regaining his strength. Our family was finally living under the same roof, and we all gained a different perspective on life. Caulin returned to school in 5^th grade, and he is now a Dayton Children’s Ambassador. We started a charity with our friends, Jerad and Janel Barnett (Ally’s family), called Together We Fight to help other families diagnosed with cancer at Dayton Children’s. Because we understand how it feels, our mission is to provide support to other families in the same situation. Yet, most importantly, we continue to try to live each day thankful, because you never know when you’ll be standing in a toy store and get a phone call you didn’t expect.