Saturday, March 26, 2011


The doctor and his "team" came into Tyler's room, and I wasn't sure how to feel. Why did his whole team join him? Was it unexpected bad news? Was it routine when providing a diagnosis? I suddenly felt sick to my stomach. I was scared, I knew something wasn't quite right. Then he explained to us that although he consulted so many prestigous doctors around the country, whose opinions' he truly trusted, no one could agree on a diagnosis for Tyler. I am sure this was a severe disappointment to him, but because he was Tyler's doctor, he would have to make the decision on what to do. We all knew that whatever he decided, Tyler's fate was truly in his hands, but we trusted him. So...he made the very difficult decision, which he later told us was a gut feeling, to treat Tyler as if he was diagnosed with ALL, which is defined as Acute Lymphocytic Leukemia. He also added that during all the testing that had been done, they discovered that Tyler had T-Cell ALL, which is an extremely aggresive form of Leukemia and more rare. I was thinking to myself, "Of course it's rare, everything about Tyler's case is rare". I couldn't stop wondering why this was happening to us. I really didn't know what T-Cell ALL meant in terms of cure rate. But I did later find out that this form of Leukemia is harder to treat and attacks the t-cells, thus the name. Because of the obscurities in Tyler's case, there were no known treatment protocols in place. So, after making the tough decision to treat Tyler as if he had T-Cell ALL, and knowing that he had Myloid cells present in his bone marrow, the doctor created a protocol for Tyler. This protocol followed many of the same procedures as the original T-Cell ALL protocol but he added more intense aspects to it. I was handed a binder with 2 1/2 years worth of treatment for Tyler. But we needed to get past the first step before we even proceeded and that was to get Tyler into remission.

In order to begin the Induction phase of the treatment protocol, Tyler had to have a central line placed in his chest which is called a Broviac device. This will remain in place for the duration of treatment and will help facilitate the administration of chemotherapy which occured on a weekly basis for a 2 1/2 year time frame. The Broviac device that Tyler received had tubing the was placed under the skin near his corroded artery and exited his body through a small hole in his chest. The tubing that protruded from his chest had two 2 lumens, or 2 portals. They hung about 2 feet from his body but we twisted and taped the tubed to his chest to keep them in place and under bandaging. I had to clean the skin around the hole every other day,  in a very meticulous fashion to prevent infection, which was something that Tyler ALWAYS resisted. It was not comfortable for him and it truly made me nervous that he could get an infection based on a mistake I could make with cleaning. So, the Broviac was in place, and now we could begin chemotherapy.

The first phase of treatment is called Induction. On December 20th, 2001, Tyler was given his first round of chemotherapy. He was givent the following agents: Vincristine, Doxorubicin, Prednisone, and Intra-thecal Methotrexate. However, because we were not sure of his reaction from these chemotherapy drugs, Tyler was given antiemetics to help prevent nausea. He was also always given Bactrim, routinely, which is an antibiotic. His first round of chemotherapy was complete. The most memorable moment of his first treatment was when Tyler came back from the treatment room, he felt hungry and insisted on eating Cheetos, which had always been one of his favorites. He probably ate half the bag and then mentioned that he was feeling a bit sick to his stomach. We knew it was the chemotherapy and before you know it, the cheetos Tyler had just eaten were on the floor. I don't think he ate Cheetos for a long time after that.

As we approached Christmas day, we were told that if Tyler's blood counts were in a safe level, we would be able to go home. Every morning, a nurse came in to draw blood to measure these counts. The numbers they paid attention to the most were the ANC, which I mentioned earlier, the white blood cell count, red blood cell count, platelet count, and I am sure other numbers that were less significant to us.  It was Christmas eve and Tyler's numbers looked good so we were able to go home and enjoy Christmas morning with our family together. Because his ANC was still pretty low, and vulnerable to bacteria, he was not able to leave the house that day, nor have any visitors with any illness inside the house. We were so careful because Tyler refused to wear a mask which would certainly be helpful and we didn't want to end up in the hospital so soon after we left.

It was a bitter sweet day, Christmas 2001, because although I had my son home, which made me so happy, I was still so worried about whether by the end of Induction, which lasted 1 month long, Tyler would go into remission. This was one of the main markers to whether Tyler would make it or not. I tried not to think about it, that day, and focused on how important my family was to me, and told myself at that moment to NEVER take anything for granted.

No comments:

Post a Comment