I have been contemplating this post for quite some time. One year ago this weekend is when we found out Tyler has leukemia. (You can read my posts from those few days here and here.) He had been so sick. He was just miserable. He is generally very easy going and even when he was sick, he was usually still happy. This time was different. I took him to the doctor, they sent him for blood work but figured he had the flu. I remember being sad that he had the flu. I remember hoping that he had something else, something they could give him an antibiotic for....maybe an ear infection or strep throat.
Brent was out of town the day I took Ty to the doctor. I remember calling him after the kids and I made the trek out in the cold to the doctor and the lab for blood work. I was scared. Tyler wouldn't move his arms. He was in agony. I remember telling Brent that something was very wrong. I am not generally one to freak out. But I can clearly remember being worried.
The day we found out was Friday. Tyler had a miserable night Thursday night. I was up with him most of the night and finally got him to sleep a little. I was exhausted. Nate was still really tiny and had only been home for two months. He was still so new, and still had so many unknowns medically that I was scared he would also get sick. On Friday morning I had to have Emmalee feed Nate because Tyler would not let me leave his side.
Brent took a cab home from the airport early that afternoon. I have never been so thankful to see him. He came in and I told him that Tyler was still so sick. I told him how worried I was. He just sat down and held Ty and I know Ty was glad to see his Daddy. Brent looked at me and I remember telling him that I felt something was very, very wrong. He felt it too.
When the phone rang, I wasn't fast enough to answer it. I checked the voice mail and it was a message from Dr. Katz. Not from Dr. Katz' office or from one of the nurses; it was Dr. Katz himself. That immediately set off alarm bells. The doctor never calls. Someone in their office calls to tell you that your blood work came back normal. When the doctor calls, that makes your heart skip a beat. I immediately called back and Dr. Katz started by asking how Ty was feeling. I could sense that he wanted to say something but wasn't sure how. After a couple of minutes of small talk, he asked me if Brent was home from his trip. I said yes. He asked me to sit down. He then said the words that every parent dreads. He said, "Jodie, I think Tyler has leukemia." I asked him to repeat it. He said it again. I sort of shut down. I know I listened to what he was saying but I don't remember much of it. What I do remember is him telling me that he had already called the hospital. They were expecting us. They had to run more tests. They had to determine what kind of leukemia he had. Brent saw the look on my face and I mouthed the word 'leukemia' to him. His face dropped. We both got teary eyed.
The next few hours are a blur. I hung up with Dr. Katz and called my friend Sue. She was at our house within the hour to pick up Emma and Nate. We got to the emergency room and sure enough, they were waiting for us. Everyone was so nice. They started asking all kinds of questions. They took so.much.blood. They took x-rays. We prayed, we cried, we worried. We didn't understand right away that they would admit him and we wouldn't be coming home for at least a month. We were numb and scared.
By the time they got Tyler admitted and up to his room, it was after midnight. I sent Brent home. I sat up and talked to Laura, Tyler's amazing nurse. Tyler went to sleep. Then I cried. The grief was overwhelming.
The rest of the weekend was spent trying to understand what was happening. We met with oncologists and surgeons. We called family and friends. We prayed, we cried and we worried. We tried to come up with some sort of game plan for the other kids. We immediately had help from friends. I don't know what we would have done without all of them!
On Sunday Tyler had a bone marrow biopsy and we found out that Tyler has Acute Lymphoblastic Leukemia. We learned about the treatment protocol and how it all worked. We met with more doctors. That night I made one of the most difficult phone calls I've ever had to make. I called Tyler's birth parents to tell them. That was agony!
Tyler spent five weeks inpatient starting his chemo therapy, having surgery, having more x-rays and tests, going from bad to worse and back again. He was a trooper through it all. There were days that I would just sob, especially at night after Brent had left and I was alone in the dark. Some days were unbearable. Ty was pretty much confined to his room because he was neutropenic for so long. He didn't move off the bed for several days because he was so miserable. It was not easy to see him so sick.
After five weeks we came home and enjoyed a week away from the hospital. It was wonderful! Tyler was able to celebrate Emmalee's birthday at home and we were so happy to be together as a family. He went back into the hospital for what was supposed to be a five day stay. It ended up being more than two weeks. He had a horrible reaction to one of the chemo drugs and we nearly lost him. He coded late one night. He suffered from Stevens Johnson syndrome and the chemo burned him from the inside out. He had blisters and sores all over his body. It was torture to see him in so much agony.
There have been a few other hospital stays along the way, mostly for infections. Through it all, Tyler has been strong. Sometimes he is stronger than we are.
One thing I know for sure is that we could never have made it through this past year on our own. Through it all we have had friends and family to support us. We have received cards, letters, emails, gifts, monetary donations; many from people we don't even know. We have always had someone there to help with the other kids, to bring in meals, to help in any way we have needed. We have had amazing care from doctors and nurses, social workers and parent support groups. And we have met some incredible families who are also sharing this journey. I remember telling our social worker in the very beginning that this isn't a team I would ever wish to be on but since we are, I am so thankful to know all the other players! They have all become like family to us and I can't imagine trying to get through this without them!!
We have also been so blessed by our kind and loving Heavenly Father. He has put the people we need most in our path. He has answered so many prayers. He has always been there to love and guide us.
Through it all, Tyler has been incredible. Yes, he has been sick. Yes, he has been angry and upset and frustrated. But he has also been amazingly forgiving, loving and strong. He has shown us what it means to persevere. He is a great example to all of us!
In one year from now we will be nearing the end of this battle. I am truly looking forward to that day. I pray that this coming year will be routine and uneventful. I pray that we will make it through to the other side and never have to face this battle again. I also pray that we will never forget where we have been and how it has made us stronger. Above all, I pray that we remember how precious life is and that we never take one single day for granted.