July 11, 2009 Several weeks ago, I received an email from a friend in West Tennessee letting me know that an 8-year-old girl in his neck of the woods was just diagnosed with ALL. He passed on her Caring Bridge site address and I’ve checked in on her periodically since. Her name is Kinsee and she has T-cell ALL, which I knew to be more rare and more difficult to treat than most B-cell ALL’s (Tanner has pre-B cell ALL). This means a more aggressive treatment plan and a lower success rate. I was so sad for this family, but was captivated by the spunk of this little girl. She often writes her own journal entries, which hilariously, are all about food, since she is still on the aggressive steroids Tanner just finished.
Tanner and I pray every night for Kinsee, our friend Lily who is 8 and has pre-b ALL just like Tanner, and Bill Johnson, an adult fan of “Friends of Tanner,” who is going through cancer treatment. These are our known friends with cancer and we feel an odd kinship with them, though we have never met Bill or Kinsee.
Tonight, I went to Kinsee’s journal to check in on her progress. It had been a while and so I read back through a couple of weeks’ entries. My heart sunk. It has been determined that Kinsee has a very rare type of T-cell leukemia, known as “early” T-cell leukemia. I racked my brain, trying to remember if, in all my research about ALL, I had ever come across this type of T-cell ALL. I couldn’t. I googled it and found an press release dated Feb. 2009 saying that St. Jude, in conjunction with some Italian health authorities, have just discovered that this type of leukemia exists. It has previously been lumped in with all T-cell. Sadly, it is associated with a poor prognosis.
John and I sat on the sofa as I read him the press release, so sad for this family and so thankful that we have had such good news for Tanner’s outcomes at every turn. I said to John, “How do you hear that kind of news about your child?” He thought for a moment and said, “I think people probably ask themselves that same question about us.”
I remember hearing for the first time from the doctor that Tanner might have leukemia. It was, literally, inconceivable. She had back pain, not leukemia. We thought maybe kidney stones, appendicitis… but leukemia? It came out of left field and was just the most surreal, unbelievable thing. When the doctor first mentioned it, I was by myself with Tanner in the ER. I waited until John got to the hospital to tell him, because I was afraid he would wreck the car on the way to the hospital if I told him over the phone. When our pediatrician arrived at the hospital that evening and told us to “prepare yourselves for the fact that it is probably leukemia,” I had such a visceral, physical reaction to those words. I sobbed, I shook, my teeth chattered…
But, over the next few days, while we waited for them to rule out any other options and for the results of the bone marrow biopsy, which is the definitive test for leukemia, we slowly began to accept the idea. I couldn’t tell you how… you just do… because you have no choice, really.
So, I imagine this family hearing that their sweet little girl’s prognosis was much worse than they originally thought, reacted much the same… they sobbed, they shook, they shook their fist at God, and then they accepted it… because they have no choice.
When you child is sick, they need you plain and simple. It is the most natural thing in the world to respond to that need; it’s not heroic or extraordinary, it’s just what people do.
There are no Mother Teresa’s here at the Page house. We are just putting one foot in front of the other because we have to, and because, after a period of time, you accept what is in front of you, and this becomes your new normal. We get tired, crabby, fed up, frustrated and exasperated just like all parents do. And, we laugh, play, get silly, and goof off, just like all families do. Cancer doesn’t change that.
With this blog, I try to resolve my feelings at the end of every day. I try to find the bright spot that maybe wasn’t so evident in the thick of the day. I choose to focus on a moment, however small, that was beautiful, or poignant or sad or gutwrenching and pull out of it what was good, or what can be good tomorrow. It’s just how I, personally, handle this situation. You might handle it differently, but you would handle it, nonethless… believe me. It’s just what people do.