August 2, 2011

It wasn’t what I expected… and still isn’t. Which is why I haven’t written in so long. I’m struggling with finding the balance between hope and fear during Tanner’s last week of chemo. Our last clinic day, several weeks ago, was really a more sobering day than I expected.

We started out the morning with Tanner hiding under a bed, refusing to come out because she didn’t want to be put under for her last lumbar puncture. We managed to talk her out, but it was heartbreaking, nonetheless, and not a very celebratory way to start a milestone day. I had hoped to make T-shirts for all of us to wear to clinic that day — Final Spinal shirts. But, both John and I agreed she was just too anxious to have seen it as a celebration.

When we saw the doctor, before the spinal, the information he gave us about what was in front of us, was a little depressing. He starts out by reminding us that 15% of all kids with ALL will relapse; that’s 3 in 20 kids. And, given the fact that there was only a .004% chance of Tanner getting leukemia in the first place, 15% seems like a lot. There’s no predictor for relapse, so even though Tanner has done so well in treatment, she is just as likely to relapse as a kid who had lots of problems. Okay, sobering.

Then, he tells us that we will come back for blood work and checkups every month for the first year, every two months for the second, every three months for the third, every six months for the fourth and fifth year and every year thereafter for the rest of her life. Hmmmm. So much for walking away from this thing.

Then, he tells us that we will come back for survivorship clinic to do some baseline testing to see which long-term side effects Tanner is currently experiencing or may experience in the future. These are both physical and mental effects (19 injections of chemo into the central nervous system has to have some effect on your brain, right?). Again, just sobering.

It was like rain on the parade I was trying to muster up in my mind. I long for all of us to just leave this whole thing behind and forget about it as best I can, but that’s just not reality. And, I feel ungrateful for thinking that. After all, she will feel so much better without the chemo in her system, and that, in and of itself, is more than enough to celebrate.

After Tanner went under for her lumbar puncture, I stood in the hallway and talked with one of the staff members about how conflicted I felt about all of this. Sara had given Tanner two gifts from the hospital and told her how proud they all were of her and how brave she had been. We felt Dr. Mixon and Carrie’s absence. These are the people who had walked this whole journey with us and they were not there for the end. Sara told me that she had orchestrated big celebrations for the first six kids who had gone off treatment when she started working at Vandy. They had made signs, sang songs and celebrated No Mo Chemo in style. All six kids relapsed… all six. And Sara realized that you can never promise a kid that it’s their last dose of chemo. You can celebrate their courage and be proud of them, but you can’t tell them it’s the last time. Wow.

While Tanner was under, John went down to the gift shop and bought her a stuffed monkey and a balloon for both she and Jake, who was home with his grandmother. When we left the hospital, they were waiting in the car for her and she was thrilled and seemed to relax and be a bit more celebratory now that the LP was finished.

But, still, she is reserved about all of this. When I point out on the calendar how few days she has left, she smiles, but it is fleeting. She seems afraid, which I can identify with completely. It’s terrifying to know that if there is one rogue cell left in her body, it will now be free to go crazy and start this whole awful process over again. I literally have nightmares about having to tell her we have to start chemo again.

The chemo is a safety net, and now we have to learn to live without it… just like we had to learn to live with it.

I am constantly amazed by how difficult this journey continues to be, on so many levels. In the midst of the last few weeks, we have had some deep conversations and made some hard decisions. Tanner decided she didn’t want to return to her beloved Moore Elementary School, but instead go to school with her neighborhood friends at Winstead. A hard decision because the kids and teachers and staff at Moore have been like family. I think it’s a good sign that she’s so confident about attending Winstead, though. We went last week and toured the school, met the principal and enrolled her. We will miss Moore, but look forward to getting to know everyone at Winstead.

I’ve also had to answer a question I hoped Tanner would never ask because I don’t really know the answer myself. After Vacation Bible School where we learned that God listens to us and answers our prayers, Tanner asked me one night at bedtime if God could do anything.

“Yes, of course,” I answered.

“Anything?” she asked again.

“Yes, Tanner, anything.”

Tanner teared up and said, “Well that hurts my feelings.” And, I knew without a doubt, where she was going. “If he can do anything, why didn’t he cure my leukemia.”

I took a big breath and wondered how I would answer this question, since I couldn’t really make sense of it myself. How many times have I thought the very same thing? But, I knew she needed an answer… an answer that was comforting.

“You know how we read the Narnia book, and when the kids came back from spending years and years in Narnia, no time at all had passed in our world?” I asked.

“Yes,” she said, doubtfully.

“I think God might work like that,” I continued. “God has been alive for millions and millions of years and so maybe to him, two years is just a little blip in time. Maybe he blessed the doctors and nurses so they could help you and he is curing you.”

Tanner considered this for minute and then, still crying, said, “Well, he should know that two years is a really, really long time for me… too long.”

“You’re right baby,” was all I could think of to say. “Amen sister,” is what I wanted to say.

So, it’s been a more difficult couple of weeks than I anticipated. And, I don’t feel exactly like I thought I would. I do have hope, despite the grimness of this post. I really do. But, I think the key is to keep fighting fear to make room for hope. Choking back the darkness to allow a little light in and trying to hold on to it.

In this vein, we’re having a little skating party for Tanner and Jake’s friends on Saturday to thank them for helping us through this tough time. We’ll get to celebrating with you adults later. We had been told by Tanner’s therapist not to really have a party or to put too much emphasis on the last day, but it seems a disservice to all she has been through not to err on the side of hope. To throw caution to the wind for the moment and just relish THIS day and not worry about what will come. No big speeches or big moments at the party, just some kids skating the celebrating the friendships that helped all of us through.

I think this will continue to be a balancing act over the next few years, but we’re doing our best to let hope win.

Five more days…

Love,
Beth