June 1, 2011
I almost didn’t notice it; today marks two years since Tanner’s diagnosis in 2009. I felt almost guilty for a second… it’s such a profound date to forget. But, I think these days I’ve got my eye on the prize and nothing else. Two months to go. Looking forward is much more productive than dwelling on the past two years.
I apologize for not updating in so long. Sometimes, writing here feels like acknowledging cancer, and we’ve been too busy having fun to do that, mostly.
So much has happened… Sleeping Beauty, for one. Tanner was amazing; we knew she would be. During one part of the show when she was just standing there, fearlessly belting out a big note, John and I just held hands in the dark. Theatre seems like the one place in Tanner’s life that cancer has no hold on her. Princesses do NOT have cancer and watching her do her thing up on that stage, it was easy to believe she was just a normal little girl doing what she loves best, without a care in the world. It’s a safe haven for her and I’m glad she’s doing more this summer. She has theatre camp next week and starts on a summer play – Joseph and the Amazing Technicolor Dreamcoat.
Jake has started summer T-ball, although he is insists he is NOT using a T to hit. He has his first game this Saturday and will likely be unpleasantly surprised to see that T! He has had two practices and attacks the baseball the same way he attacks the soccer ball… with joyful enthusiasm.
School let out last week. I was glad. Tanner keeps up amazingly well, but lately, her body seems to be tiring and I’m glad her last few months of chemo will be during summer break. She ended up missing 36 days out of the school year and being late or excused early 19 times. Pretty good for a kid with cancer, but pretty significant as well. 36 days of school is seven whole weeks out of the school year. We were so proud of her, though. She more than kept up and is still ahead of grade level in most subjects.
Had Clinic Day # 54 last Friday. It was a week late so she didn’t have to get chemo the week of Sleeping Beauty. It was pretty uneventful and she’s doing pretty well. She’s been sleeping uncharacteristically late in the morning; averaging around 12 hours of sleep a night. And, we finished up her five-day steroid pulse today with the usual irritability, sadness and general fatigue. Same old, same old. We now have just two more IV chemo days left; one of which will also involve the dreaded lumbar puncture as well. I think we can, I think we can….
Headed to the grand finale of the Leukemia and Lymphoma Society’s Man and Woman of the Year Campaign tomorrow night. Everyone has new duds to wear and it should be a really great event.
Tanner woke up two mornings ago at 10:15 in the morning. She has NEVER slept even close to that late in her life! She came downstairs and said that a nightmare woke her up. When I asked her about it, she said that she dreamed the leukemia never went away and she had to take chemo forever and she had to get a feeding tube in her nose. Broke my heart to hear out loud what I pretty much knew she kept hidden in her mind and heart. No one needs to tell Tanner she could relapse for it to be her worst fear.
The same day, Jake said very thoughtfully, “Mom, what if I get leukemia?” I hesitated for a second, then asked, “You mean, what if you caught it from Tanner?” “Yes,” he said. I reassured him that you can’t catch leukemia from someone, hoping he understood. But then he wanted to know how Tanner got it. I told him that doctors don’t really know. It seemed a lousy answer… because it is. He surprised me when he pursued it further, asking, “Then, how do you know I won’t get it?” Indeed. I just lied and told him he was not getting leukemia. “Never?” he said. “Never, “ I lied.
I can’t wait for this to be over, but I am reminded always that it will be a long time before the wounds heal for all of us; some will probably never heal, but just scar over and be a permanent reminder of this time.
I’ll update tomorrow with some pictures of the MWOY grand finale.
Love,
Beth
