November 2, 2009
No need to worry any more about Tanner’s lack of energy… oh my! It came back today with a vengeance! She is back and spunkier than ever.
We rode bikes yesterday and today. Yesterday, she crashed afterwards and napped for a few hours. Today, she just kept going like the energizer bunny. Watching her bike and play made me realize how much muscle tone she has lost by lying down for those couple of weeks and from the steroids. She is back to limping a lot and having real trouble getting up off the ground. She is also having a lot of pain in her left leg, which is new. Usually it’s her right leg that causes her so much trouble. I’m trying not to worry about the loss of strength at the moment. I think she will be sick enough from the chemo over the next month, that physical therapy will not really be possible. We will get through this month and then try to get her into a therapy program that will help regain what she has lost, or as much as possible considering she will still be taking Vincristine and steroids for the next year-and-a-half.
Tanner was able to videochat with her class this week, which was so awesome! Thank you to Mrs. Franklin for making it possible. It was so cute watching them talk with each other. They use a free program called skype, which is amazing. They talked about their Halloween costumes and how much candy they had gotten. One little girl told Tanner she was sorry Tanner had been in the hospital, to which Tanner replied, “It’s okay, they have lots of videos there and the food is yummy.” We hope to skype often so she can feel like part of the class.
Today, on the way home from dropping Jake off, I jokingly said to Tanner, “Hey! Do you want to go to Sweet & Sassy and get your head shaved?” At first, she responded exactly as I expected her to, “Nooooooooooo!” But, then a moment later, she said, “Yes, I do want to.” After making sure she really wanted to, we went by Sweet & Sassy, but it was too crowded. Tanner really wanted to do it, though, so we went to Snip-its and I went in an explained the situation to the hairdresser, made sure she wasn’t sick and then brought Tanner in.
She was bold and decisive. She wanted this done. She didn’t like the noise the clippers made, so the hairdresser cut it off with scissors. The more she cut off, the more confident Tanner became. It was like those little wisps had just been reminders of her hair and when they were gone she just looked like she was meant to be bald. The short little blond wispies are so fair, you can’t really see them and she has these sweet little freckles on the top of her head from the sunlight reaching through her thinning hair this summer. She didn’t wear her wig at all today. In fact, she took her hat off as soon as she saw her friends and proudly showed them her new smooth head. She told me later that they told her she looked beautiful. Corinne and Olivia – you will forever be on my good list.
There is something so angelic about the vulnerability of a person without hair. You see their eyes, their smile, their soul more clearly. To me, she looks more healthy, not less, than she had before. I found myself crying, not because I was sad, but because she is so beautiful and her spirit is so resilient. When we were done, she rubbed her head, looked in mirror and smiled. It was a moment I had dreaded, but it turned out to be one I will never forget, for completely different reasons than I thought.
Tomorrow is the big, bad day. John will wake Tanner at 3:45 am to eat cheese and crackers because she can’t eat before her lumbar puncture at 2 pm. We will leave the house early to arrive at clinic at 8 am to get her port accessed and begin IV hydration. They will test her urine as we progress until they determine she is hydrated enough to begin receiving the cyclophosphamine. She also has to be hydrated for four hours afterward. She will also receive and IV dose of ARA-C chemo and begin taking oral chemo, TG-6. Then, she will go to surgery to get a lumbar puncture with an injection of methotrexate. Four types of chemo in one day. She will continue to take the TG-6 daily for the next month and will come home with her port accessed so we can give her an IV dose of ARA-C for the next four days. I’m anticipating a very sick little girl, but who knows? Tanner surprises me all the time.
Please send positive thoughts for tomorrow to go smoothly. It really is the worst day of this whole process and I look forward to moving past it.