Clinic Day #52 — a Colossal Mistake

April 20, 2011

Of all the stupid mistakes to make. We went to clinic today for Tanner’s Final Spinal… only it wasn’t. There’s one more. But, somehow, I miscalculated the dates.

Wouldn’t be a huge deal except that Tanner has such anxiety about these LPs. So much so, that she actually had a pretty serious panic attack last night. She handled herself beautifully today, though. When we figured out the mistake I had made, she was initially upset, but forgave me quickly and we kept her very occupied with some new games downloaded to John’s iPad and Sara, the childlife specialist, who comes with us each time to help distract her and make things easier for her. Such wonderful people.

We celebrated my mistake with a cake that said, “Happy next to Final Spinal” on top. All you can do is try to make the best, right?

Tanner’s counts were down some… her neutraphils were at 780, which is neutropenic, but not severely so. Dr. Mixan felt like since we’re past flu and cold season, she could still go to school, but we’re a little nervous about that. She has off Friday and Monday anyway, so we will probably just keep her home tomorrow and hope she recovers some. We’ll go in for a counts check again next Wednesday to see if she’s come up any.

We found out some very sad news today. Both Tanner’s doctor and nurse are leaving. Dr. Mixan is a third year fellow and took a job in Chatanooga. He will be leaving in July and we will need to select another doctor to guide us through the rest of this journey. And, Cari, Tanner’s nurse who has been with us since the beginning of treatment, is changing jobs within the hospital. While we may see her from time to time, she will no longer be our regular nurse. We opted not to tell Tanner this today considering she was already anxious. This will be a big blow to Tanner. The bond between nurse and child in the clinic is really not to be underestimated. There is a real trust and love there and Cari had tears in her eyes when she told me she was leaving. Tanner will have a hard time with the transition and I hate that both of them are leaving at essentially the same time. We’ll let Cari tell her in her own way when we come in for counts next week and hopefully, we’ll bond with another nurse quickly, but both Cari and Dr. Mixan will very hard to replace.

Tanner will be on the Channel 5 news in the next few days. They were doing a segment on Eli, the three-legged therapy dog that visits the infusion room regularly. The kids love him and they interviewed my oh so shy child about having the dog in clinic. I’ll let you know when it is going to be on.

I’m going to bed now. Between the storms we had last night and the fact that Tanner and Jake were both in bed with me at some point last night, I got little to no sleep. And, clinic day with an LP is a long, exhausting day. So, I’m whipped.

Love,
Beth

Alice in Wonderland

January 24, 2011

Tanner’s big day finally arrived. She had her stage debut at Rosie in Alice in Wonderland Jr. on Sunday. She did great and had such a good time. She just loves performing and is definitely in her element. It is such a cute show!

We had a whole row of people there to see her. Thanks to everyone for coming; it meant a lot to her.

If anyone still wants to see it, she’s performing Wednesday and Thursday nights at 7pm. The show runs about an hour and 10 minutes and you can buy tickets by calling the Boiler Room Theatre in the Factory in Franklin at 794-7744 (that’s my shameless plug for Act Too Players!). It really is a cute and campy version of Alice in Wonderland.

Next up… Sleeping Beauty. We decided not to do Annie after all. The schedule was very tough and, after much agonizing, we just decided she couldn’t handle it. Tanner actually seemed a little relieved and agreed that she might rather do Sleeping Beauty with Act Too. They just rehearse once a week, which frees her up to go back to dance lessons. She is doing hip-hop and ballet. Sadly, she had gotten very worried that she would get sick and miss an Annie rehearsal or, worse yet, the show. It was causing her visible anxiety.

Frankly, Tanner is experiencing a lot of anxiety right now, for one reason or another. I’m not sure whether she’s just so sick of all this or what, but we’ve started seeing the play therapist again and are hoping she’ll get some relief (and then John and Jake and I will get some relief!).

Daisy Mae joined our family officially on Saturday… she’s our official adopted dog and she’s doing great. The kids adore her… especially Jake.

Tanner has clinic Friday morning with the dreaded lumbar puncture with chemo. It is the worst time for this to fall… she is just so anxious to begin with. We haven’t even told her because we don’t want her to worry about it and ruin her two shows this week. It will bring a crashing halt to her elation from the shows, I fear. The childlife specialist at the clinic, Sara, is going to accompany us to the OR again to help distract Tanner and keep her from working herself up as much. She will be tired from doing two shows two nights in a row on school nights so I’m not hopeful about it turning out all that well. Sigh. HOWEVER, this is the second to last one. Only one more spinal after this (fondly known in leukemia world as the “final spinal”). Truly a landmark.

An update on little Alli who I wrote about last time — she has FINALLY come off the ventilator and is breathing on her own again, but not really out of the woods yet. She still has a ways to go to recover from this and keeps getting other infections in the process. I can’t imagine how excruciating this has been for her little body to endure and for her family to withstand. But… progress nonetheless for her!

Love,
Beth