We made it! Tanner took her last dose of steroids last night and we finished our last day of Induction today! Tanner and I high-fived today as she, John, Jake and I goofed around in the playroom. She and Jake were taking turns riding the SmartCycle (how can she ride that so fast and still have so much trouble walking?) and rolling around on the floor. Tanner asked to go for an airplane ride on my legs (no easy task with her recent weight gain!) and wanted to do dance, dance revolution on the Wii. She is coming back to us slowly, in little stutter steps, interrupted by moments of pain and fatigue, but back nonetheless. I’ve missed her and can’t wait to see more my funny, lively daughter.
We had such a smooth visit at the Clinic today. It is scary how normal taking our daughter into surgery is becoming. You know when the Dr. says, “you know the drill,” instead of telling you all things that could possibly go wrong, that you’re becoming a regular. Tanner was a champ today. She chatted casually (about food, of course) with the nurse while she put the IV into her port — no crying, no screaming, not even any wincing. And, when we came to recovery, she had the doctor and nurses cracking up talking about tacos and Sonic. Unbelievable how far she has come in a month.
We’ll have the results of the bone marrow biopsy on Thursday (7/2/09). They use a more sensitive test this time to determine whether there is any cancer left in her bone marrow. Fingers crossed, but I know it will be good — Tanner’s fighting too hard for it to be any other way.
Even though it was a day of celebration, we definitely had a disappointment as well. We were under the impression that Tanner had a week off between the Induction and Consolidation phases of her treatment. We thought that today she was having a spinal tap with a chemo injection into her spinal fluid, the bone marrow biopsy and a dose of vincristine, then we thought we didn’t have to come in next week. Uh-uh. We had the bone marrow and spinal today, but no vincristine. Next Thursday (7/9/09), we go in for another spinal, a dose of vincristine and we start daily oral chemo. Does anyone see a break here? Chemo this week, chemo next week. Surgery this week, surgery next week. Hmmmm. I just keep reminding myself that there are no steroids involved in any of this. Maybe that’s the break.
We also talked in more detail with Dr. Mixan about Tanner’s leg weakness and pain. He said there could be three possible culprits: 1) Since Tanner had a such a high infiltration of leukemia cells in her marrow — 95% — it put great stress on her bones and she could still be having pain from that. 2) the steroids cause muscle weakness and she might get better as the effect of the steroids fade. 3) The vincristine causes nerve pain and weakness. So, we’re going to wait a couple of weeks and see if that gets better and continue to encourage her to move more. If we don’t see a significant improvement, we’ll start doing therapy.
All in all, a pretty good day. Having a visit from friends tomorrow morning and my Mom is coming for a few days to help. Jake and I have big plans for the pool and, hopefully, we might get Tanner to the Whitler’s pool in the next few days once her bone marrow site heals. Good stuff.
One more thing. Without sounding preachy, let me give you some unsolicited advice. Appreciate the things you are able to do with your kids, even the mundane ones. I used to wish I didn’t have to take the kids with me to the grocery store, and now that I can’t, I miss just doing that little regular stuff with them. Being able to just trot out the door on errands and stop off at the playground or McDonald’s playland without thinking about blood counts, germs or immune systems. I never thought something like this could happen to us, but it did. So, appreciate the little things that you have; they really are precious.
Love,
Beth
OH TANNER! YOU ARE DOING GREAT AND I KNOW IT IS NOT ALWAYS EASY! YOU ARE SHOWING US WHAT A REALLY FINE GIRL YOU ARE. OF COURSE WE ALL KNOW THAT, BUT YOU ARE SHOWING US HOW MANY GOOD WAYS YOU ARE BEING SUPER TANNER!
Congratulations on finishing Induction … and SO GLAD to hear that the real Tanner is coming back! And I appreciate your last paragragh too. Thinking about Tanner really has made me not take things for granted … and really appreciating every “mundane” moment. Still praying for you guys and think about you all the time. Much Love, Denise
Beth, it was so good to meet you and Tanner yesterday. I hope Tanner enjoyed those tacos. I’m so glad that you have reached this treatment milestone! This is huge!
It is amazing how our children adapt. Becca is essentially nine months old, and at her CT scan yesterday, she just opened her mouth right up for the sedative, which didn’t even work on her (I think b/c her body is so adept at processing drugs now). In her afternoon appointment, when they had to put an IV in, she didn’t even cry. Not a sound. When they poked her, she just looked over at her hand like, “Hm. Another needle. Whatever.” While I’m glad that it doesn’t bother her, it also makes me sad. A 9-month-old (or 1-year-old, depending how you count) shouldn’t be used to pain. But she is. It breaks my heart.
I also hear you on your last paragraph. Becca came home on October 22 (after 4 months in the NICU) and wasn’t allowed to leave the house (except for the myriad of doctor’s appointments) until late April. It was a looong winter. I never thought that I would want to take a screaming baby shopping with me so badly. Beyond the convenience factor (which was complicated by the fact that we live in a rural area, so shopping is inconvenient anyway), it was another way that “normal” was taken away from us. Throughout her illness, I grieved not being able to do the things that many parents dread. I wanted to be huge and waddly in the third semester of pregnancy. I wanted her to have to hold her all night long because she wouldn’t sleep in her crib. I wanted to have my days and night mixed up. I wanted to have to change her clothes 3 times a day because she had ruined them. And I had little patience for parents who complained about having to do those things. So I appreciate your “preachy” moment.
Hang in there. You’re doing great!
Thanks for posting.
We’re at Day 11 of Delayed Intensification.