Baby Steps

Most of you probably know that Tanner was in the hospital two months ago for a life threatening reaction to Bactrim and, possibly, ehrlichiosis which is a tick-borne illness. She had to be lifeflighted on a Monday night and was gravely ill for several days before being released on Friday afternoon with a course of antibiotics to finish as our only reminder of our time there. Tanner was sad and depressed in the hospital (it doesn’t suit her bubbly nature) and didn’t even want to get out of bed until I made her. But, as soon as we left the hospital, she came alive and never looked back. The next morning, she was playing Wii with friends, refusing to take a nap, and demonstrating jump rope moves for her brother. By Monday, she was back at school with no indication that anything had ever been wrong. Not bad for someone who was on a helicopter with a 50/50 chance just a week earlier.

That is my kind of illness… quick and dirty, with immediate results. I’m not really cut out for stuff that lingers. I like the kind of job where you work harder than everyone else and you see the best results immediately. I could never be a farmer… heck, I can’t even keep the plants the kids give me for mother’s day alive for more than a couple of weeks. All that watering, day in and day out… you get the picture.

So, when Tanner left the hospital after her leukemia diagnosis, I guess in the back of my mind, I thought things would get better… that she would bounce back the way she did before. Not that I was so stupid as to believe she was going to lick leukemia in a few weeks, but I guess I expected there to be some kind of forward motion to her recovery.

There is no forward motion. Only back and forth, up and down, side to side. Anything but consistent forward progress. Cancer has to be one of the only diseases for which the treatment is as bad or worse than the disease itself. The cure that almost kills you, as I like to say.

So, here’s how a typical day goes: Tanner wakes up crying this morning (as she does every morning since taking the steroids), after pain medicine, she feels a little better, eats voluminously and watches TV. She knows that eating too much will hurt her stomach, but its like the pull of the steroids outweighs common sense and she overeats, resulting in an ugly tummy ache. I give her something to help her tummy and then she plays on her computer for a while and helps Jake play on mine. Then, we go upstairs where she lays on the floor and talks to Jake while he plays. When we decide to go downstairs again, she begs for my help getting up off the floor. Even though I want to help, I know she needs to use those muscles and encourage her to do it on her own. This causes a giant temper tantrum (steroids, lack of sleep) that causes me to have to send her to her room where she promptly falls asleep for 2 1/2 hours. After she wakes, we eat more, of course, and go across the street to her friend Corinne’s house. I haven’t told Tanner about this because I know she won’t want to go… it makes her so anxious. As I expect, she balks at going and we arrive with her crying. Poor Corinne looks alarmed, but sweetly asks what’s wrong and invites Tanner to sit on a little couch in the playroom. Within minutes, they are looking at my new iphone and comparing games. They spend the next hour happily drawing and talking together on the sofa. I have to pry her off to go home. The trip home seems like miles. Her legs buckle on the stairs out of the house and she falls onto her bottom. It goes downhill from there. The heat beats her and she is exhausted when we get home. We regroup and have a much-anticipated visit from Lily, an 8-year-old little girl from Franklin who also has pre-b cell ALL and is about 7 months into treatment. It is their first meeting and we were excited to see her. But, the horrible stomach ache returns and Tanner can’t really enjoy the visit the way she wants to. Her stomach gets worse and worse and she can’t eat the McDonalds she wanted so badly all day long. We finally manage to get the right medicine to ease her pain just in time for bedtime.

So, it’s not just one day up and one day down, it’s 15 minutes up and 15 minutes down. You never know when a symptom will creep up and rob her of her personality temporarily. And, even though I know the tests show she’s kicking leukemia’s ass mightily, I don’t see it. I just see a little girl who can be giggling and cutting up one minute and groaning in pain the next.

So, I’m learning to take baby steps. To not expect it to get progressively better each day, but to have faith that it will get better… eventually. I guess I’m going to have to learn how to water a plant every day no matter how slowly it seems to be growing.

Love,
Beth

4 thoughts on “Baby Steps

  1. BETH, I APPRECIATE THE SHARING OF YOUR “INSIDES”. THAT’S A HARD ONE BUT YOU PUT IT OUT THERE HONESTLY. HERE’S MORE ENCOURAGEMENT AND A STRONG HOORAY TO YOU FOR HANGING IN THERE. YOU REALLY HAVE A TOUGH JOB.
    TANNER, YOU HAVE TRIED HARD. GOOD FOR YOU!
    JAKE, TAKE CARE OF TA TA.
    JOHN, HAPPY DAY!

  2. Tanner
    Lily and I had a great time meeting you yesterday. Your smile and laugh are infectious. That little brother of yours is a trip. I loved how when you talk about him your face just lights up.

    Don’t worry at all about not feeling good yesterday. I know you wanted to feel better, but those steriods just won’t let you will they. Lily completely understands. In fact she felt bad that she got so tired during the visit. I think the PT she went too really kicked her butt (she won’t admit it though) :).

    We can’t wait to get together again. If there is ever a time you just want to play give us a call. You don’t have to give any notice we know how it is with not knowing when you are going to feel well enough. Just think 1 more week of STEROIDS!!! YEAH!!!!!!!!!!!!!! I promise you willl feel a little better once they are gone.

    Beth –

    My heart aches for you. Seeing Tanner yesterday brought me back to Lily’s induction month. She often laid on the couch with the same look and had similar stomach pain. I just hated to see her in that pain, however I know once of the steroids it will get better.

    This ride of cancer is such a roller coaster. Dr. Mike told us to try not to get on the ride and remember your worst day is never as bad as you think and the best day is never as good as you think. Very true words however probably the hardest lesson for me. Unfortunately, cancer and its treatment rob you of consistency with your child and life. I know this is true for the intense stage of treatment. We have had to learn to live in the moment. We never plan more than a day in advance and we have found often that is too far ahead. It SUCKS!!!

    We hope long term maintanence changes that but who knows. Just know though things will still be hard they do become more routine and it is easier as you learn not to get on the roller coaster. It definitely took me a while – A LONG while.

    Please feel free to call anytime – questions or just to vent or cry.

    Love,
    Larisa and Lily Hensiek

  3. Dear Sweet Beth,

    Just put a card in the mail for Tanner and thought I would send you a BIG HUG via the Internet. We love you all so much and wish we could put things back together and make Tanner well again. Many folks at First Baptist are praying for you daily – Tanner, you, John and Jake. Cory has prayer warriors on the Arsenal praying for Tanner by name, Jennifer’s friends get daily updates, and the whole town of Scottsboro thinks of you as family now. You know those Tanners are praying – David offered the sweetest prayer for you all last Saturday.

    Know you are loved by so many and that we will do whatever we can for you. If you need anything at all that you think I can provide, I am just a short drive away!

Leave a Reply to Larisa Hensiek Cancel reply

Your email address will not be published. Required fields are marked *