1 Day to Domino

June 22, 2010

Tomorrow is Domino Day… long awaited and much anticipated. Tanner was so excited, she couldn’t go to sleep tonight (the steroids didn’t help, either!) and I find myself in the same position. We’ve been on a 10-day countdown on the chalkboard in the kitchen, and today the kids and I washed down our dog crate to get ready for the big day. John and I will go to the prison tomorrow to meet the inmates that trained Domino and bring him home. The kids made thank you notes for them today. Jake put Star Wars stickers all over them and Tanner made cut out stars. We hope they will let the inmates have them so they can remember what a good thing they have done for a little girl with leukemia and her family.

The kids have been at Vacation Bible School for the past few days. They are having such a good time. I’ve helped with crafts those two days as well and really had fun. Tomorrow is water fun day at VBS, so they are going to have a double-great day, between that and the dog.

We had a great weekend, too. Tanner has been on steroids and feeling some of the effects of the Vincristine, but she accepts it so well now and we know to just move on and it will get better. She can’t really take the heat (and it’s HOT here!) so water activities or indoor activities are the best bet. Saturday, when I came back from running errands, John, Tanner, Jake and four neighborhood kids were in the backyard on our new playground sliding down the slide into the baby pool at the bottom. They were having too much fun! It’s the simple things, right?

Sunday, we gave John a day off for Father’s Day… no simple task, I promise you. I had to practically run my poor workaholic husband out of the house for some much needed R&R. While he was gone, the kids and I went to the grocery store to buy ingredients for seafood gumbo, his favorite food. He came back at dinner time to posters on the door, made by the kids, a balloon, cards and gumbo. Happy man.

I have to tell you about something that happened on Friday that strengthened my belief in Tanner’s vast resolve and determination. She had chemo, if you remember, on Thursday at clinic – Vincristine through her port. Then, Thursday night’s medication concoction – 6mp (chemo), methotrexate (chemo), neurontin (for neuropathy), mepron (antibiotic to prevent pneumonia), amoxicillin (antibiotic for strep throat), Claritin (for allergies), dexamethasone (steroids), pepsid and zofran (for nausea). Good grief! I expected her to be down for the count on Friday. She woke up a little groggy, but after running some errands in the morning, we headed to the YMCA pool for a swim. We got there and Tanner decided she wanted to take the swim test that would allow her to go down the slides and climb the rock wall.

“Today?” I said. “Why don’t we do it another day?”

“No, I want to do it now,” she said.

The lifeguard showed her what she had to do and my chemo-ridden child jumped in the pool and swam the length without stopping or touching the bottom and pulled herself out on the side. The lifeguard and Jake and I cheered her on from the side, following her as she swam down the pool. She looked, at the end, as if she might give up, but stuck it out. I couldn’t have been prouder. I looked at the lifeguard with disbelief and said, “She has cancer and had a boatload of chemo yesterday.” He bent down and told her “Way to go!”

We were putting on sunscreen later and I told her how proud of her I was. Of course, I teared up. Tanner’s response… “Thank goodness you didn’t do that in front of the lifeguard.” Cue eye rolling.

So, we’ve had fun despite the low counts and the steroids and chemo. It beats the alternative, right?

On a more sobering note, please pray for the family (including the twin) of a little girl named Ellie, whose poor cancer-ravaged lungs will not last much longer. Her mother, just days ago, was blogging how she was not ready to give up on a miracle and was still encouraging Ellie to fight. Today, I read where this same mother has not only had to accept the inevitable for her daughter, but has courageously swallowed her own grief to try to help her daughter accept her fate as well. Imagine trying to assure an 8-year-old that it is all right to die now. Cancer is heartless.

Love,
Beth

Love Letter to Tanner

June 15, 2010

Mothers and Daughters have it tough. Our relationships are not always the easiest. Maybe it’s because our daughters fall too close to home that we find it somewhat easier to parent a boy, or at least I do. But, what I hope Tanner realizes, in the middle of all the mom-daughter tussles, is that I love her completely and really do want the best for her.

The beauty of this blog is that maybe someday she’ll see that. That even though it didn’t always come out right, I was always doing my best and that anything I did came from a place of love.

So, this post is a love letter to Tanner. A letter that she can read when she’s old enough to understand some of the grown-up things I write about here, and old enough to forgive her Mom for the blunders and maybe even understand where I was coming from. But, mostly, for her to see how much — how very much — I love her.

Dear Tanner:

I hope by the time you read this, that this leukemia business is far in our past and we have moved on to arguing about what you will wear to school or whether it’s okay to wear makeup or not. I’m thinking you won’t remember much about being treated for leukemia, but I know it will have shaped who you are. Maybe reading this blog will help you understand some of things you do, and some of the things Daddy and I have done.

I don’t know who you will become, but I do know one thing… you will be strong. You would have been strong before this damn cancer, but after you will be a force to be reckoned with. There will be nothing you can’t do.

Being your Mom is a privilege I wouldn’t trade for all the power jobs or peaceful Saturday afternoons in the world. If it hasn’t always felt that way to you, I apologize. Being a Mom, and maybe particularly a stay-at-home Mom, is decidedly unglamorous. And, I’m a pretty lousy homemaker, so I probably gripe about that part. But, never doubt that I stayed home with you and Jake because I wanted to… desperately. I didn’t want to miss one minute of the wonder that has been you. I didn’t want to look back and have not been a part of all the things that made you grow into the wonderful young woman I know you are becoming.

I’m sure it won’t always be easy for us… we are too alike. You have inherited my stubbornness, which makes us a little like gasoline and matches at times. As long as you can remember that being right doesn’t equal happy (I’m still trying to get that one down), your stubbornness can serve you well. It will help you not give up, but instead work harder than everyone else. And, it will free you to be yourself all the time and not care too much what other people think.

I’m going to try to practice what I’m preaching here and admit that I haven’t always been right when it comes to being your Mom. You are a hard cookie to parent with a strong will, but a bright spot of joy also, and I have often struggled with how to teach you right from wrong without breaking your beautiful spirit. If I haven’t done it right, it wasn’t because I didn’t want to or because I wasn’t trying or because I didn’t care. It was because I am human, and what you will learn someday is that there is no instruction manual for raising a child and we all just do the best we can. In particular, there’s no instruction manual for raising a child with leukemia and few qualified people to ask for advice.

Daddy and I were nearly broken in two when we found out you had leukemia. It was, without a doubt, the worst day of my life. Either one of us would have gladly taken your place rather than watching you suffer so. The physical treatment was hard on you, but it was the isolation that was the really tough thing for you to swallow. You are a social butterfly and love people, so being kept out of school and away from friends and activities was so difficult for you. I know you blamed me for a lot of that, because I was usually the one breaking the news that you couldn’t go to a birthday party, or spend Thanksgiving with family, or go to the beach with your cousins. And, that’s okay. I just hope that one day, maybe when you’re a Mom yourself, you’ll get that being a parent means loving someone enough to let them hate you when you have to. We did everything we could to keep you safe and assure that you had a life to live at the end of this seemingly endless chemo.

When I was a little girl, I thought my Daddy was stronger than anyone. I knew he and my Mom would never let anyone or anything hurt me. I am sorry that you had to learn at age 5 that the bogeyman is bigger than Mommy and Daddy put together. It’s not a fair age to learn that and we did everything we could to retain your childhood, but cancer is ugly and you are too bright to not notice that no one could ever really promise you would be okay. You must have been so scared and I wish I could have made it better.

I want to make sure, more than anything else, that you walk away from reading this letter knowing three things: 1) I haven’t been the perfect Mom, but it wasn’t for lack of trying. It’s not the easiest job, this Mom business, but I love it and I wouldn’t have it any other way. 2) I am prouder of you than you will ever realize. You have been braver, stronger and more poised than I could have ever been in the same situation. 3) I love you… fiercely and completely… just the way you are. And, I always will.

I hope this helps… for you to understand what happened to you, and to our family, many years ago, and for you to realize that you have been all I could ask for from a daughter.

I love you, T.
Mom

Summer Break

May 24, 2010

Seems like Tanner just got back to school and now it’s already over for the year. I think she had just settled in; she was really sad for it to end. She did really well, though. She managed to keep up even though she missed so much, thanks to Mrs. O’Hara and Mrs. Franklin. We are so thankful she is able to continue going to Moore; they take really good care of her there.

So, summer’s here! We’ve started with a bang! We had a birthday party on Saturday and some friends over last night and played outside almost all weekend long. Tanner feels great, mostly because she has “skipped” a dose of Vincristine and a pulse of steroids she should have had last week. Her monthly clinic visit fell on the second to last day of school… the day of their class party. Dr. Mixon was nice enough to let us move it back a week, so this Thursday, she’ll get Vincristine in her port, start her five-day steroid pulse and have a lumbar puncture with a methotrexate injection. That ought to stop her from feeling so good… sigh.

This morning, she and Jake and I started the day by going to see the new Shrek movie at 9:45… we were the only ones in the theater! Tanner danced down front after the movie was over and we had a great time. Tomorrow – swimming in the neighborhood pool… brrrrrrrr. And, Wednesday… a slip n’ slide party in the yard.

We’re going to make a list of all the things we want to do this summer… camping in the back yard, a firefly party, trip to the zoo, etc., and make sure we do them. Grab life while you can, you never know what might happen to change it.

Today, Tanner I wrote this story on the computer. I wrote the first four sentences and she wrote the last two:

Once there was a little girl named Tanner. She was blonde with beautiful, big blue eyes that looked as if they were reflecting the ocean. She was strong and brave and faced the most difficult things with grace beyond her years. She was a hero, but she didn’t know it. And she fought leukemia she had to take cemo and starods. And before you new it she was fighting it like a champ.

Happy Monday.

Love,
Beth

One Mile

April 29, 2010

Yesterday, as we headed to school, Tanner and I talked about the mile run scheduled that morning that is part of her school’s physical education program. Just the night before, she had taken the last dose of a five-day steroid pulse, and just 6 days before, she had a dose of Vincristine. Both things bother her legs and make her weaker than normal, among other side effects.

“You feel okay to run today?” I asked.

“Sure,” she said.

“You know, if you’re too tired, you don’t have to run,” I said.

“No, Mr. Parks says it’s not just a fun run, it’s a test; we have to do our best,” she insisted.

“Well, I know, but I can talk to Mr. Parks if you think you won’t be able to finish. I don’t want you to push too hard.”

“Why wouldn’t I be able to run, Mom?” she asked… innocently… expectantly.

Long pause on my part. “No reason… run like the wind, girl.”

And, run she did. One mile in 13:09 minutes. She ran, joyfully, in spurts, giggling with friends as she passed them or caught up to them. Jake and I ran with her for part of the run and John took video from the side, the only Dad there in a suit.

She ran as if there was nothing wrong, as if there was no reason she shouldn’t be able to, as every child does… with youthful abandon.

I have to admit, I teared up as she crossed the line ahead of some of her classmates. This child with every reason not to run, and every reason to run.

It made me think about the run the year before. I said to John, “She ran faster than she did last year, when she didn’t have cancer.”

But, here’s the thing. She did have cancer when she ran last year. We just didn’t know it. In fact, she limped the last ¼ mile or so, complaining about a pain in her upper right leg; the leg that was so painful when she was diagnosed, and the leg that still hurts her now.

That afternoon, I told Allison, her therapist, how Tanner had run with all that medication in her, all that poisonous chemo eating at her. She smiled and said, “That’s her incredibly strong will. It’s what makes her so difficult to deal with when she really wants something, but it’s serving her well, too.”

One mile. 5,280 feet. Two proud parents. One joyfully determined child.

Love,
Beth