Category Archives: joy

The Drama Queen

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June 9, 2010

Jake and I picked Tanner up Monday afternoon from her first day of theater camp to find the most fired up 6-year-old you have ever seen. She was singing her newly learned songs to me before we even got into the car, glancing at her lyrics notebook to remind herself of the words. She was, in a word, aglow.

I told John that I night that I believe I had witnessed Tanner find her place in the world that day. All of her unbridled and emotional enthusiasm fit right into the world of song and dance, and I believe I will be driving her to play rehearsals for the next decade or so.

She is really proud of herself for getting a solo that she had to audition for and win from some other kids her age. She is singing “I hope I get it” from A Chorus Line. It is pretty hilarious to watch a very earnest, almost-seven-year-old sing, “I really need this job; I hope I get this job.”

She’s in camp all this week with a performance on Friday. She cannot wait for that performance. She keeps asking me how many days until Friday. It will be interesting to see if she gets stage fright.

Tomorrow, Jake, E. (John’s Mom) and I will pick her up from camp and head to the hospital for a counts check. They want to be sure the newly upped methotrexate dose isn’t making her counts drop more than they want it to. I’m terrified that her counts will have tanked and she won’t be able to do the show on Friday. It would be, to say the least, devastating. So, please pray, light candles, send up positive karma into the universe. She wants this so badly.

We’re also counting down the days to Domino, who is coming to his new forever home on June 23. We have his new bed all ready in the living room, filled with toys, chews, and a collar and leash. We’ve had so much fun getting ready for him to join the family. Cancer took our sweet border collie from us last year, and cancer kept us from getting a new dog for the nine months since then. But, now, we’re almost finished waiting to get back what cancer took, and we are giddy with excitement.

Good counts, good counts, good counts… there isn’t enough money in the world for the therapy she will need if she doesn’t get to sing and dance her little heart out on Friday.

Love,
Beth

The Magic of Being Special

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May 13, 2010

John suggested two titles for my post today:

1) Is there anything a Superhero cannot fix?
2) Have you ever been put to bed by a six-foot rabbit?

It’s a good day when you can come up with two humdingers like that!

We started out this morning tired… very tired. Jake was coughing… a lot. And, Tanner was definitely not her peppy self. We decided we would just go to Universal, stay for a couple of hours and come home. When we got there, we discovered that Universal is no Disney World. You walk a long way to get into the park and the workers didn’t seem nearly as kind or customer service oriented. The kids were comatose, just going through the motions.

Then, as we were walking through Super Hero Island, some loud music came blaring out of the speakers and Superheros came riding down the street on three-wheelers. Jake and Tanner were mesmerized and we got in line, immediately, to get autographs and pictures. No heading to the front of the line here, we just waited with everyone else, hot and tired… bummer.

Then, Captain America noticed Tanner’s button and asked her a few questions and pointed her in the direction of… Andy… the true Superhero of the day. Andy pulled us aside and escorted us to a quiet, shaded spot where after about five minutes, we were treated to our own private superhero meet and greet!!!! Hurray! We were special again and the kids were enthralled. The Superheros were so kind to the kids and spent so much time with them. We will be forever grateful.

That moment turned the day around. Everyone perked up, we spent some quality time with the Dr. Suess characters as well, rode some rides, saw a Sinbad show, ate a little lunch and headed home in time for naps.

After dinner, the Village turned into Winter Wonderland! There were Christmas decorations everywhere, horse and carriage rides, Santa Claus, a Christmas parade and even snow from a snow machine. Unbelievable! Tanner and her new friend Maddy, raced around dancing with the parade characters and decorated some Christmas cookies while Jake and I chased a reindeer around and played in the fake snow.

We hustled the kids home for bed, who were indignant that we cut the party a little short for them. But, we had a special surprise… Ms. Merry, the wife of the Mayor Clayton of Give Kids the World Village (and a six-foot rabbit) came to tuck the kids in and put them to bed. They were enchanted. She led them to bed, pulled up the covers, checked under the bed for monsters and turned out the lights. Of course, after she left, John and I spent a good half-hour trying to get them calm enough to go to sleep!

Here’s the thing about being here. It’s not just the amusement parks or this amazingly fun village or anything else that there is to do here. It’s how special the kids feel. How after so many months of sacrifice, disappointment and pain, they feel magically, wonderfully special. That is the magic of this trip and we will be forever grateful to all the volunteers and employees of Make-A-Wish, Give Kids the World Village and the theme parks for making our kids have one shining, magical week in the midst of this hardship.

Love,
Beth

One Mile

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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

Clinic Day #29 — This is a good one!!!!

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March 12, 2010

So here’s how my conversation went with Dr. Mixan as we huddled over Tanner’s count sheet yesterday:

Dr. Mixan: “Her counts still look good. Her ANC is 2100.”

Me: “Oh, good.”

Dr. Mixan: “We’re going to bump her chemo up a bit to 75% and see how she does on that.”

Me: “Okay. “ (I pull him away from Tanner and talk quietly) “So, um, what about school?”

Dr. Mixan: “Yes.”

Me: “Really?”

Dr. Mixan: “Really.”

Me: “Really?”

Dr. Mixan “Really.”

Me: “REALLY?!!!”

Dr. Mixan: “REALLY!!!”

Me: “Tomorrow?”

Dr. Mixan: “Why not?”

This is the part where I dissolve into embarrassing Mom tears and hug the doctor. I turn and tell Tanner who is now officially the happiest girl in the world. She spread her joy all over the infusion room and everyone was congratulating her and telling her to have a good time.

So, she’s going to school this morning… for the first day… about 7 months late.

Wow. I’m speechless.

Love,
Beth

Clinic Day #28

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Ahhhh… Good Counts

February 24, 2010

Yay! Tanner’s counts were 3,100!!!! Hallelujah! Now, maybe they’re high enough to fight off the virus that Jake has which is causing fever and coughing.

John took Tanner to clinic today, while I took Jake to the pediatrician’s office. It can’t ever just be good news, huh? Jake has a virus and the trick will be keeping Tanner from getting it. Her counts are high enough that she might escape, but we will be extra vigilant for the next few days.

Spoke to John just a moment ago; Tanner was out of surgery for her spinal with methotrexate and was in the recovery room sleeping it off. They’ve planned on a run to Chili’s to pick up lunch. She hasn’t eaten since 2:30 am this morning; we woke her for peanut butter and jelly.

She will restart her oral chemo at 50% dosage and we return in two weeks for a counts check to see if her counts are still high. If they are, they will raise her chemo dosage to try to get her to stay within the 1-2,000 range they are looking for. If they have come down some, that may become her permanent dosage. It’s the Long Term Maintenance Dance where they try to find the correct dosage to suppress white counts enough, but not too much.

John and I laughed about my bad luck. I didn’t go to clinic with them, where normally, we have to hold down Tanner to get her “sleepy milk” for surgery. She gets very anxious about it and cries and begs me not to let them do it, even when she has Versed in her. But, this time, they had a new anesthesia team who hid the sleepy milk from her and gave it to her without her knowing. John said she drifted peacefully off to sleep with no crying.

I, on the other hand, got to take Jake to the pediatrician where I had to… you guessed it… hold Jake down while they did a strep test and nasal flu test. No escape from the screaming and crying and begging for me!

If Tanner’s counts are good at our two-week check, she’ll be able to return to school…. Hoping and praying.

Love,
Beth