Monthly Archives: September 2009

Three Little Girls in One Big Arena

Posted on by
4
Leah, Tanner and Gracie

Leah, Tanner and Gracie

September 13, 2009 I sat in the arena last night with my daughter in my lap, tired as only a six-year-old up 2 hours past her bedtime can be, but still singing along with Taylor Swift and loving every minute of it. I thought how there were thousands, maybe ten thousand, little girls in that arena who were lucky to be at that concert. But, none were so lucky as my little girl, for whom being able to go to a concert was a small miracle in the midst of four long months of limitations. I admit, I teared up, but she never knew it. I wanted only happy moments for her that night. And, we had them.

Some of my favorites…

–The three little girls, squeezed (car seats and all) into the back seat of my van, Taylor Swift blasting on the stereo, while we moms covered our ears as they sang, screamed and laughed their way to Nashville.

–Leah turning to me after Taylor Swift sang her first song and very seriously saying, “Miss Beth, we will stay for one or two more songs, then we will need to go home because it is way past our bedtime.” (Sorry, Leah, we stayed a lot longer than that.)

–The girls up on the front row of the suite dancing and twirling their glow sticks for all they were worth while Kellie Pickler performed.

–Tanner insisting, even after having fallen asleep briefly a few times, on us staying until Taylor sang “Love Story.” Thanks, T, it was worth it!

–Gracie, up on her feet singing all the words to “Love Story,” when only 10 minutes before she had been sound asleep in her Mama’s lap.

–Girl time not only for the little girls, but the big ones. Anna Lynn and Shelley are the kind of friends that show up at the Emergency Room at midnight on a school night because there might be something they could do to help. And, because they know what it‘s like to be a mom and can imagine what it would be like to be terrified that your child won‘t make it. They’re also the kind of friends that quietly organize meals and come by to take care of Jake when I need it. I’m glad I could do some small thing to say thanks.

–Meeting the oncology nurses from Centennial and Leigh Stamps and her friends, who made up the other two “Light the Night” teams that won tickets to the concert. These great ladies raised money for the Leukemia and Lymphoma Society, not because they have a personal stake in it, as we do, but because they saw a need and are the kind of people who take action when they see an opportunity to help.

We all had a great time, even the Moms. It was a good show and the first concert for all three little girls. They were exhausted when we arrived home at 11 pm, but it was worth it.

And when I got home,
‘fore I said, Amen,
Asking God if He
Could play it again.(Taylor Swift, Our Song)

Love,
Beth

Big, Exciting News!!!

Posted on by
5
One, happy little girl

One, happy little girl

September 12, 2009 Two HUGE things have happened to us in the last few days. One is that Tanner got to have a salad. I know, this doesn’t seem like a huge thing… especially for a six-year-old… but I had promised Tanner that the next time her counts were high, I would thoroughly wash some lettuce and make her a salad. She was in salad and crouton heaven.

The other is that we won 6 tickets to the Taylor Swift concert tonight from the Leukemia and Lymphoma Society and the clinic said Tanner could go!!!! We raised the second highest amount of money for Tanner’s Light the Night team during a one week period and will sit in a suite with the other two winning teams. Tanner is SOOOOOOO excited!

When I first got the call about the tickets from Robin Embry, who is coordinating Tanner’s team, I thought, “Oh no, here is another cruel irony. We raise all this money in Tanner’s name and then she can’t go to the concert. There‘s no way we can sit in the midst of all those people, even if we are in a suite.” All afternoon Thursday, I was just sick about it. It just seemed so unfair. That night, I had Bunco at my house and was telling the girls about it. Celia Whitler, who is the host of Tanner Time, said she might have a connection to help us find the most germ-free environment to watch the show from and to call her husband Ron in the morning and see what they could do. Maybe we find the best place to sit. I began to think maybe we could make it happen.

The next morning, I was at it with a vengeance. I decided to chase this thing down until I hit a total dead end. I called the Leukemia and Lymphoma Society and talked with them and with my friend Ron. Everyone was trying to find a solution… was there an empty suite somewhere? Could she wear a mask and sit in the corner? Finally, later in the afternoon, I called the clinic at Vanderbilt to see what they would say about it. The nurse looked up Tanner’s chart and said, “Her counts are so high, I don’t see any reason she can’t go, and she doesn’t need a mask; it would just ruin it for her.”

Oh my Gosh!!!! Finally, a break! A providential aligning of the stars that combined high counts and an awesome opportunity to celebrate life! I called everyone that had been working on the problem with us to let them know we had success. I called two girlfriends of Tanner’s and invited them and their Mom’s to join us.

Last night, we pulled up some YouTube video of Taylor Swift in concert and said, “Wow, she puts on a cool concert; wouldn’t it be cool to go to that tomorrow night?” Tanner looked confused. “Wouldn’t it be cool to go to that with Leah and Gracie and their Mom’s tomorrow night?” “Are we?” she said, wide-eyed. “How?” After we explained it, she screamed in the way that only a six-year-old girl can, and we all did a happy dance.

This morning, Melissa from the Leukemia and Lymphoma Society came by and delivered the tickets. We are so excited! Tanner has never been to a concert before and she LOVES Taylor Swift and Kelly Pickler, who is opening for Taylor. She’ll have to take a big nap this afternoon, since the concert doesn’t even start until her bedtime and I doubt we’ll make it for the whole thing, but it will still be an awesome experience. After having to miss so many things over the past few months, this is a welcome opportunity to do something special and forget about her limitations for once.

Thanks to all who have donated to Team Tanner; not only have you helped fund research for the cure of blood cancers, but you have helped create a very special night for our little girl. Thanks also to the Leukemia and Lymphoma Society for the tickets and for being so gung-ho about helping Tanner be able to go. And, thanks to Franklin American Mortgage company, John’s employer, for making a call to the Sommet Center so we can park in the Arena Garage and avoid entering the building with all the crowds of people, which might be dangerous for Tanner.

People are so kind to rally around one little girl to make a special dream come true. And, good things… no wonderful things… can happen in the midst of great adversity.

Thanks, God. I owe you one.

Love,
Beth

A Long Day at the Clinic

Posted on by
1

September 8, 2009 Rough day at the clinic today. It was the day after a holiday, so it was packed and we were there from 8:30 to 1:30, mostly waiting. She did well with the waiting, but decided she didn’t like “Sleepy Milk” after all and John and I had to hold her down while the anesthesiologist put her under. Fortunately, with her port being pretty much directly connected to her heart, the anesthesia works within 10 seconds, so it wasn’t a very long fight. Still, it just seemed like such a setback to see her so upset about it when she has handled it so well in the past. The anesthesiologist said that it is common, though, for kids to get upset about being put to sleep after they’ve had a break from it for while.

So here’s what a clinic day looks like… we arrive today at 8:30 am and sign in at the hematology/oncology desk at the touch screen (Tanner likes to do this herself). We then take a seat in the waiting room until we are called up to register and pay. Tanner gets a bracelet at this time and then we sit back down again until we are called into clinic. When we are called in, she gets weighed, measured and her vitals taken, then we get sent to an infusion chair to wait to get her port accessed. Her favorite nurse, Carrie, takes us back to the access room and Tanner sits in a chair to have her port accessed. She pulls off the Glad Press N’ Seal we’ve put over her port to cover the little blob of numbing cream that we put on it earlier that morning. Once that’s off, she cleans the cream off with a tissue and then the nurse sterilizes it with a cold cleansing stick. Then, they put the needle in through her skin into the bubble on top of the cone-shaped port. She likes to watch them put the needle in and wants to count down 3-2-1. Today, she didn’t even flinch. Then, the nurse puts a big plastic sticky bandage over the needle to keep it in place. The needle has a little black box attached to it and then an IV line coming off of it.

Once she is accessed, we go back to an exam room and wait for her blood counts to be run and for the doctor to come to see us. Today, Tanner’s counts were off the charts, for some reason that no one can explain. Her neutraphils were 3,500, up from 1,300 the time before and from 610 the visit before that… crazy and almost normal, although her immune system is still not considered normal. The doctor comes in an examines her, goes over her counts with us and answers any questions we may have. Sometimes, you might get two doctors; if you are seen by a fellow, the attending has to come in later and follow up. Once the doctor has seen counts and talked with us, he orders the chemo by her weight for that day. It takes a little while for the chemo to come up, so normally we go back out to infusion chair so we free up the exam room for the next patient, and when the chemo is ready, the nurse comes out and administers it over a 10 minute period. But, today, they were backed up so they sent us down to surgery and told us to come BACK up after surgery for chemo. Sigh.

Sometime during this whole process, a doctor comes by to run a nutrition test on Tanner for a study we are participating in. She puts some electrode stickers on Tanner’s foot and hand and hooks her up to a machine for a couple of minutes while Tanner lies flat. This is the kind of study I like… it doesn’t hurt.

When you go to surgery, you have to sign in and register again before waiting, again, in the outpatient surgery waiting room. Depending on the day, the wait can range from 10 minutes to an hour, like today. When they are ready, they bring us down to a holding room in pre-op and go through some vitals, and pre-op information before we are taken to the OR. This part usually takes about 10-20 minutes. Once we’re in the OR, we are allowed to wait with her there while they put her to sleep, then John and I go down to yet another waiting room while they do her spinal. It usually only takes about 10 minutes to do the surgery, then we go to the recovery room where our favorite recovery nurse, Leigh, usually tends to us and Tanner. She’s awesome and requests Tanner when she sees her on the board. Tanner has to lay flat for 40 minutes after the spinal to decrease the risk of headache and backache, so they let her sleep all that time, while John and I sit next to the bed and… you guessed it… wait.

Once they wake her, she recovers very quickly. They use propofol for the spinal’s (yes, the Michael Jackson drug) and she wakes up as if she’s taken a nap and is pretty alert within minutes. Normally, we go straight down to car and leave, but today, we had to go back up to the clinic for chemo. Mind you, Tanner’s had nothing to eat since the night before and it is 1 pm. Upstairs, they hook her up to get chemo and we wait, watch TV and eat chex mix until that’s done. Then, we start the process of getting the very sticky tape bandage off of her chest, so she can have her port de-accessed. Once we’ve taken the bandage off, they take the needle out of her port. Oddly enough, Tanner has more anxiety about them taking it out than putting it in. Again, she wants to watch and count down. Once the needle is out, we stop by the front desk again to make an appointment for next time and… finally… go home.

The combination of the three chemos Tanner got today have really messed her stomach up and she has been sick to her stomach all afternoon. She is slowly getting a little better and I hope will be fine by tonight. I’m going to see Wicked tonight with some girlfriends and you know who kids want when they don’t feel good… mama.

Suffice it to say, it’s a long day for adults, much less a 6-year-old and we’re glad it’s over. I know this is a long post, but if you’re reading this, you’ve made it through and I appreciate your patience. September is Childhood Cancer Awareness Month and I think it’s important for people to realize what these kids go through. Right now, Tanner’s going to clinic every 10 days, but for most of the first 6-9 months, she goes through this whole ordeal every week… every week. It’s a lot to ask of a kid and many have it much worse than she does. Lots of kids spend months shuttling back and forth between the hospital and the Ronald McDonald house undergoing intense therapy and extended hospital stays. Hopefully, through research, we’ll find a better way. Or better yet, find a way to prevent this mess.

Love,
Beth

Clinic Day #12

Posted on by
Reply

September 7, 2009 It’s been a very nice weekend, but clinic day looms tomorrow. Tanner was not happy to hear she was going to have “sleepy milk.” She has to have a spinal with chemo injection, for which she is sedated, along with IV methotrexate and Vincristine. That is assuming, of course, that her counts are high enough to take more chemo.

It’s a lot of chemo to get at one time and I hope it doesn’t zap her energy or wreck her counts.

I’ll update tomorrow after clinic to let you know how it went.

Love,
Beth

A Little Magic

Posted on by
Reply

September 6, 2009

“You would never know.”

That’s what my best friend Kim said tonight while we stood and watched Tanner roll down the hill at our other best friend Beth’s house. They have a huge yard and the kids love to run wildly through it, as only kids can.

There are many times when Tanner looks and seems completely normal that it’s easy to forget. She looked so happy, like any other kid, rolling down that hill. Climbing up it was a little difficult, but she did it.

Beth and Glenn had us all over for a cookout. The kids picked acorns off a tree and then we hid them like easter eggs in the yard for them to find. They planted some seeds in pots to grow carrots (we had to stop Tanner half way through because the dirt was getting all over her and it was probably not the best idea). They climbed on Glenn’s “tractor” and pretended to drive. They took turns singing into Aunt Beth’s real microphone — Tanner sang some Hannah Montana and Jake sang a little “Itsy bitsy spider” and “Old McDonald.”

After a great dinner, we toasted marshmallows over the cinders in the grill and made S’Mores. Then, they chased fireflies in the yard.

On the way home, Jake, who is never awake when it is dark outside, kept looking at the car lights and the sunset and saying, “Look at the colors Mommy.”

We arrived home tired and full and Tanner was asleep before she hit the pillow.

It was a perfect evening. Thanks Beth and Glenn for sharing a little magic with my kids.

Love,
Beth

She has a Fever

Posted on by
1

September 3, 2009

I’m packing a bag for Tanner and I… just in case. After a fun day playing at Aunt Beth’s, she has come down with a low fever. So far, not above 100, but at 100.4, it’s off to the hospital we go. So we’re just waiting… and packing.

So while we wait, you pray. And, I’ll update in the morning.

Love,
Beth

Ten Grays Closer to a Streak

Posted on by
Reply

September 2, 2009 Poltergeist was one of the first horror movies I ever saw. I still remember how the mom, played by JoBeth Williams, showed up with a big, distinct gray streak at the end of the movie from the stress of being scared for her children’s lives. I keep thinking, especially on a day like today, that it will be a miracle if I don’t have one of those by the end of this whole ordeal.

Today, Jake knocked his front tooth out. We were, once again, in the cul-de-sac riding bikes and he was on his razor scooter, which he dearly loves. He is a bit young for the razor scooter, but Jake has an uncanny sense of balance and rides it as well as any 5-year-old. I turned to check on him just in time to see the scooter hit a rock, sending him flying over the handlebars, face first. I knew it was not going to be pretty. When I picked him up, his tooth was just hanging from his mouth and he reached up, pulled it out and threw it on the ground… it was every bit as gross as it sounds.

We couldn’t get our dentist on the phone (ironically, two of the hygenists had been by the house that afternoon to bring Tanner a gift and wish her well), but called a friend who is a pediatric dentist who told us there is really nothing you can do as long as it was knocked out root and all, which it was.

Amazingly, he didn’t have any other loose teeth and didn’t cut any other part of his face… must have been a direct hit.

I had a moment when I was sitting on the curb with him, a washcloth pressed up against his mouth to stop the bleeding, when I just thought I would like to go back in time before I had kids and redo things. When I only had to worry about myself. It was a fleeting thought, but in the interest of honesty, I must admit to having it. I think I am about 10 gray hairs closer to that JoBeth Williams streak.

It’s not that Jake losing a tooth is the worst thing that ever happened. I mean, I lost both my front teeth at three after having run into a little boy’s forehead, teeth first. And, 45 minutes after Jake lost his, he was happily sucking on a popsicle and shoving tiny pieces of buttered bread in his mouth. No evidence that the gaping hole where his tooth once was bothered him at all. And, as Tanner happily pointed out while I was still trying to stop the bleeding, “Good for you, Jake. You can put it under your pillow and the tooth fairy will bring you money.”

It’s just that some days, I think I’ve had enough. I’m especially over that sickening adrenaline rush you get when your kids are hurt. I may have a heart attack long before I ever get that gray streak.

But, we get up and move on. People do it all the time. People with much worse problems than mine. A family I read about in the news has one little girl with leukemia and the other with recurring brain tumors. Jake’s tooth seems hardly worth mentioning when I think about that family.

So bring it on. I’m not afraid of a little gray. In the wise words of my 6-year-old daughter, “It’s just hair.”

Love,
Beth

P.S. We are just $25 short of $3,000 donated in honor of Tanner’s Light the Night team. Our goal is $5,000 and we have until October 1 to raise it. Thank you to everyone who has donated and who has volunteered to walk in honor of Tanner that evening. We are deeply touched by these acts on generosity on behalf of our girl. To donate and/or join the team, go to http://pages.lightthenight.org/tn/MidTN09/TeamTanner.

The Vincristine March

Posted on by
1

September 1, 2009 Have I mentioned how much I would love to hate Vincristine?!!! It is one of the two mainstay chemos that Tanner will take for the entire 2 ½ years of treatment and it is rife with side effects. I have watched it slowly but surely attack Tanner’s leg coordination and strength over the past several weeks and it pains me to watch her struggle to do something that would have been so simple for her just 4 months ago.

Today, after taking it easy most of the day because Tanner seemed a little tired after another bad night of sleep, we got a call from the bike shop saying Tanner’s bike was ready. I had taken it to have the chain replaced after all the aforementioned chain falling off incidents and Tanner was missing it sorely. We loaded scooters, bike helmets and sunscreen into the car and ran down the road to pick up the bike, then drove to our favorite bike-riding cul-de-sac to play with friends.

Tanner and her friend, Smith, rode into the grass field behind the school and then couldn’t make it back up the hill on the bikes, so they got off to push them. Smith topped the hill and I still didn’t see Tanner. I stepped around the trees to get a better look and saw her, way down in the field, facedown with the bike on top of her, motionless. After yelling to Molly to keep an eye on Jake, I took off running down the hill. I saw her move an arm, and then she began trying to get up. It looked slow and painful, but with great effort, she got herself off the ground, but kept dropping the bike back on herself.

I expected her to be crying, but she wasn’t. I pulled the bike off of her and asked what had happened. “I just fell and I was too tired to get up for a minute… it seemed really hard,” she said. “It’s getting harder and harder to walk again, Mom.”

What comforting words can I offer? “Don’t worry it’s just the Vincristine that you will take for the next two-and-a-half years?” “That Vincristine stinks, but it’s saving your life?” “Just a couple more years and things will go back to normal?“ All pretty lame choices, I would say.

She’s six and she loves to run and jump rope and ride bikes and play. But, every week, she looks a little slower and more awkward when she runs. I noticed at her dance lesson the other day that she couldn’t skip… again. We lost that once and got it back when we got a three-week break from the Vincristine.

But, here’s the amazing part… she never stops trying. The other day, we were coming home from the cul-de-sac and I was pulling a wagon loaded down with scooters, bikes, water bottles and Tanner (we like to have a full complement of riding choices). I decided to take a short-cut and head through the grass median to our house. Tanner hopped out and asked if she could pull the wagon. “Sure,” I said, doubtfully. The median is wide and it slopes down in the middle with a pretty steep little hill to get to the street in front of our house. I knew there was no way she would make it up that hill, but she wanted to try.

When she got to the steep part, she dug her feet in and started to pull. At first, she made headway, but then the weight of the wagon pulled her backward and she lost her footing. “Let me push, sweetie,” I said. “No!” she said through gritted teeth. So she pulled… and pulled… and pulled… and fell down… and got up… and pulled some more… and STILL wouldn’t accept any help. Finally, after what seemed like a very long time, she pulled that wagon over the curb and into the street… triumphant and smug.

She’s six and she loves to run and jump rope and ride bikes and play. And, as long as she’s able, we will.

Love,
Beth