My Best Seven Years — Happy Birthday Tanner!

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July 7, 2010

Tomorrow, Tanner will be 7 years old. Impossible. Though the last year has been rough, I still wouldn’t trade it for the world. Any year spent with my family is a year worth living.

We’re planning on swimming in the morning and getting home in time for E. (John’s Mom) and Charlotte (her best friend and honorary Aunt) to come, bearing gifts and well wishes. Then, Tanner wants to make homemade pizza and make another attempt at firefly catching. We’ll invite a few neighbors over for cupcakes and to join in on the fun.

Her birthday party is on Saturday night… it’s a rock star party. I’ve been up late at night cutting out cardboard guitars for the girls to decorate.

Send her a birthday message, if you think of it. It would make her day to get lots of messages.

Love,
Beth

Fireworks and Fireflies

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July 4, 2010

Do you remember the magic of fireflies when you were young? The wonder of a little bug that comes out at night and lights up the darkening sky? Tanner and Jake almost never get to see them. We put them to bed so early, it’s still light out.

A couple of weeks ago, I bought some bug catchers and some butterfly nets so we could catch fireflies. I bought six of them so that when we had Lily and Madelyn’s families over for a cookout, we could stay up late and they could all catch some. That would have been last weekend, and the kids were really excited about it. Ironically, as would happen only when you try to get three kids with leukemia together, one of them ended up in the hospital. Little four-year-old Madelynn had a fever and low counts and we ended up canceling until everyone could come. Tanner was extremely disappointed.

Tonight, after having a great time decorating our bikes and riding in the Fourth of July bike parade in downtown Franklin, we planned to go to Corinne’s house to catch fireflies and, hopefully, see a few fireworks in the backyard. We set out with glow necklaces, silly string, bug catchers and butterfly nets in tow. The kids waited and waited for the fireflies to show up, and finally, they did.

They all ran around catching them in their nets and putting them in their bugcatchers. Tanner ran to me, elated that she had caught five fireflies. Then, she tripped over a jump rope and fell face first on top of her bug catcher. The bug catcher broke apart and fireflies streamed out into the sky. Tanner screamed; we thought at first she had hit her port and hurt herself, but she was hurt in a different way. Her little heart had endured as much disappointment as she could take. She grasped at the fireflies and sobbed as she watched them get away. There was no consoling her. I picked her up and hugged her to me and took her inside for a moment to try to calm her down, to tell her that there were lots more chances to catch fireflies this summer, that we could put hers in Jake’s bug catcher and take them all home with us. Nothing worked. She wasn’t crying about one disappointment; it was ten, maybe twenty, disappointments wrenching from her body in loud high pitched sobs.

She was mourning all the lost opportunities, all the times she has been told to be brave, that we’ll get to do it another time, that we can redo theatre camp, that she’ll get to go back to school eventually, that there will be another birthday party, another class trip, another chance to sing in the church choir, another dance lesson, another beach trip with my family.

Sometimes it is too much disappointment for an almost seven-year-old to handle. So many opportunities that disappear into the night like lost fireflies.

At home, we watched fireworks from the windows. She wanted to go outside and catch more fireflies, but she and Jake were exhausted and it was late. I promised her, once again, that there would be other opportunities. That we would invite friends over one night and catch fireflies in the yard. Just like I have promised her so many other things that will return to her once this disease has left our lives for good. Two-and-a-half years is an eternity to a child, especially one that lives on the edge of constant disappointment. It’s just too long.

Despite the meltdown, the night turned out okay. We returned home to find poor Domino in his crate barking furiously at the “intruders” that were making such loud booming noises. When we opened the crate door, he barreled out growling and barking, skidding around the corner to the front door, looking for the bad guy that might hurt his family. Love that dog. We took him down in the basement, where it wasn’t as noisy, and everyone played for a few minutes. Then, we watched some fireworks out the windows and went to bed. Turns out Jake and Domino feel similarly about fireworks. Both of them only like to watch them from inside; outside they are just “too woud.”

Luckily, I can recreate firefly catching any night of the summer. And, just like she always does, she’ll get over it. I just wish she didn’t have to.

Love,
Beth

Clinic Day #36 — Ever So Slowly

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July 1, 2010

We went into clinic this morning for counts. I was expecting, after three weeks of being on 50% oral chemo dosage, for her counts to be well up above 1,000… but… no. 900. 900? That’s it? That’s only gaining 100 neutraphils per week… pretty slow, but I guess at least it’s in the right direction.

There is a theory that after a long time on chemo, the body develops bone marrow fatigue. As if to say, “Why should I bother to make any new cells, you’re just going to kill them?” Seems realistic to me.

So, we’re not quite ready to dine out in a restaurant again, but we’re not hibernating either. We’ll take it.

Been busy swimming a lot, playing with Domino and having playdates. Tanner’s friend, Meredith, came over yesterday for a “slumbover”… that’s when you have a friend over in the afternoon and they stay for dinner, you put on your pajamas and watch movies and they go home at bedtime. They had a super time.

Tanner got her birthday present a little early today (her birthday is July 8th). She wanted a new bike and we gave it to her today so she could ride it in the 4th of July parade in Franklin on Sunday. She opened up the garage door to go out and ride her scooter and just screamed in delight when she saw it… I love that.

Please pray for our little friend, Madelynn and her family. Madelynn is four and lives in our neighborhood and has ALL. She has just started maintenance and is experiencing the roller coaster that is the first months of this stage as they try to find the right dosage to keep her counts stable. Maintenance is such a dance; we’re still doing it. But, those first few months are very unstable. We were actually supposed to have a cookout with Madelynn’s family and Lily’s family last weekend and, ironically, had to cancel because Madelynn was in the hospital with low counts and a fever. Thankfully, it turned out to be a pretty benign virus and she got to come home pretty quickly. But, her counts continue to stay very low. I ran into her Mom, Amy, walking in the neighborhood early the other morning. We talked briefly about how disappointing it is to start maintenance… it seems like it should be so great, but it’s actually pretty rocky. It’s just a tough pill to swallow when you’ve waited for those first awful six months to be over.

Love,
Beth

You Get What You Need

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June 27, 2010

We thought we wanted a golden retriever… a goofy, playful, ball chasing, loveable family dog. But, as Cesar Millan, the Dog Whisperer, once said on his show, “You don’t get the dog you want, you get the dog you need.” (I wish I could do the accent; it sounds better with the accent.)

Domino has turned out to be exactly what we needed. He isn’t actually all that playful; I think being kept outside by himself for the first couple of years of his life didn’t teach him much about playing. He doesn’t even seem to notice when a ball bounces by his head. But, he is silly, which is actually more amusing. He is unbelievably adorable and super soft. He doesn’t really play with the kids, but his is unflappable when they play. He is the first dog I have ever seen sniff a tambourine when a child was shaking it… seriously. He is unfailingly gentle, completely bombproof and always ready for loving in any form. The kids can lay on him, poke his feet, pull his ears… it’s all good with him… he takes it as love, which is how it’s actually meant.

John ruining the dog

So, he may not be what we thought we wanted, but he is exactly what we needed. And, we have had a ball with him this weekend. The kids are taking turns having him on their beds at night while reading books… he loves it. Jake put his blanket over himself and Domino today and they lay on the floor and watched TV together.

If you or anyone you know is looking for a dog, I can’t recommend the Death Row Dogs program enough. You can find it at McMuttigans.com. The whole experience was wonderful, from meeting the inmates to getting our super dog. He is very well trained; he knows all his obedience commands and basic good manners, is house-trained and crate trained. He doesn’t jump on you, or rush at the door or chew stuff up; it’s been a wonderful way to get a dog. They get 25 dogs every three months and Domino was the 484th dog they have rescued from euthanization. People come from all over the country to get their dogs and we feel lucky to have found them. They had four dogs from Domino’s class that had not yet found a home, including a beautiful chocolate lab. Surely, someone we know needs a trained dog….

Too hot to do anything this week, but swim and maybe, go to the movies. We go back to the clinic on Thursday for a counts check and, hopefully, they’ll be up so we can get a little more freedom after that.

On a sad note, Ellie, the little girl I asked you to pray for last week, passed away the very next day after my post. I don’t know what else to say about that, except to say cancer sucks.

Love,
Beth

Yay for Domino Day

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June 23, 2010

Domino in the car on the way home

Finally, he’s here. Domino. Staring at me as I write on the computer. Trying to get me to scratch his ears. He is, believe it or not, cuter in person. And, so gentle and laid back. The Dog Whisperer would not have approved of his introduction to our household. Four kids screaming and playing with loud toys, six adults, everyone swarming him at once, Jake hugging him and laying on his back. But, he took it all in stride. He’s just great.

I’ll write more tomorrow about our experience at the prison. It was really inspiring. But, right now, it has been a very long day and there is a spotty dog who will expect a long walk at 6 am, so I’m going to have to stop being such a night owl from now on.

Sorry we didn’t take better pictures. We didn’t get home until 4:30 with Domino and the kids were so excited. We had a small dog fight with the lab next door and then we, ever so briefly, lost our new dog. Jake left the door open and he slipped out. John and I cornered him one street over, but it was a close call. Whew! So, it was a little crazy and we hustled the kids off to bed while we gave Domino a little break in his crate and then realized we forgot to take pictures. Tanner had trouble sleeping and came down later and we snapped a shot of the two of them, so that’s really all we have. We’ll take better pics tomorrow and I’ll write about meeting the inmates that trained him. They did a good job.

Love,
The Happy Pages + a Spotty Dog

1 Day to Domino

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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

Clinic Day #35

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June 17, 2010

Protected during treatment by Mr. Larry's St. Christpher medal

Tanner’s counts had just come up to 710 today from 650 last week, BUT, Dr. Mixon felt that given how good she feels and how great the rest of her numbers look, and the fact that it is summertime, that we should send her to Vacation Bible School next week – hallelujah!!!

So glad we didn’t have to disappoint her again. She is really excited about going and it will be Jake’s first time to go, so he is excited, too.

She got her dose of Vincristine today through her port and will start steroids tonight. It was a very smooth visit, but I am thoroughly tired anway.

Jake spent the day with Aunt Beth (thank God for Aunt Beth) and had a ball.

Now, just keep your fingers crossed she doesn’t get sick again.

Love,
Beth

Love Letter to Tanner

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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

Laying Low

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June 14, 2010

We’re laying low. It’s too hot to do anything but swim, but the pools are mostly too crowded for us… enter, the Whitler’s with their backyard pool! We swam at their house today and had a great time. Thanks so much, guys… you’re always there when we need you.

Tanner is feeling fine. She was really fine after one day of the antibiotics. The fact that she has been able to beat this so quickly makes me believe her neutraphils are on the way up… we hope! We need them to recover in time to get to Vacation Bible School next week. Tanner will be totally devastated if she can’t go. She handled missing her show on Friday really well, but it all burst from the seams on Saturday and Sunday. Like all her pent up frustration just came out at once. Ugghhhh.

We snuck out to the neighborhood pool on Sunday morning when most were at church and got to swim with Madelynn. Madelynn is a little 4-year-old girl in our neighborhood that also has ALL. It was great for the girls to be together and for me to get to commiserate with Madelynn’s parents. There was some considerable mutual steroid-cursing going on, for sure. In a couple of weeks, Madelynn and Lily and their families will be coming to our house for a cookout and some fun. I’m looking forward to it.

Other than that, wracking my brain for fun, germ-free activities that don’t put us outdoors in the heat of the day. It’s really quite challenging. More swimming at the Whitler’s on Wednesday. Then, clinic again on Thursday.

Time to have a talk with Tanner’s neutraphils… I don’t think they understand how much is at stake.

Love,
Beth

She Didn’t Make It

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June 11, 2010

Tanner told me in the car on the way home from the pediatrician’s office this morning that it was the worst day of her life. I believed her. She woke up this morning with a red, swollen throat and a quick trip to the pediatrician’s office confirmed that she has strep throat. Say goodbye to her theatre camp show today.

In a cruel twist of fate, it was not the risk of her catching something, but the risk of her giving something to someone else that kept her from doing something she really wanted to do this time. It was another disappointment in a year of crappy disappointments. I heard her in the back seat of the car talking to herself while I was on the phone with the clinic, sobbing, “Another year… I have a whole year more of this… I can’t do it, I just can’t.” Talk about heartbreaking. I don’t think I’ve ever felt so horrible about making the right decision before.

She was pretty mad at me for a while. She kept telling me that the doctors were not the boss of me and that I could just do what I wanted because I was a grown up. I told her that she was right and I cried with her, but said I still had to do what was right and it wasn’t right to knowingly expose other kids to strep.

Then, I had a brainstorm! There were other dates for dance camp and she could go again! We drove to the theater where the performance was being held to tell the director she couldn’t come. Sure enough, they said she could come to another camp and do the show then. Tanner cheered up considerably and felt a lot better. We decided that maybe it was cool to be able to go to camp twice and that she might make a whole new group of friends.

So, it was still a bummer, but a little less so. She’s feeling pretty good for someone with strep throat. It’s a little worrisome with her counts so low, but so far, no fever. We’re trying to keep her and Jake separated so he doesn’t get it, too, but it may be too late.

Thanks to Jan Williams School of Music for being so understanding of Tanner’s unique situation, and for giving a little girl a second chance at her dream.

Love,
Beth