The Luxury of Being Proud

July 17, 2010

I got to the theater on Friday at about 1:30 with Jake in tow to get a good seat for Tanner’s performance. Aunt Beth had beat me there and as I walked into the building, I realized I had left my camera at home… doh! I left Jake in Beth’s capable hands and drove like a bat out of hell all the way home and back, just in time to slide in my seat and catch my breath before the lights went down and the show started.

The kids were doing 10 songs, one from each of the ten years the Boiler Room Theater has been in existence. The first song up was, “I Hope I Get It” from A Chorus Line. The song is really upbeat and the kids had learned some fun choreography to go along with it. Tanner was so cute doing the dances. When the music suddenly slowed, my daughter stepped confidently to the front and center of the stage and belted out her solo. She was FANTASTIC!!!!

As Beth, John and I were giving each other high fives, the kids launched into several more songs from Gypsy, You’re a Good Man Charlie Brown, and Fiddler on the Roof. Then, they all went back stage and the lights went out. A spotlight came on center stage and Tanner walked out from behind the curtain and all by herself, and sang the first stanza of “Day by Day” from Godspell. She was dressed in jean shorts and a purple t-shirt with a long psychedelic vest over it. Her long, skinny legs ended in a pair of sneakers that looked too big for the rest of her. Her short hair set her apart from all the other girls. She looked very small on the stage. But, she was so confident and so beautiful. John, Beth and I cried, of course. Tanner caught my eye while I was crying and I quickly smiled so she wouldn’t be thrown off.

It was an arena where it did not matter that she has leukemia. It didn’t matter that she has spent 25 days in the hospital over the past year or visited the oncology clinic 37 times, or spent countless hours in the ER with a fever. It didn’t matter that she had blood transfusions, platelet transfusions, antibody transfusions and an unbelievable variety of chemo drugs injected into her small body.

It just didn’t matter.

She could still stand up there and sing with a confidence and a natural ability that could not be stolen from her by this disease or her treatment. It was a great victory in what has been a grueling battle. In that moment, it just did not matter that she has cancer.

John and I were left speechless all that night. We kept watching the videos we had taken over and over. She had zero fear on the stage and why should she? What could be scarier that what she has already endured? I think we just couldn’t believe that after all that she has been through in the last year, there she was, shining on that stage. Making a place for herself, despite the fact that she had been in the hospital just the day before getting chemo.

It was just a great day, one we will not forget for a long time, and the first of many we will spend sitting in a theater watching our daughter perform. We’re already trying to figure out how she can do Alice in Wonderland in the fall. She’s found what she loves and what she’s good at; and I think it will really help her get through the next year to have something she is passionate about to focus on.

I realize I have gushed beyond what is acceptable, considering this is my own child. But, it’s been a long time since we have been able to proud of her for anything other than fighting cancer.


P.S. You can watch two of her solos by following this link We kept the clips short so as not to compromise the privacy of the other kids in the show.

Theatre Camp Redo

July 14, 2010

This week has been theatre camp redo week. Tanner’s been attending camp every day and having at least as much fun as she did last time. She is singing and dancing her little heart out and we’re keeping our fingers crossed that she makes it to the performance on Friday this time.

Tomorrow is clinic day. A dose of Vincristine and the start of a five-day pulse of steroids. She’ll miss a good part of the day at camp tomorrow, but seeing as how she’s already been through camp week once before, she won’t miss anything too important. We’re hoping to get her back to camp by 1 pm, but heard clinic is packed tomorrow, so it might take a while.

Been spending some quality time with my little man this week. We’ve been to Jump Zone and to the pool, the dog park, and the library. I’m enjoying some special time with him. Jake gets overlooked in this whole process sometimes, not intentionally of course, but because sometimes you just have to give your time to the child who needs you most at that moment and that is often Tanner. Jake is so used to Tanner getting medical attention that he now asks for medicine so he can get in on what seems like (to him) some great attention from John and I. He doesn’t realize what that medicine does to Tanner. We keep sweet tarts to give to him when he wants some of that kind of attention for himself.

Went to my pre-op appointment this week for some minor surgery I’m having in a few weeks. I have a nodule on my thyroid that has tested negative for cancer in needle biopsies, but John and I agreed to just get it out. We’re not so big on taking chances with cancer these days. I’ll lose half my thyroid, but the other half should take up the slack and I should be fine, minus one largish lump in my throat, after all is said and done. Me having surgery is causing Tanner some minor stress. She keeps asking if I have cancer or if it is going to hurt and if I’m getting “sleepy milk” like she does.

Hoping to report good things from clinic tomorrow. Good neutraphils and hemoglobin levels. That’s what we look for. Just trying to make it through Friday’s performance and to the church Fish Fry that night (Bethlehem United Methodist — yummy!). We’ll keep you posted.


Fireworks and Fireflies

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.


She Didn’t Make It

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.


Clinic Day #34 — By the Hair of Our Chinny, Chin, Chin

June 10, 2010

As we feared, counts today were not good. Her neutraphils were at 650, which is, of course, neutrapenic. The methotrexate that made her so sick last week was doing it’s job a little too well, apparently. Tanner could tell by the look on my face when I was talking with the doctor that things were not good and began to cry saying, “Can I go? Can I go? Please, please… I have to go.” Mercifully, the doctor felt there was little additional risk in letting her do the show tomorrow since she has been with these kids all week and it’s summer time when all the respiratory stuff isn’t floating around. Thank you, God.

So, as nerve wracking as it will be for John and I to let her go with such low counts, the show must go on. Then, we will hunker down until next week and see what happens with her counts. They adjusted all her oral chemo back to 50% and we will start the process of bumping her up towards 100% all over again once her counts recover. Her red counts were fine, hence all the energy.

She was really tired this afternoon, but had trouble going to sleep – I think she’s just so excited. We’ll take lots of photos and video and post them tomorrow so you can see the star in action.

I jammed my big toe today in a stumble not worth discussing and have a swollen and painful foot that has put a little hitch in my getalong. Suffice it to say, we will be a laid back group this weekend.

Thank God for the Whitler’s pool, which will be a safe place for us to spend some time next week. Tanner actually has a full clinic visit next Thursday, even though it’s been only three weeks since the last one, because we got off schedule due to the end of school. They don’t hold Vincristine for low counts (it doesn’t really lower counts), so she’ll have that and start her steroids. Steroids, although they sometimes raise counts, actually compromise the immune system, so it may not be a very good couple of weeks ahead. We may be missing Vacation Bible School.

But, we are soooooooo grateful she will get to perform tomorrow. That’s the main thing. Thanks for all the good thoughts and prayers. They worked.


The Drama Queen

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.



June 4, 2010

Tanner’s just not feeling very well. It’s like this most recent round of chemo is affecting her more than it usually does. Through all the first 6 months of horrible chemo she received, she threw up only twice, now she has thrown up twice in one week and has needed anti-nausea meds every day. Weird.

She’s also been really hot, which I assume is caused by the steroids. She will complain about not being able to cool off and will actually feel really hot to the touch, but has no fever. Like hot flashes, I guess.

I did a little research on the Leukemia and Lymphoma Society discussion boards. I go there especially when I have a side effect I want to know more about. Doctors are only so helpful about side effects. They’re more concerned (as they should be) with the effectiveness of all these drugs and whether they’re actually killing the leukemia. Mommas are the ones who worry about side effects and the LLS discussion boards are where they talk about them. Turns out it’s not uncommon for kids to begin having more side effects as maintenance goes along. The theory is that the toxicity of the chemo over the long-term just builds up in their little bodies and they become too tired to fight them off. Many mothers of boys (who do an extra year of chemo) talked about how sick and fatigued their boys were the third year of chemo. So sad.

All this feeling bad hasn’t really stopped us from having some fun, though. Yesterday, after waking up sick, Tanner rebounded and, within an hour, we went to the pool. Kids are amazing. We haven’t played outside as much as usual; the heat was too much for her. But, the steroids are wearing off and we’ll be back to scootering and biking in no time, I’m sure.

Wednesday, we went to see our favorite singer, Roger Day, at the Spring Hill library. It was, as always, lots of fun. Tanner and Jake got a seat up front and Roger worked Tanner’s name into a couple of songs, which tickled her. They got signed t-shirts and we went home with a new copy of a CD we misplaced during the move. We’ve been singing, “As a matter of fact, Jack, I like Yaks! We like YAKS!” in the car ever since.

When we were in line waiting to get into the room where Roger was going to perform, Tanner started talking to a Mom in front of us. She said, “I have cancer, well leukemia, and Roger Day came to our house and had a concert with my friends.” The look on that’s Mom’s face was priceless. Tanner was so matter-of-fact about it the woman never said a thing to her about having cancer, she just looked startled for a moment and kept talking. Lol

Today, more pool time and then we need to go sing Happy Birthday to Aunt Kim. Happy birthday Kimmie! Next week, Tanner has theater camp all week. I’m hoping it will be the perfect outlet for my little drama queen.


Feeling Better

May 28, 2010

Tanner slept for 13 ½ hours last night. She woke once for zofran for nausea and once for oxycodone for generally feeling crappy, but awoke this morning feeling pretty good and stayed that way all day. All the same, we slowed it down today. Ran errands in the morning and hung around here in the afternoon, painting and making up Star Wars plays. We ventured outside for about 10 minutes before it rained on us and forced us back inside, which was A-okay. I think some rest was a good idea.

So far so good with the steroids… she usually doesn’t feel bad until about day 3, although generally we’ll see some mood swings and emotional behavior on day two, which will be tomorrow. They’ve upped her chemo again; her counts were at 1700, which is still too high, so they added one pill to her weekly five-pill dose of methotrexate. That puts her at 100% dosage for both 6MP and methotrexate, which is the goal. I don’t expect her to have boatloads of energy or feel particularly well while adjusting to the change, though. Methotrexate seems to have a greater effect on her than the 6MP; in fact, it’s what made her so sick yesterday. Hopefully, she’ll adjust and be feeling good in time for theater camp.

Tanner had strawberries today for the first time in a very long time. She rolled them in whipped cream after dinner tonight and talked about eating strawberries and whipped cream all morning long tomorrow. Sometimes it’s the small things that matter the most.

John and I sat tonight looking at old videos of Tanner and Jake when they were really little. Tanner was so articulate at such a young age that hers are really funny, because you can really understand all the nonsense she is spouting. We laughed and laughed at some of the things she did and then I saw Millie, our beloved and deceased border collie in one of the videos and teared up. Well, once I started I kept on. I sat watching a video of Tanner being hugged by Pluto in Disney world. She is not quite three in the video and has the most beautiful, long blond hair. I found myself crying with my hand over my mouth trying to hold it in. She was so happy and sweet and innocent. John looked at me, puzzled. I just said, “You hope for so much for them when they’re little like that. We just would have never dreamed she would end up with cancer.”

I think, in retrospect, what I was crying about was the innocence of our family at that time. We had so much fun on that trip and we had no reason to ever believe anything but the best would happen for us. Every parent’s worst fear is that something awful will happen to their child. But, for us at that time, and for most people, it is a distant and improbable thought. I think once the improbable becomes reality, you lose an innocence you once had as a parent. Instead, you wake every day thinking that that “awful thing” that once seemed distant, now looms omnipresent in your life. Any day could be THE day, and anything is possible.

Some days, I only think about it for a fleeting moment. Like today, when we were at Sam’s Club eating lunch and Tanner got up to go get some napkins. I watched her as she walked away from our sanitized table and saw her, ever so briefly, drag her hand across another table as she walked by. In that moment, I thought, “Oh please, don’t touch your mouth, please.” Because that germ on that table could be the one her body won’t be able to fight. She didn’t touch her face, and when she returned to our table, I gave her some hand sanitizer and the moment was gone.

Both John and I went through a time when we were mad about that loss of innocence. Mad that we could no longer just send in a donation when we got those St. Jude’s mailing labels and not think about it again until next year. I now see too many children suffering and it is on my mind much of the time. We’re no longer mad about it; we’ve accepted it. But still, it sucks all the same.

I’d give anything to go back to the way I felt at that moment in Disney, but I know I won’t. I know I’ll never look at things the same way, though I look forward to a time when I won’t have to contemplate my child’s life on a daily basis.