Headed Home — Minus a Thyroid

September 15, 2010

We’re waiting for discharge at Vanderbilt where I stayed last night after having the second half of my thyroid and, hopefully, all of my cancer, removed. Everything went very well, but we won’t know for sure whether or not I’ll need any radioactive iodine treatment until I see the endocrinologist. That’s the method of giving radiation to any remaining thyroid tissue by ingesting radioactive iodine, which is then absorbed by the thyroid. It would render me radioactive for a few days, but it has few side effects. The lymph nodes around my thyroid turned out not to be a real issue as they were, in my unique anatomy, down my neck further than normal. The doctor did take one parathyroid to test, just in case, and we won’t know about that for several weeks.

It takes a village. Beth stayed with me last night so John could go home. Mom and Kim got the kids to bed and walked Domino. Mom will be here all week and friends have started a dinner list, as usual. We are blessed beyond all understanding with the best friends and family anyone could ever hope for. We often feel we are wearing out our welcome, but they insist on helping anyway. Humbling for sure.

Just a short story about Tanner… she has been collecting soda can pop tops for Ronald McDonald house at school and home. She gets them from all the kids at her lunch table and brings them home and puts them in a little bag… all her idea. It has been driving her crazy that a little boy in her class won’t give her his pop tops. The morning of my surgery she asked me to print out a picture of her with long hair and with no hair. When I asked why she said, “I’m going to show Jordan so he knows why he should give me the pop tops.” LOVE that never give up attitude!

Thanks for all the well wishes. Can’t wait to get home.

Love,
Beth

Clinic Day #40

September 8, 2010

Today was Tanner’s monthly clinic visit for Vincristine and counts. Her neutraphil counts were about where we expected them after having raised her chemo two weeks ago to 75% — 1,500, which is the high side of where they like them to be. If they are still up next month, they will raise her chemo again. I’m hoping that’s not the case as the last 2 or 3 times they have tried to raise her methotrexate level to 100%, her counts have crashed and it takes 3-4 weeks for them to come back up above 1,000. That would mean her missing a lot of school and be so disheartening for her. She’s doing so well.

It was the fastest clinic visit we have ever had. We were in an out in 1 ½ hours thanks to a new method of ordering chemo. Love Vanderbilt. She was back at school in time for lunch.

The weather cooperated enough for us to have a very successful lemonade stand! We don’t have an official count yet, because we have lots of coins to count, but we raised somewhere in the neighborhood of $170!!! Wow! She is so excited and can’t wait to tell Corinne at school tomorrow. Thanks to Corinne, Laurel and Ashley for being our lemonade stand partners.

We had some special visitors at our lemonade stand – Madelyn and her mom, Amy, and brother, Hudson! Madelyn is a little four-year-old girl who lives in our neighborhood and also has ALL. It was fun to see them and always great to be able to chat with Amy.

Started another 5-day pulse of steroids tonight. She is on the same increased dosage that she had such a hard time with last month. I hope she can hold it together enough to make it to her Alice in Wonderland rehearsal on Friday night. She has been counting the days down until this first rehearsal for two weeks.

Thanks to all the sweet former neighbors who were so generous to Tanner’s Lemonade for Leukemia stand today. We miss y’all!

Love,
Beth

Why Me?

August 15, 2010

I’m struggling a little today with “why me?” Why does it feel like just when we’re getting our feet back under us, something else comes along to wash away the very ground under us? Why do we keep having to scrabble back up to dry land? Why should one family have so much to deal with at once?

It’s not that I don’t believe it could be worse… I know it could. But, it could certainly be a lot better, too. Can I get an Amen?

My extended family is at the beach this week. It’s an every-other-year trip that I really look forward to. My parents, brothers, nieces, sister-in-law, aunt, and significant others and the Pages all rent a big house in Santa Rosa for a week in August. Except this year we can’t go. Tanner can’t swim in the ocean and the chemo makes her extra sensitive to the sun, so us going would have been an exercise in frustration.

I love the beach. There is something about that breeze that comes off the water, the salty smell, the sound of the surf hitting the sand… it all makes me feel like I somewhere so far away from home that none of my problems can follow me there. I found myself this morning crying because I knew that even if we had been able to go there this year, our problems would have still followed us. No amount of fresh salt air could have washed away Tanner’s cancer, much less mine. It couldn’t have washed away the year behind or the year to come.

So, I’m stuck in “why me?” land. But, I find that when I ask that question, more good things come to mind than bad.

Why me? What did I do to deserve such an awesome husband? One who puts us before himself every day. One who is unfailingly thoughtful. One who is there like a rock, no matter how bad it gets.

Why me? Why did I get such sweet, funny, spunky, creative, bright, energetic, happy children? One who is brave beyond her years and one who makes his mama smile even on her worst days.

Why me? Who has friends and family like we do? The kind that send a gift card to Panera, or flowers, or a meal, or a pair of flip flops for my tired feet. The kind that just show up when you need them, no matter what time. What a blessing.

Why me? Why did I get the most successfully treatable cancer there is? Why didn’t I get something scarier, like breast cancer? For that matter, why didn’t Tanner get AML instead of ALL? Or be 15 instead of 5 when she was diagnosed? Or be a boy instead of a girl? There are so many ways we have been blessed within our difficulties.

“Why me?” can be a pity party or a revelation. It depends upon how I choose to look at it.
I choose the latter.

I choose this life. The one I have right now with these people in it. With all the surgeries, the hospitals, the doctors, the pills, the cancers, the fear of what may come… I still choose it. This is my life with my family and friends and the good things will still outweigh the bad… if I let them.

Love,
Beth

All Went Very Well

July 29, 2010

Back home from surgery. Went so well, I didn’t even have to stay all night. I’m feeling better than I thought I would, but still tired and in some pain.

Domino faithfully by my side, stealing all my bed space.

God Bless Vanderbilt Hospital. We often wondered if the adult hospital was a wonderful as the Children’s hospital… it is. And Dr. Netterville, the director of head and neck center, who did my surgery, is awesome.

Thanks, as always, to all our wonderful friends and family who rally round when we need them. Love you all.

Love,
Beth

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.

Love,
Beth

P.S. You can watch two of her solos by following this link http://gallery.me.com/john_page#100082. We kept the clips short so as not to compromise the privacy of the other kids in the show.

Clinic Day #37

July 15, 2010

Hurray for counts above 1,000!!!! Finally!!! Tanner’s neutraphils were at 1,500 today, which means she can have salad and go to a restaurant again! She was very happy.

Mercifully, we had a pretty quick visit today and got her back to theater camp by noon. She is so excited about tomorrow’s performance. I keep trying to fend off the bad thoughts that keep creeping into my head when I remember that she was super excited last time as well and woke up sick that morning. I can’t shake the feeling that we are not quite home free yet. I’m trying to let hope win, though, and think positively.

Today at clinic, we were once again accompanied by Ms. Donna, who is videotaping Tanner’s clinic visits for a fundraising video for the hospital. It’s sort of like being on a reality show. Tanner had a little bit of a hard time acting like herself today with the camera there, but forgot about them long enough to sing “Day by Day” with the music therapist in the infusion room. She asked me to sing with her at first, then got confident and asked me to stop singing with her (lol) so she could take her act solo. She is singing that song in her performance tomorrow and she has a solo at the beginning of the song.

We had a sobering moment in the waiting room before being taken back. A little boy, maybe 5 years old, walked through the waiting room. His hair was gone and he had that familiar gray look kids get when they are taking a ton of chemo. He also had a feeding tube taped to his cheek and I detected a familiar little limp that told me the chemo was affecting his legs. Tanner watched him walk through and then looked at me and said, “That boy is taking everything.” I nodded and watched a look pass over her face that a 7-year-old shouldn’t have. In that fleeting moment, I knew she understood the seriousness of this cancer business, the gravity of the potential consequences of this disease and it’s treatment. I pulled her to me and hugged her tight with tears in my eyes. And then it was gone. She giggled and said, “Stop squeezing me!” The child was back.

Love,
Beth

Nine Screaming Girls + Jake = One Good Time

July 10, 2010

I’m sitting on the sofa completely spent from hosting Tanner’s Rock Star birthday party for nine little 7-year-old girls. Two super teens from the neighborhood did the girls’ makeup and hair, Aunt Beth applied tattoos, they all decorated cardboard guitars and then we did some dancing and singing and got our rock star on! It was one of the most fun parties we have ever had for the kids. Pressure is on for Jake’s next party; we’re going to have to make it a doozy!

We’ve spent the last few days mostly preparing for the party and swimming at the pool. Thursday night (for Tanner’s actual birthday), we had pizza with E. and LaLa, cupcakes with some neighbor kids and caught fireflies outside. Tanner finally got to catch some fireflies. They had a great time!

Even Domino wants to check out Tanner's fireflies

Thanks to everyone who sent birthday messages… Tanner and I sat at the computer for two days and read them all. They made her smile and feel special.

Poor Jake had a little bit of a hard time with Tanner’s birthday. He’s apparently just gotten old enough to realize that he isn’t getting the same special treatment she is. He would ask in his little voice, “Why I not get a cake? Can I get a car cake?” We made him a special non-girly gift bag for the party, which he loved, but he hid in the media room for most of the party, playing Star Wars wii by himself. Poor little man. When the excessive girliness and screaming was over, he came back out, busted a move or two on the dance floor, got a tattoo and ate his ring pop. It all turned out okay in the end.

Domino attended the beginning and end of the party, but stayed in his crate during the rest, hiding from the chaos. He managed to snag a piece of pizza from the trash after it was over, though. Score one for the dog. He loves him some pizza.

It was a really awesome party and I think Tanner and the girls had a great time, thanks to everyone who helped!

Love,
Beth

Yay for Domino Day

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

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