One Down, One to Go

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August 9, 2010

A little IV pole never stopped anyone from playing legos

All finished with the IVig transfusion. It didn’t take as long as we expected. Apparently, the first time they give the infusion, they have to do it slowly in case the child has a reaction. But, the next time, they can infuse faster since they know she didn’t have a reaction last time. So, it was a shorter visit than we expected, which was a great surprise.

Still, we were there for about three hours, but actually had a pretty good time. The kids were so into playing legos that they didn’t want to leave. They also had a good time with Guy Gilchrist, the man who draws the Nancy cartoon from the newspaper. He was at clinic teaching kids to draw. He also drew the Muppets cartoon for years and taught Tanner to draw Kermit. He was funny and entertaining and helped pass the time.

Tomorrow is Tanner’s last day of summer vacation. Wednesday, she goes to clinic and Thursday is the first day of school. We’re going to see a movie in the morning, registering for school in the afternoon and then, hopefully, swimming with friends.

Wednesday morning is the dreaded lumbar puncture. Tanner is very worried about it. We’re going to give her ativan in the morning, an anti-anxiety medication, and hope that helps her get through it with the minimum amount of trauma. Please pray for her. It’s wrong for a child to have to worry so much about something.

Love,
Beth

Right Day, Wrong Year

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August 6, 2010

It’s August 6 and I know I should be grateful that Tanner’s made it through 14 months of chemo and only has one year left, but I can’t help wishing it was August 6, 2011. Today marks exactly one year left of chemo treatment. Even Tanner didn’t know exactly how to feel about this.

John brought home a cake that said… “Go Tanner! One more year!” Tanner was happy for the cake, but at bedtime I asked her how she felt when I said that one year from today, she would stop chemo. “A little sad,” she said. “A year is a really long time.” See, “one more year” is not very inspiring. (see my “No More” post from last week)

So, we had a small celebration, not a huge one, and we’ll keep on keeping on.

Jake came home yesterday! Hurray for my little man being home! My parents brought him back and stayed the night and we spent the morning watching shows the kids did in the basement before they left to return home and get ready for some more grandchildren to show up at their house next week.

Tanner has some kind of weird cold virus that she is apparently fighting pretty well. She sounds lousy when she wakes up in the morning, but seems fine during the day and then feels a little bad again at bedtime.

We go in on Monday for another IVIg transfusion. IVIg is an immunoglobin transfusion that provides antibodies to help bolster her immune system. She had one back in February and it helped so much. She was catching one respiratory virus/infection after another and then once she had the transfusions, stayed pretty healthy the rest of the school year. I asked the doctor to check again before school started and, sure enough, her levels were even lower this time. Just didn’t think that was the best way to start the school year. She’s caught her fair share of colds/coughs/strep this summer and I think the infusion will help. It takes about three hours so we opted not to tack it on to her clinic day on Wednesday, since she is having her spinal that day and it is already a long day. So, transfusion Monday, clinic day Wednesday, first day of school Thursday. Busy week.

We’re going to let this day pass somewhat quietly… it’s the wrong year. August 6, 2011 though, look out. The celebration will be completely out of control.

Love,
Beth

Girl Time

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August 3, 2010

Tanner at Lookout Mountain

We miss Jake… we do. It’s so quiet and calm and girly around here. But, there’s something nice about it, too. It’s a little more grown up and less chaotic, and Tanner and I are soaking up our time together. Jake is in heaven at my parents’ house where they bought him his own set of golf clubs and take him to the golf course every day to hit balls on the range. Dad said he hit seventy-five balls the other night!

It has been so cute to watch Jake and Tanner miss each other these last few days. I forget how much time they have spent over the past year and, despite normal sibling squabbling, how close they are. Jake told my Mom and Dad that Tanner was his “fweind… and my sister.” And, today when we skyped him, he said, “when I get home I am going to give you a motorcycle… a purple one!”

Then, today, at quiet time, Tanner took a little create-a-book kit and wrote him a whole book that told him she loves him and that he is “the best brother” and he is going to be a race car driver when he grows up. It is adorable and something I will keep for him for the rest of his life.

I’m feeling stronger and better every day. I’m still turning my whole body to look to the right or left, but I’m driving and not in real pain anymore.

Yesterday, Tanner and I went to buy all her school supplies then laid on the sofa and watched movies. Today, we went to the movies with friends, had lunch out with Aunt Kim and bought some sneakers at the mall. After a rest at home, we did a late afternoon swim at the neighborhood pool (I sat, she swam) and ran into some friends. Tomorrow, Tanner has requested to go to Sweet and Sassy for a pedicure, but we may have to settle for a manicure. She has an open cut on her toe and soaking in one of those tubs might not be the best idea germ-wise.

She’s been feeling pretty good these days. Some sporadic stomach upset, but lots of energy and no leg pain. That will all change next week. Wednesday is dreaded Lumbar Puncture day. We are switching clinic days from Thursday to Wednesday to follow our doctor. Wednesday she will get her Vincristine through her port, start her five-day pulse of steroids and get methotrexate injected into her spinal column. She has already started worrying about it and is asking every day how many days until then. The next morning after all this chemo, she will have her first day of school. Yeah… it sucks, but what are you going to do? Hopefully, we can be proactive with the anti-nausea medicine this time and she won’t get so sick. I just think it seems unfair that it should be such a joy for her to be able to be there for the first day of school this year after missing the first seven months of school last year, but she may feel like crap and it will be ruined by this rotten disease… again. This, in a nutshell, is cancer… unfair on so many levels.

Jake comes home on Thursday with my parents who will stay a few days (Happy Anniversary tomorrow, Mom and Dad!) to help out before they go back home. Last chance for all things girly tomorrow…

Love,
Beth

No More

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August 1, 2010

I spent most of today alone in the house, resting. John took Tanner and John to Chattanooga, where he met my parents and handed Jake off for a couple of days of special Grandmom and Grandad time. He and Tanner then went to Lookout Mountain and did Rock City. They had a ball and came home very tired. But, we all miss our little man already.

As I was resting on the sofa watching movies, I was feeling a little sorry for myself. Oddly, because I feel pretty good, but my neck is still too sore for me to stay up very long without it starting to hurt; it feels much better when it is resting against a pillow or the sofa. But, because I feel good, I’m a little stir crazy and tired of looking at the inside of our house.

I found myself thinking, how many more days until I can get back to my normal routine? And, then I thought, how many times must Tanner have felt this way? How many times must she ask herself, “How many more days until I can get back to being normal?” How many more times will she have to go to clinic? How many more times will she have to let them put that needle in her chest? How many more times must she be terrified she won’t wake up from the sleepy milk? How many more times will she skip dinner on Friday night because of her Thursday night dose of methotrexate? How many more fun things must she miss because her counts are low? More, more, more…

How long must this journey feel to her? I can’t imagine. I know how long it feels to me and I’m only sitting on the sidelines. Five days of neck pain has inspired me to feel sorry for myself. What would fourteen months of chemo do to me?

I’m going to try to remind myself how I feel today the next time I ask Tanner to suck it up and just take her chemo without complaining. She has every right to be sick of this. And, I’m going to stop telling her, just one more year. It’s not an inspiring comment.

Love,
Beth

All Went Very Well

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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

A Quick Update

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July 27, 2010

Jake hid in the garage during the shaving cream fight

Sorry it’s been a while since I last posted. A few of you… ahem… (you know who you are) have gently reminded me I have been slacking a little. As my friend Ashley said, though, when I don’t post for a while, it usually means everything is great.

It is. Great, I mean. We’ve been busy enjoying the end of summer before school starts in a few weeks. I’m having that thyroid surgery tomorrow, so summer is pretty much over for me and I’ve been trying to squeeze in the last little bit of time with the kids before I’m out of commission for a little while.

So, here’s the short story about the last week or so: We had water day in the cul-de-sac… slip n’ slide, water balloons, shaving cream fights, etc. We’ve checked a few items off our family summer fun wish list like making homemade ice cream and swimming at night with the lights on in the pool. Tanner’s in dance camp this week which will culminate in a show that neither John nor I will be able to see, but Aunt Beth and E. and Jake will attend. And, other fun summer stuff like bike riding, swimming and throwing rocks in the creek.

So, surgery for me in the early a.m. and I probably won’t post for a few days until I can be sure that my posts will be coherent (pain meds and public forums do not mix). We are, as always, well taken care of by our family and friends. Our support network is nothing, if not efficient, by now.

Wish me luck.

Love,
Beth

The Luxury of Being Proud

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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

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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

Theatre Camp Redo

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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.

Love,
Beth

Nine Screaming Girls + Jake = One Good Time

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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