Blessed Normalcy

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Tanners B-Day Party 013July 13, 2009 I woke up this morning thinking how cruel it was that after feeling so good for the past week, Tanner was feeling very nauseated… the morning of her birthday party. But, 5 medicines and a bowl of cereal later, she was back in the game and the rest of the day was awesome!

The Build-a-bear party was the most normal experience we have had since Tanner was diagnosed. She was just a normal little girl having her 6th birthday party with 5 little giggling friends. They screamed, giggled, stuffed bears, sang the birthday song… all the normal stuff. She had a ball and forgot for a little while that she had leukemia.

Part of what made it so normal was the she didn’t need any help from us during the party. She has figured out a somewhat unorthodox, but effective method for getting herself up off the floor and was able to march around with everyone else without drawing any unusual attention to herself. Great fun!

Then, the piece de resistance… we took the training wheels back off the bike and rode the whole neighborhood. We stayed outside from 4:30 to 7 pm riding bikes, playing in the gravel, meeting neighbors and rolling in the grass. This is what I love to do with the kids. I love to be outside, to find unexpected friends and just let the fun happen. It snapped me out of a funk I had been in for days.

How amazing that Tanner is doing these things. Is there really chemo in that pill she is taking every day? How can she have this much energy? I think I had given up hope that she would be able to do these types of things for a long, long time.

We’re basking in it while we can.

Love,
Beth

Just Say “Yes” to Build-a-Bear

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dec 08 015July 12, 2009 I stressed all last week about whether to change Tanner’s birthday party date. I had originally scheduled it for the 6th, but thinking we were going to have a break in chemo, moved it to the 13th so she would feel her best. Then, we figured out there really was no break, except a week without vincristine, and couldn’t decide what to do. When she felt so good last week, I kept thinking I should change it, assuming the new chemo treatments would knock her back and she would feel bad at her own birthday party.

Well, her party is tomorrow and she couldn’t feel better!!! The two doses of chemo she received last Thursday and the chemo pill she has been taking daily has yet to affect her, and if anything, I think her energy level has steadily increased all weekend. She has gone from napping two and three hours every day to not napping at all.

Her legs also grow stronger every day. We went to the playground today and she climbed a rock wall! Really. She still can’t run and has difficulty climbing stairs or getting herself up off the floor, but I do think these are just loss of muscle issues leftover from the steroids and from a month spent lying down. She definitely needs some physical therapy, but it’s amazing how much her willingness to play has made a difference.

It’s possible this oral daily chemo she is on may prove me wrong and have a cumulative effect on her which eventually drags her down, but with no more vincristine this month, I hope that she will continue to feel good.

Having said that, her counts were pretty borderline last week, so we’re feeling extra cautious about germs. It’s frustrating for her to feel so good, but still be so limited as to where we can go and what we can do.

Today, I felt like we had to say “no” to her over so many things. “No, you can’t come into the restaurant with Mommy; I’ll pick up the food and we’ll eat at home.” “No, we can’t play in the creek, there are germs in there that could make you sick.” “No, you can’t eat those grapes; you can only eat fruit we can peel.” “Don’t pick up that worm… it’s not good for you.” No. No. No. No. NO!

Ick! It’s not like you don’t say no enough as a parent. To have to say no to so many things is hard. Every time I do, I feel as if I am reminding her she is different… sick.

This morning as she struggled to get up the step from the patio to the back door, she turned and said, “Mom, why are some things that are so easy for some people so hard for me?” I explained about the chemo, but even as I said it seemed like a raw deal to me. She said, “We shouldn’t take something that is so bad for me.” It seems the irony of chemo isn’t lost on even a six-year-old.

But, tomorrow she should be able to do everything everyone else can. In fact, I would say she qualifies as a world champ at Build-a-bearing, cancer or not. There won’t be any stairs, any need to run or do any of the other things that set her apart from other kids. Just some of her best friends, some cute bears, a fairy cake and presents. She can handle that, no problem.

Love,
Beth

It’s Just What People Do

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July 11, 2009 Several weeks ago, I received an email from a friend in West Tennessee letting me know that an 8-year-old girl in his neck of the woods was just diagnosed with ALL. He passed on her Caring Bridge site address and I’ve checked in on her periodically since. Her name is Kinsee and she has T-cell ALL, which I knew to be more rare and more difficult to treat than most B-cell ALL’s (Tanner has pre-B cell ALL). This means a more aggressive treatment plan and a lower success rate. I was so sad for this family, but was captivated by the spunk of this little girl. She often writes her own journal entries, which hilariously, are all about food, since she is still on the aggressive steroids Tanner just finished.

Tanner and I pray every night for Kinsee, our friend Lily who is 8 and has pre-b ALL just like Tanner, and Bill Johnson, an adult fan of “Friends of Tanner,” who is going through cancer treatment. These are our known friends with cancer and we feel an odd kinship with them, though we have never met Bill or Kinsee.

Tonight, I went to Kinsee’s journal to check in on her progress. It had been a while and so I read back through a couple of weeks’ entries. My heart sunk. It has been determined that Kinsee has a very rare type of T-cell leukemia, known as “early” T-cell leukemia. I racked my brain, trying to remember if, in all my research about ALL, I had ever come across this type of T-cell ALL. I couldn’t. I googled it and found an press release dated Feb. 2009 saying that St. Jude, in conjunction with some Italian health authorities, have just discovered that this type of leukemia exists. It has previously been lumped in with all T-cell. Sadly, it is associated with a poor prognosis.

John and I sat on the sofa as I read him the press release, so sad for this family and so thankful that we have had such good news for Tanner’s outcomes at every turn. I said to John, “How do you hear that kind of news about your child?” He thought for a moment and said, “I think people probably ask themselves that same question about us.”

I remember hearing for the first time from the doctor that Tanner might have leukemia. It was, literally, inconceivable. She had back pain, not leukemia. We thought maybe kidney stones, appendicitis… but leukemia? It came out of left field and was just the most surreal, unbelievable thing. When the doctor first mentioned it, I was by myself with Tanner in the ER. I waited until John got to the hospital to tell him, because I was afraid he would wreck the car on the way to the hospital if I told him over the phone. When our pediatrician arrived at the hospital that evening and told us to “prepare yourselves for the fact that it is probably leukemia,” I had such a visceral, physical reaction to those words. I sobbed, I shook, my teeth chattered…

But, over the next few days, while we waited for them to rule out any other options and for the results of the bone marrow biopsy, which is the definitive test for leukemia, we slowly began to accept the idea. I couldn’t tell you how… you just do… because you have no choice, really.

So, I imagine this family hearing that their sweet little girl’s prognosis was much worse than they originally thought, reacted much the same… they sobbed, they shook, they shook their fist at God, and then they accepted it… because they have no choice.

When you child is sick, they need you plain and simple. It is the most natural thing in the world to respond to that need; it’s not heroic or extraordinary, it’s just what people do.

There are no Mother Teresa’s here at the Page house. We are just putting one foot in front of the other because we have to, and because, after a period of time, you accept what is in front of you, and this becomes your new normal. We get tired, crabby, fed up, frustrated and exasperated just like all parents do. And, we laugh, play, get silly, and goof off, just like all families do. Cancer doesn’t change that.

With this blog, I try to resolve my feelings at the end of every day. I try to find the bright spot that maybe wasn’t so evident in the thick of the day. I choose to focus on a moment, however small, that was beautiful, or poignant or sad or gutwrenching and pull out of it what was good, or what can be good tomorrow. It’s just how I, personally, handle this situation. You might handle it differently, but you would handle it, nonethless… believe me. It’s just what people do.

Love,
Beth

On Being Grateful

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July 10, 2009 Yesterday, when we were at Vanderbilt Children’s Hospital for Tanner’s clinic visit, there were several kids in the various waiting areas we visited that reminded me to be grateful Tanner has leukemia. There, I said it. Grateful my daughter has leukemia. Because, for all the horror that word struck in my heart the first time I heard it on May 29, it could be worse. In approximately 2 years, her treatment should be over. She will still have to be tested frequently to be sure we don’t relapse, and for years and years to come, we will worry about her increased risk for a second cancer, but the treatment will be done and she will be living a normal life doing normal things that an 8-year-old does.

The kids I saw yesterday will never do normal things. Their parents will spend countless hours, no years, of their lives in hospitals and doctor’s offices, and undergo too many tests, procedures and treatments to imagine. And, in the end, their kids will never do normal things that an 8-year-old does. And, they will never be able to say that treatment is over.

So, I reminded myself yesterday to be grateful that Tanner has a cancer that is treatable… with a 95% cure rate and that she is low risk with an excellent prognosis.

Then, today, I forgot to be grateful… actually, I just couldn’t be grateful. Days and days of staying around the house, not being able to do the simple things you want to go do, listening to LOTS of whining (no matter how legitimate), enduring the behavior issues that accompany parenting one child who is sick, frustrated and disappointed and another who no longer gets out enough or gets the exercise he needs… all of these things combined just dragged me down. I didn’t feel grateful or lucky… just fed up and tired.

Suffice it to say, I did not win any “Mom of the Year” awards today.

Oddly, two things snapped me out of it: 1) We went swimming at the Whitlers’. Who can be fed up when you’re in a pool? Tanner got to play with some other kids, I got to talk with some adults and Jake got to throw every pool toy the Whitlers own (and they own a lot!) into the pool at least three times. Everybody went home a little happier. 2) My best friend Kim had to put down her beloved dog of 15 years, Boo. I went over to Kim’s house with our other best friend, Beth, and her husband, Glenn, to sit with Kim and realized that I had a better day than she did by a mile. It seemed pretty self-indulgent to be having a pity party at that point.

So, we’ll start again tomorrow. Tanner is doing great so far with the chemo she got yesterday and the daily chemo pill she’s taking. A little nausea, but nothing else, so we’ll cross our fingers that it stays that way and try to do something fun this weekend… without anybody whining… including me.

Love,
Beth

Birthday fun

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July 9, 2009 Thanks so much for all the birthday wishes for Tanner. I held up a handful of birthday cards that came in the mail yesterday and commented that I had never seen so many birthday cards for one person. Tanner said, “A lot of people care about me.” Amen, sister.

We went yesterday morning to the Dollar Store at an off time when no one was there and let Tanner pick out her plates, cups, etc. for her Build-a-bear party on Monday. She’s inviting a few girlfriends and they’re opening the store early so she can go without exposure to any other kids. (Thank you Build-a-Bear) She’s super excited.

Then, last night we had a family party at the house with pizza and a Sundae bar. Tanner hasn’t been able to see her cousin, Mack, since she was diagnosed because the family has been passing a bug around. So, she was really excited and they had a really good time.

Today was our clinic day. We began the Consolidation phase of treatment today, which will last 4 weeks. Had a dose of vincristine (chemo) and an injection of another type of chemo into her spine. In addition, we started on 6-MP, which is an oral chemo she will take daily for the next month. It all went smoothly, although we narrowly missed not being able to start consolidation today because her neutraphil count was very close. It needs to be above 1000 to start and Tanner’s was 1030. Squeak!

So far, so good with this chemo. She came home and watched a movie while she ate, played on the computer with Jake for a while and then we all went outside to ride bikes for a while. She did just fine on the bike. Needed a little push up the hills and to get started, but otherwise did fine. I so, so hope that this dose of vincristine doesn’t set her leg strength back. She’s gaining so much every day and it’s so normalizing.

Special thanks to my Bunco girls tonight for getting me out of the house for a good time. Good girlfriends are good therapy. Also, thanks to my mother-in-law who came again this week so I can get out of the house, spend some time with Jake and have some help. I’m lucky to be part of such a loving family.

Here’s to more days of birthday fun!

Beth

True Friends

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July 7, 2009 When this whole thing started, someone made a comment to me that an ordeal like this will let you know who your true friends are.

I have no idea what they were talking about.

We’ve had nothing short of an outpouring of friendship and love in the last month. When I look around me I see friends everywhere. Right now, there are 455 fans of Tanner’s “Friends of Tanner” Facebook page and I know there are more who log directly on to Tanner Time. Some of those people we haven’t seen for a while — college friends, former co-workers, family friends and whatnot. Some we see lots. Some are acquaintances. And, some we’ve never met. But, here’s the thing; anyone who loves my daughter enough to check in on her every couple of days, who cares enough about us to send us heartfelt words of encouragement that help us get through the day, who offers to help even when we don’t realize we need it… anyone who does these kinds of things is a friend in my book. What else could you ask for from a friend, right?

In the last month, we’ve reconnected with some people that we haven’t seen in a while. They’re the kind of people with whom you pick right up where you left off, as if no time had passed at all. They love our kids… and us, and we love them. They invite us to dinner at their houses, since they know we can’t go out to eat; they bring us brownies and blue powerade; they knit hats for Tanner’s impending bald head. Their kids treat our daughter with kindness, gentleness and love.

Then, there are those that have always been here for us. The friends we see every week, and know, without even asking, that they are at the ready when we need them. They watch Jake so both John and I can go to Clinic with Tanner, they come over and sit in our house after the kids have gone to bed so John and I can take a walk together, they carry my tired child across the street at the end of the night, and they drop by with crafts to remind Tanner she isn’t forgotten.

We are lucky beyond all understanding.

So, maybe what that person said to me was true… an ordeal like this really will let you know who your true friends are. I am humbled to say ours are somewhere around 600 strong and growing.

Love,
Beth

A Relaxing Day

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July 6, 2009 We took a break from all the festivities to just kick back today and stay in our jammies until noon. We watched Shrek 2, made swords out of toobers and zots and had sword fights, downloaded tic-tac-toe to Tanner’s itouch, packed bags and pretended we were going on a trip, and played the Princess Memory game.

We never left the house, although I did try to get Tanner to go on a bike ride. We put the training wheels back on her bike, since I don’t think she could catch herself if she fell. So sad since she had just been riding without them for about 2 weeks before she was diagnosed. She was so into riding that bike; we went almost every day. Today, when I asked her if she wanted to go ride, she said no and when I prodded her for a reason, said, “I don’t think I’ll be able to push the pedals and I don’t want to know if I can’t.” I just told her we could think about trying again tomorrow. What else are you going to say to that?

I think she probably could pedal on a flat area if she were given a push to start, but I think it will be a lot to swallow given that her 2-year-old brother motors around like nobody’s business. I think, in time, she’ll eventually adjust to the idea and just accept it like she has most things.

Her legs have gotten a little better every day since we stopped the steroids and, I think, since we didn’t have a vincristine dose last week. Vincristine is a type of chemo that tends to cause nerve pain and weakness. It’s been two weeks since she has had a dose. She still can’t get up off the ground or climb the stairs without a lot of help and she falls often, but she is limping less and moving better every day. In fact, today she played Dance Dance Revolution on the Wii and did pretty well. Unfortunately, she gets another dose of vincristine on Thursday, but then doesn’t have another dose for the rest of this 4-week phase of treatment. Hopefully, she’ll be able to gain considerable strength during that time.

She told me today that her friend, Corinne, asked how long she would have to take chemo and Tanner told her 2 years. She said that Corinne was suprised, “She didn’t know I had to take it that long, Mom. I’ll be eight years old when we stop chemo, won’t I?” How I would love for that not to be true. She gets it, though. She’ll be six in two days and she gets it. I underestimate her.

Just a typical day at the Page house…

Love,
Beth

Independence Day

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July 5, 2009 If you told John and I a week ago that we could have had the kind of holiday weekend we have had, we never would have believed you. Our daughter is back! Instead of having to convince her to get off the couch, we have to convince her to take a nap.

What did we do this weekend? A better question would be what didn’t we do? Saturday morning we went swimming at the Whitler’s. If you didn’t see Tanner fall on the way to the pool or labor down the stairs, you would have never know there was anything wrong. In the water, she is her old swimming self. Flips under water, swimming to the bottom for torpedoes Jake kept throwing into the pool, paddling across the deep end. She looked like any other kid. It was a moment of pure joy for John and I to watch her in an arena where she could match up to other kids.

Having said that, she was exhausted afterwards. I had to wake her 3 hours into a nap so we could go to a 4th of July cookout at the Adkins’ across the street. The original plan was to go over at 5:30 or so, then come home for a little while for a rest and then go back for fireworks. Apparently, that was not Tanner’s plan. We stayed straight through until almost 9 pm. They ate, played inside and outside, caught fireflies, ate freezer pops and did everything a kid should do at a cookout. Tanner was right there with the other kids. Sure she couldn’t jump or run to catch a firefly and she fell several times, but she hung in there and had a great time. Again, though, when she got tired, it was instant. She suddenly said, “Mom, can we go home now? Right now?” Kendall carried her across the street to the house. John and Jake had gone home earlier when Jake discovered that he did NOT like fireworks. “I not like that BOOM!” he said, with his little hands over his ears.

Sunday was the best day of all. We hung around and took it easy all morning… because… Roger Day was coming to our house for a private concert!!! If you don’t know who Roger Day is and you have kids (or grandkids), you should. He’s awesome. He’s a singer/songwriter that the kids love and the parents can actually enjoy as well. His lyrics are funny and clever, but the music is solid and his concerts are tons of fun. We’ve seen him a number of times and own all his Cds and his video. He plays all over the country, but lives right here in Franklin. You can check him out at www.rogerday.com. A million thanks to him for taking time out of his Sunday to help a little girl who can’t go to his concert this Thursday at Brentwood library (shameless plug). We always go to see him when he plays in town, but can’t anymore because of Tanner’s immune system. After he left, he actually drove all the way home and came back with a signed T-shirt for Tanner that he had forgotten to bring. Nice guy or what?

We invited a few friends over to sing and dance with us and had the best time. All the kids were dancing and doing all the special moves to “Mosquito Burrito” and “Roly Poly.” A physical therapist couldn’t have worked Tanner out any better. Roger played for nearly an hour and serenaded Tanner with his cool Happy Birthday song. She was thrilled. We’ll try to post some video to the site, if we can, to show what fun the kids had. The funniest part was when Roger came through the door and Tanner saw him. She walked to him, intending to throw her arms around his waist in a hug, but fell right before she got to him. Miraculously, she played it off as if she had meant to do it and threw her arms around his calves instead, saying, “You’re Awesome!” She never missed a beat.

After Roger left, Tanner went to Corinne’s house for Ms. Ashley’s famous homemade pizza. Ashley called at 6:30 to say that Tanner was going to fall asleep in her plate if I didn’t come get her. While she was there a tooth fell out, too. When I went to get her, she asked if I would carry her home and when I picked her up, she whispered in my ear, “Can we go straight to bed?” Which is exactly what we did. Exhausted, but happy.

In short, this weekend was better than we could have ever hoped for. I’m not so naïve as to think that there aren’t hard times ahead, but I’m just trying to live in this moment and not worry about what next week will be like. We’ll hang on to the memory of this weekend for a long time and bring it out when we need it to remind us of what is at the end of this long journey. It was the first time that I felt like we ruled the leukemia instead of it ruling us. We got the best of it and declared our independence from it, even if temporarily.

Happy Independence Day! Hope yours was even half what ours was.

Love,
Beth

Sleep… Blessed Sleep

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I find that the less I sleep, the more I realize how underrated it is. By yesterday afternoon, it had become my number one priority. Ironically, Tanner, who was awake with me until 1 am the night before, and had a virus to boot, didn’t seem tired at all. But, last night, for the first time in nearly a month, the whole family slept, peacefully and relatively uninterrupted for a good 10 hours or more. Tanner woke up to go to the bathroom twice, but didn’t eat at all or ask for any painkiller… both miracles and evidence that the steroids are leaving for real.

We see lots of evidence of the steroids’ retreat: a return of our happy, laughing little girl; less stomach aches, more sleeping and less eating. All wonderful things. We are so thankful. It is one thing to have someone tell you you’re little girl will come back to you after the steroids wear off, it is another thing to believe it. I’m glad it turned out to be true.

She laughed hysterically most of yesterday afternoon (maybe she was delirious), which was really good to hear. She made “driver’s licenses” for she and Jake out of business cards this morning and kept asking us to check them. Gladly. Can’t remember the last time she pretended anything.

Even the swelling seems to be going down in her face and stomach, which makes her a little more recognizable as Tanner.

Sadly, she realized last night that she will not be able to go to the Franklin 4th parade today. It’s been a tradition for us to decorate bikes with our neighbors and ride in the parade. She was crushed. We talked for a while about how long it would be until she could be among people again and she figured out that she wouldn’t be going to school in the fall. Again… crushed. She doesn’t want to go in halfway as the “new kid” and is afraid kids will make fun of her and call her names. We talked about it and decided that she would know many of the kids in her class from last year and that we would do all we could to be involved throughout the year so she wouldn’t feel like a “new kid.” She felt a little better and then had the idea that our friends could take pictures of the parade and she could look at them tonight. We saw our friends this morning and Tanner happily yelled to them to take pictures. Amazing. We are going to their house for a cookout tonight and fireworks, if we can take an afternoon nap so we can stay awake.

Special thanks to our friends the Whitlers who created and host this blog for me, and who brought us the most delicious dinner last night. Celia has written a song for Tanner and they sat on the couch and made some changes to it yesterday. Tanner laughed a lot and seemed pleased to have a song written about her. Celia is going to put a melody to the song and come sing it for Tanner. Truly priceless.

Speaking of singing, Tanner’s favorite kid’s singer, Roger Day, is going to do a private concert at our house soon. So excited. We have every CD he ever made and it is so kind of him to do this for her.

So, for all the things we can’t do, there are other really special things to take their place. And, as my Aunt Debbie once told me about something totally different, “It is a season of your life.” It applies here as well. In 6-9 months, we’ll be in maintenance, and although it will be no picnic, we should be able to have a more normal life. And, by then, my almost 6 year old will have taught me how to accept the things that life hands you with grace and a smile.