Summer Break

May 24, 2010

Seems like Tanner just got back to school and now it’s already over for the year. I think she had just settled in; she was really sad for it to end. She did really well, though. She managed to keep up even though she missed so much, thanks to Mrs. O’Hara and Mrs. Franklin. We are so thankful she is able to continue going to Moore; they take really good care of her there.

So, summer’s here! We’ve started with a bang! We had a birthday party on Saturday and some friends over last night and played outside almost all weekend long. Tanner feels great, mostly because she has “skipped” a dose of Vincristine and a pulse of steroids she should have had last week. Her monthly clinic visit fell on the second to last day of school… the day of their class party. Dr. Mixon was nice enough to let us move it back a week, so this Thursday, she’ll get Vincristine in her port, start her five-day steroid pulse and have a lumbar puncture with a methotrexate injection. That ought to stop her from feeling so good… sigh.

This morning, she and Jake and I started the day by going to see the new Shrek movie at 9:45… we were the only ones in the theater! Tanner danced down front after the movie was over and we had a great time. Tomorrow – swimming in the neighborhood pool… brrrrrrrr. And, Wednesday… a slip n’ slide party in the yard.

We’re going to make a list of all the things we want to do this summer… camping in the back yard, a firefly party, trip to the zoo, etc., and make sure we do them. Grab life while you can, you never know what might happen to change it.

Today, Tanner I wrote this story on the computer. I wrote the first four sentences and she wrote the last two:

Once there was a little girl named Tanner. She was blonde with beautiful, big blue eyes that looked as if they were reflecting the ocean. She was strong and brave and faced the most difficult things with grace beyond her years. She was a hero, but she didn’t know it. And she fought leukemia she had to take cemo and starods. And before you new it she was fighting it like a champ.

Happy Monday.

Love,
Beth

A Whole Week

March 19, 2010

Tanner made it. A full week of school. It seems so surreal, but at the same time, so normal. Normal, normal, normal, normal… I love the sound of that word. I’ve kind of forgotten how to do normal. I had the opportunity to do cool things with Jake this week and couldn’t remember what to do. We did go to playgroup today for the first time in more than nine months. He got to play with a whole group of kids his own age… priceless.

Tanner’s teacher said she did great this week. She isn’t behind at all academically and she said she was astounded by Tanner’s stamina. When she gets tired, she lies down in a beanbag chair in the classroom for a rest, but has mostly seemed like any other energetic first grader. Many thanks to Mrs. Franklin for taking such good care of her this week and to Mrs. O’Hara for preparing her so well for returning to school. Because of her expert tutoring, Tanner has been able to keep up with her peers.

I’m so scared to really enjoy the moment, though. So afraid it won’t be long before she is disappointed again. Scared that the recent increase in chemo to 75% dosage might have tanked her counts and we’re sending her to school with no immune system. Scared Tanner is pushing herself too hard and will get fatigued and get sick. Scared, scared, scared. I hate living like that. It’s one of the not-so-great side effects of this journey.

Beth and I sat out on the deck today and ate lunch while watching the birds and the squirrels playing around the creek. So much nicer than looking at a fence. It’s peaceful here and that’s something I’m trying to remember to take time to enjoy.

Played in our old neighborhood today. Jake and I parked there and walked over to the school to pick Tanner up. We brought scooters and just stayed to play with our friends. It was good medicine for Tanner to see how easy it was to still play with Corinne. She has been so anxious about that.

More unpacking and curtain hanging on tap for the weekend. And rest for Tanner. Recover from this week and gear up for the next. I’m not so naïve as to think there won’t be bumps in the road, but I’m really hoping for a smooth ride for a little while. Tanner needs it.

Love,
Beth

Indoor Fun

February 14, 2010

Tanner and Jake playing wii

How many ways can you have fun while stuck in your house and no visitors allowed? We’ve tried ‘em all… trust me… but have had lots of help from friends.

Thursday afternoon, our dear friend Anna Lynn, who is forever thinking of us, and is forever creative, brought Jake’s valentines from his class to us. He had missed his valentine’s party (and his Christmas party and his Thanksgiving party). His class made valentines for Tanner, too, so we had a lot of fun opening them. She also brought beautiful yellow tulips (that’s so Anna Lynn), valentines from our church staff and sugar cookies with a cookie decorating kit (from another dear friend). We were opening those valentines when I got a text from Tanner’s home teacher, Mrs. O’Hara saying there was a package on the doorstep. It was an early housewarming gift – pots with gardening gloves, tools, seeds and even dirt. How cute!

Friday, Corinne brought home Tanner’s valentines from her class… she LOVED them! There was one unsigned valentine and she’s still trying to figure out who her secret admirer is (I love this!). I opened the door to find another package from Mrs. Wood’s 4th grade class – they have been so super to Tanner – they sent valentines and birthday cards for Jake. So sweet.

We also had valentine packages from some of John’s co-workers and from all the grandparents. It has really helped alleviate the boredom. These days have been hard on all of us, but Tanner is especially frustrated. She had a small taste of freedom and then it was taken away so quickly. She is definitely feeling it.

We had a breath of fresh air Thursday and Friday from Aunt Beth. Beth is one of my two best friends and has been so unbelievably generous with her time. She is my savior when I need to balance the impossible – a child who can’t leave the house and a necessary task that requires me to leave home. Thursday afternoon, she came so John and I could meet with Tanner’s school. Then, she stayed overnight so I could take Jake first thing Friday morning to his annual kidney ultrasound. Jake was born with one kidney and has to be monitored. His one kidney is stellar! Tanner got to stay with Aunt Beth while Jake and I left for several hours and I think Beth must have been totally pretended out by the time she left!

The meeting with the school went great. They were so awesome and are doing anything and everything they can to make sure Tanner will be as safe as possible when she returns to school. She will have her own bathroom and her own computer to cut down on sharing germs. Together, the group of us that met developed a 504 plan. It is a legal document that spells out Tanner’s limitations, outlines what the school will do to accommodate them, and excuses her from normal absence rules, etc. She’s done so well here at home keeping up with her schoolwork, thanks to Mrs. O’Hara. She continually scores at or above grade level.

Thank God we have this new house to go “visit” when we are bored out of our minds and tired of looking at these same four walls. We go jump in the bouncy house and ride the little train and run around in the empty space to get out our ya yas! John went over there for several hours today to put together Jake’s new Batman battery powered ATV. We’ll give it to him tomorrow on his birthday… he will, to say the least, be beside himself. He loves anything to do with cars and motorcycles and asked to have a motorcycle birthday party. Beth and I painted a mural on the wall of his new bedroom with a road coming through a green hill and clouds in the sky. We’ll use the road as a headboard for his race-car bed and put his airplane shelves in the sky looking like a red plane flying out of the clouds (Thanks, Johnny). It has been a rough road for him, too, and he deserves an awesome room.

We all made valentines for each other today and had fun giving them to each other after dinner. The kids and I decorated the sugar cookies for John, but couldn’t eat them after all the valentines candy.

So, we’re stir crazy, but trying to make lemonade, if you know what I mean. Tomorrow is Jake’s birthday. I am sad that there is no one but us to celebrate his day. Usually, we invite family and maybe a few close friends for cake after dinner. He’s too little to really understand the big party is coming. We’re hoping Tanner’s counts will be high enough on Thursday to come to his party, but if not, will have it anyway. He needs to have his birthday… even Tanner said so.

Three years ago today, I was going to bed right about now, bags packed, knowing that I was getting up to head to the hospital to deliver a baby that threatened to be too big if we waited. Jake beat the doctors to the punch and came on his own that day, without induction. So like him to be accommodating. Eight pounds, 15 ounces of beautiful, long, sweet baby boy. John and I knew Valentine’s Day would be forever spent preparing for his birthday and could care less. He is the best Valentine’s gift we could ever ask for.

Much love,
Beth

School Spirit

January 18, 2010

Last week, Tanner, Jake and I went to Tanner’s school so Tanner could take a literacy test. It was the first time we had stepped foot in the school during school hours since Tanner was diagnosed. We were headed to Mrs. O’Hara’s room (Mrs. O’Hara is Tanner’s homebound teacher and she is AMAZING!) She is a reading teacher so she doesn’t have a ton of kids in her room at once and had us come in during her break so Tanner wouldn’t have to share the room with other kids.

We also planned on putting some money into the Pennies for Patients jars that the school has out in the front of the school. Pennies for Patients is a Leukemia and Lymphoma Society fundraiser for schools and Moore is in the midst of a pocket change campaign in Tanner’s honor. There was a poster of Tanner and five large water jugs full of change, one for each grade. They are having a contest to see which grade raises the most money. Tanner put her change into the first grade jug while Mrs. Green, the principal, snapped pictures.

The week before, the school had announced the campaign with a special announcement in the morning and a showing of a Charlie Brown movie about a little girl with leukemia. It’s a great movie that shows kids what it’s like for a child with leukemia and prepares them for hair loss, absences, etc. So, now, everyone knows who Tanner is. (I’m pretty certain there’s only one bald girl at her school.) As we walked the halls to make our way to Mrs. O’Hara’s room, we passed lots of classes on their way to lunch. You could see the kids react as they realized who Tanner was. They waved, they said, “Hi Tanner,” and a kindergartner even whispered to her, “I gave you a dollar!” Tanner and I laughed because he thought she was getting the money.

A very earnest fourth grade girl stopped in the hallway and said, very sweetly, “I’m sorry you got Leukemia. I hope you feel better soon.” Kids never cease to amaze me with their beautiful honesty.

Tanner was a little puzzled at first by all the attention, but anyone who knows Tanner knows that she loves her some attention, so she was in her element. I was proud of her poise in light of how many kids she didn’t even know were waving at her and smiling and looking at her. She held up beautifully.

A really special moment was when we saw Mrs. Wood and got to meet her fourth grade class. She and her class have been extremely kind to Tanner and they really wanted to meet her. They leave her messages on her blog and two little girls are growing out their hair so they can donate it to Locks of Love in Tanner’s honor. Locks of Love makes wigs for kids who have cancer. They pulled their ponytail holders out to show us how long their hair had gotten. (Thanks Emma and Maggie!)

We’ve been getting wonderful packages all along from the school. Tanner’s class and many others have made sure that she knows she is missed. But, it was entirely another thing for Tanner to be able to feel that love first hand. I have no doubt that we made the right decision about keeping her at Moore after we move and continuing there next year. We are grateful to the school district for allowing us to do that. It will assure that she feels supported and nurtured.

The school also had a used book fair that day and Tanner really wanted to go. I waffled, thinking of how many people would be in a fairly small space. While we had seen a lot of kids on the way in and out of school, we hadn’t really touched anyone and had kept a safe distance. But, I just didn’t want to rain on such a great experience and decided we would risk the book fair. While we were waiting our turn to go into the room, a whole class of what looked to be third graders were in front of us. One little girl turned around and recognized Tanner. It was like a game of “telephone” after that, each kid turning to the next and whispering, “That’s Tanner Page! Do you see her?” They waved, smiled and were extremely sweet. After several minutes, Tanner motioned for me to bend over so she could whisper in my ear. “I think I might be famous,” she said with a look of disbelief. “I think you might be,” I agreed.

A huge thank you to Moore Elementary School for everything they are doing to make Tanner feel special and to prepare the other kids for her arrival. We are so grateful for the money the kids are raising to help find a better way to treat blood cancers. One parent told me her kids are doing chores to earn money so they can put it in the jug. Mrs. Franklin, Tanner’s classroom teacher, has graciously allowed us to invade her class by computer, which I know is somewhat distracting, but we really appreciate it. We hope this week at clinic, they might give her the go-ahead to return to school. She’s ready and cannot wait.

Love,
Beth

What a Great Weekend

January 11, 2010

Tanner modeling my new coat

It was the most fun and normal-feeling weekend we have had in a long time. Saturday morning Tanner’s homebound teacher, Mrs. O’Hara came and they had a great session. Then, Jessica came and stayed with the kids until the afternoon while John and I went and did some new house shopping, picking light fixtures, carpet and tile. It was fun just tooling around together and I found that I didn’t think about cancer almost at all the whole time. Jessica and the kids made a card for her fiancé, Harley, who is serving in the marines overseas. Harley once sent Tanner a picture of himself with his marine haircut and Tanner with her leukemia do and said all the guys in his unit thought she looked cool. It hangs on our refrigerator and is one of the nicest things we have received (and that’s saying something!).

After John and I came back home, we all went to a friends’ house for tacos and fun. These are great friends who have been so kind to us. They go to our church and Tanner has known their daughter, Gracie, for a long time. They also have a son, Sam Ross, who is Jake’s age, so it made for an extra fun playdate as everyone had someone to play with. Their kids a similar energy levels to ours and we were treated to some crazy concerts and dance exhibitions.

Sunday, Tanner and I went to the mall together. She was feeling really bad when we left, with a lot of pain in her legs, but was determined to go. We took a jogging stroller with us so she could ride if her legs continued to hurt, but some painkiller seemed to fix the problem and she ended up pushing more than riding. We ate lunch in the foodcourt (another first since diagnosis) and did a little shopping then came home in time to go for another visit. Our friends Steve and Michelle were nice enough to let us come over and look at their beautiful kitchen to get some design ideas and the Tanner and Jake love to play with their girls. We finished the day with some Wii and everyone went to bed tired, but happy.

We also got some really great news… Tanner can go back to dance class. WOW! It will mean so much to her to be able to belong to something again. Not to mention how great it is for her legs.

So, we had a great weekend. Pretty normal, if you don’t count all the medication and the leg pain. Still, an idea that long term maintenance does equal more freedom, even if there is still more chemo involved than anyone would like.

Hope you had a good one, too.

Love,
Beth

Lemonade for Leukemia

Lemonade for Leukemia

Lemonade for Leukemia

September 28, 2009 This afternoon, Tanner, Jake and I made a pink sign that said, “Lemonade for Leukemia.” Then, while Tanner had school with Mrs. O’Hara in her classroom, Jake and I made lemonade and packed the wagon with a card table and chairs, cups and Leukemia and Lymphoma Society red bracelets.

At 5:10, we pulled the wagon across the street and set up shop. An hour later, we packed back up, having collected $259 for Tanner’s Light the Night Team. Yes, you read correctly… $259!!! Tanner is so excited. We came home and I thought after dinner we would count up the money and make the donation on-line. But, Tanner had other ideas… she wanted to know if she could have the loose change that John and I throw into various containers throughout the house. Needless to say, we’re taking it tomorrow to Kroger to put it in the Coinstar machine to be counted.

But, here’s the best part… she lost a tooth today (that’s a whole other story) and we put it under her pillow for the tooth fairy. After putting her to bed, I came down to eat dinner and she showed up on the balcony and said, “Mom, I want to write a note to the tooth fairy to ask for extra money for Light the Night. Can you help me?”

So, she dictated the following note:

Dear Tooth Fairy,
Please leave extra money so I can get ahead of the other team and have the most money for Light the Night.
Love, Tanner, Jake, Mommy and Tanner

She asked me, while I was writing the note, why I kept laughing. I wanted to tell her that I loved her competitiveness, her never-give-up attitude and her wonderful innocence in thinking that we could somehow make up the $4,000 that separates us from the first place team. That is the attitude that will help her come through this stronger than before and I love seeing it.

So, look out! Tanner Page is on a rampage to be the high dollar fundraiser for Light the Night this year.

I want to thank my friend Robin Embry for putting together this Light the Night team for us and all my dear friends at Lovell Communications for jumping in to help. I don’t think we would have ever done this without her and it has turned out to be the most positive thing for us. I know that I’ve dedicated a lot of blog space to this event, but it’s not just because we want so badly to see this cancer eradicated. This fundraiser has given us, and especially Tanner, something positive to focus on and has empowered her to feel like she could have some effect on this disease. That is priceless and we thank everyone for helping her feel this way.

Now, excuse me while I go find my wallet and make sure the tooth fairy is generous.

Love,
Beth

A Long Day for the Right Reasons

Ready for Clinic

Ready for Clinic

August 6, 2009 Did you ever feel like it’s been about four days since this morning? Today was chock full… of goodness, luckily. Today was clinic day and our first day of Interim Maintenance. Tanner’s neutraphils (big infection fighting white cells) were down to 1500 from 3400 last week. 1,500 is still good for a kid with leukemia, but 3,400 was almost normal. So, farewell freedom… it’s back to precautions. We feel lucky to have had that week, though. It was nice to be able to get out.

I always feel like my preconceptions about chemo have been dramatized by television. I picture rows of people sitting in infusion chairs for hours, receiving IV chemo and feeling really sick. While there are some chemos that require a long infusion time, most don’t. And, there are definitely some kids in there that look like they’re feeling really bad, but many don’t. Tanner received two types of chemo today in less than 10 minutes. No IV pole or anything. The nurse just injects them very slowly from a syringe into Tanner’s IV line which is connected to her port. All done. And, as far as feeling really sick… we haven’t come across that yet as of bedtime today. In fact, Tanner was super active today. We played Wii Cheerleader, swam at the Whitler’s and played with some friends that dropped by after dinner. Chemo?!!! What chemo?!!!

Of course, I’m not naive enough to think this will last. I do believe this phase will be more difficult than the last and the cumulative effect of the vincristine and the increasing dosage of the methotrexate will take their toll. But, for now, you would never know anything’s wrong with her.

I registered Tanner for 1st grade at Moore Elementary this evening. It was bittersweet. I was excited that she got Mrs. Franklin as a teacher and that Mrs. O’hara, the reading teacher, will be her homebound teacher. She also has a great class, with many little friends from kindergarten. But, it made me sad she couldn’t come with me like all the other kids, to meet her teacher and see friends she hadn’t seen all summer.

Tanner made me promise to write down the names of all the kids in her class. When I got home, we got her jammies on and sat in bed with her yearbook and looked up all the kids, her classroom teacher and her homebound teacher. Tanner is a social butterfly and she knew all but two of the kids in her class; and those two were new to the school. She was really excited and I wondered whether she really understands that all those kids will be in class without her for at least half the year.

The school is being so remarkable about trying to make her feel connected, though. They’re investigating the idea of teleconferencing through computers so she can check in with the class once a day, and the homebound teacher said she was going home to read Tanner’s blog so she could learn more about her. Her kindergarten teacher, Mrs. Cope stopped by this past weekend and brought Tanner a Build-a-Bear. She asked if she could stop by once a week during this school year and read with her. Wow! Moore Elementary is a small school and we are so grateful for the feeling of family there and for the love and concern they show us and our daughter.

So, it was a full day, but a good one. Four days ago this morning, I thought we might have had a rough day because of the chemo, but it was a great day. Which just goes to show you how unpredictable leukemia, chemo and my kid are.

Love,
Beth