Category Archives: emotions

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.

More Great News!

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In the words of Tanner’s doctor she is now among the “lowest risk” of all leukemias. The results of the detailed bone marrow study from yesterday confirm that there is no leukemia left in Tanner’s bone marrow. TAKE THAT CANCER!!! This isn’t some cupcake you’re dealing with here… this is Tanner Page. I mean, have you ever seen this child throw a tantrum? If you had, you would have never chosen her as an incubator for your vile, evil lazy leukemia cells. You would have recognized that you have met your match! Just move on, give up and DON’T BOTHER TO COME BACK!!! This is how we roll at the Page house and you are NOT up to it… I promise!

So many things to be thankful for this week. Our last day of steroids for a while, the end of the first phase of treatment, Induction, and now this. Just two days with no steroids and I can already see a difference in Tanner. She is still eating like a maniac, but she was definitely more lively and sassy today and her stomach pain seems to be lessening. Hoping she sleeps better tonight.

Thanks to all our friends who came by today, we had a great day. Tanner had visits from Gracie, Leah and Zach and Grandmom came today, too. Big day with lots of fun. Thanks to Leah for teaching Tanner how to “finger weave.” She sat on the sofa all afternoon weaving a very long rope. It made me happy to see her sitting up for that long instead of lying down.

Tonight as we were going to bed, I tried to tell Tanner how proud I am of her. I just hope it sinks in because usually she looks like she’s just embarrassed when I say stuff like that. I tried to explain “grace” to her, which is very difficult, I found out, to explain in terms that a five-year-old can understand. I finally resorted to referencing a Disney movie “Princess Protection Program” to explain the concept. I think she understood. I told her that I was particularly impressed by how she was handling losing her hair, which has been falling out for the last week or so. She looked shocked and said, “My hair isn’t falling out!” Oh no, I thought, she’s in denial now. Then, she exploded into peals of laughter and shrieked, “I’m going to glue it back on! No, I’ll finger weave it to my head!!!” We laughed hysterically and I reminded myself how lucky I am to have gotten such a kid. I’m glad to see her sense of humor returning to her. Goodbye steroids… for now.

Thanks again for everything people are doing for us. We are humbled every day by the outpouring of support our child has inspired. She is awesome and we know it, but to see many others recognize it and lift her up and help carry her through this awful mess is so touching. We are blessed by those who love our daughter and care about her plight in this way. All we can do to repay this kindness is to pay it forward. To hope that our story will help inspire people to demand that no other family ever have to live through this again. To donate, to give time and energy and to raise awareness for childhood cancer.

Love,
Beth

We made it!

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We made it! Tanner took her last dose of steroids last night and we finished our last day of Induction today! Tanner and I high-fived today as she, John, Jake and I goofed around in the playroom. She and Jake were taking turns riding the SmartCycle (how can she ride that so fast and still have so much trouble walking?) and rolling around on the floor. Tanner asked to go for an airplane ride on my legs (no easy task with her recent weight gain!) and wanted to do dance, dance revolution on the Wii. She is coming back to us slowly, in little stutter steps, interrupted by moments of pain and fatigue, but back nonetheless. I’ve missed her and can’t wait to see more my funny, lively daughter.

We had such a smooth visit at the Clinic today. It is scary how normal taking our daughter into surgery is becoming. You know when the Dr. says, “you know the drill,” instead of telling you all things that could possibly go wrong, that you’re becoming a regular. Tanner was a champ today. She chatted casually (about food, of course) with the nurse while she put the IV into her port — no crying, no screaming, not even any wincing. And, when we came to recovery, she had the doctor and nurses cracking up talking about tacos and Sonic. Unbelievable how far she has come in a month.

We’ll have the results of the bone marrow biopsy on Thursday (7/2/09). They use a more sensitive test this time to determine whether there is any cancer left in her bone marrow. Fingers crossed, but I know it will be good — Tanner’s fighting too hard for it to be any other way.

Even though it was a day of celebration, we definitely had a disappointment as well. We were under the impression that Tanner had a week off between the Induction and Consolidation phases of her treatment. We thought that today she was having a spinal tap with a chemo injection into her spinal fluid, the bone marrow biopsy and a dose of vincristine, then we thought we didn’t have to come in next week. Uh-uh. We had the bone marrow and spinal today, but no vincristine. Next Thursday (7/9/09), we go in for another spinal, a dose of vincristine and we start daily oral chemo. Does anyone see a break here? Chemo this week, chemo next week. Surgery this week, surgery next week. Hmmmm. I just keep reminding myself that there are no steroids involved in any of this. Maybe that’s the break.

We also talked in more detail with Dr. Mixan about Tanner’s leg weakness and pain. He said there could be three possible culprits: 1) Since Tanner had a such a high infiltration of leukemia cells in her marrow — 95% — it put great stress on her bones and she could still be having pain from that. 2) the steroids cause muscle weakness and she might get better as the effect of the steroids fade. 3) The vincristine causes nerve pain and weakness. So, we’re going to wait a couple of weeks and see if that gets better and continue to encourage her to move more. If we don’t see a significant improvement, we’ll start doing therapy.

All in all, a pretty good day. Having a visit from friends tomorrow morning and my Mom is coming for a few days to help. Jake and I have big plans for the pool and, hopefully, we might get Tanner to the Whitler’s pool in the next few days once her bone marrow site heals. Good stuff.

One more thing. Without sounding preachy, let me give you some unsolicited advice. Appreciate the things you are able to do with your kids, even the mundane ones. I used to wish I didn’t have to take the kids with me to the grocery store, and now that I can’t, I miss just doing that little regular stuff with them. Being able to just trot out the door on errands and stop off at the playground or McDonald’s playland without thinking about blood counts, germs or immune systems. I never thought something like this could happen to us, but it did. So, appreciate the little things that you have; they really are precious.

Love,
Beth

Great Day

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Well, we finally had a great day! I got to talk to my daughter today for hours. She was super for most of the day. For the first time since we have been home, she actually walked around the house without holding anyone’s hand or using her cane.

For hours, we each lay on a twin bed in her room giggling, talking, reading, crafting, making a Father’s Day card for John, and, of course, eating. It was like a slumber party during the day. She actually asked me to read to her several different times and declared “Chemo to the Rescue” her favorite book. She and I were up most of the night before with stomach problems and just general steroid-induced sleeplessness. I’ve missed her so much, I didn’t want the day to end. We’re hoping for another good day tomorrow before chemo on Tuesday.

We have 8 days left of this first stage of treatment. It probably would be daunting for Tanner to understand how much is left, but I’m going to privately celebrate any milestone I can. Not this Tuesday, but next, is our last day of “Induction.” Tanner’s chemo treatment will have four phases: Induction, Consolidation, Delayed Intensification and Maintenance. The first three phases are varying degrees of intense therapy and will last 6-9 months, depending upon how Tanner responds and what, if any, delays we experience due to infections, low blood counts, etc. The last phase, maintenance, lasts years and is much less intense. It will be just monthly chemo treatments and is when most kids’ hair begins to grow back and they can resume normal activities like school.

The end of this induction phase also marks our last day of this intense steroid treatment. The steroids return later, but never for 28 straight days. So many of her most annoying side effects are, I believe, due to the steroids right now. Abdominal cramps, her bloated face and stomach, her mood swings and crazy appetitie, sleeplessness. Even Tanner knows how many days of steroids are left and we are counting the days on the calendar.

Here’s to another good day tomorrow.

Beth

Being Different

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I felt like I was talking to an adult. To a friend or colleague who was telling it to me straight. Only I was talking to a five-year-old who has had to handle some pretty adult issues over the past few weeks.

Tanner had woken up from her nap in a great mood after having had a pretty good morning, overall. She was perched on the kid-sized table in our playroom. I was amazed. It was the first time I had seen her sit up without leaning against something in weeks. She was laughing at Jake and encouraging his wacky antics as he searched for the “monsters” she kept pointing out to him and telling him to run from. Then, the phone rang. It was my neighbor, Ashley, whose daughter, Corinne, is Tanner’s best friend. They wanted to come over for a few minutes and I thought it would be a great time since Tanner seemed to feel so good, so told them to come right away lest we lose the moment. That was where the fun stopped.

I told Tanner they were coming and she slid off the table and asked for a pillow so she could lie down leaning up against the table she was just perched on. She visibly slumped… face, body, legs. She looked miserable and terrified. I leaned down and said, “Don’t you want her to come?” She told me she didn’t feel good anymore. I asked her if she was scared and she nodded. I asked her why and she said, “Because we are not the same anymore. We’re different. I have leukemia.”

And therein lies the crux of the problem.

I would love to tell her they aren’t’ different, but I know exactly what she means. Corinne and her sister ran around the room, playing with our train table and a talking doll of Tanner’s, chasing Jake and generally, being kids. Tanner lay on the floor, being sick. She did liven up a little several times and talk animatedly about several topics, including, of course, food. But, right now, she sees huge differences between herself and her friends. They haven’t had to walk the road she’s had to walk over the past few weeks, they haven’t had to accept that they have a disease that will be with them for years to come, they don’t worry every day that their hair will fall out. She’s right… they are different… they are the kind of carefree kid mine was up until May 30.

Truth is, I don’t know what to tell her to make it better. I’ve never been through anything remotely like what she is facing. At five years old, she’s already topped my 40-plus years of living in the “difficult road to walk” category. I birthed her big self naturally, without any drugs, but that pain only lasted 22 hours and 17 minutes, not 3 years. I just don’t have any idea what she is really going through. For once, I am speechless.

In the end, our friends’ visit was exactly the kind of medicine we need more of. The more that Tanner sees that other kids still love her, still treat her basically the same, the more she may feel just like all the other kids. But, I still can’t tell her she’s not different… she just is. And, we’ll have to find a way to prove to her that different is okay.

Love,
Beth

Kindness

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Pardon my last vituperative post. Temporary negativity.

So, here’s a positive note. The kindness of strangers is amazing. Today, one of my neighbors came by to ask if a friend of theirs, Matthew West, a Christian music artist who has been following Tanner’s blog, can bring us dinner. We don’t know these people, but they are just kind and want to help.

Today, we get a package from Bob Chapek, the President of Disney Studios Home Entertainment. It contains videos, some Sleeping Beauty stuff and autographed publicity photos of the cast of Hannah Montana and High School Musical, some of which are personalized to Tanner. Seriously. (Melissa Dick, you were in Disney World last week and I strongly suspect your involvement here… a million thanks 🙂 If this doesn’t make my steroid-ravaged child smile, nothing will.

Jake’s preschool teacher has been sending Tanner letters almost every day from animals; we got one today from Keith the Cat. She doubles as a pet sitter and sends pictures of the animals and writes a letter. Tanner is intrigued. I know this takes time… taking the picture, printing it out, writing the letter, etc.

These are just a few of the things that happened today. Things like this have happened every day since we landed in the hospital.

My point is, these are extraordinary kindnesses. However big or small, they are extraordinary every one. They make this bearable for us. They buoy our spirits and make us smile. They remind us of the good things in the world when it seems a little bleak.

Tanner now has more than 300 friends on her Friends of Tanner myspace page. More than 300 people in less than two weeks… amazing. John and I find ourselves asking each other, “Do you know someone named…” and often the answer is “no.” Neither one of us know this person who has cared enough about a little girl with cancer, who they have never met, to post a word of hope. Kindness.

We are lifted, no carried by these acts of kindness. I’m hoping to be in a place to return the favor one day.

Love,
Beth

Now I’m just mad

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So, last night John mentioned to me that only 3,000 kids are diagnosed with leukemia each year in the U.S. I don’t know why I’ve not seen this number yet with the plethora of information I have pored through to learn everything I can about the disease that is trying to kill my daughter. But, somehow I haven’t.

3,000. How can this be? Do you know there are more than 75 million kids in the U.S.? I looked it up on the Internet. My child is one of 3,000 out of more than 75 million kids to get this disease. That’s a .004% chance that my child could be diagnosed with leukemia.

That makes me so outrageously mad. I really can’t explain why exactly, but maybe it just seems like a cruel joke to get something this rare. To have it rip everything apart this way.

Don’t get me wrong. I’m more thankful than you can imagine that more kids don’t get leukemia. I wouldn’t wish on anyone. But, as John and I both said in the surreal two days between the time a doctor first uttered the word “leukemia” and the time we knew it to be fact, leukemia is something you give money towards when you see the little bald kids on a telethon on TV or on a poster in the grocery store. It’s not something that happens to your kid.

Or, is it?

Beth