Category Archives: prayer requests

Counts Update

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February 7, 2010

Just a quick update on our counts check today… Tanner’s neutraphils had climbed to 230, up 100 from Monday. Not as much of a jump as we had hoped, but at least headed in the right direction. The doctor wants us back next Thursday and told us to keep her off of her oral chemo until then. Tanner should definitely feel good with this break from chemo even if her immune system sucks. So, more isolation, which stinks.

Thanks for all the prayers… they worked. Now, is it greedy to ask for her counts to go up more quickly?

Love,
Beth

Her Beautiful Face

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February 10, 2010

We’re cooped up and feeling it. That’s all I can say about it without whining and I think I’ve had enough whining in the last few days to last me a lifetime! Tanner feels good and we’re going in for counts tomorrow to see if they are at least on their way up. Her oncologist called yesterday to tell us to stop her oral chemo until her counts come up. He felt they might not rise quickly while she was taking the 6-MP so she’s off of it until at least tomorrow.

Those of you who keep up with us on facebook will have likely seen this picture. I posted it the other day. I can’t stop looking at it. There’s something about it that is so powerful for me. I didn’t ask Tanner to pose for this picture. If you know her, it will not surprise you to hear that she inserted herself into a picture I was taking of the floors in our new house. She ran into the room, saw me taking the picture, threw off her coat and jumped right into the center of the picture. Nothing unusual. She’s a ham, alright. But, I was surprised when I got home and loaded the photo onto the computer.

It’s not her pose… that comes straight out of my People magazines that she sees lying around the house. It’s her face. I expected her to be a little silly, a little put on, with a cheesy grin or a comical pout. But, her face is open and honest. She’s staring at the camera with a confidence and an integrity that takes my breath away. Leukemia has stolen many things from my child, but it will not steal this. It will not steal the strength and courage that I see in that straightforward look… in that beautiful face. No hair to hide behind, but she doesn’t need it. She is a force to be reckoned with.

This is not a child who is afraid. She may have fears, but she is not afraid. She expects the best for herself – you can see it in that look. The way she is looking so calmly at the camera. She’s a superhero. She’s a rock star. She’s GI Jane.

I take comfort in this. I look at her in this picture and know that she will be able to handle whatever comes her way. That she will be an extraordinary woman someday when all of this is just a memory. That the same tenacity and persistence that drives me batty as a parent will be the same determination that allows her to succeed against all odds as an adult. She will have learned it the hard way.

Say a prayer for us tomorrow if you think about it. We’re hoping to hear her counts are on the upswing.

Love,
Beth

Both Ends

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January 27, 2010

Tonight, after Tanner’s lesson with Mrs. O’Hara, we decided to go to Chili’s to eat. John was at a work dinner and we were on our own. Tanner loves Chili’s; she’s always trying to connive some way to get us there to eat. So, we piled happily into the car and drove down the road for dinner.

While we were waiting for our food, Tanner kept saying how hungry she was. “When will our food be here?” she asked repeatedly. When it got there, it was piping hot and I began to stir Jake’s Mac n’ Cheese so it would cool off. I looked over at Tanner and asked if she needed help cutting her chicken, but she was staring off into space and didn’t respond. I watched her for a moment; she looked exhausted. “T… you okay?” I asked. “Fine,” she said. “I just need honey mustard.”

Between the time I asked the waitress for honey mustard and the time she brought it, I watched Tanner go downhill. The waitress set the honey mustard on the table and Tanner simply lay down on my coat in the booth without a word. I knew she couldn’t eat it. It was a moment lost.

Jake and I ate as quickly as we could, boxed Tanner’s food up and left without her ever eating a bite.

Now, it may seem ridiculous to care so much about one chicken dinner in the light of some of the truly awful things she has had to face over the past 8 months, but it’s just that it is such a metaphor for life with cancer. Get excited, look forward, anticipate… be disappointed. Watch everyone else around you get the thing you wanted so badly while you remember that’s it’s not for you… you have cancer.

She handled it better than I did, really. I cried about it later, which is so uncanny, because I almost never cry about cancer. It just seemed so unfair. Such a simple thing to want.

Anyway, the rest of the night went according to Murphy’s law. I carried Tanner into the house with her hand over her mouth, rushing to the bathroom, while Jake screamed from the car where it was parked in the driveway in the dark, “I’m cared! Mommy help!” Park Tanner in front of the toilet, run back out to get Jake. Set up Tanner on the sofa with a bucket and a towel. Frantically mix up some zofran to prevent nausea. Give Tanner the medicine while Jake hangs on to me screaming because the constipation he has been suffering from finally decides to give way. Clean up (nuff said). Carry Tanner to bed, dinnerless. Put Jake to bed, a pound or two lighter. Collapse.

Usually I only recognize the humor in this kind of situation in the retelling, but this was so ludicrous that I even started laughing in the midst of it. It wasn’t a cancer moment; it was just a motherhood moment, one that moms everywhere could appreciate.

Tomorrow is clinic day. John and I are anxious. Anxious that they will raise her chemo level. Anxious that she won’t get released to school. Anxious that she will get released to school and be exposed to all those germs.

Please pray for the right thing… whatever that may be.

Love,
Beth

A Very Merry Christmas

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December 28, 2009

Thank you for all the prayers and good wishes for our Christmas travel. We did make it to my parents’ house in Atlanta on Christmas Eve and had a great time. My brother’s girls are 9 and 5, so Tanner was in heaven – two playmates for three straight days. Jake developed quite an attachment to my neice, Mary Mike, the 9-year-old… he was constantly asking, “Where’s that girl?”

Tanner finds a willing shoulder in her cousin, Erin, after a fun, but tiring day.

The best part of the whole weekend was that, for Tanner, I think it seemed as normal as possible. There really wasn’t anything that her cousins could do that she couldn’t. They played hard… really hard. At the end of every day, Tanner was exhausted and would come to me and ask to go to bed by 6 pm. But, she was having fun and it was a little “vacation” from the limitations of cancer. Thank you Mary Mike and Erin for giving Jake and Tanner so much love and attention!

Tanner and her new doll beds

Santa was good to the kids. In addition to an American Girl doll for Tanner and a Shake and Go Racetrack for Jake, he surprised them with a big bouncy house that Santa put up in the basement of my parents’ house. I think Mary Mike summed up their reaction best when they rounded the basement stairs and saw the 9 x 9 inflated castle… “Holy Cow!” she said!!! Needless to say, they jumped all weekend long. Great exercise for Tanner’s legs. The bouncy castle came home with us and is in the basement of our new house waiting for us to move in.

We even got to experience a little church on Christmas Eve. We found a little glass prayer chapel at the back of the church that overlooked the sanctuary and watched some of the service from there. Tanner got to wear her pretty Christmas dress and get dressed up, just like her cousins.

On our way to church

We were still all somewhat sick for the week. We were coughing and sniffing and, ironically, probably gave something to my family members who had worked so valiantly to stay healthy so we could come. My Mom is sick already.

I thought Tanner was getting better today, but this afternoon started feeling bad and we found she had a fever by bedtime. She and John are at the ER as I write this, waiting for counts to determine whether they are high enough for her to be able to get IV antibiotics and come home or whether she will have to stay. We are all unbelievably weary of this routine and, although I am trying to be grateful for the break in illness that allowed us to travel for Christmas, I just really wish we could catch a break for a while.

So, pray for her that her immune system isn’t shot from being so tired over the holidays and that she fights off whatever this is. Pray that we will have the stamina to endure more of the stress of this disease. Pray that Tanner will continue to have the will to fight.

Today, Tanner said to me, “Mom, I have a job.”

“Really?” I replied. “What is your job?” expecting to hear that she was a hairdresser or a nurse.

“I’m fighting leukemia,” she said.

Keep it up big girl… keep it up.

Love,
Beth

A Big Bump in the Road

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December 21, 2009

Tanner’s ER visit seems to have been the beginning of a virus epidemic at the Page house. So far, John is the only one who has not gotten sick. Tanner’s oncologist thinks we all have adenovirus – sore throat, congestion, irritated eyes, and fever. Tanner actually is much better; she just has a cough at this point. I spent all yesterday in bed with a fever and body aches. Today, I am better, but not yet well. Jake continues to cough and just feel yucky. Everyone’s eyes have been bloodshot and irritated at some point.

We’re taking Tanner in for a chest x-ray tomorrow to be sure she’s not developing pneumonia again. If she’s okay and Jake and I feel better, we still may make it to Atlanta for Christmas Eve. I’m a little behind on my Santa duties, but I think we could do it.

Poor John is taking care of three sick people while trying to work from home as well. Once again, he is the lynchpin that holds us together.

So frustrating to have jumped through so many hoops to get to this point only to have a virus take us all down like this. We just can’t catch a break.

Keep us in your prayers. We’re hoping everyone is better tomorrow.

Love,
Beth

The Breaking Point

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December 16,2009

Tomorrow is a pivotal day. We go to clinic in the morning for counts. The results will likely determine the course of our holidays – joyful and with lots of family, or a little less joyful and by ourselves at home. I feel like this will be the breaking point for Tanner… and possibly for me, too. We want — no we need – a change of scenery and a chance to forget about cancer, even if only for a few days. The thing is, Tanner feels really good these days. It’s hard sometimes for me to remember to give her midday medicine because she seems so normal. But, still, we’re reminded every day by the places we cannot go and things we cannot do, that she is not normal. Being able to spend the holidays among family would be as close to normal as we have had since diagnosis. I don’t know how I will console her if her counts are too low to go.

The stress of everything depending upon this count check has definitely gotten to Tanner. She has begun in the last few weeks to act out and has steadily gotten worse. We haven’t seen this type of behavior from her since her stint of acting out after diagnosis. What seemed to help her then, and I believe will help her now, is our play therapist, Allison. It is so weird, but without ever talking to Tanner about leukemia or her difficulties with it, Allison is able to help Tanner work out her feelings through play. She says Tanner is very transparent in her play. Last week, Tanner forced animals and dolls to drink “toilet water,” telling them they had to do it and if they didn’t, she would have to hold them down and make them drink it. I think toilet water is actually a really good analogy for chemo.

Tanner is also anxious about moving. What started out as a really positive thing has turned into a source of anxiety. She is nervous about leaving her friend, Corinne, and about meeting new kids in the neighborhood when she has no hair. She has also started obsessing about the dog we lost several months ago, Millie. She writes her notes and puts them on her ashes urn and talks about her all the time. She is afraid to leave the room I am in and won’t go upstairs without either Jake or me with her. She is still sleepwalking and having nightmares, although she is sleeping better than she was several weeks ago. It’s heartbreaking to watch her self-destruct this way. She is eaten alive by anxiety and it manifests itself in bad behavior.

So, please pray for us in the morning. We need good counts. We need a break. I don’t want to have to tell her, yet again, that we will miss something important to her.

Love,
Beth

How Much Chemo Does it Take…?

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November 11, 2009 How much chemo does it take to keep a good girl down? Apparently more than Tanner has had, and that’s saying something. Tanner continues to feel good and her energy level is actually increasing, despite the fact that her counts are likely tanking. I tried to tell leukemia that it picked the wrong girl!

We played all morning at Liberty Park playground. She set up an entire Barbie neighborhood while Jake napped, we did some homework, she wrote two stories for her teacher, she had her lesson, ate dinner, played wii and then she read two stories to Jake before bedtime. I was tired, but she didn’t seem to be.

Tomorrow is clinic day. We’ll just go in for counts and an IV dose of ARA-C. Then, she’ll come home accessed again for another 3 doses of ARA-C, like last week. She continues to take 6-TG oral chemo daily until next Friday. Then, we are done with DI… yay!

Jake has a yucky nose so pray she doesn’t get it (or that I don’t for that matter, since I can’t seem to get a cold without getting bronchitis these days).

Also, special prayers for Madelyn, the little 3-year-old who was diagnosed with ALL when we were in the hospital last time. She is still at Vanderbilt and I know how tired her family is getting and how badly everyone wants to get home.

Tired, late, going to bed.

Love,
Beth

Courage

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November 10, 2009

Tanner, Jake and I went in search of an uncrowded playground yesterday. We ended up at River Park in Brentwood. There were a few little boys Jake’s age, but not really any one else around. Tanner and I sat on a dinosaur together and watched Jake play with three little boys. She was not wearing her wig… she hasn’t worn it for even one minute since she shaved her head… and had a Hannah Montana bandana wrapped around her head.

While we were sitting there, another Mom sidled up to us and tactfully said, “Where does she go?” She caught me slightly off guard, but only for a second before I replied, “Vanderbilt.”

She told Tanner she liked her bandana and then stood next to me as we watched Tanner run off to play. Then she said, “My son went to St. Jude, but finished his treatment at Vanderbilt; we lost him when he was 12.”

We hadn’t even exchanged names yet, but I already knew her. I knew the long hours she spent in hospitals, dosing out medicine, waiting for test results, soothing a sick child, wishing it could be her instead of him. I knew her without saying anything else. I knew her except for that hole in her heart, which I have had to face but never had to actually accept.

After telling her how sorry I was for her loss, I said, “I can’t possibly know what it feels like to lose a child, but I can imagine it… because I’ve had to.” She just nodded.

John and I have had to face the possibility that Tanner might not live at least twice; once when she was lifeflighted to Vanderbilt for a drug reaction and doctors could not tell us whether she would live or die; and the other when she was diagnosed with leukemia. It’s a feeling you can’t really appreciate unless it’s happened to you, just like the feeling of actually losing a child is something I’ll never truly understand, although I think I might have a better idea than most.

The thing that struck me about this woman, who had lost her son just 4 years ago, was that she smiled when she talked about him. She explained that just last weekend, they had hosted the Hoover Run for Hope in Brentwood, in honor of her son, Liam Hoover, and that they had raised over $40,000 to give to St. Jude and Vanderbilt to help families of children with cancer. She and her husband had found a way to turn their grief into something positive and she was amazing in her strength.

This Cancer Parent Club is not one I ever wanted to join, but now that I’m here I find I meet the most amazing people. Fighting this horrible disease can sometimes bring out the best in someone. It’s a by-product of facing your worst fear every day and trying to make the best of it. I’m better for knowing the people I have met through this process, including Michelle Hoover, Liam’s mom. I’m touched by the stories they choose to share and by the way they unfailingly put aside their own worry or grief to try to soothe mine.

My Mom sent me an email from a friend of hers that had a quote at the bottom that struck her as appropriate and meaningful and I agree:

Courage does not always roar. Sometimes it is a quiet voice at the end of the day, saying… “I will try again tomorrow.” –Mary Anne Radmacher

Yesterday, a quiet voice sidled up to me at a playground and showed me how to keep trying even when everyone would understand if you gave up.

Love,
Beth

Still Feeling Well

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November 9, 2009 Despite being somewhat fatigued, Tanner continues to do well under this deluge of chemo, which proves that I will never understand this whole process. Seems like the simplest thing (steroids) takes her completely out and then she does well under the heaviest treatments. She definitely does not have her normal energy level; she spends a good portion of the day sitting or lying down, but she is still able to get out and ride a bike or play briefly on a playground. She is having a little bit of nausea, but it is very controllable with zofran. We are so grateful.

Although we’re ecstatic she’s feeling so well, there is still this weird creepy feeling; we know this chemo is designed to kill everything that hasn’t been killed to date, so her counts are most certainly plummeting, despite her feeling pretty well. These are dangerous times as she will be very susceptible to infection. We are holding our breath to see if we can make it though the remainder of DI (Delayed Intensification) without another hospital stay or a life-threatening infection.

I’ve been administering a daily IV chemo called ARA-C to Tanner and she is taking a daily oral chemo (TG) as well. Tomorrow is her last dose of the IV chemo until Thursday, when we will go to clinic. There, they will check her counts and give her another dose of ARA-C. Then we will administer a dose-a-day for three days afterwards. She will finish taking the TG oral chemo in 10 more days and then that is the end of chemo for this phase. The remaining two weeks are for counts recovery as neutrapenia (neutraphils below 1000) is described by the doctor as “inevitable” during this phase. Tanner’s neutraphils on Friday were at 1100, just 100 above what they needed to be to start this last two weeks of treatment, so we expect them to be very low by the end of this week. Scary stuff, to say the least.

So, we’re laying low at the Page house. We’re really not taking her anywhere these days; just trying to make it through to long-term maintenance and, hopefully, a great increase in freedom. We’re even keeping Jake out of school when her counts are low to try to prevent him bringing anything home to her.

I didn’t realize how little actual chemo she had left in this phase until today. The chemo roadmaps they give us are sometimes a little difficult to read and I thought the chemo would last the whole next month, but the last two weeks are reserved for counts recovery so we can then begin Long-Term-Maintenance. I had a moment of disbelief… could this day we’ve been working towards since June be almost here? I want to celebrate, but would seem to be tempting fate. It’s just 10 more days of chemo, but her counts will take a little while to recover so it’s a month-long or more period where she will be very susceptible. It’s a little like a minefield and I feel the tension of making our way through with setting off a bomb.

So, we’ll do what we have done so often during this whole process… we will choke back our fear and take it one day at a time.

Maybe we should just start over and ignore everything I’ve written prior to this tonight. Here’s my new post: Today was a good day.

That’s all we need to know for now.

Love,
Beth

Skyping, Biking and Clipping, Oh My!

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November 2, 2009

No need to worry any more about Tanner’s lack of energy… oh my! It came back today with a vengeance! She is back and spunkier than ever.

We rode bikes yesterday and today. Yesterday, she crashed afterwards and napped for a few hours. Today, she just kept going like the energizer bunny. Watching her bike and play made me realize how much muscle tone she has lost by lying down for those couple of weeks and from the steroids. She is back to limping a lot and having real trouble getting up off the ground. She is also having a lot of pain in her left leg, which is new. Usually it’s her right leg that causes her so much trouble. I’m trying not to worry about the loss of strength at the moment. I think she will be sick enough from the chemo over the next month, that physical therapy will not really be possible. We will get through this month and then try to get her into a therapy program that will help regain what she has lost, or as much as possible considering she will still be taking Vincristine and steroids for the next year-and-a-half.

Tanner was able to videochat with her class this week, which was so awesome! Thank you to Mrs. Franklin for making it possible. It was so cute watching them talk with each other. They use a free program called skype, which is amazing. They talked about their Halloween costumes and how much candy they had gotten. One little girl told Tanner she was sorry Tanner had been in the hospital, to which Tanner replied, “It’s okay, they have lots of videos there and the food is yummy.” We hope to skype often so she can feel like part of the class.

Today, on the way home from dropping Jake off, I jokingly said to Tanner, “Hey! Do you want to go to Sweet & Sassy and get your head shaved?” At first, she responded exactly as I expected her to, “Nooooooooooo!” But, then a moment later, she said, “Yes, I do want to.” After making sure she really wanted to, we went by Sweet & Sassy, but it was too crowded. Tanner really wanted to do it, though, so we went to Snip-its and I went in an explained the situation to the hairdresser, made sure she wasn’t sick and then brought Tanner in.

She was bold and decisive. She wanted this done. She didn’t like the noise the clippers made, so the hairdresser cut it off with scissors. The more she cut off, the more confident Tanner became. It was like those little wisps had just been reminders of her hair and when they were gone she just looked like she was meant to be bald. The short little blond wispies are so fair, you can’t really see them and she has these sweet little freckles on the top of her head from the sunlight reaching through her thinning hair this summer. She didn’t wear her wig at all today. In fact, she took her hat off as soon as she saw her friends and proudly showed them her new smooth head. She told me later that they told her she looked beautiful. Corinne and Olivia – you will forever be on my good list.

There is something so angelic about the vulnerability of a person without hair. You see their eyes, their smile, their soul more clearly. To me, she looks more healthy, not less, than she had before. I found myself crying, not because I was sad, but because she is so beautiful and her spirit is so resilient. When we were done, she rubbed her head, looked in mirror and smiled. It was a moment I had dreaded, but it turned out to be one I will never forget, for completely different reasons than I thought.

Tomorrow is the big, bad day. John will wake Tanner at 3:45 am to eat cheese and crackers because she can’t eat before her lumbar puncture at 2 pm. We will leave the house early to arrive at clinic at 8 am to get her port accessed and begin IV hydration. They will test her urine as we progress until they determine she is hydrated enough to begin receiving the cyclophosphamine. She also has to be hydrated for four hours afterward. She will also receive and IV dose of ARA-C chemo and begin taking oral chemo, TG-6. Then, she will go to surgery to get a lumbar puncture with an injection of methotrexate. Four types of chemo in one day. She will continue to take the TG-6 daily for the next month and will come home with her port accessed so we can give her an IV dose of ARA-C for the next four days. I’m anticipating a very sick little girl, but who knows? Tanner surprises me all the time.

Please send positive thoughts for tomorrow to go smoothly. It really is the worst day of this whole process and I look forward to moving past it.

Love,

Beth