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

Clinic Day #20

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November 6, 2009 IMG_1255 As always, there is a good and a bad… the good is that Tanner really only felt bad for a portion of today and that was really due to the intense hydration process, combined with no food because of the surgery, which dropped her blood sugar for a while. The chemo didn’t really seem to bother her. Some chemos are that way – the effect is more cumulative or it is delayed – others are instant and she’s sick in the chair. So, that was a more than pleasant surprise.

The bad news (why is there always bad news, too?) is that the day was even longer than we anticipated. We had thought we would be home by about 4 pm, but due to some issues with surgery scheduling, we got off track and ended up staying until nearly 6 pm after having arrived at 8 am. We were the only people left in the clinic with one nurse.

But, overall, I’ll take the long day over Tanner feeling bad from the chemo any day. We watched several movies, played computer games, googled funny animal photos, watched Disney Channel and colored a little.

It’s over and I’m glad.

Love,
Beth9

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

Tired

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November 3, 2009 Tanner doesn’t seem to be bouncing back from this recent bout of pneumonia the way she normally bounces back from things. Normally, she gets more and more energy every day until she seems back to normal – or leukemia normal, at least. But, this time, she just seems about the same every day. She’s still napping every day and still tired at bedtime and she doesn’t really play all that much; she mostly wants to stay on the couch. Now, it’s only been four days since she was in the hospital, so she may be just recovering slowly from a pretty big illness.

Or, it could be the fact that she is on three antibiotics and her body is just trying to deal with that. I suppose it could also just be the effects of the chemo still. Or, last but not least, she could be getting close to needing a transfusion.

Whatever the reason, she’s tired, which is kind of okay since I am, too. So, we dropped Jake off at school today and came home and lay on the couch and watched movies. It was lovely.

Her teacher was supposed to come this afternoon, but Tanner fell asleep in the car on the way home from picking up Jake from school and I didn’t have the heart to wake her. She wouldn’t have been much good to anyone if I had. She slept several hours and still went to bed on time, tired.

Jake had a great time at school today, but told his teacher several times throughout the day that mommy wasn’t coming back. He woke badly from his nap and was sobbing when I got there. Poor thing… he hasn’t known who was coming or going the last couple of weeks.

Friday is Tanner’s long chemo day. I honestly don’t know how they fit everything they are going to do to her into one day. If she needs a transfusion, I imagine it would mess up the whole shebang; a transfusion takes up to four hours. If she still seems super tired tomorrow, I may take her on Thursday to get her counts checked before Friday.

Tanner and I were in the bathroom at church today after dropping Jake off for school and she was wearing her little fanny pack with her antibiotic drip hooked up. She asked how many more days we had to do this and I told her just one more, but then starting Friday, we have to do five days of IV chemo at home. She said, “We have to take chemo every day?” I nodded and said, “I’m afraid so, sweetie.” She seemed to think about it and then replied in a very adult voice, “I’m gonna feel really crappy.” I told her she was welcome to use any word she wanted to describe it; she’d earned the right.

Tanner’s right… she’s going to feel really “crappy.” And, we’re going to feel crappy watching her suffer. And, Jake is going to feel sidelined and confused by everybody’s crappiness and Tanner’s irritability. Let’s face it, cancer sucks. But, it’s four more weeks of this particular brand of chemo hell, and we can make it. The Pages are strong like that.

Love,
Beth

Calling Nurse Page…

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November 2, 2009 When John and Tanner came home from the hospital Saturday, they had a lot of stuff with them. We had been in the hospital 9 days and had accumulated a lot of things that John kept unloading from the car and bringing into the house. After 3 or 4 trips, he brought in two big cardboard boxes and set them on the kitchen table.

“What the heck is that?” I said, expecting it to be a gift of some kind for Tanner. He opened them up to show me all medical supplies necessary to administer the IV antibiotics to Tanner for the next four days. Yikes! John laughed and said, “I say we just take her back to the hospital and say we made a mistake… we want to stay.”

Ironically, that was an option. We could either stay four more days or learn how to administer the antibiotics. Seemed like a no-brainer to me until I saw those boxes. Fortunately, John had taken a video of the pharmacists’ explanation of how to use the supplies and I had asked the nurse to show me how to flush her line while we were at the hospital. There were also written instructions. How hard could it be?

It isn’t actually all that hard, just kind of unnerving considering the reason she is getting the IV antibiotics in the first place is because she had some staph bacteria in her line. So, slightly nervous, John and I glove up, read the directions through several times and go at it. It went really well, I thought, until I came back ½ hour later and no antibiotic had drained from the ball. That’s when I realized I hadn’t unclamped the line to the antibiotic… oops!

Since then, I’ve become a pro, even by flashlight at 2 am. I’m pretty fast and quite confident now, which is good, because I have to do it four times a day. I’ll have flushed her line 32 times, hooked up the antibiotic and administered heparin 16 times by the end. I sterilize the cap on her line, flush with saline, bleed the air from the antibiotic line, hook them together and unclamp everything to begin the drip. Then, I reset my alarm for an hour later, wake up, unhook her, flush and administer heparin to keep her line from clotting.

It’s an amazing contraption that allows us to deliver IV antibiotics at home pretty simply. No pole, no infusion machine… just a little balloon filled with liquid antibiotic that, once screwed into her line and unclamped, drips out of the balloon and down the line into her port much like a water balloon would drip out if you put a pinhole in it. So clever. She even has a little fanny pack she can put it so she can carry it with her if she wants to get up and play.

So, it’s been going very smoothly… until this morning when the needle came half out of Tanner’s port. John woke me up and I could hear Tanner crying and yelling. Nothing to do but pull it out the rest of the way and go to the clinic to have it accessed again. Tanner and I took Jake, which was fun because she got to show him the ropes and he got to meet the ever-famous Nurse Cari.

One of the nice things about this whole thing is that I get to do something for John. The whole thing makes him a bit squeamish. It’s not just the fact that you have to draw back blood to make sure the port is working, I think it’s also the thought that he might hurt her if he makes a mistake. At any rate, it makes him uncomfortable and I just told him not to worry about it; I didn’t want him to have to do it. So the miracle is that he has let me do this for him; he doesn’t often stop helping me enough to let me help him. I’m glad.

So, two more days of IV antibiotics, then a long day of lots of chemo on Friday that begins five days of IV chemo administered at home. We’re ready.

Love,
Beth

Happy Halloween!

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Tanner as Wednesday Addams

Tanner as Wednesday Addams

October 31, 2009 Did you hear about the parents who let their child go trick-or-treating on a cold night after just getting out of the hospital for a nine-day stay for pneumonia?!!! Oh, and she has leukemia, too!

It sounds so bad on paper, but it was really fun. If there is one thing I have learned from this whole experience it’s that you have to grab your moments when they present themselves for you never know when they will be taken from you. Apparently children know this piece of wisdom without being taught. Tanner seized the moment, for sure, tonight.

Tanner and John got home from the hospital today around 1:30 with chick-fil-a for everyone. We ate, Tanner’s stomach started to hurt from one of the antibiotics she is on, John and I spent 20 minutes trying to be sure we were administering her IV antibiotic correctly and she promptly fell asleep for several hours. That’s when the adults decided that caution would be prudent. That she might just be too tired to go out for Halloween tonight. That maybe we should do it the next night with a good night’s rest under our belt and one more day for her to recover. So, John runs all around the neighborhood asking the neighbors to save some candy for trick-or-treat on Sunday night. People were so sweet and willing to help.

Then, Tanner wakes up. No way was she trick-or-treating the night after Halloween! We warned her that the doctor said she had to wear a mask… that did not dissuade her at all. So we hustled up, ate some dinner, hurried into our costumes and met Tanner’s friend Olivia and her Mom, Jennifer, for some power trick-or-treating.

Jake, Olivia and Tanner

Jake, Olivia and Tanner

We brought the wagon because we didn’t think she would last long. She’s been in bed for 2 weeks, after all. But, as always, she surprised us with her determination. She probably made it to 15 or 20 houses before climbing the steps became too much for her and she started just stopping on the sidewalk and letting me go to the door to collect her candy. She eventually got into the wagon with a blanket around her and rode the rest of the way in great spirits.

I can just hear myself trying to explain our parenting skills to the doctors when she shows up with pneumonia again from being out in the cold (just kidding, they told us she could go). But, it was one of those moments where I realize that the stubbornness in her that has long driven me crazy as a parent is starting to serve her well. What had been just strong-willed obstinence as a toddler and preschooler is morphing into tenacity and perseverance as a kid. I was so proud of her.

IMG_1245She and Jake and Olivia had a ball. They looked so cute and got a LOT of candy. When we got home, Tanner said it had been one of her favorite Halloweens. She said, “This was a great night.”

I guess having so many things taken from you makes you really appreciate the things you get… or, in Tanner’s case, the things you reach out and grab with sheer determination and grit.

Happy Halloween!
Love,
Beth

P.S. If you see Jake, do NOT tell him he was a cute fireman. He was Billy Blaze from the Rescue Heroes, thank you very much!