My superhero

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Today, a little boy from Tanner’s kindergarten class came by to give Tanner an adorable card he made her. On the front, it said “Super Tanner” and had a picture of Tanner flying in a cape. Inside was a sweet note, dictated to his Mom, about how Tanner was a superhero who was going to win the battle against the evil leukemia monster… adorable and so true.

Today, my needle-phobic child who has to take anti-anxiety medicine just to go to the dentist, showed the child life lady a hilarious video of Jake in one of Lily’s pink wigs while the nurse put the IV line into her port. No holding her arms down, no screaming, no crying. A little wimpering after it was all over and a little visible anxiety beforehand, but wow, what a difference. Then, when it was time to take it out, again, no big deal. Last week we had to lay on her legs and hold her arms. Amazing. Tanner Page, my superhero.

It is humbling to discover what a five-year-old can learn to accept. She has accepted that she has cancer, that no matter how repulsive a medicine may taste, the pain relief is worth it, and that she will lose her precious hair. She will accept so many other things that a five-year-old shouldn’t have to accept, but she will be so strong when she finally beats this.

The other day, she asked the question we had been dreading most: “Mom, do people die from leukemia?” I knew this question would eventually come, but didn’t expect it so soon and wasn’t really prepared the way I wanted to be. John and I paused and then I explained that grown ups and little tiny babies get leukemia, too, and that they sometimes die because they can’t fight infection as well, but that kids like her do super with leukemia. This seemed to satisfy her for the moment, but I know the question will come up again, and, eventually, she’ll figure out that some kids do die from leukemia. Then, she will have to accept that, too.

But, I’ll do everything I can to assure she never accepts that SHE might die. No way. I’ve never even considered it ,and I don’t want her too, either. That is not her fate. She is a superhero and superheroes never give up and always beat the bad guy.

Love,
Beth

Baby Steps

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Most of you probably know that Tanner was in the hospital two months ago for a life threatening reaction to Bactrim and, possibly, ehrlichiosis which is a tick-borne illness. She had to be lifeflighted on a Monday night and was gravely ill for several days before being released on Friday afternoon with a course of antibiotics to finish as our only reminder of our time there. Tanner was sad and depressed in the hospital (it doesn’t suit her bubbly nature) and didn’t even want to get out of bed until I made her. But, as soon as we left the hospital, she came alive and never looked back. The next morning, she was playing Wii with friends, refusing to take a nap, and demonstrating jump rope moves for her brother. By Monday, she was back at school with no indication that anything had ever been wrong. Not bad for someone who was on a helicopter with a 50/50 chance just a week earlier.

That is my kind of illness… quick and dirty, with immediate results. I’m not really cut out for stuff that lingers. I like the kind of job where you work harder than everyone else and you see the best results immediately. I could never be a farmer… heck, I can’t even keep the plants the kids give me for mother’s day alive for more than a couple of weeks. All that watering, day in and day out… you get the picture.

So, when Tanner left the hospital after her leukemia diagnosis, I guess in the back of my mind, I thought things would get better… that she would bounce back the way she did before. Not that I was so stupid as to believe she was going to lick leukemia in a few weeks, but I guess I expected there to be some kind of forward motion to her recovery.

There is no forward motion. Only back and forth, up and down, side to side. Anything but consistent forward progress. Cancer has to be one of the only diseases for which the treatment is as bad or worse than the disease itself. The cure that almost kills you, as I like to say.

So, here’s how a typical day goes: Tanner wakes up crying this morning (as she does every morning since taking the steroids), after pain medicine, she feels a little better, eats voluminously and watches TV. She knows that eating too much will hurt her stomach, but its like the pull of the steroids outweighs common sense and she overeats, resulting in an ugly tummy ache. I give her something to help her tummy and then she plays on her computer for a while and helps Jake play on mine. Then, we go upstairs where she lays on the floor and talks to Jake while he plays. When we decide to go downstairs again, she begs for my help getting up off the floor. Even though I want to help, I know she needs to use those muscles and encourage her to do it on her own. This causes a giant temper tantrum (steroids, lack of sleep) that causes me to have to send her to her room where she promptly falls asleep for 2 1/2 hours. After she wakes, we eat more, of course, and go across the street to her friend Corinne’s house. I haven’t told Tanner about this because I know she won’t want to go… it makes her so anxious. As I expect, she balks at going and we arrive with her crying. Poor Corinne looks alarmed, but sweetly asks what’s wrong and invites Tanner to sit on a little couch in the playroom. Within minutes, they are looking at my new iphone and comparing games. They spend the next hour happily drawing and talking together on the sofa. I have to pry her off to go home. The trip home seems like miles. Her legs buckle on the stairs out of the house and she falls onto her bottom. It goes downhill from there. The heat beats her and she is exhausted when we get home. We regroup and have a much-anticipated visit from Lily, an 8-year-old little girl from Franklin who also has pre-b cell ALL and is about 7 months into treatment. It is their first meeting and we were excited to see her. But, the horrible stomach ache returns and Tanner can’t really enjoy the visit the way she wants to. Her stomach gets worse and worse and she can’t eat the McDonalds she wanted so badly all day long. We finally manage to get the right medicine to ease her pain just in time for bedtime.

So, it’s not just one day up and one day down, it’s 15 minutes up and 15 minutes down. You never know when a symptom will creep up and rob her of her personality temporarily. And, even though I know the tests show she’s kicking leukemia’s ass mightily, I don’t see it. I just see a little girl who can be giggling and cutting up one minute and groaning in pain the next.

So, I’m learning to take baby steps. To not expect it to get progressively better each day, but to have faith that it will get better… eventually. I guess I’m going to have to learn how to water a plant every day no matter how slowly it seems to be growing.

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

Night Owl

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After such a scary day yesterday, fully expecting Tanner to wake up so sick this morning, I was pleasantly suprised to find that she was not nearly as sick today as she was yesterday.  She still felt crummy — none of the stomach medicine seems to be helping the abdominal cramps and she is constantly dizzy and short of breath, probably due to the drop in her red blood cell count — but she was definitely more spunky than I expected.  She had some really good moments.

More puzzling, however, was how she was last night.  Awake much of the night, she was good natured, talkative and sometimes even giggly.  John and I have talked to the doctors about how much better she seems in the middle of the night and they don’t really have any explanation for it.  I did read that a side effect of the steroids is hypersensitivity to light, sound and motion, so perhaps the dark, quiet of the night is soothing.  For whatever reason, though, if you want to see the old Tanner, stop by at 3 a.m.  We’ll be awake, chatting about any number of things.

Most often, she talks about food at night (another one of the side effects listed for steroids is food obsession).  She’ll wake up talking about how John promised her a McGriddle and those “big tater tots” (aka hashbrowns) the next morning.  Or asking why, for the 100th time, she is not allowed to eat cheese popcorn (because the kernels can cause scratches in the intestines, which if you have a low platelet count, can cause internal bleeding).  She will often ask for food, and after I explain how I’m not cooking in the middle of the night, will settle for cheese nips or pretzel sticks.  Tonight, she actually ordered up her nighttime food before she fell asleep (cheetohs) and warned us not to eat them all while she was sleeping.  Anyway, these conversations are usually very funny (unless it’s the 6th time she’s woken you out of sleep to talk that night) and remind us our child has a huge, bubbly personality that is contagious.

Other nights, the questions are deeper.  This is when you find out what Tanner is really thinking about when she lays awake at night.  The other night, she asked me, “Mom, will I have still have cancer when I’m in the first grade?”  I try to be honest, but gentle in my responses, not telling her more than she needs to know, but not lying either.   Most often, the questions are about losing her hair, which so far is as thick and beautiful as ever.  “Mom, do you think there is hair on my pillow right now?”  “When will my hair fall out?”  “Will my hair grow back in time for school to start?” 

She told me today that it is embarrassing to have leukemia because people know your hair will fall out.  I almost wish hers would go ahead and come out so we could just get this part over with.  How do you explain to a five-year-old that losing her hair will not change who she is, or make people love her any less?  I think the anticipation will be so much worse than the event itself.  Of course, it’s not me losing my hair, so what do I know?

Anyway, her nighttime antics, although amusing at times, can also be exhausting.  After she realized I would not talk with her anymore last night at around 4 am, she actually started talking to the dog.  That’s where my patience ended.  This morning she told John, “Mom yelled at me last night.”  Busted.  She prefers it when John sleeps up there because apparently he’s more chatty at 2 am than I am. 

I didn’t let her sleep as much during the day today in hopes that she would sleep better tonight.  I think I would miss the “night owl” Tanner, though if she disappeared entirely., though.  It’s like turning back the clock before all this happened and hanging with my silly, sassy girl.

Love,
Beth

waylaid

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So, today started out okay.  We had our second clinic visit, which went pretty well.  Tanner had blood drawn our of her port and chemo put into it, and we got a prescription for some extra stomach medicine that, hopefully, might help with the abdominal cramps caused by the steroids and exacerbated by the crazy cocktail of drugs she is taking.

On the way home in the car, her stomach is killing her.  We stop at CVS to see if they will rush the prescription for prevacid (she also takes prilosec and zofran) so maybe it will help her.  They are kind and take mercy on a sick little girl and we give her the prevacid, along with oxycontin (painkiller) and neurontin (to help with nerve pain) as soon as we get home.  She feels better within 15 minutes and is laughing and talking while laying on the sofa. 

Her blood counts were down this week, which they expected, but it makes her so weak and tired.  By noon, she is almost asleep on the couch after gorging herself on a buffet of food items.  I carry her upstairs where she naps for 3 hours and I have to wake her up so she won’t be awake all night.

I shouldn’t have worried…  the chemo has gotten her.  She is, effectively, waylaid.

I take Jake out for a scooter ride around the neighborhood and when we return, she is as sick as I have seen her.  Limp… lying on her back with her arms over her head in surrender, her beautiful face swollen from the steroids, the palms of her hands covered in a rash that will eventually cause her hands to peel the way her feet did last week, face pale, lips cracked… waylaid.  The only sign of life is a frantic pulse point at the base of her throat that looks as if it’s trying to say, “I’m still here… working hard, but still here.”

My eyes well up and I have to turn to gather myself in case she wakes up and sees me standing over her crying at the horror of this.  I want to hate this chemo… I want to curse it and beat it with my fists, but I can’t.  The irony is that these drugs that look like they’re killing my child are actually saving her.

While I take Jake up to bed, John scoops Tanner up and puts her in her bed.  I leave Jake’s room and stop to check on Tanner.  She is awake.  I creep in and feel her head.  She seems warm and I check her temperature to be sure (a temperature over 100.4 sends us back to the hospital).  It is normal.  I put chapstick on her cracked lips and ask if there is anything I can do for her.  She asks me to pat her and I do.  Then, I temporarily lose my composure and say, “I hate leukemia… I really, really hate it.”  She nods slightly.  Remembering to try to be positive, I add, “But we’re gonna get it, you can do this.”  Unbelievably, she nods again.  Humbled, I kiss her on the forehead.

She’s still under there.

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

the bottomless pit

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Good grief!!!  You have never seen a child eat until you have seen one on high dosage steroids!  It is a full-time job just keeping her fed.  Two-and-a-half rice and cheese tacos, tortellini, chex mix, oranges, chex mix, two bagels with cream cheese, chex mix, etc., etc., etc.  She ate cheese nips at least three different times in the middle of the night last night.  She wakes up at night and talks about the food she will eat the next morning and begins planning her next meal before she even finishes the one she is eating.  Food, food, food.

Each day we get further away from the chemo she gains a little energy.  She still lays down most of the time and sleeps a lot, but she has more moments when she seems like herself.  Unfortunately, tomorrow is her last day before chemo on Tuesday.  We’ll try to make the most of it.

What I really can’t wait for is for the end of these steroids.  They have robbed us of our child.  She is lethargic and depressed then obstinate and agitated.  She isn’t my bubbly child.  She has no enthusiasm for anything.  Her birthday is in two weeks.  She told me today she didn’t want to have a birthday party at all… she didn’t care.  I have booked her a birthday party at build-a-bear during her week break between this first stage of chemo (induction) and the next (consolidation).  By the day of her party, she will have not had steroids or chemo for two weeks.  I’m hoping she’ll feel really good and change her mind.  Her doctor will allow us to do it during that week because typically white blood counts will rise without the chemo.  Build-a-bear has graciously agreed to let us in before the store opens at 9 am so that she is not in a crowd of kids (another of the doctor’s stipulations).  I want this to be special for her.  I don’t want it to be yet another thing we lost to leukemia.

So, we have 14 more days of steroids and then, maybe, we’ll get her back.  She’ll have to take the steroids again later, but I think for only 5 days out of the month.  Pray for our patience during the next two weeks so we can get through this.

Thank you all for your continued support.  We are lucky beyond description to have such friends and family.   We love you all.

Beth