A Very Lucky Girl

September 27, 2010

Good grief! What a Sunday! The Lord’s Day… a day for worship, for fellowship, for community, for putting others before yourself. Thirty kids at Bethlehem United Methodist Church did just that on Sunday. They raised $2,400 for Team Tanner by baking and pounding the pavement, Light the Night style.

We arrived at church on Sunday morning in time to set up Tanner’s lemonade stand across from the kids’ bake sale and sold after early service and before late service. In a couple of hours, together, we made more than $1,000, thanks to the generosity of our congregation, people who have already shown us immeasurable kindness.

Then, Sunday night, we went back for the kids’ Light the Night Walk. They started in the gym and ended up outside running and walking around the parking lot. Preschoolers through 5th graders… kids who asked their classmates at school to bring in their change for Tanner… kids who went door to door in their neighborhood, sharing Tanner’s story and asking for help. At the end of the walk, they took their money, which they had folded up in bandannas and carried with them, and dumped it happily, one by one, into a green box. Tanner and I watched in disbelief as it piled up… $1,200 worth, collected by children just to help a friend.

It was a triumphant night. One in which kids dealt a blow to the type of cancer that makes up ¼ of all childhood cancers. Imagine if we were able to find a real cure for leukemia? One quarter of all childhood cancer would disappear in one fell swoop. So fitting that kids should play a role in that. I was so proud of them and so humbled by their enthusiasm and dedication to helping their friend.

But, the night wasn’t over. John took Jake home to go to bed, but Tanner and I headed to Rally Mania, the Rally Foundation for Childhood Cancer Research concert at the Factory in Franklin. Along with Tanner’s friend, Madelyn, and two other little girls, Tanner was a Rally Rock N’ Roll Princess. After dancing and singing for an hour or so, they brought the girls up on stage, each escorted by a teenage boy who was also a cancer survivor. As the crowd cheered and clapped, they presented the girls with pink guitars, signed by all the artists who participated in the concert, including Eddie Money, Kix Brooks, Ashley Cleveland and Jars of Clay. Tanner was beyond surprised and has been “writing” songs on it all afternoon today. We danced and sang until the very end and Eddie Money brought Tanner and another Rally Princess up on stage with him. Then he kissed Tanner’s hand and called her an “Angel.” We had so much fun and she felt so special.

That's Eddie Money pointing at Tanner!

On the way out of the concert, carrying the pink guitar in a big cardboard box, I told Tanner I thought she was a pretty lucky girl. It sounded odd as it came out of my mouth, considering what she has been through and still has on her plate, but it felt right anyway. I told her that her having leukemia had given us the ability to see the fullness of peoples’ kindness, their wonderful way of reaching out to help when we needed it most. She agreed and said, “I think a lot of people love me.”

So, now Team Tanner stands at $14,600… a number I never dreamed to reach.


Clinic Day #40

September 8, 2010

Today was Tanner’s monthly clinic visit for Vincristine and counts. Her neutraphil counts were about where we expected them after having raised her chemo two weeks ago to 75% — 1,500, which is the high side of where they like them to be. If they are still up next month, they will raise her chemo again. I’m hoping that’s not the case as the last 2 or 3 times they have tried to raise her methotrexate level to 100%, her counts have crashed and it takes 3-4 weeks for them to come back up above 1,000. That would mean her missing a lot of school and be so disheartening for her. She’s doing so well.

It was the fastest clinic visit we have ever had. We were in an out in 1 ½ hours thanks to a new method of ordering chemo. Love Vanderbilt. She was back at school in time for lunch.

The weather cooperated enough for us to have a very successful lemonade stand! We don’t have an official count yet, because we have lots of coins to count, but we raised somewhere in the neighborhood of $170!!! Wow! She is so excited and can’t wait to tell Corinne at school tomorrow. Thanks to Corinne, Laurel and Ashley for being our lemonade stand partners.

We had some special visitors at our lemonade stand – Madelyn and her mom, Amy, and brother, Hudson! Madelyn is a little four-year-old girl who lives in our neighborhood and also has ALL. It was fun to see them and always great to be able to chat with Amy.

Started another 5-day pulse of steroids tonight. She is on the same increased dosage that she had such a hard time with last month. I hope she can hold it together enough to make it to her Alice in Wonderland rehearsal on Friday night. She has been counting the days down until this first rehearsal for two weeks.

Thanks to all the sweet former neighbors who were so generous to Tanner’s Lemonade for Leukemia stand today. We miss y’all!


Fireworks and Fireflies

July 4, 2010

Do you remember the magic of fireflies when you were young? The wonder of a little bug that comes out at night and lights up the darkening sky? Tanner and Jake almost never get to see them. We put them to bed so early, it’s still light out.

A couple of weeks ago, I bought some bug catchers and some butterfly nets so we could catch fireflies. I bought six of them so that when we had Lily and Madelyn’s families over for a cookout, we could stay up late and they could all catch some. That would have been last weekend, and the kids were really excited about it. Ironically, as would happen only when you try to get three kids with leukemia together, one of them ended up in the hospital. Little four-year-old Madelynn had a fever and low counts and we ended up canceling until everyone could come. Tanner was extremely disappointed.

Tonight, after having a great time decorating our bikes and riding in the Fourth of July bike parade in downtown Franklin, we planned to go to Corinne’s house to catch fireflies and, hopefully, see a few fireworks in the backyard. We set out with glow necklaces, silly string, bug catchers and butterfly nets in tow. The kids waited and waited for the fireflies to show up, and finally, they did.

They all ran around catching them in their nets and putting them in their bugcatchers. Tanner ran to me, elated that she had caught five fireflies. Then, she tripped over a jump rope and fell face first on top of her bug catcher. The bug catcher broke apart and fireflies streamed out into the sky. Tanner screamed; we thought at first she had hit her port and hurt herself, but she was hurt in a different way. Her little heart had endured as much disappointment as she could take. She grasped at the fireflies and sobbed as she watched them get away. There was no consoling her. I picked her up and hugged her to me and took her inside for a moment to try to calm her down, to tell her that there were lots more chances to catch fireflies this summer, that we could put hers in Jake’s bug catcher and take them all home with us. Nothing worked. She wasn’t crying about one disappointment; it was ten, maybe twenty, disappointments wrenching from her body in loud high pitched sobs.

She was mourning all the lost opportunities, all the times she has been told to be brave, that we’ll get to do it another time, that we can redo theatre camp, that she’ll get to go back to school eventually, that there will be another birthday party, another class trip, another chance to sing in the church choir, another dance lesson, another beach trip with my family.

Sometimes it is too much disappointment for an almost seven-year-old to handle. So many opportunities that disappear into the night like lost fireflies.

At home, we watched fireworks from the windows. She wanted to go outside and catch more fireflies, but she and Jake were exhausted and it was late. I promised her, once again, that there would be other opportunities. That we would invite friends over one night and catch fireflies in the yard. Just like I have promised her so many other things that will return to her once this disease has left our lives for good. Two-and-a-half years is an eternity to a child, especially one that lives on the edge of constant disappointment. It’s just too long.

Despite the meltdown, the night turned out okay. We returned home to find poor Domino in his crate barking furiously at the “intruders” that were making such loud booming noises. When we opened the crate door, he barreled out growling and barking, skidding around the corner to the front door, looking for the bad guy that might hurt his family. Love that dog. We took him down in the basement, where it wasn’t as noisy, and everyone played for a few minutes. Then, we watched some fireworks out the windows and went to bed. Turns out Jake and Domino feel similarly about fireworks. Both of them only like to watch them from inside; outside they are just “too woud.”

Luckily, I can recreate firefly catching any night of the summer. And, just like she always does, she’ll get over it. I just wish she didn’t have to.


Clinic Day #36 — Ever So Slowly

July 1, 2010

We went into clinic this morning for counts. I was expecting, after three weeks of being on 50% oral chemo dosage, for her counts to be well up above 1,000… but… no. 900. 900? That’s it? That’s only gaining 100 neutraphils per week… pretty slow, but I guess at least it’s in the right direction.

There is a theory that after a long time on chemo, the body develops bone marrow fatigue. As if to say, “Why should I bother to make any new cells, you’re just going to kill them?” Seems realistic to me.

So, we’re not quite ready to dine out in a restaurant again, but we’re not hibernating either. We’ll take it.

Been busy swimming a lot, playing with Domino and having playdates. Tanner’s friend, Meredith, came over yesterday for a “slumbover”… that’s when you have a friend over in the afternoon and they stay for dinner, you put on your pajamas and watch movies and they go home at bedtime. They had a super time.

Tanner got her birthday present a little early today (her birthday is July 8th). She wanted a new bike and we gave it to her today so she could ride it in the 4th of July parade in Franklin on Sunday. She opened up the garage door to go out and ride her scooter and just screamed in delight when she saw it… I love that.

Please pray for our little friend, Madelynn and her family. Madelynn is four and lives in our neighborhood and has ALL. She has just started maintenance and is experiencing the roller coaster that is the first months of this stage as they try to find the right dosage to keep her counts stable. Maintenance is such a dance; we’re still doing it. But, those first few months are very unstable. We were actually supposed to have a cookout with Madelynn’s family and Lily’s family last weekend and, ironically, had to cancel because Madelynn was in the hospital with low counts and a fever. Thankfully, it turned out to be a pretty benign virus and she got to come home pretty quickly. But, her counts continue to stay very low. I ran into her Mom, Amy, walking in the neighborhood early the other morning. We talked briefly about how disappointing it is to start maintenance… it seems like it should be so great, but it’s actually pretty rocky. It’s just a tough pill to swallow when you’ve waited for those first awful six months to be over.


Laying Low

June 14, 2010

We’re laying low. It’s too hot to do anything but swim, but the pools are mostly too crowded for us… enter, the Whitler’s with their backyard pool! We swam at their house today and had a great time. Thanks so much, guys… you’re always there when we need you.

Tanner is feeling fine. She was really fine after one day of the antibiotics. The fact that she has been able to beat this so quickly makes me believe her neutraphils are on the way up… we hope! We need them to recover in time to get to Vacation Bible School next week. Tanner will be totally devastated if she can’t go. She handled missing her show on Friday really well, but it all burst from the seams on Saturday and Sunday. Like all her pent up frustration just came out at once. Ugghhhh.

We snuck out to the neighborhood pool on Sunday morning when most were at church and got to swim with Madelynn. Madelynn is a little 4-year-old girl in our neighborhood that also has ALL. It was great for the girls to be together and for me to get to commiserate with Madelynn’s parents. There was some considerable mutual steroid-cursing going on, for sure. In a couple of weeks, Madelynn and Lily and their families will be coming to our house for a cookout and some fun. I’m looking forward to it.

Other than that, wracking my brain for fun, germ-free activities that don’t put us outdoors in the heat of the day. It’s really quite challenging. More swimming at the Whitler’s on Wednesday. Then, clinic again on Thursday.

Time to have a talk with Tanner’s neutraphils… I don’t think they understand how much is at stake.


School Days

March 16, 2010

Tanner will go to her fourth day of school tomorrow. It really, really seems too good to be true. She is so, so happy to be going and has adapted beautifully. Her teacher told me that on Friday, her first day, whenever she would look out at the class, there would be one child just beaming every time… guess who? We are so grateful to the kids and staff at Moore Elementary for making Tanner’s homecoming so special and for nurturing her with such love and compassion.

Friday and Monday she stayed at school until 1 pm. Friday she begged to stay. Monday she had the teacher call me to come get her… she was too tired to stay. But, today, I thought I would let her try to stay until 2 pm. I went to get her at 2 on my way to pick up Jake at preschool and she was in the gym skipping with one of those things that straps around your ankle and you jump over the rope with the ball at the end. She begged to stay and said, “See, I have aaallllll my energy!” And she did. So, I left her and came back for her at the end of the day expecting her to be exhausted but she wasn’t. After playing some wii with Jake, we went outside for some scooter and bike riding with the neighbors. Crazy.

So, I had my first real day off from Momming in nine months today. It felt great. John gives me lots of time on the weekends to recharge away from the kids, and my friend Beth is awesome about staying with them, too. But I always feel a little beholden. Not so when I drop the kids off at school. Everyone’s happy and I’m paying for them to be there so, no guilt… bliss.

I would love to say I did something decadent like had a massage or something, but I went to Big Lots for some organizing supplies and then unpacked and organized our bathroom stuff. So glamorous. But, you know what? I was uninterrupted and watched HGTV the whole time and ate my lunch by myself, so it was fabulous.

Did I mention we moved this weekend? We did. It went pretty well, although Tanner did not handle it very well. I think kids in her situation carry such a high level of anxiety to begin with that any little thing can put them right over the edge. She had very mixed feelings about moving. She is really sad not to be across the street from Corinne and worried that they won’t be friends anymore. But, despite what she says, I think she loves the new house. Bottom line, though, moving can unsettle any kid, much less one who has a lot of reasons to be afraid of what’s around the corner.

Tanner being anxious about something translates into some pretty supernanny-worthy behavior. I was in total agony when I called the play therapist to schedule an intervention and found she was out of town for the week. I am sure she heard the desperation in my voice when I left her a message.

Many thanks to my parents for helping out so much this weekend. My Dad hung and fixed many, many things while my Mom was her usual whirling dervish and ran circles around me packing and unpacking. They stuck it out even though Tanner was a nightmare and I appreciate it more than they will ever know.

Even Jake was a little whiny and ornery although mostly he just likes to tell everyone how much he loves his racecar room. He “wuvs” the new house and calls it our “new home.” God knew what he was doing when he gave me this child. He is like a balm for what ails me. Even though he is only three, he plays a huge role in helping me get through this experience. He recharges me daily with his sweetness and light.

This new house is such a blessing for us. It feels like a shoe that fits just right. I love everything about it (with the exception of my laundry room, which is really a laundry closet) starting with the cul-de-sac that we live on, which is the perfect place to ride a bike, the neighbors who have been so kind, and the view of the creek and trees out the wall of windows in our living room.

I’m off to bed in Tanner’s room. Leukemia has turned her into a chronic sleep walker and we are terrified she’ll make a wrong turn in this new environment and fall down the stairs. Until I feel comfortable that she has the lay of the land embedded into her subconscious, I’m bunking it in the twin beds.

Before I sleep I’ll be saying prayers for some kids that need them. Madelynn, our little 3-year-old friend and neighbor who has ALL is going through Delayed Intensification and is having a very hard time with nausea and stomach pain. She is three and can’t articulate her pain to her parents. Please pray the pain subsides and that her parents, Amy and Alex have the strength it takes to watch your child suffer so cruelly.

Also, a little boy named Cole has the same type of leukemia and treatment plan as Tanner, Lily and Madelynn and recently had a CNS relapse. He has caught a cold that turned into fungal pneumonia and is not responding well to treatment. Please pray that the doctors find the right medication to help him make it through this. So terrifying… this child was in maintenance and doing well. Just reminds me how fragile Tanner is even when she looks and feels great.

One more… Samantha who just had a bone marrow transplant and is in the midst of the worst of the side effects.

Too many kids suffering…


Two Doors Down

January 23, 2010

Three women who didn’t know each other 8 months ago sat in a booth at a restaurant and shared secrets they didn’t dare tell anyone else. They shared heartache others can’t understand, and information others don’t need to know. They cried tears of laughter and anguish. They shared a bond both wonderful and terrible. Their young daughters have leukemia; three beautiful girls with a grueling disease that tests their mothers’ stamina and will.

They were glad to be there, but at the same time, wished they weren’t.

Larisa, Amy and I went to dinner at 6:30 and didn’t leave the restaurant until 11 pm. We had much to share and formed a reluctant sisterhood of sorts over pasta and wine. We talked about the odd coincidence of circumstances that brought us together. When Tanner was diagnosed with leukemia, Larisa’s daughter, Lily, was in the hospital with an infection during the Delayed Intensification phase of treatment. A mutual friend emailed me and said I needed to meet them; they were just two doors down from us in the hospital. I remembered my friend talking about Lily. She had showed me a painting a month before that she was doing for Lily’s at-home classroom. I remember thinking how devastating it would be to have a child with leukemia and prayed for her that night. Now, here we were. Lily and Larisa came down the hall the next morning, bringing Lily’s Garden bracelets and soaps and a sweet note Lily wrote for Tanner. I still have it. It says, “This is hard, but I know you can do it. DI is the hardest part.” It is written in red crayon. I also still wear the lavender Lily’s Garden bracelet; I haven’t ever taken it off.

When they stopped by our room, Tanner was in bed, literally panting in pain. I stepped into the hallway so as not to disturb her and knelt down to talk with Lily. She had the face of an angel framed on a sweet, bare head. I told her that Tanner was getting her port put in that day and Lily lifted up her shirt, unceremoniously, so that I could see hers. Larisa gave me a pink sheet of paper, which I also still have, with her name, numbers and email address and an offer to contact her whenever for whatever.

About 2 weeks later, she became a lifeline for John and I. When I called her to ask if Tanner was ever going to go back to being herself after the steroids, she assured me she would. She said it would take about 3 days for her personality to start to show up and she was right. Since then, we’ve become friends and so have Tanner and Lily. We don’t see each other that often, but I know she is a phone call or email away if I need an understanding ear or have a question for someone who has been there.

Five months later, Tanner was in her first month of DI and on her second hospital stay for that month. She had pneumonia, and on about day 8 of our 10-day stay, I got a facebook message from a friend who said a church member’s daughter had just been diagnosed with leukemia and was in the room just two doors down from us. I went down immediately and found them gone to surgery. I left a note with my name, phone number and email and an offer to contact me whenever for whatever. The next day, we met Alex in the 6th floor lobby. Tanner and I met Amy later that day when she stopped in the doorway to say hello. I remember seeing her 3 weeks later, on Thanksgiving morning, coming out of Kroger carrying a bag of bagel bites for a steroid-crazed child and assuring her that she would get her daughter back 3 days after stopping steroids. I recognized the terror in her face as my own when she tried to believe me.

Over dinner tonight, Amy said she, too, had prayed for us before her daughter Madelyn was diagnosed. The mother of a little girl in Tanner’s class at school had lifted her up in Sunday School, a class of which Amy and Alex are members.

Larisa said there had been a “two doors down” family for her, too. Unfortunately, their story ended sadly.

We joked tonight about starting a “two doors down” club for people to pay forward what has been given to them by another, and to share the wealth of medical information that means nothing to most, but everything to a very few.

Thanks, girls. I needed both the laugh and the cry. And, I’m glad we have each other, even though we wish we didn’t have to.


How Much Chemo Does it Take…?

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.


The Good, the Bad and the Really Cute

The Good, the Bad, and the Really Cute

October 29, 2009

We’ll start with the good news: the doctors believe Tanner is responding to the antibiotics and that we are on the right road to beating this thing. She is still having fevers, but they seem to be mostly pretty low grade and they are further and further apart. Thank God.

Then, there’s the bad news: I don’t think there’s any chance we will get home for Halloween. She has to be fever free for at least 24 hours and they want to continue giving her antibiotics by IV for a few more days and gradually take her down to oral antibiotics and see how she does before we go home. So… day 8 and still counting.

Here’s the Really Cute part: Jake came to visit today and the two of them sitting in bed eating bagels together was priceless. I could have cried. It was the most natural thing in the world and she was so motherly with him. He came in and said, “Hi Tanner. You not got any hair?” She just smiled and showed him the top of her head and said, “Feel it. It all fell out,” and that was the end of that. He just accepted her just like the big sister she is and moved on. John’s Mom also came and Tanner kicked both John and I out so she could be with Jake and her E.

She seemed to feel okay this morning, but was exhausted after Jake left and slept a lot. She seems worn out with being sick and the Zithromycin antibiotic they have her on is tearing up her stomach.

I miss my family. It has been more than a week since we have all four been together and John and I haven’t spent more than 20 minutes at a time together.

We have accepted the Halloween thing, though and John has come up with a great idea. We are going to ask our neighbors to keep their Halloween decorations up and let Tanner, Jake and a few friends Trick or Treat when Tanner gets home. Friends are helping to put together a flyer to distribute to the neighbors and go door-to-door asking for their help. On Halloween, they have a celebration in the hospital and do reverse trick-or-treating where the nurses and others come to the kid’s doors and give them candy. We’re going to bring Jake up here to “trick-or-treat” with Tanner and, hopefully, they will bend the two visitors to a room rule for that time so both John and I can be here with the kids. We figure we’ll have two Halloweens that way.

Please continue to pray for little Madelyn and her family. I saw Madelyn in the play room today (she is adorable) and she was doing well with her new port. Her parents continue to grapple with accepting what has happened to their child and dealing with the overload of information that they are faced with at diagnosis. It is such a difficult time and my heart breaks every time I see them. It is truly a club no one wants to join and I am so sorry to see another child and family start this rocky journey.

Tanner is asleep. A nurse is in hooking up her IV to start an antibiotic infusion. I’m going to put on my jammies, watch a movie on the computer (thank God for the laptops we all have) and go to bed.

No fevers, no fevers, no fevers….


Waiting for a Break

October 25, 2009 Tanner’s fever broke sometime late last night and she remained fever free most of the morning, raising my hopes that we might be done with the fevers. Unfortunately, I was wrong and she spiked another fever at lunchtime. But, I think we’re making progress. We went fever free for a while and the fevers seem to be responding well to the Tylenol again. In fact, I believe she is fever free right now while she sleeps, so we’ll hope that continues.

Doctors told us today that she also has a sinus infection and added Zithromycin to her growing list of antibiotics she is taking. They expect we’ll be here the rest of the week and we are praying we’ll get home in time for Halloween. It breaks my heart to think she might miss it. She’s been really excited about it and has her Addams Family Wednesday costume all ready.

John came to the hospital this afternoon so I could go home and see Jake for a little while. I got the best hug from him when I came home. He is having a ball with his grandmothers, but this is so hard on him, too. John and I just pass through briefly and he keeps asking me where Tanner is and when she is coming home.

Please pray for Madelyn, a 3-year-old little girl from Franklin who was diagnosed with ALL last night. They live within a mile or so from us. She is on our floor and we met her dad today briefly and offered our help. I know how helpful Lily’s Mom, Larisa, has been to me and how great it is to have someone who is a little ahead of you in treatment to talk with. I caught a glimpse of Madelyn’s Mom today trying to calm her screaming child. I recognized myself in the look on her face… terrified, overwhelmed, devastated. Diagnosis is such a hard time and I hope that we might be of some comfort to them once they get their heads above water.

I’m going to sleep dreaming of a feverless tomorrow. Thanks for your thoughts and prayers.