Category Archives: Lily

Fireworks and Fireflies

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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.

Love,
Beth

Laying Low

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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.

Love,
Beth

Two Doors Down

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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.

Love,
Beth

Clinic Day #23

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November 25, 2009

I wish I had taken a picture. Lily, Tanner’s friend who also has ALL, was at clinic today. She, Tanner, Sara (the child life specialist), and two other little girls sat around a table in the middle of the clinic and played UNO. Tanner and Lily were accessed, with tubes hanging out the bottom of their shirts. One of the other kids had an IV pole. It was such a normal scene in the middle of an abnormal situation and was testament to the fact that kids will find a way to be kids, no matter what is going on with them.

When we were getting ready to leave, Tanner and Lily sat next to each other in infusion chairs to remove the sticky patch placed over their ports to keep the needle stable. Lily casually said, “Tanner, do you need some Remove? I have some you can use.” Tanner took the little packets and then both of them pulled up their shirts and began rubbing the pads along the patch to try to loosen the sticky stuff. They each worked for a couple of minutes getting the patch off, then Lily unceremoniously pulled her own needle out and handed it to her Mom while Tanner asked if I would take hers out instead of waiting for the nurse. She looked so impressed that Lily took her own needle out and I told her it must be because Lily is eight. “Ohhhhh,” Tanner said, as if that made perfect sense. It was hilarious and reminded me that there are good moments to be found in even the most challenging circumstances.

We were so hoping to find out Tanner’s neutraphil counts had risen to at least 750 today so we could spend Thanksgiving with John’s family, but it just didn’t happen that way. Tanner’s counts had gone up just 60 points since last week and were at just 440. Anything below 500 is considered severely neutrapenic and as Tanner’s nurse said, “I wouldn’t risk it if it were my daughter.” That was all I needed to hear.

Tanner was really disappointed. She burst into tears right there in the clinic and cried several times on the way to the car. But, as always, she found a way to be happy. She and I are going to cook Thanksgiving dinner together tomorrow – something we have never done and she is very excited about. Anyone who knows me knows I don’t “cook” so much as “heat,” so cooking with Mommy is a real treat.

As always, people are so kind to us. Lauren, in John’s office is bringing us a fried turkey, my friend Kim is supplying a pumpkin pie and Ashley is giving me some of her cranberries. That leaves a couple of side dishes for Tanner and I, which I am capable of.

Hopefully, Tanner’s counts will continue to rise and we can start Long Term Maintenance next week. It wasn’t really expected that they would be any higher than the were today; this is just part of this phase of treatment and why they give the kids two weeks off chemo for counts recovery. She probably bottomed out on Sunday or Monday and has just started to climb. No big deal if they aren’t up high enough to start next week, we’ll just wait another week. But, the sooner we start, the sooner she will get to the point where we can have a little more freedom. Freedom is more valuable than gold and diamonds to us right now.

I’m off to blow the dust off a cookbook or two.

Love,
Beth

Clinic Day #22, the Last Day of DI !!!

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November 18, 2009

photoWhat a day! We celebrated extra large thanks to the kindness of so many people. We started by going to clinic in our Bye, Bye DI !!! t-shirts. The nurses and doctors loved it. We busted into the clinic in full celebration mode and it was great to start the celebration among our cancer compatriots. Everyone in clinic congratulated us and it was actually really fun to go today – lots of hugs all around.

Tanner’s counts, as expected, were very low all around. Her neutraphils (big infection fighting white cells) were at 380 (to give you an idea of how low this is, I had some blood work done last week and mine were at 6,000) so her immune system is every bit as compromised as we suspected it might be and we are very glad we’ve kept to ourselves lately. What we were surprised by, however, was her low hemoglobin level at 7.2. This is the lowest that Tanner’s level has been since diagnosis. I told the doctor before we got counts that there was no way she needed a transfusion because her energy level was crazy. With a hemoglobin level of 7.2, she should have gotten a transfusion, but because she hasn’t been showing symptoms, we decided to wait and see if she recovers on her own or if she starts showing fatigue, blueness or shortness of breath.

I didn’t even notice how low her platelet level was until we got home and she had a little place on her head where she scratched herself. It was bleeding just a little and I put some Neosporin on it. Fifteen minutes later, I noticed it was still bleeding and I thought, “Uh oh.” I checked her platelet level and sure enough she had gone from more than 300 last week to only 58 this week. Yikes! A bandaid solved the problem, but it’s a little weird.

It remains to be seen whether her counts have bottomed out or whether they will come down yet some more. We go back in on Wednesday for counts to see if we can celebrate Thanksgiving with John’s family or if we need to stick to ourselves at home.

This afternoon, we had a surprise visit from Tanner’s friend, Lily, and her mom, Larisa. Lily is 8-years-old and, like Tanner, has ALL. They brought a video and a congratulations card; they know what a milestone it is to get to this point.

Tanner and I sat at the kitchen table and read post after post from Friends of Tanner and Tanner Time. She was so happy to hear from you all. In a way, I think it was the first time she began to understand that this day was a big deal.

IMG_1291After some crazy dancing to our new Roger Day CD, we heard Daddy come home. He brought pizza and a cake and we sat around the table eating pizza and laughing about our day. Then, John got a text message that said, “special delivery on the front porch.” OH MY GOSH!!! It was a party in a box! It was a huge box, decorated on the outside with a huge balloon bouquet, a beautiful flower arrangement, cards, party hats and blowers, a party mix CD, and best of all, a piñata!!! It was from two families who have been such rocks for us. These are the girls who just show up when you need them and who are so thoughtful I know I will never be able to repay them.

So, then the party was on! We ate cake and whacked the heck out of the piñata and let them eat candy after just having huge pieces of chocolate cake. It was a day without description. A day that cancer could not take from us. A day we lived without regard to what comes next. The perfect day.

Thank you all so much. You made a little girl and her family very happy today.

Love,
Beth

Waiting for a Break

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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.

Love,
Beth

Tanner’s New Hair

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photoThis is from Tanner:

I’m at the hospital. And my hair is falling out, but I’m very sad. Lily is another girl with leukemia and she is my friend and she gave me her wigs. One is dark brown and very long and is real hair. And the other one is dark blonde but fake hair. And my Mom ordered me this one and it is blonde just like my real hair. Here is a picture of it.

Love,
Tanner

Golf Carts and Scarecrows

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IMG_1216September 29, 2009 It’s a strange title for a post, but I couldn’t think of any other way to sum up our jam packed and super fun day today. We got up this morning and headed to Lily’s house for a play date. You’ve probably heard us talk about Lily before… she is 8-years-old and has pre-b ALL, just like Tanner. She and Tanner had such a good time playing and her Mom, Larisa, and I got to swap stories and share information, so it was good all around. Lily has a little Chihuahua named Rosie that Tanner fell in love with and she spent the rest of the day asking me if we could get one after our dog, Millie dies… thank God the dog can’t understand English.

Larisa took us all, even Rosie, on a ride around their neighborhood to tour some playgrounds and parks in their golf cart. Everyone loved that and it was such a beautiful day. It just felt so good to be out. And, I think it probably felt good for Tanner and Lily to be playing with someone that just “gets it” with no explanation needed. Lily had to take some medicine while we were there and I could see Tanner thinking, “just like me.” Both girls are out of school now, so we’ll try to get together again soon.

We came home after Lily’s house and ate lunch. Tanner got up to go to the bathroom and fell down, then she fell down on the way back… uh oh. Five minutes later, she was sitting on the couch and just began screaming and grabbing her right leg. I could tell she was in great pain and no position we tried to lay her in helped. I ended up having to give her pain killer, which eventually made her more comfortable, but she lay on the sofa and whimpered on and off for the next hour or so. She was supposed to have a dance lesson, but we canceled it. She started having pain in her leg last night and I noticed her limping on it several times today. I assume it’s neurapathy from the Vincristine, but it’s still unsettling as this is the leg that hurt so bad from the leukemia at diagnosis.

The painkiller eventually did it’s job and we went to a friend’s house for pizza and scarecrow making. All the kids stuffed their own clothes and created some very cute scarecrows. It was great fun and Tanner just seemed like one of the girls with these friends who have been so unfailingly good to us. I got a lot of grown-up girlfriend time today too, which I think really lifted my spirits.

Tanner’s six-year-old friend, Leah, held a lemonade stand today to raise money for Light the Night… so, so sweet. We’re taking her proceeds with us to the coinstar tomorrow so we can count it up and make another donation. We’ve raised almost $7,000 thus far, surpassing our original goal of $5,000 and even our second goal of $6,5000. We’re humbled beyond humbled and so hopeful that Tanner will be able to come to the walk and see all those who will be there to support her. I know I will be an emotional mess that night… it’s really just too much to believe people’s kindness. If you see the blond woman mopping her eyes and sobbing at LP Field, it will be me.

What a great day!

Love,
Beth

This Is How a Cure Happens

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September 27, 2009 I’ve been sitting here on the sofa for the last hour writing thank you emails to those who have donated to Tanner’s Light the Night Team. I’m happy to say it’s not the first time I’ve spent time writing thank yous for the event, nor will it be the last, as I am still not finished. I’ve had tears in my eyes for the vast majority of the time I’ve been writing. I can’t believe the generosity of our friends, our family and those we have never even met.

Tanner was so excited when I told her that we had passed our goal. In fact, we haven’t just passed it, we’ve blown right by it in a flurry of generosity that has made me hopeful that someday, no one will have to ever get leukemia. In the past four days, we have raised another $1,000 for a total, as of this writing, of $5,920. I can’t believe it!

This is a how a cure happens… one donation at a time… donations in honor of a little girl who appreciates it so much.

We’re planning our lemonade stand for this week so Tanner can contribute as well. She’s really excited and so hopeful that she’ll be able to walk with us on Thursday. John and I said today it will be a “perfect storm” of circumstances if she is able to come, but we’re still hoping.

We had a wonderful weekend. My parents took on the responsibility of Tanner’s medication (I didn’t realize how complicated it was until I tried to explain it) and kept the kids overnight while John and stayed in downtown Nashville Friday night. We had a great dinner at my favorite restaurant, a good night’s sleep and a leisurely, uninterrupted breakfast before meandering our way home Saturday afternoon. It was wonderful and my parents are awesome. They stayed with us Saturday night and the kids loved getting to see them.

Tanner has had some odd moments of not feeling well and not being able to describe her symptoms that have me worrying about her red counts, but her energy continues to be great, so I’m trying not to worry about it. Poor thing, I keep staring at her face to see if her lips are blue and picking up her hands to look at her fingernails. I’m sure she’s sick of me.

We have some cancer kid friends that need your prayers … Tanner reminded me last night not to forget to pray for Kinsee – an eight-year-old with T-cell ALL who goes to St. Jude on Tuesday to begin preparing for a bone-marrow transplant. She will undergo intensive radiation and chemo treatments until all the cells in her bone marrow have been killed and her white counts are down to 0. Then, they will transplant the donor’s marrow into her bones and see if she recovers. She will be in the hospital for a minimum of 100 days. This is a very dangerous procedure that, Thank God, is not part of Tanner’s treatment plan.

Another eight-year-old you have probably heard me talk about, Lily, has had very low neutraphil counts. Neutraphils are your big, infection-fighting white cells and a normal count level would be from 5-10,000. Lily’s neutraphils last week were at 300. She has had to be pulled out of school until her counts recover, after just having been able to return. Lily has not been feeling well the last two days and has had a low fever. Please pray that her immune system recovers and she does not have an infection or virus.

Thank you so much to everyone who has donated to help stop this disease, or at least find a more humane way of treating it.

We love you,
Beth

Two Ways You Can Help

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August 16, 2009 We have been, as I have mentioned before, but cannot mention enough, profoundly blessed by the kindness of friends, neighbors, church members, family and people we have never even met since we began this journey 2 ½ months ago. It is humbling to know just how many are praying for Tanner every day, much less bringing us meals, sending sweet gifts and offering words of encouragement and hope.

Yet, amazingly, people still ask us on a regular basis what else they can do to help. I’ll be honest, if I took any more meals from someone at this point, I’d just be taking them because I’m a lousy cook, not because I have any less time than you do to make dinner. Things are fairly normal in that department. And, I have my Jake-care situation well taken care of, thanks to Aunt Beth, my parents and my mother-in-law.

But, now two dear friends have found another way you can help… by contributing to some great causes in Tanner’s honor.

Leslie Woods, friend and babysitter to Tanner and Jake, has organized “Tanner’s Trotters” a team for Franklin 4 the Cure 5k run/walk and family festival held in the Westhaven community on Highway 96 in Franklin on Saturday, September 19. It’s a great event that benefits the American Cancer Society, the National Childhood Cancer Research Foundation, and Vanderbilt Children’s Hospital. There are children’s runs right after the adult version as well as a kids fun area and a concert later that night by Deana Carter. The event is being held this year in honor of Tanner’s friend Lily, who has ALL, and a little boy named Cooper who has brain cancer. Both kids live in the neighborhood. You can register to run or walk on the Tanner’s Trotters team by September 17 at www.run4thecure.org.

Robin Embry a great friend and former co-worker of mine at Lovell Communications, has started a Team Tanner for the Leukemia and Lymphoma Society’s Light the Night Event held on October 1 at LP Field. This is a really special event where teams of people walk in support of those who have cancer. Cancer survivors carry illuminated white balloons and are surrounded by their supporters carrying illuminated red balloons. Those who have lost a loved one to cancer carry a gold balloon in their memory. Although Tanner will not be able to walk with us, due to her immune system issues, we will have a team for her this year and hope she can see for herself next year how many people love her. You can either join the team to walk with us and raise money from friends, family or co-workers, or you can simply donate to the cause on the Website. This is not a fitness walk, but more of a short, ceremonial type of walk. There are activities for kids at the event, so it’s even appropriate for children. To join the team or donate, go to http://pages.lightthenight.org/tn/MidTN09/TeamTanner.

I’ve never liked asking people for money; it’s just not my gig. But, if you could help us honor Tanner in one of these two ways and raise money to help keep another family from going through this misery, John and I would be very appreciative. We’d love to be able to tell Tanner that her team made the most money. Especially since she can’t attend either event.

And, thank you, thank you, thank you to Leslie and Robin for doing this for us. We can’t tell you what this means.

Love,
Beth