Category Archives: holidays

An Army for Hope

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February 2, 2011

I dropped Tanner off half-hour late to school yesterday knowing that she wouldn’t make it all day. The steroids had done her in, but I thought she had a couple of hours in her. As expected, she called me about noon and we picked up a movie and she spent the rest of the day on the sofa.

I didn’t think there was any way she would make it to the Leukemia and Lymphoma Society’s Man and Woman of the Year reception that evening, which was fine. It’s not mandatory that the Girl of the Year be there, but it’s nice for candidates and potential candidates to meet the kids who are inspiring them.

Tanner insisted on going (surprise, surprise) despite the fact that she didn’t feel very good and her legs were itchy (she has been having some kind of allergic issue or something).

The four of us arrived at Cabana in the pouring rain and spent a nice evening with some of the candidates and some potential candidates. We are so grateful to these soldiers of hope for a cure, some of whom have personal connections to the cause and some who don’t. It was good we came because Jack, the Boy of the Year, couldn’t make it and I think it meant a lot to people to meet Tanner. I was asked to tell our story and shared with them the extent of Tanner’s treatment and what she has been through. They were eager to learn and I’ve already made facebook friends with a few who wanted to know more.

I was asked to keep my comments brief, so I decided to tell our story in numbers – in doses to be more accurate. I went back to Tanner’s chemo roadmap in our 3-inch Vandy binder and counted up all the chemo she had received thus far. It took my breath away to see it listed that way. I wanted to share it with you as a testament to the toughness of my girl and of all the kids who endure this brutal treatment and more:

Tanner’s Story in Numbers

25 days inpatient in the hospital
8 ER visits
47 visits to the oncology clinic
3 blood transfusions
5 platelet transfusions
3 antibody transfusions
196 doses of dexamethasone (high dose steroids)
27 doses of IV Vincristine
482 doses of oral mercaptopurine
2 doses of Peg-Asparaginase via simultaneous injections to the thighs
8 doses of IV Cytabarine
1 dose of Cytabarine injected into the central nervous system via lumbar puncture
5 doses of IV methotrexate
15 doses of methotrexate injected into the central nervous system via lumbar puncture
56 doses of oral methotrexate
1 dose of IV cyclophosphamide
3 doses of doxorubicin
13 doses of oral thioguanine

This is, of course, only part of the story… the physical part. The emotional part can’t be put into numbers… it’s too complicated for that. And, Tanner’s numbers are really the best case scenario for a kid with leukemia. Boys would have a whole year more of chemo, and those who are standard or high risk or who have a more difficult to treat type of leukemia would endure much more than this.

It was good to remind myself of what she has been through… to remind myself that she has reason to act cranky sometimes or be angry or frustrated much more than the normal child. To marvel at how often she is not these things… how often she is happy, enthusiastic, excited and joyful.

Like today, for instance. I kept her home from school today. She didn’t feel great and there was some strep in her class that we wanted to avoid. She watched some TV this morning, then decided she would make some valentines for the kids who will be inpatient over Valentine’s day… her idea. She was so excited about it and got out paint, stickers, jewels and markers to decorate them with. She, Jake and I made nearly 30, and Tanner excitedly pulled out the last of her Halloween and Christmas candy and taped pieces to the valentines. She made a special one for Alli, the little 2-year-old who was on the ventilator and is now off, but still inpatient. We’re not due at clinic again until Feb. 23, so we’ll make a special trip in to deliver them. She wanted to go today!

We were so proud of her last night. Proud of how poised she was as adult after adult she didn’t know came to shake her hand. Proud of how she stood sweetly next to me while I read off the list of chemo she had endured, and of how she poked me with her elbow when I got a little teary and reminded me to buck up! Proud of her for just making it through with fierce determination to still find the good things in life. Proud of how her teacher said she did all the work asked of her yesterday at school even though she had to put her head down several times because she didn’t feel good. Proud of her for recognizing that it was important for her to be there last night even though it isn’t really a fun event for kids.

It was a great night to hope.

Love,
Beth

Clinic Day #45

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January 4, 2011

Refreshing to write 2011 on the date line. Nice to enter the actual year that chemo will end for Tanner.

Sorry for not updating for so long. We’ve just been living… like normal people, you know?

Here are the highlights:

A White Christmas in Tennessee

– Christmas was wonderful and relaxed. We stayed right here and enjoyed the snow with John’s family. It was beautiful and peaceful and magical… just the way Christmas should be.
– The children’s Christmas Eve service at church was perfectly imperfect, as always. The kids get to pick a costume to wear and come forward as their part is read about in the reading of the Christmas story. Tanner was an Angel… Jake, after much deliberation and protestation, was a shepherd. Beth and Glenn came home with us and we ate Stromboli and exchanged gifts.
– My parents were planning on coming to our house the day after Christmas, but got snowed out. So, that Wednesday, after clinic, the kids and I piled in the car and headed to their house for “Christmas” with Grandmom and Grandad. We left John at home for a much needed bit of alone, downtime.
– We’ve spent lots of time online and at shelters looking for a new family dog. We’ve found one great candidate, but we’re continuing to look to be sure we’re finding just the right one. If you know anyone who can’t keep their medium to large sized, housebroken, kid-friendly dog, send them our way!

Tanner’s clinic visit last week held very good news… her counts had come down to 1,600 (from 3,700) on their own so we did not have to raise her chemo over 100%! Huge sigh of relief. No one wants their kid to be the one that needs more than 100% dosage to keep counts down. We were terrified that going over 100% would crash her counts and keep her from being able to do Alice in Wonderland and Annie over the next couple of weeks. That would have devastated her.

That was the good part of clinic. The not-so-good part was that they raised her steroid level slightly because she had gained some weight. She normally takes 5 pills per day for 5 days; they raised it to 5 ½ pills per day. As evidence of how unbelievably potent the steroids are, she reacted as if they had doubled her level. She was crazy emotional, tired, would eat like crazy all day only to feel too nauseated to eat at dinner, and now has been having extreme neck and jaw pain for the past three days. We thought the pain might be from the Vincristine (IV chemo), which can cause jaw and face pain. But, today her left cheek swelled slightly, but noticeably, so we think she might have some kind of infection, maybe a salivary gland. She’s also been coughing a lot. After talking with Tanner’s doctor today, we agreed to come in to clinic tomorrow if it isn’t any better. If she develops a fever, we will have to go to the emergency room tonight.

Please send good thoughts for Tanner’s health during these next few months. She will be so crushed if she has to miss either of her plays. Allowing her to participate in Annie, which has a fairly intensive rehearsal schedule, was such a leap of faith for us. We wanted to say no, but knew she really needed us to say yes. Hopefully, her body will cooperate.

Also, please keep in your prayers little two-year-old Alli. She was diagnosed with high risk pre-b ALL (Tanner is low risk) at the end of October and has spent more time in the hospital than out. She is currently in the hospital with a cold, very low counts and a intestinal infection.

Love,
Beth

Christmas Spirit

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December 22, 2010

Christmas last year

Every year, the Christmas spirit hits me at some point. I may have been preparing for weeks, going through the motions because I know I have to or I will get behind, but not really enjoying it like I want to. Last year, it hit me when a sweet friend sent Santa to our house because she knew we wouldn’t be able to get out to see him that year. He arrived in a black pickup truck and came in amidst shouts of joy from my kids. He snuggled my bald little girl and tried to coax Jake to sit on his lap to no avail. And when I hugged him goodbye, I whispered in his ear, “Thank you so much… I didn’t think we would get to do this this year.” And, he whispered back, “I know… that’s why I came.” POW! The Christmas spirit hit me like a ton of bricks!

This year, it has come in more gently. I’ve been trying to enjoy the kids being home and their anticipation of Christmas, but mostly it has seemed like too long of a week without school before Christmas this year. But, this morning, sometime between 10 am and 1 pm, Christmas arrived for me. We invited two families over to decorate Gingerbread houses. These are not just any friends… they are dear friends. These are the girls that showed up, silently, at the hospital to hold my hands as we waited to find out if Tanner would make it through the night when she had to be life-flighted to Vanderbilt for a drug reaction. They are the girls that bring food without being asked, bring crafts when they know we have been housebound too long and take Jake with them when I need to focus my attention on Tanner. They are those easy kind of friends that are more like having family around your house.

So, we gathered this morning, kids happily smearing glue-like icing on gingerbread houses and eating easily as much candy as they smothered on. The girls did a nutcracker show, the boys played batman and air hockey and the Moms got some much needed girl time in a long week with no school.

A sugar coma in the making

When they all left and I sent the kids to their rooms for some quiet time, I realized that I was finally in the Christmas spirit. I put some music on the ipod and made fudge and counted my blessings… my many, many blessings.

When John got home, we went to see some Christmas lights and then, after everyone went to bed, I made Christmas morning breakfast casseroles to freeze in anticipation of Christmas day.

Christmas is just a magical time when, despite all the hubbub, there are genuine moments of such kindness to be found. Like the other night when my friend, Ron, called to say they had a special package for Tanner on Christmas day. I met Celia in the Kroger parking lot (okay, it was the liquor store parking lot, but that didn’t sound so good!) and we talked for 45 minutes in the freezing cold, catching up. Celia and Ron had pulled some favors and got a signed copy of Taylor Swift’s new CD for Tanner. It says, “I (heart) Tanner.” Swoon. In addition, the daughter of the person who got the CD for Celia made Tanner a necklace out of a Taylor Swift guitar pick.

In the bustle of season our friends had remembered us. That is the Christmas spirit.

I know I haven’t written in a while, so here are some of the highlights of the past two weeks:

– Jake had his Christmas program at school where he wore one blue transformer glove the entire time he was on stage singing Rudolph the Red Nosed Reindeer.
– Tanner had pajama day, went can caroling for the Second Harvest Food Bank and enjoyed her last day of school before Christmas break.
– We had our picture taken with Santa. Started out as a kids only picture, but since Jake wouldn’t get anywhere near Santa without me, we all jumped in. As you can see, he is clinging to my leg for dear life.
– Beth, Tanner and I went to see the Nutcracker. It was beautiful and reminded me so much of when my Mom used to take me to see it in downtown Philadelphia as a little girl.
– Beth knew me well enough to offer to go with me to return Domino to the rescue organization he came from. She was a great distraction. We drove to Jackson, TN, and handed him over to, hopefully, find a loving home without little kids. I still miss him terribly, but we’re ready to start looking for our new, family friendly dog after Christmas.

If it hasn’t already, I hope the Christmas spirit creeps up on you or hits you right between the eyes!

Love,
Beth

I Come Home, Tanner Goes to the Hospital

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November 17, 2010

As I was on my knees fastidiously de-radiating my friend, Kim’s house so I could go home to my family, John and Tanner were on their way to the hospital with a fever. The cough she had been fighting all week finally peaked and she was up to 102 degrees. John was able to skip the ER and go straight to clinic (much faster). Fortunately, her fever came down and her counts were high enough that they were able to come home after an IV round of Rocefin (a broad-range antibiotic).

She took a big nap yesterday afternoon, but was feeling fine by bedtime, despite some coughing during the night. We kept her home from school today, but we all went in for her Thanksgiving play and Thanksgiving lunch (I didn’t stay for lunch as I am still not clear to use regular non-throwaway utensils). The play was cute and she is feeling fine. I think she will be able to return to school tomorrow.

The bumped up chemo has done it’s job. Her neutraphils were at 1,150, which is about perfect for maintenance. Her hemoglobin and platelets, however, are holding strong, which is all great. Hopefully, they won’t drop any more and she can just stay at this perfect spot.

While she and John were at the hospital, they met some Titans – Mark Mariani (L) and Robert Johnson (R) – who were visiting kids in the infusion room. Tanner looks like a little sapling between two mighty oaks, huh?

I’m feeling just fine… a little tiny bit fatigued, but otherwise back to my normal self. I can be around the kids, but can’t touch them much. No more than 30 minutes of contact a day until the day after Thanksgiving. I get quick hugs to try to sustain me.

John’s Mom is on duty and has been a great help. She’ll get Jake to school tomorrow while I go into Vanderbilt for my body scan. This should tell us whether the cancer had spread anywhere beyond the thyroid. I have to lie still for an hour-and-a-half. Let’s hope I can listen to an ipod… otherwise it’s going to be a very long scan. Maybe I’ll nod off…

Speaking of nodding off…

Love,
Beth

Trick-or-Treat

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Wow! What a difference a year makes. Last year, Tanner had just been released from the hospital at 1 pm on Halloween after a 10-day stint for pneumonia. She had lost all her hair while in the hospital and had come home with her port accessed so we could give her IV antibiotics around the clock for the next few days.

This year, no worries. She is full of energy and has beautiful new curly hair and looked adorable as Alice in Wonderland. She and Jake had so much fun trick-or-treating. Our neighborhood was FULL of trick-or-treaters which always makes for a good time.

We’ve had a great weekend. Nothing special, just simple fun playing with neighbors and hanging out at home. I’m on day 4 of my low iodine diet. It’s a little repetitive and limiting and with no dairy allowed, I’m missing creamy stuff. But, I think I’m losing some weight, so there’s that silver lining you can almost always find!

The worst part of the diet is no chocolate or red dye #3, which pretty much eliminates all candy… on Halloween! It almost didn’t seem like Halloween without the candy coma.

Tanner will have to miss three days of school this week because they are offering the flu mist Tuesday, which is a live virus and Tanner can’t afford to be around a large number of people with that vaccine in their system. Dr. Mixan said three days. Wednesday is clinic day and she will have the dreaded LP. We’re forgoing all anti-anxiety meds this time. I’m going for bribes — silly bandz????? We’re also going to sit down with her and let her plan HOW she gets the sleepy milk. Does she want to lie on the table or have me hold her or sit in my lap. What does she want them to say before they give it? Or, does she want to count to three before they give it? Does she want music playing? What does she want to eat or drink when she wakes up? I think giving her control of what we can will help her feel less helpless. We’ll see.

Hope your Halloween was spooky and happy!

Love,
Beth

Telling It Like It Is

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October 28, 2010

I made it through my first day of the low iodine diet. Thanks to Beth and her yummy bread and muffins, it wasn’t too bad. Although I will say that scrambled egg whites are a little weird (no point in trying to make an omelet without cheese). I never realized how often I must take a little “taste” off the kids’ plates while I am fixing meals until today when I couldn’t.

Batman and the Joker joined forces today!

Jake had his Halloween party at school day. They wore costumes and trick-or-treated to all the classrooms and offices. He was Batman, of course, and his little best friend at school, Spencer, was the Joker. Too funny. Hilariously, he insisted on wearing his new Superman pajamas under his Batman costume so when he took it off, he was still a superhero! Imagine if Batman could really fly, instead of just gliding, and had x-ray vision in addition to that Batarang… talk about superpowers!

Last night, when I was picking up Tanner’s room before bedtime, I found a little piece of paper on her bed with “Wish List” written at the top. Tanner had written 10 things that she wished for. Most were cute things that any seven-year-old would wish for like “more Silly Bandz” and “All the Build-a-Bears I can make.” But, what broke my heart was #1 on the list… “No More Leukemia.” Further down the list, but not far behind, written in a second grader’s careful scrawl, was, “No More Medisun.” It solidified for me my suspicion that no matter how much Tanner seems immersed in school and friends and play rehearsals, leukemia is still top of mind for her. It still dominates her life.

John and I recently had a conversation about Tanner and I expressed my concern that all this fund-raising and cancer awareness stuff we are involved in could cause her identity to be wrapped up in having leukemia. John said, “It already is. How could it not be?”

And, he’s right, of course. How could a child endure the type of medical treatment she has had; be told all the time not to touch something, eat something or do something because she might get sick; and know how much longer it will go on, without it becoming an integral part of who she is? It’s become a part of who we all are, really.

And, now, ever so slowly, cancer is becoming a part of who I am. For the next two weeks, I will be reminded every time I choose something to eat, that I have cancer. I will cook and freeze food so my family will not have to cook while I am out of pocket. I will frantically try to do all the laundry and cleaning and grocery shopping I can do to leave the house in good condition before I’m not able to help anymore… again… for the third time in 3 months. No matter that it’s not a big, scary cancer like Tanner has… it’s still affecting us all. I can understand how leukemia is top of mind for Tanner.

If you remember, this summer I wrote about a film crew following us for a fund-raising video while we were at Vandy. The video is now available for viewing online at http://pediatrics.mc.vanderbilt.edu/interior.php?mid=7926. It’s a powerful testament to the blessing that the Children’s Hospital is to our community. Tanner appears at about 4:15 if you don’t want to watch the whole video (it’s about 8 minutes), although it’s worth watching. There are no words to describe how proud John and I are of her role in this video. From a child’s perspective, she tells it like it is. No adult explanations needed. Her child’s view is pretty mature, considering all she has been through.

As Tanner says, “Kids shouldn’t have to go through all this mess.”

Love,
Beth

Big News

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October 26, 2010

Some exciting news has come our way this week… Tanner has been named the 2011 “Girl of the Year” for the Tennesee Chapter of the Leukemia and Lymphoma Society!!! What an honor! We’re so proud of her.

What does this mean? It means that the 14 or so candidates for Man of the Year and Woman of the Year will be raising funds in honor of Tanner and the Boy of the Year, Jack Woods. The kids will be LLS ambassadors at parties and events for the fund-raising campaign and even appear in ads. Tanner positively lit up when I asked her if she wanted to do it. Her duties will begin sometime in January and end in June.

Thank you all for supporting her during the Light the Night walk. Our unprecedented success as a “friends and family” team definitely played a huge role in Tanner receiving this honor.

Another piece of news is that I am starting my low iodine diet Thursday in preparation for receiving a radioactive iodine treatment in a few weeks… ugghhh. This radiation treatment is a pill that I take at the hospital and then I can’t be around anyone for five days (and the kids for eight days) while my body is ridding itself of the excess radiation. The iodine is absorbed into any remaining thyroid tissue, along with the radiation, and the idea is that it kills any remaining thyroid tissue, hopefully decreasing the chance of cancer recurrence. Thyroid cancer can recur at any time, even 20 or 30 years later, so I will be tested every year for the rest of my life, essentially. I’m actually relieved that they recommended the radiation… I just want to get rid of this stuff.

Once again, John will have to do it all… work, take care of the house and take care of the kids. I feel so helpless that he will have to do all this… again. I know I have said it before, but I will say it again… cancer sucks.

The low iodine diet is interesting. Since most salt we use in the U.S. is iodized, almost all processed foods are prohibited. No soy, dairy, seafood of any kind, etc. It made for an interesting shopping trip. Thank God for my friend, Beth. She spent all day yesterday baking bread, rolls, muffins and crackers for me from the thyroid cancer cookbook so that I wouldn’t have to survive without carbs for the next two weeks. Who has friends like this? I figure with bread and salt-free natural peanut butter, anyone can make it.

We’ve had a good week so far. Tanner’s energy seems to be back full force and she and Jake are amped for Halloween. Next week, she has a lumbar puncture with chemo injection, so that is looming over our heads, but we are trying not to think about it too much.

Tanner’s school is doing “Pennies for Patients” again in her honor. It’s a LLS fund-raising campaign where kids bring in change from home to benefit LLS. Moore Elementary continues to support our family in ways we never imagined.

I’m going to relish my last day of processed food tomorrow. I’ll miss pizza most, but diet coke is allowed, so I’ll make it!

Love,
Beth

Speechless

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August 23, 2010

Wow! We’re speechless. We’ve already raised $3,600! That’s 36% of our goal of $10,000 for Light the Night!!! Thank you so much to everyone who has donated and to those who are spreading our reach by fundraising among their friends, family and co-workers. We are so grateful. Tanner let out a huge cheer when I showed her our total.

We’ve had a good past few days. Tanner made it the whole week at school last week. She is a trooper and is really enjoying her teacher and class.

Jake gave up his beloved “boppies” (passies) last week and has had it rough, poor little man. He’s finally sleeping better, but is now very hoarse and coughing. I can’t tell if he has a virus or is just so exhausted from trying to sleep without the comfort of a passy. But, he finally had a really good night’s sleep last night and he and I stayed close to home today and did lots of laundry and rested, so hopefully, we’re on the road to recovery for his sake and for Tanner’s.

Jake put every one of those pegs in the holes

The kids had a really fun weekend. Tanner’s cousins gave her a gift card to Build-a-Bear for her birthday, so John took she and Jake to make bears on Saturday. Tanner made a peace sign/smiley face bear (don’t ask) and Jake made… Darth Vader… really. Too funny.
Sunday we took them to the Discovery Museum in Murfreesboro (why have we never been there before?) We had a ball. It’s a kid’s museum with very hands-on exhibits like a fossil digging area, a play grocery store and house, a craft area and music center. Very fun.

Tanner loading coal at the Discovery Center

John came home on Friday with a new ipod player for me to use in the kitchen with my iphone and tickets to a concert on Sunday night with babysitter already arranged. He said I used to listen to music all the time and he wanted me to be able to do it again. I listened to it every time I was in the kitchen today. To the music I like, not the kids’ music. It was heaven. As usual, he was thinking of me and recognized something I didn’t even know I missed. We went to the Ray LaMontagne and David Gray concert on Sunday night – our first date in months. It was nice to just get away from everything.

Jake starts school next week and I’m looking forward to getting back a little “me” time. Unfortunately, it won’t last long as I’m having the second surgery on September 14. I’ve been really mad the last few days that all the things I had planned to do this fall once the kids were back in school will, once again, be put off. It feels like we’ve been treading water for so long and I thought this fall would finally represent a little normalcy and we would finally be able to swim, instead of float. Now, I feel like we’re back to treading water, waiting to see what this surgery finds. Will I need radiation? Will I be fatigued until they even out my thyroid levels? Will they find something on the other side that will change my treatment plan? We’ve been waiting for a long time… for many things… and we’ll wait some more, I guess. But, I’m planning on milking everything I can out of the next few weeks. I’m not going to slow down until I’m forced to.

And, while I’m down, I can raise money… just a warning ☺

Love,
Beth

Nine Screaming Girls + Jake = One Good Time

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July 10, 2010

I’m sitting on the sofa completely spent from hosting Tanner’s Rock Star birthday party for nine little 7-year-old girls. Two super teens from the neighborhood did the girls’ makeup and hair, Aunt Beth applied tattoos, they all decorated cardboard guitars and then we did some dancing and singing and got our rock star on! It was one of the most fun parties we have ever had for the kids. Pressure is on for Jake’s next party; we’re going to have to make it a doozy!

We’ve spent the last few days mostly preparing for the party and swimming at the pool. Thursday night (for Tanner’s actual birthday), we had pizza with E. and LaLa, cupcakes with some neighbor kids and caught fireflies outside. Tanner finally got to catch some fireflies. They had a great time!

Even Domino wants to check out Tanner's fireflies

Thanks to everyone who sent birthday messages… Tanner and I sat at the computer for two days and read them all. They made her smile and feel special.

Poor Jake had a little bit of a hard time with Tanner’s birthday. He’s apparently just gotten old enough to realize that he isn’t getting the same special treatment she is. He would ask in his little voice, “Why I not get a cake? Can I get a car cake?” We made him a special non-girly gift bag for the party, which he loved, but he hid in the media room for most of the party, playing Star Wars wii by himself. Poor little man. When the excessive girliness and screaming was over, he came back out, busted a move or two on the dance floor, got a tattoo and ate his ring pop. It all turned out okay in the end.

Domino attended the beginning and end of the party, but stayed in his crate during the rest, hiding from the chaos. He managed to snag a piece of pizza from the trash after it was over, though. Score one for the dog. He loves him some pizza.

It was a really awesome party and I think Tanner and the girls had a great time, thanks to everyone who helped!

Love,
Beth

My Best Seven Years — Happy Birthday Tanner!

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July 7, 2010

Tomorrow, Tanner will be 7 years old. Impossible. Though the last year has been rough, I still wouldn’t trade it for the world. Any year spent with my family is a year worth living.

We’re planning on swimming in the morning and getting home in time for E. (John’s Mom) and Charlotte (her best friend and honorary Aunt) to come, bearing gifts and well wishes. Then, Tanner wants to make homemade pizza and make another attempt at firefly catching. We’ll invite a few neighbors over for cupcakes and to join in on the fun.

Her birthday party is on Saturday night… it’s a rock star party. I’ve been up late at night cutting out cardboard guitars for the girls to decorate.

Send her a birthday message, if you think of it. It would make her day to get lots of messages.

Love,
Beth