Monthly Archives: October 2010

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

Clinic Day #42

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October 20, 2010

Anytime Tanner’s chemo gets increased, we have to go in for a counts check two weeks later to see what effect the increase has had. Today her neutraphils were at 2,700, up from 1,100 two weeks ago and her hemoglobin remained unchanged at 11.2 (a normal level). Both of these things surprised me greatly, in a good way!

It’s very possible her neutraphils are up due to the virus she had last week and they may come down in the next week or so. Her hemoglobin level doesn’t really explain her lack of energy recently, but maybe the higher dose of chemo is just harder on her. I’m trying to tell my Mommy Radar to trust the numbers and calm down, but it just won’t listen.

Tanner, Leah and Elise at the Zoo yesterday

She also got a flu shot today… it was the first time ever that Tanner got a shot of any kind without screaming and crying. I bribed her with silly bandz… who knew? She is participating in a study to determine whether giving kids with ALL an increased flu vaccine dosage will increase their immunity to the flu. Apparently, they have done a similar study with the elderly and a higher dose did improve immunity, so they figured it might work for anyone who is immuno-compromised.

Riding the carousel at the zoo

We agreed to do the study and then they told us that there is a $40 payment for study — $20 when you get the shot and $20 when we go back for a blood draw in a month. Tanner was ecstatic! “I’m going to waste it all on silly bandz!!!” she screamed. So, we went directly for Silly Bandz after clinic. Happy girl.

Love, Beth

Why Don’t I Have Cancer?

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October 18, 2010

As I was explaining to Jake this morning that Tanner needed a pink pill (Pepcid) because she has cancer, he innocently asked a question I really didn’t expect. “Why Don’t I Have Cancer?”

It broke my heart. See, he wanted one of those pink pills, just like he wants to get some of the gifts that Tanner gets (like the pink guitar), or the doctor that Tanner has (“I want to go to Dr. Mixan”). At 3 ½, Jake is just old enough to get that he’s not getting some of the things that Tanner is getting without understanding that he’s also not getting some of the things that Tanner is getting, if you get my drift. In other words, he sees that she has some “privileges” that he doesn’t, but doesn’t understand the price she pays for them.

So, now, my healthy little boy wants to have cancer, too. He’s too little to know you shouldn’t tempt fate by wishing for cancer in this family!

It was easier on Jake when he was too young to notice the special treatment Tanner sometimes receives (or what looks like special treatment to him). Jake was 2 when Tanner was diagnosed and was oblivious to all that. But, now he is just old enough to understand special treatment, but not old enough to understand that some of what looks like special treatment (clinic visits, medicine, extra hand sanitizing) is really not so great. I think he even envies her getting her port accessed.

And, just when I think he is completely jealous of her, I watch him be so supportive and sweet and think maybe he does get it. Last week, while Tanner was at school, we were riding in the car and I had an empty soda can in the cup holder. Jake said, “Mommy, give me the can so I can take off the pop top for Tanner… she will be so happy.”

It’s a difficult thing to manage… her needs versus his. How do you assure that she gets enough special treatment to make up for the medical treatments, teasing at school, missing out on social events and just feeling “different,” but not so much that it makes Jake feel like a second-class citizen? It’s just another element to the difficulty of having a child with a life threatening disease.

Tanner has had a somewhat difficult week or so. My “Mommy Radar” tells me something is going on and I am anxious to go into clinic on Wednesday for a counts check. She just doesn’t look good and her energy is not at its usual uncanny level. I actually took her to the pediatrician on Wednesday for a quick counts check, but all her levels were fine. There are a lot of kids at school sick with strep and some other viruses and I was worried about that. She looked pale and was complaining of shortness of breath and headache, both signs that her hemoglobin could be dropping. Thursday night, she came down with a stomach virus and was up all night vomiting. I thought surely she had strep, but she never got a fever or sore throat and was feeling better by Sunday. Now, tonight, she has a really bad stomachache that had me thinking we were headed to the ER. Tanner definitely knows what real pain is and she was showing me all those signs. I gave her a little painkiller and she has gone back to sleep, but all the same, I think I will sleep in her room tonight.

Even with all of this going on, we have managed to fit in lots of fun. Roller skating parties, gymnastics parties, S’mores with the neighbors, Gentry’s Pumpkin Farm, a Civil War reenactment battle, and so on and so on. It’s fall break and we’re headed to the zoo in the morning with friends for our last day of fun before school starts again.

I’m afraid on Wednesday that her counts will be so low, we’ll have to pull her out of school and other activities. It will be devastating to say the least.

It’s more than one mother or father can worry about some days. The kid who asks, “Why did I have to get cancer?” and the other who asks, “Why don’t I have cancer?” It’s a rock and a hard place for sure.

Love,
Beth

Lighting the Night with Joy

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October 8, 2010

Light the NIght 2009

Last year, at the Light the Night Walk, we pulled Tanner in a wagon, propped up on a pillow, and covered with a blanket. She was pale and weak and tired, but determined.

LIght the Night 2010Last night, as we crossed the parking lot at LP Field, John and I exchanged a meaningful glance as he took a video of our daughter, pulling that same wagon, loaded with chairs and posters, all the way to the tent. She was bright-eyed, pink cheeked and, as always, determined.

It was a beautiful night and our tent was overflowing with the love and support of the friends and family that came there to lift up our family. Jake came this year, which made the night complete. After all, the four of us all have cancer in one way or another.

We had the best time. Tanner had three good girlfriends there and they sang, danced and skipped their way through 1.75 miles of sparkling downtown Nashville. The kids had their faces painted by Titans cheerleaders, jumped in the inflatables and ooohed and ahhed at the fireworks that started right as we crossed the Shelby Street Bridge. Jake was fascinated with the lighted balloons and collected them from walkers as we went along.

How many squealing 7-year old girls can fit in a wagon?

It was the perfect ending to a perfect day. After I dropped the kids off at school that morning, I met my friend, Margaret, who had come all the way from New Jersey with her husband, Larry, to walk with us. We had coffee and shared stories, then I picked up both kids early from school and got them home and down for naps.

Then, I checked Team Tanner’s site.

I couldn’t breathe for a moment.

There had to be some mistake.

Just five hours earlier, when I had last checked the site, we had a little more than $15,000. More than I had ever dreamed and I was so grateful. At 2 pm we had $19,000… really.

I searched through the individual fund-raising pages to figure out where this much money had come from in such a short period of time. I began finding large donations from John’s coworkers at Franklin American Mortgage Company. As tears rolled down my cheeks, I called John to tell him to personally kiss all of them for me.

I checked the site again about 2 hours later… $21,000. More tears. Another call to John.

One final check before we got in the car to head to the walk… $24,132. My hands were shaking as I yelled out to John to look at the computer screen. Unbelievable. Nearly $10,000 in one day… we could probably fund a study just from the money raised by Team Tanner this year.

It is a dream of ours that no family ever have to go through this again. That no child ever have to sacrifice so much of their precious childhood to a disease so insidious that it would kill in a matter of weeks if left unchecked. A disease that hides in their little bodies for years, waiting for a weak moment so it can make it’s way back into their bloodstream. Last night went a long way towards realizing that dream. You all have helped us feel victorious when it is so easy to feel beaten down.

We are so grateful that there really are no words.

Love,
Beth, John, Tanner and Jake

P.S. The walk was such a beautiful celebration of the spirit with which children and adults fight for the right to keep living, to keep finding more and more joyous days.
But, I was reminded in one swift moment, how quickly cancer can end a celebration. I saw a friend whose son is 20 months out of treatment. She said they had been to clinic that day for his every 3-month blood check and his counts were still very low; they have never recovered from treatment. He is having a bone marrow biopsy today to determine whether the leukemia is back. Sobering and terrifying and I can’t stop thinking about them. Please pray that the leukemia leaves this little boy and his family alone so they can keep enjoying their lives.

Clinic Day #41

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October 6, 2010

Seems like I’ll never really understand counts. Tanner’s neutraphils were at 1,100 today, which is the low side of where they want them (1,000 to 1,500). But, her monocytes were very strong and they eventually become neutraphils, so they assumed she was about to go up to about 1,300. So they raised her chemo. Huh?

I’m going to be surprised if this little chemo bump doesn’t mean Tanner has to be pulled out of school for a month. Her counts do not recover quickly these days. It will be a devastating set back for her if it happens.

All her other counts looked great. Her hemoglobin and red counts have been very strong lately, which equals lots of energy and means she has been feeling pretty good.

The Tennessean ran a very cool article on Tanner’s lemonade stands today. Tanner took a copy into school to show her classmates. I’m hoping it results in more donations to Team Tanner. Click here to see a copy of the article LLS_Tennessean_Oct. 6

Light the Night is tomorrow night. We are ready!

Love,
Beth

Finally… Some Good News

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October 4, 2010

We’ve been anxiously awaiting the pathology report from my most recent surgery… and I mean anxiously. You see, we’ve gotten used to bad news… even come to expect it. I thought for sure, they were going to tell me my parathyroid glands were cancerous as well and we were going to have another surgery to take out those. Three surgeries in three months… I told John I was seriously going to cry if that happened… for the first time in a long time.

Today, we were pleasantly surprised! My pathology report was clear… no cancer at all in the right side of my thyroid… hallelujah! So, no more surgeries. I will go to the endocrinologist later this month to determine what the next steps are… maybe nothing… maybe radioactive iodine. But, we can handle that.

Score one for good news!

We had a fun weekend with the kids. Jake had a soccer game Saturday morning, then we took them to Toy Story on Ice. They had a ball. Then, Sunday, we took cupcakes to the sweet kids at church who had raised so much money for Team Tanner. I took the check from the church, along with some other checks people have given me, to the Leukemia and Lymphoma Society today. Our total, to date, is $14,491. Ah-mazing!

The Light the Night Walk is this Thursday. Tanner’s clinic day is Wednesday. Sucks, but it just seems to work out that way. She’ll be on steroids for the walk and for Moore Miles, her school fundraiser, the next day. Don’t know how many laps she’ll be able to run with the steroids and IV chemo in her, but I’m willing to bet she will surprise me… she always does.

I gave up trying to make them be serious for the picture!

This picture serves as a special thank you to everyone who sent in poptops for Tanner. We received several packages of poptops; Tanner and Jake are so excited by how many we now have. We’ll take them to church this week and put them in the jar for the Ronald McDonald House. Can’t imagine the extra burden of having to be away from home for this treatment. Thank God we live so close to Vanderbilt Children’s.

So much good news… feels so good.

Love,
Beth