Trick-or-Treat

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

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

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

Happy Halloween!

Tanner as Wednesday Addams

Tanner as Wednesday Addams

October 31, 2009 Did you hear about the parents who let their child go trick-or-treating on a cold night after just getting out of the hospital for a nine-day stay for pneumonia?!!! Oh, and she has leukemia, too!

It sounds so bad on paper, but it was really fun. If there is one thing I have learned from this whole experience it’s that you have to grab your moments when they present themselves for you never know when they will be taken from you. Apparently children know this piece of wisdom without being taught. Tanner seized the moment, for sure, tonight.

Tanner and John got home from the hospital today around 1:30 with chick-fil-a for everyone. We ate, Tanner’s stomach started to hurt from one of the antibiotics she is on, John and I spent 20 minutes trying to be sure we were administering her IV antibiotic correctly and she promptly fell asleep for several hours. That’s when the adults decided that caution would be prudent. That she might just be too tired to go out for Halloween tonight. That maybe we should do it the next night with a good night’s rest under our belt and one more day for her to recover. So, John runs all around the neighborhood asking the neighbors to save some candy for trick-or-treat on Sunday night. People were so sweet and willing to help.

Then, Tanner wakes up. No way was she trick-or-treating the night after Halloween! We warned her that the doctor said she had to wear a mask… that did not dissuade her at all. So we hustled up, ate some dinner, hurried into our costumes and met Tanner’s friend Olivia and her Mom, Jennifer, for some power trick-or-treating.

Jake, Olivia and Tanner

Jake, Olivia and Tanner

We brought the wagon because we didn’t think she would last long. She’s been in bed for 2 weeks, after all. But, as always, she surprised us with her determination. She probably made it to 15 or 20 houses before climbing the steps became too much for her and she started just stopping on the sidewalk and letting me go to the door to collect her candy. She eventually got into the wagon with a blanket around her and rode the rest of the way in great spirits.

I can just hear myself trying to explain our parenting skills to the doctors when she shows up with pneumonia again from being out in the cold (just kidding, they told us she could go). But, it was one of those moments where I realize that the stubbornness in her that has long driven me crazy as a parent is starting to serve her well. What had been just strong-willed obstinence as a toddler and preschooler is morphing into tenacity and perseverance as a kid. I was so proud of her.

IMG_1245She and Jake and Olivia had a ball. They looked so cute and got a LOT of candy. When we got home, Tanner said it had been one of her favorite Halloweens. She said, “This was a great night.”

I guess having so many things taken from you makes you really appreciate the things you get… or, in Tanner’s case, the things you reach out and grab with sheer determination and grit.

Happy Halloween!
Love,
Beth

P.S. If you see Jake, do NOT tell him he was a cute fireman. He was Billy Blaze from the Rescue Heroes, thank you very much!

Hopefully Our Last Night in the Hospital for a While

photoOctober 29, 2009 So close… so close… just one more night without fever and we can go home! Nine days is a long time and we are all ready for this to be over and so thankful that she has recovered so well.

She felt so much better today with no fever, not even a low-grade fever. We will come home with her port accessed and have to administer IV antibiotics 4 times a day as well as 2 oral antibiotics. They taught us today how to flush her line with saline and use heparin to assure the line stays clear. It’s not rocket science, but still a little unnerving. They’ll teach us tomorrow how to do the IV antibiotic infusion.

She got to dress up today in a costume that the hospital gave her and they handed out Halloween goody bags. The Predators were there and they had a Halloween party downstairs, but Tanner is confined to her room and couldn’t go to any of that. She has not left her room for the entire nine days except to go to a CT Scan. I know she must be sick of looking at those walls.

We had a fun day. In addition to dressing up in the costume, we made some Halloween decorations for the door, had Chik-fil-a brought in by my good friend Melissa, played Wii with the physical therapists and watched some good movies.

Kida from The Lost Island of Atlantis

Kida from The Lost Island of Atlantis

So, barring any unforeseen fevers, we should be home for Halloween… a small miracle and we’ll take it! Now, if we can just do something about the rainy forecast…

Love,
Beth

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….

Love,
Beth