Clinic Day #46

January 28, 2010

Clinic went pretty well today. She panicked at the LP as usual, but did resign herself to it in the end. She tucked her head under my chin, closed her eyes and said, “Night Night, Mommy” in a tiny little voice. Thank God there’s only one more.

Her counts were ideal at 1180. That means no increases in chemo, thankfully.

She has not felt well this afternoon. Her stomach is really upset. She finally fell asleep at 9 pm with a bucket next to her bed just in case. Still managed to go outside and play with the neighbor kids, though. I wanted to crawl into bed by 2 pm… I don’t understand how she does it.

Speaking of tired… I am.

Goodnight,
Beth

Alice in Wonderland

January 24, 2011

Tanner’s big day finally arrived. She had her stage debut at Rosie in Alice in Wonderland Jr. on Sunday. She did great and had such a good time. She just loves performing and is definitely in her element. It is such a cute show!

We had a whole row of people there to see her. Thanks to everyone for coming; it meant a lot to her.

If anyone still wants to see it, she’s performing Wednesday and Thursday nights at 7pm. The show runs about an hour and 10 minutes and you can buy tickets by calling the Boiler Room Theatre in the Factory in Franklin at 794-7744 (that’s my shameless plug for Act Too Players!). It really is a cute and campy version of Alice in Wonderland.

Next up… Sleeping Beauty. We decided not to do Annie after all. The schedule was very tough and, after much agonizing, we just decided she couldn’t handle it. Tanner actually seemed a little relieved and agreed that she might rather do Sleeping Beauty with Act Too. They just rehearse once a week, which frees her up to go back to dance lessons. She is doing hip-hop and ballet. Sadly, she had gotten very worried that she would get sick and miss an Annie rehearsal or, worse yet, the show. It was causing her visible anxiety.

Frankly, Tanner is experiencing a lot of anxiety right now, for one reason or another. I’m not sure whether she’s just so sick of all this or what, but we’ve started seeing the play therapist again and are hoping she’ll get some relief (and then John and Jake and I will get some relief!).

Daisy Mae joined our family officially on Saturday… she’s our official adopted dog and she’s doing great. The kids adore her… especially Jake.

Tanner has clinic Friday morning with the dreaded lumbar puncture with chemo. It is the worst time for this to fall… she is just so anxious to begin with. We haven’t even told her because we don’t want her to worry about it and ruin her two shows this week. It will bring a crashing halt to her elation from the shows, I fear. The childlife specialist at the clinic, Sara, is going to accompany us to the OR again to help distract Tanner and keep her from working herself up as much. She will be tired from doing two shows two nights in a row on school nights so I’m not hopeful about it turning out all that well. Sigh. HOWEVER, this is the second to last one. Only one more spinal after this (fondly known in leukemia world as the “final spinal”). Truly a landmark.

An update on little Alli who I wrote about last time — she has FINALLY come off the ventilator and is breathing on her own again, but not really out of the woods yet. She still has a ways to go to recover from this and keeps getting other infections in the process. I can’t imagine how excruciating this has been for her little body to endure and for her family to withstand. But… progress nonetheless for her!

Love,
Beth

Good News!

January 8, 2011

Dr. Mixan called with great news. Tanner tested positive for rhinovirus and enterovirus, both of which are very common respiratory/cold viruses! Hurray! She was able to go to Alice in Wonderland rehearsal last night and her first Annie rehearsal today… she’s in heaven.

She also never got a headache from the transfusion… amazing. None of the bad things that could have happened, did… that’s refreshing.

Love,
Beth

Update — Feeling Much Better!

January 6, 2011

Tanner woke up feeling A-Okay this morning! No neck pain or rash, but still coughing some. I kept her home from school just in case she was contagious, but throughout the day she became more and more animated and seemed like her normal feisty self by bedtime. Barring that nasty headache from the IgG transfusion rearing it’s ugly head, I see no reason she won’t be able to go back to school tomorrow and Alice in Wonderland rehearsal. Annie starts on Saturday!

No results yet on the virus panels… that will take another day or so. If she’s positive for either virus, we’ll probably have to go in for a counts check next week and cross our fingers that they haven’t dropped to a dangerous level.

Thanks, as always, for the good wishes and concern. I really does help to know we’re not in this alone.

Love,
Beth

Good News All Around

November 20, 2010

Friday was full of good news. First, I got my scan results… and they were clean!!! I should have posted last night, but I think I was just so relieved, I just wanted it to all go away and not even think about it anymore. They found remnant tissue around my thyroid, as they expected, but the radiation was doing its job in killing that. And, they didn’t see anything else… nothing!!! That’s what I like to hear. Now, to get back to life without all these interruptions.

Second, we found out Tanner got a role in Annie. She will be an orphan named Kate. Talk about one ecstatic child! She threw her arms up in the air and screamed as only a seven year old girl can. Rehearsals don’t start until January, but she’s been singing “Hard Knock Life” for days. Even Jake can belt out a resounding rendition of “Tomorrow” at this point.

Jake scrapping for the ball

Today, Jake had his end of season soccer party at CiCi’s pizza. He had a great team with really nice kids and parents so we had such a good time. The coach gave out trophies… you’ve never seen anyone more proud than Jake. He carried that trophy around half the afternoon with this big grin on his face. The pictures are on John’s phone, but I’ll post some next time. He really was adorable.

On a breakaway

I think it’s just sinking in for me that this latest health debacle is actually over. I think one of the side effects of becoming strong enough to handle what we’ve been through is that you also become a little numb to news – be it good, or bad. It’s like you just brace yourself for the worst and it’s difficult to believe it’s actually good news instead of bad. Even though my cancer has not been hard to deal with physically, it’s been hard on our family mentally. Just the disruption to our lives over and over and, for John and I, feeling like we were kicked when we already down. I just want to be able to move forward with some things, instead of always feeling like we’re treading water trying to keep from drowning. Swimming to shore and standing on dry ground would be a nice change.

Congratulations from a friend

Celebrations all around. Hurray for good news.

Love,
Beth

On Its Way Out

I think the radiation is definitely on its way out. I feel much better today after several days of mild malaise and fatigue. Even stopped by the house today to pick up Domino and take him for a walk. The walk was tiring, but it felt good to get moving and be outside. I think my friend Kim is going to come home to find a permanent indention in her new sofa in the shape of my heiney. I’ve read two books and watched countless movies and even gotten a few (a very few) things done.

Mostly, I miss my family. John and the kids seem to be doing great, but I know it is unsettling for the kids to keep having me drop out of sight while I recover from the surgeries or now while I am hiding my glow from them. Tanner still doesn’t know I have cancer, but I think she is smart enough to figure out that it’s somewhat serious and it makes her anxious. But, mostly I think they just miss their mommy… and I miss them. Still, I think John has really enjoyed his time with them.

I’ll come home Tuesday. Even though I can’t touch the kids more than 30 minutes cumulatively each day, I can at least be around them by then and I can help. And, I can get hugs, even if they’re quick. That will feel good.

I go back to Vanderbilt Thursday for a body scan to see how effective the treatment has been and determine if the cancer had spread anywhere outside the thyroid. If it had, the cancerous tissue would have absorbed the radioactive iodine and it would show up on the scan. I think I have to lie still for 1 ½ hours (can you say, “Nap?”).

I ended my low iodine diet today at dinner time. John and the kids did a “drive by” and brought me Jets pizza, some candy and a cake in the shape of a turkey that says, “Glow, Mama, Glow.” I laughed out loud. Jake was so cute bringing me the candy. He put it on the ground and backed away from me and said, “You’re done with your diet!!!!” Sweet thing. It killed me not to be able to give him a big hug.

Tanner has her Annie callback tomorrow night. She seems to have gotten over her cold and cough pretty much, so I think her voice is back in singing form. I wish I could go so badly, but I’ll just have to get a report from Daddy.

Thanks for all the well wishes. People have been so nice… as always.

Love,
Beth

All Aglow

November 12, 2010

I’m aglow… with radiation! I’m sitting on a plastic tablecloth on my BFF Kim’s couch watching the Today show. It’s like a vacation as long as I forget why I’m here. I don’t feel really bad, but I don’t feel good either. I feel like I’ve been poisoned… go figure.

I’m still on the low iodine diet through Sunday to ensure the radioactive iodine absorbs into any remaining thyroid tissue as well as possible. So, Beth is coming over to make us hamburgers with homemade French fries and homemade ketchup. Yum! How does a girl thank friends like these? The thing is, I knew that they would take care of me… it’s just what we do for each other.

John and the kids dropped by last night and rang the doorbell and drove off before I could answer (This is affectionately referred to as the “Ding Dong Ditch” in the South). They left funny gifts the kids had picked out… a reindeer antler headband and a “Do Not Disturb” eye mask! Too funny!

Yesterday was surreal, but a little anticlimactic. No hazmat suit for the lady who gave me my RAI pills (I feel ripped off), just gloves. But, the pills themselves came in a space age looking metal canister. When she opened it, the metal was 2 inches thick and there was a very small indentation inside with a small plastic vial in it. The pills were in that vial and I had to take them without touching them (apparently it’s okay to touch them with the inside of your body, but not the outside!). Then, after I took them, a guy came and measured me from one foot and three feet away with a radiation detector to determine how radioactive I was. Apparently, everyone is different depending upon body mass (this is the one time it would have paid to have been more overweight than I am). Then, they write your contact precautions based on those measurements.

So, no closer than three feet from someone for me and six feet for kids or pregnant women for at least three days, but our doctor suggested we go seven days for that precaution. Even after that, I’m not allowed to have direct contact with the kids for more than 30 minutes a day for the next 16 days. Bummer. I’m going to miss cuddling with my babies so bad. But, I can get out more than I thought. No reason I can’t run to the video store or grocery during off hours when there aren’t a lot of people.

I feel like I’ve hijacked this blog… it is called Tanner Time, after all. So, here’s how Tanner’s doing. She’s having a somewhat hard time handling this extra chemo load. I think we had gotten spoiled being on 50% chemo for so long and now she’s on 100%. She missed school Monday and Wednesday. She just didn’t feel good. And, she’s fighting some kind of cold. Jake had a mild case of croup this week and missed school, so it’s been a little nuts this week.

Tanner auditioned for an orphan role in Annie last weekend and did so well. She has a callback this Monday and is so excited. It was a leap of faith for John and I to even let her try out because the rehearsal schedule will probably be a little tiring, but we just felt like it was something she wanted so badly that it was worth it. I was so proud of her for doing so well at the audition; she had just had that big dose of chemo and was on steroids, but she still got up there and gave it her best. Hope her cold clears up by then.

I think if nothing else, I am gaining a new respect for Tanner’s resilience. She has pointed out to me several times over the last few weeks that I am just like her – I can’t eat what I want, I have to stay away from people and I have a yucky taste in my mouth that changes the way food tastes. And, now I feel bad like she must have so often over the last year-and-a-half. I’m having a mini-dose of her life. Wow. I respect her even more. She doesn’t complain often and now I realize she really could. I have to say if I woke up one morning and felt like this, I would call in sick to work, but I think she goes to school like this some days. Strong kid, that girl of mine.

Thanks for all the well wishes; I’m doing just fine.

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

Lighting the Night with Joy

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.