Childhood Cancer Awareness Month

September 7, 2010

Every time I sat down today to write a post, I felt scattered… pulled in lots of directions. Should I write about this… or that? I feel scattered for a really good reason – there are lots of exciting things going on.

September is Childhood Cancer Awareness month. Which means we are busy with activities designed to raise awareness and raise money to help end childhood cancer.

Did you know that research dollars designated for Childhood Cancer account for less than 2% of all cancer research dollars annually? This, despite the fact that gains made in treating children with cancer directly benefit adults (the opposite is not true). Chemotherapy was developed for children and tested first on children. When childhood cancer research is underfunded, not only do children suffer, but adults suffer.

Acute Lymphoblastic Leukemia (ALL) is the most common type of childhood cancer. It is the type that Tanner has, and thanks to those who have funded research in the past, and those who have participated in clinical trials, Tanner’s prognosis is good. In 1960, someone with ALL had an 10% chance of survival, today it’s 80%. Tanner’s chances are even better, thanks to the particular type of ALL she has and her individual risk factors.

Here’s the problem, though. The levels of chemo they give are as toxic as the kids can stand. They can’t just give more to make 80% become 100%. There’s no where to go. We need new therapies, hopefully kinder and quicker therapies.

So, we’re committing to everything that we possibly can this month. Any way we can help raise awareness or money, we’re doing it.

For example, Tanner is now officially a Rally Kid for the Rally Foundation for Childhood Cancer Research. Her picture and story appear on their web site at http://rallyfoundation.org/rallykids.php

It’s sobering to me to see her photo among all those stories of battling children. It seems a little too real. Tanner will also be a Rally Rock Princess (along with some other little girls with cancer) at the Rally Mania concert on September 26 at 5 pm at Carnton Plantation. The headliner is Eddie Money with special guest appearances from Kix Brooks, Jars of Clay, Ashley Cleveland, Jordan Pruitt from High School Musical, and many more. It’s a great place to bring a picnic and watch the concert. You can buy tickets at online at
http://www.ticketsnashville.com/WebSales/Pages/VenueListPage.aspx?rguid=7db8544a-97dd-4f7b-a007-60483427206c& or at the gate the day of.

Last year's Lemonade for Leukemia stand raised $259!

I’ll post in the coming days about other fun opportunities to help this month. But, I do want to dedicate a little space to our most important event of the month… Tanner’s lemonade sale tomorrow!!! Tanner and her friend, Corinne, will be holding a lemonade stand tomorrow from about 4 pm to 5:30 or 6 pm in Moore’s Landing subdivision off of Lewisburg Pike in Franklin. Come by if you’re in the area and buy some lemonade from the girls. They’re donating all the money to Team Tanner.

Speaking of Team Tanner… oh my gosh! It has been just 2 weeks and five days since I first posted about our efforts to raise money for the Leukemia and Lymphoma Society’s Light the Night Walk on October 7. Our goal is $10,000. To date, we have raised more than $7,000. Really. We are humbled beyond humble and can’t thank everyone enough for such a great start to our campaign. People have been so amazing. Even the kids at our church are planning a Light the Night walk of their own and getting pledges for Team Tanner. They’re also having a bake sale and Tanner is doing a lemonade stand between services. If you still want to donate go to http://pages.lightthenight.org/tn/MidTN10/TeamTanner

I always say if one good thing comes out of this whole mess, it’s a firm belief in the goodness of people.

Love,
Beth

P.S. I have shamelessly plagiarized my childhood cancer statistics and info from my friend, Larisa. She, obviously, is much better read than I. I know she won’t care if I plagiarize as long as it makes a difference. She has as much at stake as I do.

Speechless

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

Join Us for Light the Night 2010 on October 7

August 19, 2010

I have struggled with writing this post. Not because there is anything difficult about the topic, but because I want it to be perfect. I want it to be so inspiring that Team Tanner alone ends a little piece of cancer. But, after poring over cancer statistics, strategizing and waiting in vain for inspiration to hit me, I finally realized that this is simple.

This is me, the mother of a child with cancer, asking the people who love us to help us make sure this doesn’t happen to another family.

Last year, Team Tanner raised $8,200 for The Leukemia and Lymphoma Society’s Light the Night Walk. Friends and family gathered that night to carry illuminated red balloons in support of Tanner, who carried the white balloon of a survivor. We pulled her in a wagon because she was too weak to walk. Her little body had been injected with four kinds of chemo that day and she had spent the afternoon vomiting and sleeping. We left the decision to come up to her, and frankly, we discouraged her from coming because she was so sick. But, she was determined to see what it looked like when 3,000 people come together in support of those who are battling blood cancers and in honor of those who have lost the battle.

This year, we’re determined to raise even more money to fight blood cancers. To improve the prognosis for those who are not as lucky as Tanner, and to help find new treatments that are easier on patients and that don’t steal two to three years from someone’s life.

Our goal this year is $10,000. Tanner is planning lemonade stands (more on that when we get the details mapped out) and we’ll ask you all to help us with the rest.

Here’s how you can help:
1) Make a tax-deductible donation to Team Tanner by going to http://pages.lightthenight.org/tn/MidTN10/TeamTanner
2) Come walk with us. You can sign up on the Team Tanner site. It’s an easy, beautiful walk through downtown Nashville, across the Shelby Street Bridge and around the stadium.
3) Expand our reach by setting up your own fund-raising page on Team Tanner’s site and send emails to your friends, family or co-workers and ask them to help us stop blood cancers. Go to the Team Tanner site and it will create a page for you.

As parents of a child with leukemia, John and I come across many ways to help end cancer, especially for kids. These are all such worthwhile causes, but we feel strongly that we need to concentrate our efforts in one place. We have chosen the Leukemia and Lymphoma Society, which last year funded more than $71 million in research, contributing to advances in chemotherapy, bone marrow and stem cell transplantation and to the development of new drugs that are affecting patient survival and quality of life. Light the Night walks around the country raised $39 million last year. Talk about giving cancer a swift kick in the butt!!! We’re proud to be part of this event and are hopeful to make a major contribution.

Tanner is determined to “win” this year. Last year, our team raised the second highest amount for any non-corporate team in the Middle Tennessee area. Tanner would like to be #1 this year… that’s my husband’s daughter all right!

Can you help?

Love,
Beth

Why Me?

August 15, 2010

I’m struggling a little today with “why me?” Why does it feel like just when we’re getting our feet back under us, something else comes along to wash away the very ground under us? Why do we keep having to scrabble back up to dry land? Why should one family have so much to deal with at once?

It’s not that I don’t believe it could be worse… I know it could. But, it could certainly be a lot better, too. Can I get an Amen?

My extended family is at the beach this week. It’s an every-other-year trip that I really look forward to. My parents, brothers, nieces, sister-in-law, aunt, and significant others and the Pages all rent a big house in Santa Rosa for a week in August. Except this year we can’t go. Tanner can’t swim in the ocean and the chemo makes her extra sensitive to the sun, so us going would have been an exercise in frustration.

I love the beach. There is something about that breeze that comes off the water, the salty smell, the sound of the surf hitting the sand… it all makes me feel like I somewhere so far away from home that none of my problems can follow me there. I found myself this morning crying because I knew that even if we had been able to go there this year, our problems would have still followed us. No amount of fresh salt air could have washed away Tanner’s cancer, much less mine. It couldn’t have washed away the year behind or the year to come.

So, I’m stuck in “why me?” land. But, I find that when I ask that question, more good things come to mind than bad.

Why me? What did I do to deserve such an awesome husband? One who puts us before himself every day. One who is unfailingly thoughtful. One who is there like a rock, no matter how bad it gets.

Why me? Why did I get such sweet, funny, spunky, creative, bright, energetic, happy children? One who is brave beyond her years and one who makes his mama smile even on her worst days.

Why me? Who has friends and family like we do? The kind that send a gift card to Panera, or flowers, or a meal, or a pair of flip flops for my tired feet. The kind that just show up when you need them, no matter what time. What a blessing.

Why me? Why did I get the most successfully treatable cancer there is? Why didn’t I get something scarier, like breast cancer? For that matter, why didn’t Tanner get AML instead of ALL? Or be 15 instead of 5 when she was diagnosed? Or be a boy instead of a girl? There are so many ways we have been blessed within our difficulties.

“Why me?” can be a pity party or a revelation. It depends upon how I choose to look at it.
I choose the latter.

I choose this life. The one I have right now with these people in it. With all the surgeries, the hospitals, the doctors, the pills, the cancers, the fear of what may come… I still choose it. This is my life with my family and friends and the good things will still outweigh the bad… if I let them.

Love,
Beth

This Never Ending Week

August 13, 2010

An important note before you read this post: The news in this post would be very disturbing to Tanner if she knew about it, so I know I can count on you all to keep it on the down low when she is around. She has more than most seven-year-olds to deal with and doesn’t need anything else to be worried about.

I’m eating Key Lime Pie… a big piece. There is nothing else to do at the end of a week like this.

First, the IVig transfusion on Monday, the headache reaction to it on Wednesday, the crazy ativan/LP/runaway saga and then Thursday I get a call from my doctor’s office at 4:20 pm, just 2 hours before the girls are supposed to show up at my house for bunco, telling me that I have thyroid cancer.

I’m not kidding.

Despite the fact that the fine needle aspiration and the initial pathology during the surgery showed no cancer, the nodule had some very slow growing, early stage cancer cells.

So, back to the OR next month to have the other half of my thyroid removed. At this point, they do not think that I will need radiation or anything other than surgical removal. And, they have no reason to even think that the other half is cancerous as well, but I do have a very small nodule on the remaining side and it makes sense to just get rid of it.

Lollipop cancer compared to Tanner’s version. I have no right to complain, really. We caught it very early, thanks to my awesome Internal Med doc, and we’re just going to move forward and do what needs to be done.

Enough about me, this blog is about Tanner. She did get to go to the first day of school, but didn’t make it all day. She got very overheated at recess and couldn’t cool off. I picked her up and after an hour or so, she felt better and I took her back for the last hour. She started her five-day-steroid pulse Wednesday night and they upped her dose because she had gained some weight. It is very easy for John and I to see the effects of the increase. She is acting on day 2 like she usually does on day 4. She was a little out of it this morning and cried some for no reason. We just decided to only send her for the morning and come get her before lunch. But, Tanner wanted to stay for lunch because “I think they are having popcorn chicken.” Too funny. It was a good decision. She is definitely having a harder time than normal with this pulse. She may or may not make it on Monday. It’s her last day of the pulse and the increased dose may wipe her out. It’s sad to me that her first week of school is being marred by the steroids.

I think I also forgot to mention in my last post about the crazy ativan reaction how high Tanner’s counts were – 5,540!!! Holy Moly. We haven’t seen counts like that in a long time. They aren’t sure why they are so high, although she has been coughing some in the morning lately, so it could be a virus. She is still on the 50% chemo dosage and they didn’t change it, but we have to go back in two weeks for a counts check. If they are still above 1,500, they will raise her chemo again.

It’s been a tough week, and I think it will probably be a tough couple of months until the second surgery is over and they get the thyroid medication I will need adjusted properly to keep me consistent. But, we will make it… like we always do.

Love,
Beth

Laughter is the best medicine

P.S. Thanks to my bunco girls who kept me laughing on a night I could have definitely had a pity party. Pity Parties are lonely, but laughing with girlfriends is priceless. And, to my husband who is my rock.

Clinic Day #38 – What a Day

August 11, 2010

I had such high hopes for Ativan easing Tanner through the LP today, but it did not turn out the way I had hoped at all.

The day started at about 2 am when Tanner woke with a nasty headache. I gave her some painkiller and she went back to sleep, but woke at 6 am screaming and clutching her head. I had a moment when I was right back to the night of her bactrim reaction; screaming and clutching her head was the last thing she did before going unconscious. I had to fight the impulse to throw her in the car and race to the hospital. But, then I remembered Cari saying something about headache being a possible side effect of the IVig transfusion. The on-call doctor confirmed my suspicions and told us to give her a full dose of oxycodone. If that wasn’t enough, they could give her morphine in the clinic.

Poor Tanner spent all morning with a horrible headache and nauseated. She slept in the car on the way to clinic with a trash can in her lap, and I carried her into the hospital. But, she started to feel a little better… until we gave her the ativan. Oh my.

So, ativan is an anti-anxiety med that has the added benefit of easing nausea as well. It seemed like the perfect choice to use for the LP. We have given it to Tanner before in a pill form and she did great on it. Just knocked the edge off of her. Apparently, the IV version works a little too well on her.

First, I noticed slurring and stumbling. Then, the silliness started. And, finally, the agitation and complete lack of impulse control set in.

By the time we got to the pre-op waiting area, she was just as silly as she could be. When I went up to register her, I noticed someone running… fast… out of the corner of my eye. I turned and it was… Tanner. She was bolting, running from a surgery she desperately did not want to have. She looked crazily gleeful, but turned panic-stricken and terrified when I caught her and tried to get her to let the nice lady put an armband on her. I knew when I heard the woman calling for help for the “child having an anxiety attack” in the lobby, that we were in trouble.

Usually, John and I do LP together. We both like to be there. But, today, John stayed home with Jake and I was solo, which made running down my little runaway, bogged down with a computer bag, purse and a bum neck, darn near impossible. We ended up putting me in a wheelchair with a vice grip around Tanner in my lap as the nurse pushed us to the pre-op area. She was totally disconnected from reality.

Sadly, being disconnected from reality didn’t change the way it all came down in the end. It happened the way it always does, no matter what we do. At the very end, she yelled, “Is that the sleepy milk?” and begged me to hold onto her and not leave her. So pitiful.

The doctors and nurses and I convened afterwards and just decided to give up on the anti-anxiety approach and just go straight at it from now on. If we have to hold her down, so be it; it’s what we end up doing anyway despite all efforts otherwise. They said she is smart enough to figure out every way we try to disguise it.

After she fell asleep in my arms on the table, I laid her down and kissed her and reminded myself that we just have four more of these before August 6, 2011. Just four more.

All the agitation was gone after she woke up from surgery. In fact, when I went to recovery she had the nurses totally cracking up because she was talking a mile-a-minute and being really funny. It took that damn ativan until about 4 pm to really wear off. Never again.

The good news is that she didn’t get sick from the methotrexate injected into her spine this time. She still has the headache though; it hasn’t gone away yet.

Tomorrow is the first day of school. Earlier today, it seemed impossible to think she would make it, but as always, Tanner’s will astounds me. We spent the last half hour before bed packing up her backpack, sharpening pencils and painting her fingernails. She’s ready.

In the retelling, today’s story seemed somewhat funny, but as is most often the case, it didn’t seem that way at the time. It occurred to me this afternoon, that the only difference between today and every other day Tanner has had an LP is that she didn’t have any impulse control today. The impulse to run away must be there every single time for her. Today, she was able to indulge herself and run wildly through the lobby, trying to escape a disease she never asked to get and a fate I would never wish upon anyone, much less a seven-year-old.

Love,
Beth

Girl Time

August 3, 2010

Tanner at Lookout Mountain

We miss Jake… we do. It’s so quiet and calm and girly around here. But, there’s something nice about it, too. It’s a little more grown up and less chaotic, and Tanner and I are soaking up our time together. Jake is in heaven at my parents’ house where they bought him his own set of golf clubs and take him to the golf course every day to hit balls on the range. Dad said he hit seventy-five balls the other night!

It has been so cute to watch Jake and Tanner miss each other these last few days. I forget how much time they have spent over the past year and, despite normal sibling squabbling, how close they are. Jake told my Mom and Dad that Tanner was his “fweind… and my sister.” And, today when we skyped him, he said, “when I get home I am going to give you a motorcycle… a purple one!”

Then, today, at quiet time, Tanner took a little create-a-book kit and wrote him a whole book that told him she loves him and that he is “the best brother” and he is going to be a race car driver when he grows up. It is adorable and something I will keep for him for the rest of his life.

I’m feeling stronger and better every day. I’m still turning my whole body to look to the right or left, but I’m driving and not in real pain anymore.

Yesterday, Tanner and I went to buy all her school supplies then laid on the sofa and watched movies. Today, we went to the movies with friends, had lunch out with Aunt Kim and bought some sneakers at the mall. After a rest at home, we did a late afternoon swim at the neighborhood pool (I sat, she swam) and ran into some friends. Tomorrow, Tanner has requested to go to Sweet and Sassy for a pedicure, but we may have to settle for a manicure. She has an open cut on her toe and soaking in one of those tubs might not be the best idea germ-wise.

She’s been feeling pretty good these days. Some sporadic stomach upset, but lots of energy and no leg pain. That will all change next week. Wednesday is dreaded Lumbar Puncture day. We are switching clinic days from Thursday to Wednesday to follow our doctor. Wednesday she will get her Vincristine through her port, start her five-day pulse of steroids and get methotrexate injected into her spinal column. She has already started worrying about it and is asking every day how many days until then. The next morning after all this chemo, she will have her first day of school. Yeah… it sucks, but what are you going to do? Hopefully, we can be proactive with the anti-nausea medicine this time and she won’t get so sick. I just think it seems unfair that it should be such a joy for her to be able to be there for the first day of school this year after missing the first seven months of school last year, but she may feel like crap and it will be ruined by this rotten disease… again. This, in a nutshell, is cancer… unfair on so many levels.

Jake comes home on Thursday with my parents who will stay a few days (Happy Anniversary tomorrow, Mom and Dad!) to help out before they go back home. Last chance for all things girly tomorrow…

Love,
Beth

No More

August 1, 2010

I spent most of today alone in the house, resting. John took Tanner and John to Chattanooga, where he met my parents and handed Jake off for a couple of days of special Grandmom and Grandad time. He and Tanner then went to Lookout Mountain and did Rock City. They had a ball and came home very tired. But, we all miss our little man already.

As I was resting on the sofa watching movies, I was feeling a little sorry for myself. Oddly, because I feel pretty good, but my neck is still too sore for me to stay up very long without it starting to hurt; it feels much better when it is resting against a pillow or the sofa. But, because I feel good, I’m a little stir crazy and tired of looking at the inside of our house.

I found myself thinking, how many more days until I can get back to my normal routine? And, then I thought, how many times must Tanner have felt this way? How many times must she ask herself, “How many more days until I can get back to being normal?” How many more times will she have to go to clinic? How many more times will she have to let them put that needle in her chest? How many more times must she be terrified she won’t wake up from the sleepy milk? How many more times will she skip dinner on Friday night because of her Thursday night dose of methotrexate? How many more fun things must she miss because her counts are low? More, more, more…

How long must this journey feel to her? I can’t imagine. I know how long it feels to me and I’m only sitting on the sidelines. Five days of neck pain has inspired me to feel sorry for myself. What would fourteen months of chemo do to me?

I’m going to try to remind myself how I feel today the next time I ask Tanner to suck it up and just take her chemo without complaining. She has every right to be sick of this. And, I’m going to stop telling her, just one more year. It’s not an inspiring comment.

Love,
Beth

All Went Very Well

July 29, 2010

Back home from surgery. Went so well, I didn’t even have to stay all night. I’m feeling better than I thought I would, but still tired and in some pain.

Domino faithfully by my side, stealing all my bed space.

God Bless Vanderbilt Hospital. We often wondered if the adult hospital was a wonderful as the Children’s hospital… it is. And Dr. Netterville, the director of head and neck center, who did my surgery, is awesome.

Thanks, as always, to all our wonderful friends and family who rally round when we need them. Love you all.

Love,
Beth

A Quick Update

July 27, 2010

Jake hid in the garage during the shaving cream fight

Sorry it’s been a while since I last posted. A few of you… ahem… (you know who you are) have gently reminded me I have been slacking a little. As my friend Ashley said, though, when I don’t post for a while, it usually means everything is great.

It is. Great, I mean. We’ve been busy enjoying the end of summer before school starts in a few weeks. I’m having that thyroid surgery tomorrow, so summer is pretty much over for me and I’ve been trying to squeeze in the last little bit of time with the kids before I’m out of commission for a little while.

So, here’s the short story about the last week or so: We had water day in the cul-de-sac… slip n’ slide, water balloons, shaving cream fights, etc. We’ve checked a few items off our family summer fun wish list like making homemade ice cream and swimming at night with the lights on in the pool. Tanner’s in dance camp this week which will culminate in a show that neither John nor I will be able to see, but Aunt Beth and E. and Jake will attend. And, other fun summer stuff like bike riding, swimming and throwing rocks in the creek.

So, surgery for me in the early a.m. and I probably won’t post for a few days until I can be sure that my posts will be coherent (pain meds and public forums do not mix). We are, as always, well taken care of by our family and friends. Our support network is nothing, if not efficient, by now.

Wish me luck.

Love,
Beth