Light The Night – join Team Tanner
Light the Night – Join Team Tanner
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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!
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.
The Runaways
August 4, 2010
We’ve officially run away. With no planning and little preparation. A spontaneous getaway to the faraway land of… Huntsville, Alabama! Just an hour and a half down the road, but it feels like a million miles away from cancer and sickness and impending surgeries.
John and had planned what we thought was a pretty spontaneous day trip to Huntsville last Friday night. I had seen an article in a magazine saying there was a cool Star Wars exhibit at the space museum and thought the kids would love it. After putting the kids to bed, we talked about getting up and jumping on the road early so we could get there and beat the crowds. About an hour later, Jake started throwing up. End of trip.
He had a nasty stomach virus, which put him pretty much out of commission for about three days, but he was fine to go to his first day of school on Tuesday. He was so cute. So proud of how “handsome” he looked in his new shirt (turns out another little boy in his class wore the same shirt that day!). So excited to carry his Lightening McQueen backpack and his Star Wars lunch box. He marched into his class and showed his teacher his new stuff and was smiling from ear to ear when I left. That’s my boy!
We had kept Tanner completely separated from Jake for the course of his virus. John and Tanner did all kinds of fun stuff and Jake and I hung around the house. We thought we had escaped Tanner getting it… until Tuesday night. She started throwing up at 8 pm and I was not far behind. Uggghhh. Let’s just say the girls did not fare as well as Jake did. It was awful! John stayed home from work all day Wednesday to care for Tanner, Jake and I and to liberally apply hand sanitizer and Lysol to avoid catching it himself. What a long week.
Sometime during the week – the particular day has faded from my memory – Jake also passed another milestone… he learned to ride his bike without training wheels. I took them off and after giving him a little push, he just rode away. No teaching, no hunching over and running behind the bike holding the seat… he just rode away and that was that. His balance is uncanny at three-and-a-half years old. Oh, did I mention he was wearing a batman cape at the time? Crazy.
So, today, I woke up and took Domino for a walk at a new park in Franklin that was once a horse farm. It’s about 56 acres of rolling green hills and dilapidated old barns. Just beautiful. It was cool and breezy and both of us came back rejuvenated. When I got home, John and the kids were headed out the door to go to downtown Franklin for frozen yogurt. I sat down on the sofa to check email and noticed that same magazine with the article about Huntsville. Suddenly, it seemed like the best idea in the world to run away for a night. Everyone was healthy for the moment, Tanner’s counts were good, it’s a short trip away from Vanderbilt… the stars were aligned. I called John on the phone and pitched the idea… he was in. I got the kids next door to take care of the dog, we threw some stuff in bags and we were out the door in an hour. It felt like we had escaped.
We arrived in Huntsville this afternoon and met my Aunt Debbie at the botanical gardens, which were beautiful and very fun. They had 12 tree houses throughout the gardens the kids could play on and scarecrows all over that had been decorated by local businesses. Super fun! Then, we checked into the hotel and went out to Huntsville’s awesome outdoor mall for pizza and a carousel ride. Back to the hotel and everyone’s in bed. Off to the Star Wars exhibit in the morning and then back home. Priceless.
This is the best way for us to do a vacation. Our best laid plans often end up in bitter disappointment and there are so many limitations. We just grabbed the opportunity because we could, and it has saved me from feeling like the beast had gotten the best of me.
Love,
Beth
Clinic Day #39 — Just a Counts Check
August 25, 2010
Jake and I picked up Tanner early from school today so we could go to clinic for a counts check. We loaded her in the car, slapped some EMLA (numbing cream) on her port, and headed to Sonic for some ice cream and to give the EMLA time to do it’s job.
Her counts were still very high, as we expected they would be. They were 4,700. They’ve upped her 6MP and methotrexate dosage to nearly 75% and we’ll see what happens in two more weeks.
Clinic was very quiet, so the kids spread out with legos and Barbies while we waited. We played a new paper electric guitar with Sara, the childlife specialist, danced in infusion room and generally got a little crazy. It is amazing how like family these people who care for your child will become. It is actually possible to have fun while we are there for such serious business. I had to promise Jake we would come back soon so we could leave.
Believe it or not, we are already past the half-way mark to our goal of $10,000 for Tanner’s Light the Night team… you have no idea how we are humbled by this outpouring of support for our family.
Love,
Beth
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
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
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
First Day of School… Made It!
August 12, 2010
Tanner woke up headache free and made it to her first day of school! Amazing!!! She looked so cute and made sure that I knew she didn’t want me to walk her into school. “Just drop me off at the door, Mom… I want to go in by myself.” Look out second grade!!!
Love,
Beth
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