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

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

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

One Down, One to Go

August 9, 2010

A little IV pole never stopped anyone from playing legos

All finished with the IVig transfusion. It didn’t take as long as we expected. Apparently, the first time they give the infusion, they have to do it slowly in case the child has a reaction. But, the next time, they can infuse faster since they know she didn’t have a reaction last time. So, it was a shorter visit than we expected, which was a great surprise.

Still, we were there for about three hours, but actually had a pretty good time. The kids were so into playing legos that they didn’t want to leave. They also had a good time with Guy Gilchrist, the man who draws the Nancy cartoon from the newspaper. He was at clinic teaching kids to draw. He also drew the Muppets cartoon for years and taught Tanner to draw Kermit. He was funny and entertaining and helped pass the time.

Tomorrow is Tanner’s last day of summer vacation. Wednesday, she goes to clinic and Thursday is the first day of school. We’re going to see a movie in the morning, registering for school in the afternoon and then, hopefully, swimming with friends.

Wednesday morning is the dreaded lumbar puncture. Tanner is very worried about it. We’re going to give her ativan in the morning, an anti-anxiety medication, and hope that helps her get through it with the minimum amount of trauma. Please pray for her. It’s wrong for a child to have to worry so much about something.

Love,
Beth

Right Day, Wrong Year

August 6, 2010

It’s August 6 and I know I should be grateful that Tanner’s made it through 14 months of chemo and only has one year left, but I can’t help wishing it was August 6, 2011. Today marks exactly one year left of chemo treatment. Even Tanner didn’t know exactly how to feel about this.

John brought home a cake that said… “Go Tanner! One more year!” Tanner was happy for the cake, but at bedtime I asked her how she felt when I said that one year from today, she would stop chemo. “A little sad,” she said. “A year is a really long time.” See, “one more year” is not very inspiring. (see my “No More” post from last week)

So, we had a small celebration, not a huge one, and we’ll keep on keeping on.

Jake came home yesterday! Hurray for my little man being home! My parents brought him back and stayed the night and we spent the morning watching shows the kids did in the basement before they left to return home and get ready for some more grandchildren to show up at their house next week.

Tanner has some kind of weird cold virus that she is apparently fighting pretty well. She sounds lousy when she wakes up in the morning, but seems fine during the day and then feels a little bad again at bedtime.

We go in on Monday for another IVIg transfusion. IVIg is an immunoglobin transfusion that provides antibodies to help bolster her immune system. She had one back in February and it helped so much. She was catching one respiratory virus/infection after another and then once she had the transfusions, stayed pretty healthy the rest of the school year. I asked the doctor to check again before school started and, sure enough, her levels were even lower this time. Just didn’t think that was the best way to start the school year. She’s caught her fair share of colds/coughs/strep this summer and I think the infusion will help. It takes about three hours so we opted not to tack it on to her clinic day on Wednesday, since she is having her spinal that day and it is already a long day. So, transfusion Monday, clinic day Wednesday, first day of school Thursday. Busy week.

We’re going to let this day pass somewhat quietly… it’s the wrong year. August 6, 2011 though, look out. The celebration will be completely out of control.

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

Summer Break

May 24, 2010

Seems like Tanner just got back to school and now it’s already over for the year. I think she had just settled in; she was really sad for it to end. She did really well, though. She managed to keep up even though she missed so much, thanks to Mrs. O’Hara and Mrs. Franklin. We are so thankful she is able to continue going to Moore; they take really good care of her there.

So, summer’s here! We’ve started with a bang! We had a birthday party on Saturday and some friends over last night and played outside almost all weekend long. Tanner feels great, mostly because she has “skipped” a dose of Vincristine and a pulse of steroids she should have had last week. Her monthly clinic visit fell on the second to last day of school… the day of their class party. Dr. Mixon was nice enough to let us move it back a week, so this Thursday, she’ll get Vincristine in her port, start her five-day steroid pulse and have a lumbar puncture with a methotrexate injection. That ought to stop her from feeling so good… sigh.

This morning, she and Jake and I started the day by going to see the new Shrek movie at 9:45… we were the only ones in the theater! Tanner danced down front after the movie was over and we had a great time. Tomorrow – swimming in the neighborhood pool… brrrrrrrr. And, Wednesday… a slip n’ slide party in the yard.

We’re going to make a list of all the things we want to do this summer… camping in the back yard, a firefly party, trip to the zoo, etc., and make sure we do them. Grab life while you can, you never know what might happen to change it.

Today, Tanner I wrote this story on the computer. I wrote the first four sentences and she wrote the last two:

Once there was a little girl named Tanner. She was blonde with beautiful, big blue eyes that looked as if they were reflecting the ocean. She was strong and brave and faced the most difficult things with grace beyond her years. She was a hero, but she didn’t know it. And she fought leukemia she had to take cemo and starods. And before you new it she was fighting it like a champ.

Happy Monday.

Love,
Beth

A Wet Weekend and a Beautiful Monday

May 3, 2010

Goodness… I feel like I’ve lived a year in the last four days. As I am sure you have seen in the news, it is very wet here in Nashville. Thankfully, the flood held off Friday night for the Spring Fling at Tanner’s school. It was a beautiful evening. Spring Fling is a carnival-type event with a dunk tank, face painting, hula hooping, a firetruck, etc., etc., etc. Tanner and Jake ran and ran and ran and had the best time. Friday night is not usually the best night for Tanner… most times she doesn’t even eat dinner. She lasted all through Spring Fling, but paid for it when she got home. She didn’t feel good at all and couldn’t go to sleep until 9:30. I think it was worth it, though.

Saturday, we planned to stay close to home and rest up. Little did we know, we wouldn’t really have a choice. Yikes!!! Water water everywhere and all the boards did shrink!!! I have never seen it rain so hard for so long. The creek behind our house became a raging river of rapids within a couple of hours. The tornado sirens went off several times that day and night, but thankfully, nothing touched down. Sunday, more rain, more togetherness at the Page house. We got out in the afternoon to go to the grocery store and drove by Tanner’s school. The Harpeth River runs behind it and it had completely flooded the playground. Teenagers were swimming in the water and playing on the playground – ewwwwww!

That's Tanner's school playground in the background

We were very lucky nothing in our immediate area was flooded. Others were not so fortunate. Suffice it to say, it continues to be a mess here and many people have lost their homes.

This morning, I woke on a mission to save Tanner’s Make a Wish send-off party from the flood. Our volunteer Wish Coordinators, Erin and Erin, were so awesome, as was the Glow Galaxy for donating an awesome party. I began calling, emailing, googling Tanner’s classmates this morning to be sure we would have enough kids. No need to worry. They turned out in droves and we had a great time.

The party was a surprise for Tanner. I sent out invitations to the parents and asked them not to tell the kids until they were on their way to the party so we could keep it a secret. I told Tanner we were meeting a friend at Glow Galaxy for open play and John went early to gather all the kids and get them ready to yell, “Surprise!” And, yell they did! Tanner was a bit overwhelmed and Jake hid behind my leg, but everyone got over it quickly and had such a great time.

When we got in the car to go home, Tanner said, “Mom, when I asked you why we were having the party, I didn’t hear what you said; it was too noisy.” No kidding. She went the whole party and had no idea why we were there. I asked her what she thought could be the reason and she said, “Because I have leukemia, I guess.” Close enough.

Tanner on the Glow in the Dark Dance floor

At the party, we got our itinerary for our Disney trip this Sunday. Now, we’re officially excited. Tanner couldn’t stop asking me questions at bedtime. We’re ready.

Thank you so much to Make A Wish. There will never be a way to repay them for what they have done for Tanner and for all of us.

Here’s hoping you’re dry wherever you are.

Love,
Beth