Clinic Day #53 — Counts Check

April 28, 2011

Okay, so yesterday was clinic day; I just got too tired to write about it. John took Tanner to clinic yesterday morning to give me a little break from the hospital scene. I wish we could give Tanner a break from it, but guess that’s not possible. Her neutraphil count was up quite a bit, at 2,200, but the steroids she had just come off of will artificially inflate neutraphils, so it’s hard to say what it will be once it comes back down, but Dr. Mixan felt good about it in general so we don’t have to go back for two more weeks.

John broke the news about Cari not being Tanner’s nurse any more in the car on the way there. She was very sad, but handled it as well as we could hope.

Hunting Easter Eggs is exhausting!

I’ve had a bit of a break this week. Jake is at my parents’ house and is coming home tomorrow. It’s given me three days by myself in the house for the whole time Tanner is at school. I really needed a little time to regroup and get some things done. It’s been nice to just go at a project without worrying about picking Jake up from school or being interrupted 1,000 times. Thanks to my parents for taking him; he’s having a ball playing golf and being spoiled. Nice for him to get a little break from the stress of our house as well. I miss him though, and am ready for him to come home.

Tanner and I went to a champagne toast at Flemings on Monday for the LLS Man and Woman of the Year Campaign. She didn’t really feel super as it was the last day of her 5-day steroid pulse, but we gamely went out and bought new dresses and headed downtown. I’ve been so proud of her at all these events; she’s really risen to the occasion and showed a lot of grace and poise at what have been very adult events. I think she understands how important this commitment is (and it doesn’t hurt that I’ve bought her a new dress for almost every event!).

People sometimes make the comment to me, “I don’t know how you all do it.” And, most of the time, I respond by saying, “You just put one foot in front of the other,” which is true. I mean, really, what choice do you have, really? But, I was reminded at the MWOY event the other night, that you really are carried through this journey by great friends, family and even people you don’t know who support you and love you through it.

There are 13 candidates for Man and Woman of the Year. Some of them have a personal connection to blood cancer and know first-hand how important it is to find a cure. Some are just caring people who have recognized a great cause and are giving enough of their time and energy to agree to take it on. Either way, they are supporting us and all the other families who have, unwillingly, embarked on the road to beating a blood cancer. Their commitment is an inspiration to me; it makes me realize we are not alone. There are lots of people who care and who recognize that this disease needs to be eradicated before it affects even one more family. To say we appreciate what they are doing is an understatement; frankly I don’t really know to thank them properly.

We spent Easter with our church family... and then John's family

Tanner has been feeling really good lately. The reduced chemo level she is on because of her low counts last month is evident. She’s only on 50% dosage at this point. Although I love that she’s feeling so good, it makes me nervous for her to just be on 50%. I assume if her levels are good next visit, they’ll raise her up to 75%. We’re delaying her next chemo a week to accommodate her Sleeping Beauty shows. She would have had chemo two days before her first show and been on steroids for all three shows. Dr. Mixan was nice enough to let us delay a week until the show is over and school is out so she won’t miss any of the end of school fun.

Speaking of Sleeping Beauty, if you want tickets but haven’t gotten them yet, you can order them by calling the Boilerroom Theatre at 794-7744.

Love,
Beth

Clinic Day #45

January 4, 2011

Refreshing to write 2011 on the date line. Nice to enter the actual year that chemo will end for Tanner.

Sorry for not updating for so long. We’ve just been living… like normal people, you know?

Here are the highlights:

A White Christmas in Tennessee

– Christmas was wonderful and relaxed. We stayed right here and enjoyed the snow with John’s family. It was beautiful and peaceful and magical… just the way Christmas should be.
– The children’s Christmas Eve service at church was perfectly imperfect, as always. The kids get to pick a costume to wear and come forward as their part is read about in the reading of the Christmas story. Tanner was an Angel… Jake, after much deliberation and protestation, was a shepherd. Beth and Glenn came home with us and we ate Stromboli and exchanged gifts.
– My parents were planning on coming to our house the day after Christmas, but got snowed out. So, that Wednesday, after clinic, the kids and I piled in the car and headed to their house for “Christmas” with Grandmom and Grandad. We left John at home for a much needed bit of alone, downtime.
– We’ve spent lots of time online and at shelters looking for a new family dog. We’ve found one great candidate, but we’re continuing to look to be sure we’re finding just the right one. If you know anyone who can’t keep their medium to large sized, housebroken, kid-friendly dog, send them our way!

Tanner’s clinic visit last week held very good news… her counts had come down to 1,600 (from 3,700) on their own so we did not have to raise her chemo over 100%! Huge sigh of relief. No one wants their kid to be the one that needs more than 100% dosage to keep counts down. We were terrified that going over 100% would crash her counts and keep her from being able to do Alice in Wonderland and Annie over the next couple of weeks. That would have devastated her.

That was the good part of clinic. The not-so-good part was that they raised her steroid level slightly because she had gained some weight. She normally takes 5 pills per day for 5 days; they raised it to 5 ½ pills per day. As evidence of how unbelievably potent the steroids are, she reacted as if they had doubled her level. She was crazy emotional, tired, would eat like crazy all day only to feel too nauseated to eat at dinner, and now has been having extreme neck and jaw pain for the past three days. We thought the pain might be from the Vincristine (IV chemo), which can cause jaw and face pain. But, today her left cheek swelled slightly, but noticeably, so we think she might have some kind of infection, maybe a salivary gland. She’s also been coughing a lot. After talking with Tanner’s doctor today, we agreed to come in to clinic tomorrow if it isn’t any better. If she develops a fever, we will have to go to the emergency room tonight.

Please send good thoughts for Tanner’s health during these next few months. She will be so crushed if she has to miss either of her plays. Allowing her to participate in Annie, which has a fairly intensive rehearsal schedule, was such a leap of faith for us. We wanted to say no, but knew she really needed us to say yes. Hopefully, her body will cooperate.

Also, please keep in your prayers little two-year-old Alli. She was diagnosed with high risk pre-b ALL (Tanner is low risk) at the end of October and has spent more time in the hospital than out. She is currently in the hospital with a cold, very low counts and a intestinal infection.

Love,
Beth

I Come Home, Tanner Goes to the Hospital

November 17, 2010

As I was on my knees fastidiously de-radiating my friend, Kim’s house so I could go home to my family, John and Tanner were on their way to the hospital with a fever. The cough she had been fighting all week finally peaked and she was up to 102 degrees. John was able to skip the ER and go straight to clinic (much faster). Fortunately, her fever came down and her counts were high enough that they were able to come home after an IV round of Rocefin (a broad-range antibiotic).

She took a big nap yesterday afternoon, but was feeling fine by bedtime, despite some coughing during the night. We kept her home from school today, but we all went in for her Thanksgiving play and Thanksgiving lunch (I didn’t stay for lunch as I am still not clear to use regular non-throwaway utensils). The play was cute and she is feeling fine. I think she will be able to return to school tomorrow.

The bumped up chemo has done it’s job. Her neutraphils were at 1,150, which is about perfect for maintenance. Her hemoglobin and platelets, however, are holding strong, which is all great. Hopefully, they won’t drop any more and she can just stay at this perfect spot.

While she and John were at the hospital, they met some Titans – Mark Mariani (L) and Robert Johnson (R) – who were visiting kids in the infusion room. Tanner looks like a little sapling between two mighty oaks, huh?

I’m feeling just fine… a little tiny bit fatigued, but otherwise back to my normal self. I can be around the kids, but can’t touch them much. No more than 30 minutes of contact a day until the day after Thanksgiving. I get quick hugs to try to sustain me.

John’s Mom is on duty and has been a great help. She’ll get Jake to school tomorrow while I go into Vanderbilt for my body scan. This should tell us whether the cancer had spread anywhere beyond the thyroid. I have to lie still for an hour-and-a-half. Let’s hope I can listen to an ipod… otherwise it’s going to be a very long scan. Maybe I’ll nod off…

Speaking of nodding off…

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

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

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

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

1 Day to Domino

June 22, 2010

Tomorrow is Domino Day… long awaited and much anticipated. Tanner was so excited, she couldn’t go to sleep tonight (the steroids didn’t help, either!) and I find myself in the same position. We’ve been on a 10-day countdown on the chalkboard in the kitchen, and today the kids and I washed down our dog crate to get ready for the big day. John and I will go to the prison tomorrow to meet the inmates that trained Domino and bring him home. The kids made thank you notes for them today. Jake put Star Wars stickers all over them and Tanner made cut out stars. We hope they will let the inmates have them so they can remember what a good thing they have done for a little girl with leukemia and her family.

The kids have been at Vacation Bible School for the past few days. They are having such a good time. I’ve helped with crafts those two days as well and really had fun. Tomorrow is water fun day at VBS, so they are going to have a double-great day, between that and the dog.

We had a great weekend, too. Tanner has been on steroids and feeling some of the effects of the Vincristine, but she accepts it so well now and we know to just move on and it will get better. She can’t really take the heat (and it’s HOT here!) so water activities or indoor activities are the best bet. Saturday, when I came back from running errands, John, Tanner, Jake and four neighborhood kids were in the backyard on our new playground sliding down the slide into the baby pool at the bottom. They were having too much fun! It’s the simple things, right?

Sunday, we gave John a day off for Father’s Day… no simple task, I promise you. I had to practically run my poor workaholic husband out of the house for some much needed R&R. While he was gone, the kids and I went to the grocery store to buy ingredients for seafood gumbo, his favorite food. He came back at dinner time to posters on the door, made by the kids, a balloon, cards and gumbo. Happy man.

I have to tell you about something that happened on Friday that strengthened my belief in Tanner’s vast resolve and determination. She had chemo, if you remember, on Thursday at clinic – Vincristine through her port. Then, Thursday night’s medication concoction – 6mp (chemo), methotrexate (chemo), neurontin (for neuropathy), mepron (antibiotic to prevent pneumonia), amoxicillin (antibiotic for strep throat), Claritin (for allergies), dexamethasone (steroids), pepsid and zofran (for nausea). Good grief! I expected her to be down for the count on Friday. She woke up a little groggy, but after running some errands in the morning, we headed to the YMCA pool for a swim. We got there and Tanner decided she wanted to take the swim test that would allow her to go down the slides and climb the rock wall.

“Today?” I said. “Why don’t we do it another day?”

“No, I want to do it now,” she said.

The lifeguard showed her what she had to do and my chemo-ridden child jumped in the pool and swam the length without stopping or touching the bottom and pulled herself out on the side. The lifeguard and Jake and I cheered her on from the side, following her as she swam down the pool. She looked, at the end, as if she might give up, but stuck it out. I couldn’t have been prouder. I looked at the lifeguard with disbelief and said, “She has cancer and had a boatload of chemo yesterday.” He bent down and told her “Way to go!”

We were putting on sunscreen later and I told her how proud of her I was. Of course, I teared up. Tanner’s response… “Thank goodness you didn’t do that in front of the lifeguard.” Cue eye rolling.

So, we’ve had fun despite the low counts and the steroids and chemo. It beats the alternative, right?

On a more sobering note, please pray for the family (including the twin) of a little girl named Ellie, whose poor cancer-ravaged lungs will not last much longer. Her mother, just days ago, was blogging how she was not ready to give up on a miracle and was still encouraging Ellie to fight. Today, I read where this same mother has not only had to accept the inevitable for her daughter, but has courageously swallowed her own grief to try to help her daughter accept her fate as well. Imagine trying to assure an 8-year-old that it is all right to die now. Cancer is heartless.

Love,
Beth