Clinic Day #34 — By the Hair of Our Chinny, Chin, Chin

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June 10, 2010

As we feared, counts today were not good. Her neutraphils were at 650, which is, of course, neutrapenic. The methotrexate that made her so sick last week was doing it’s job a little too well, apparently. Tanner could tell by the look on my face when I was talking with the doctor that things were not good and began to cry saying, “Can I go? Can I go? Please, please… I have to go.” Mercifully, the doctor felt there was little additional risk in letting her do the show tomorrow since she has been with these kids all week and it’s summer time when all the respiratory stuff isn’t floating around. Thank you, God.

So, as nerve wracking as it will be for John and I to let her go with such low counts, the show must go on. Then, we will hunker down until next week and see what happens with her counts. They adjusted all her oral chemo back to 50% and we will start the process of bumping her up towards 100% all over again once her counts recover. Her red counts were fine, hence all the energy.

She was really tired this afternoon, but had trouble going to sleep – I think she’s just so excited. We’ll take lots of photos and video and post them tomorrow so you can see the star in action.

I jammed my big toe today in a stumble not worth discussing and have a swollen and painful foot that has put a little hitch in my getalong. Suffice it to say, we will be a laid back group this weekend.

Thank God for the Whitler’s pool, which will be a safe place for us to spend some time next week. Tanner actually has a full clinic visit next Thursday, even though it’s been only three weeks since the last one, because we got off schedule due to the end of school. They don’t hold Vincristine for low counts (it doesn’t really lower counts), so she’ll have that and start her steroids. Steroids, although they sometimes raise counts, actually compromise the immune system, so it may not be a very good couple of weeks ahead. We may be missing Vacation Bible School.

But, we are soooooooo grateful she will get to perform tomorrow. That’s the main thing. Thanks for all the good thoughts and prayers. They worked.

Love,
Beth

The Drama Queen

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June 9, 2010

Jake and I picked Tanner up Monday afternoon from her first day of theater camp to find the most fired up 6-year-old you have ever seen. She was singing her newly learned songs to me before we even got into the car, glancing at her lyrics notebook to remind herself of the words. She was, in a word, aglow.

I told John that I night that I believe I had witnessed Tanner find her place in the world that day. All of her unbridled and emotional enthusiasm fit right into the world of song and dance, and I believe I will be driving her to play rehearsals for the next decade or so.

She is really proud of herself for getting a solo that she had to audition for and win from some other kids her age. She is singing “I hope I get it” from A Chorus Line. It is pretty hilarious to watch a very earnest, almost-seven-year-old sing, “I really need this job; I hope I get this job.”

She’s in camp all this week with a performance on Friday. She cannot wait for that performance. She keeps asking me how many days until Friday. It will be interesting to see if she gets stage fright.

Tomorrow, Jake, E. (John’s Mom) and I will pick her up from camp and head to the hospital for a counts check. They want to be sure the newly upped methotrexate dose isn’t making her counts drop more than they want it to. I’m terrified that her counts will have tanked and she won’t be able to do the show on Friday. It would be, to say the least, devastating. So, please pray, light candles, send up positive karma into the universe. She wants this so badly.

We’re also counting down the days to Domino, who is coming to his new forever home on June 23. We have his new bed all ready in the living room, filled with toys, chews, and a collar and leash. We’ve had so much fun getting ready for him to join the family. Cancer took our sweet border collie from us last year, and cancer kept us from getting a new dog for the nine months since then. But, now, we’re almost finished waiting to get back what cancer took, and we are giddy with excitement.

Good counts, good counts, good counts… there isn’t enough money in the world for the therapy she will need if she doesn’t get to sing and dance her little heart out on Friday.

Love,
Beth

TGIF

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June 4, 2010

Tanner’s just not feeling very well. It’s like this most recent round of chemo is affecting her more than it usually does. Through all the first 6 months of horrible chemo she received, she threw up only twice, now she has thrown up twice in one week and has needed anti-nausea meds every day. Weird.

She’s also been really hot, which I assume is caused by the steroids. She will complain about not being able to cool off and will actually feel really hot to the touch, but has no fever. Like hot flashes, I guess.

I did a little research on the Leukemia and Lymphoma Society discussion boards. I go there especially when I have a side effect I want to know more about. Doctors are only so helpful about side effects. They’re more concerned (as they should be) with the effectiveness of all these drugs and whether they’re actually killing the leukemia. Mommas are the ones who worry about side effects and the LLS discussion boards are where they talk about them. Turns out it’s not uncommon for kids to begin having more side effects as maintenance goes along. The theory is that the toxicity of the chemo over the long-term just builds up in their little bodies and they become too tired to fight them off. Many mothers of boys (who do an extra year of chemo) talked about how sick and fatigued their boys were the third year of chemo. So sad.

All this feeling bad hasn’t really stopped us from having some fun, though. Yesterday, after waking up sick, Tanner rebounded and, within an hour, we went to the pool. Kids are amazing. We haven’t played outside as much as usual; the heat was too much for her. But, the steroids are wearing off and we’ll be back to scootering and biking in no time, I’m sure.

Wednesday, we went to see our favorite singer, Roger Day, at the Spring Hill library. It was, as always, lots of fun. Tanner and Jake got a seat up front and Roger worked Tanner’s name into a couple of songs, which tickled her. They got signed t-shirts and we went home with a new copy of a CD we misplaced during the move. We’ve been singing, “As a matter of fact, Jack, I like Yaks! We like YAKS!” in the car ever since.

When we were in line waiting to get into the room where Roger was going to perform, Tanner started talking to a Mom in front of us. She said, “I have cancer, well leukemia, and Roger Day came to our house and had a concert with my friends.” The look on that’s Mom’s face was priceless. Tanner was so matter-of-fact about it the woman never said a thing to her about having cancer, she just looked startled for a moment and kept talking. Lol

Today, more pool time and then we need to go sing Happy Birthday to Aunt Kim. Happy birthday Kimmie! Next week, Tanner has theater camp all week. I’m hoping it will be the perfect outlet for my little drama queen.

Love,
Beth

The Best Thing About Cancer

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June 1, 2010

Tanner and Jake donating change to the Children's Hospital

We’ve been accompanied on our last two clinic visits by a small camera crew that is following Tanner for a fundraising video for the Children’s Hospital. This time, just Ms. Donna came with us, with her video camera, to chronicle Tanner getting her port accessed, receiving her chemo in the infusion room, and waiting in the pre-op area for her lumbar puncture. Last time, Tanner sat with Ms. Donna and her crew for about 10 or 15 minutes and answered questions about what it’s like to have leukemia. During these questions, Ms. Donna asked Tanner what was the worst thing about having cancer. Tanner answered, “Missing school and doing things with my friends.” Then, she asked a question I wasn’t sure a six-year-old could answer. She asked what was the best thing about having cancer. Tanner thought for a minute, puzzled by such a strange question, and replied, “There’s really nothing good about it.” I was really proud of her for not feeling pressured to come up with an “acceptable” answer and for just answering honestly.

But, the question stuck with me and I found myself wondering how I would answer it, if she had asked me. For a moment I felt just like Tanner… there’s nothing good about it. But, I thought a little more and suddenly it hit me… the best thing about having cancer is the unbelievable kindness of people. I literally never knew people could be so kind… really.

Take today for example. Tanner got an email from her “animal friends,” and squealed with delight. We even wrote an email back to the cat to tell him how to make his hurt ear feel better. Charlene has been sending photos and letters from cats, dogs, horses, goats, turkeys and even a bee for a solid year. She even made a book of the letters for Tanner to keep. Tanner still doesn’t know who they come from (shhhhh!) and it’s like magic to her.

Then, I got a call from a friend whose daughter is going to forgo birthday presents for donations to the Children’s Hospital. We’re trying to work out something cool where maybe the party attendees bring toys for the Childlife Center in the infusion room. Too cool.

Then, I got an email from one of Tanner’s Make-A-Wish volunteer coordinators. She is running a half-marathon for Team in Training to benefit the Leukemia and Lymphoma Society and wanted to know if she could run in Tanner’s honor. She is the second of Tanner’s two Wish Coordinators to do this. As if they don’t do enough

Then, John came home from work and brought me a gift from my secret pal. This sweet woman has been sending me gifts for almost a year now, just every so often, to let me know that someone’s thinking about me. They are always such thoughtful things designed to make me feel pampered. Today, a bracelet with a little charm on it that says, “Mom” and a little heart for each of the kids. I love it, just like I’ve loved the flip flops, the key chain, the monogrammed bags, etc. The card said she has truly enjoyed being my secret pal… that’s the kind of person I’m talking about here. Wow.

This is just one day’s kindness. Other days, there are little gifts, cards of encouragement, supportive comments to the blog, babysitting, and countless other acts of generosity. There are also the quiet behind the scenes things like the great friends who make this blog possible by hosting it on their site and doing all the technical stuff I don’t understand. Then, there are indescribable things like the friend who has loaned Tanner his St. Christopher medal he wore in Vietnam so she will be protected like he was. How do you thank someone for that?

These things mean more to us than their face value. It’s not the gift or the gesture itself that is so important… it’s the support, the friendship, the hope, the love that they bring that make them so instrumental to surviving this ordeal.

So, if Ms. Donna were to ask me what is the best thing about my daughter having cancer, I would say it’s all of YOU.

Thank you for everything you have done, and continue to do, to make this journey bearable.

Love,
Beth

P.S. Happy Birthday to Tanner’s port, which was put in one year ago today. We sang to it tonight.

One Year

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May 30, 2010

One year ago today, at about 5:30 pm, I stood in the Vanderbilt Children’s Hospital ER and asked a young, nervous resident, “Are you trying to tell me my daughter has leukemia?”

When he nodded, solemnly in response, I distinctly remember taking a step back from Tanner’s gurney, so she couldn’t see my face as I fought to comprehend how a sudden backache in the middle of the night could turn out to be leukemia… couldn’t see me crumple in disbelief… couldn’t watch my eyes grow wide in horror as I bent over at the waist and pushed a scream back into my mouth before it could make a telltale sound.

I was alone with Tanner at the ER. John was home with Jake, and my friend Beth, who had come so quickly when I called, was on her way back to our house to trade places with John so he could come to the hospital.

I called John and told him to come quickly, but didn’t tell him why. No one should drive with that kind of news rattling around in his head. When he got there, I took him out into the hallway and told him what the doctor had said and we held each other and cried.

The next two days were a whirlwind of false hopes that it could be something else followed by a deafening silence when the bone marrow biopsy results were definitive. This was it… our daughter had cancer.

It’s hard to believe it’s been a year since that day. It’s trite to say, but it really only seems like yesterday. My memory is now organized by the things that happened before May 30, 2009, and the things that have happened since. They feel strangely like two different lives.

It’s not a day I want to celebrate… this diagnosaversary, as some call it… but it’s too big to let pass without mention and without reflection. It changed our lives, mostly for the worse, but admittedly some for the better. We now know the incredible strength of our daughter and the unending and unexpected kindnesses of those we know and of those we don’t.

Tanner is asleep on the sofa as I write this, having given in to the affects of the high-dose steroids she takes, her new hair curling softly around her peaceful face, her chest rising and falling slowly. I am struck with the fact that she is alive… not just a little, but a lot alive. She is thriving and growing and having fun, despite it all.

She had made it through one year, and she will make it through another and then just 67 more days after that, she will take her last dose of chemo. She will just stop, wherever she is in her monthly chemo cycle, on August 6, 2011. She will be eight years old. And, we will work hard to make all of this a distant memory and to use what we have learned from it to make our lives even better than it could have been BC (before cancer).

One down and one to go. Go get ‘em Baby.

Love,
Beth

Feeling Better

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May 28, 2010

Tanner slept for 13 ½ hours last night. She woke once for zofran for nausea and once for oxycodone for generally feeling crappy, but awoke this morning feeling pretty good and stayed that way all day. All the same, we slowed it down today. Ran errands in the morning and hung around here in the afternoon, painting and making up Star Wars plays. We ventured outside for about 10 minutes before it rained on us and forced us back inside, which was A-okay. I think some rest was a good idea.

So far so good with the steroids… she usually doesn’t feel bad until about day 3, although generally we’ll see some mood swings and emotional behavior on day two, which will be tomorrow. They’ve upped her chemo again; her counts were at 1700, which is still too high, so they added one pill to her weekly five-pill dose of methotrexate. That puts her at 100% dosage for both 6MP and methotrexate, which is the goal. I don’t expect her to have boatloads of energy or feel particularly well while adjusting to the change, though. Methotrexate seems to have a greater effect on her than the 6MP; in fact, it’s what made her so sick yesterday. Hopefully, she’ll adjust and be feeling good in time for theater camp.

Tanner had strawberries today for the first time in a very long time. She rolled them in whipped cream after dinner tonight and talked about eating strawberries and whipped cream all morning long tomorrow. Sometimes it’s the small things that matter the most.

John and I sat tonight looking at old videos of Tanner and Jake when they were really little. Tanner was so articulate at such a young age that hers are really funny, because you can really understand all the nonsense she is spouting. We laughed and laughed at some of the things she did and then I saw Millie, our beloved and deceased border collie in one of the videos and teared up. Well, once I started I kept on. I sat watching a video of Tanner being hugged by Pluto in Disney world. She is not quite three in the video and has the most beautiful, long blond hair. I found myself crying with my hand over my mouth trying to hold it in. She was so happy and sweet and innocent. John looked at me, puzzled. I just said, “You hope for so much for them when they’re little like that. We just would have never dreamed she would end up with cancer.”

I think, in retrospect, what I was crying about was the innocence of our family at that time. We had so much fun on that trip and we had no reason to ever believe anything but the best would happen for us. Every parent’s worst fear is that something awful will happen to their child. But, for us at that time, and for most people, it is a distant and improbable thought. I think once the improbable becomes reality, you lose an innocence you once had as a parent. Instead, you wake every day thinking that that “awful thing” that once seemed distant, now looms omnipresent in your life. Any day could be THE day, and anything is possible.

Some days, I only think about it for a fleeting moment. Like today, when we were at Sam’s Club eating lunch and Tanner got up to go get some napkins. I watched her as she walked away from our sanitized table and saw her, ever so briefly, drag her hand across another table as she walked by. In that moment, I thought, “Oh please, don’t touch your mouth, please.” Because that germ on that table could be the one her body won’t be able to fight. She didn’t touch her face, and when she returned to our table, I gave her some hand sanitizer and the moment was gone.

Both John and I went through a time when we were mad about that loss of innocence. Mad that we could no longer just send in a donation when we got those St. Jude’s mailing labels and not think about it again until next year. I now see too many children suffering and it is on my mind much of the time. We’re no longer mad about it; we’ve accepted it. But still, it sucks all the same.

I’d give anything to go back to the way I felt at that moment in Disney, but I know I won’t. I know I’ll never look at things the same way, though I look forward to a time when I won’t have to contemplate my child’s life on a daily basis.

Love,
Beth

Clinic Day #33

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May 27, 2010

Some clinic days go well, others don’t. Today… not so much. It was Tanner’s once every three months lumbar puncture where they take spinal fluid to test for leukemia cells and inject chemo (methotrexate) into her spinal column. This is because the Central Nervous System (CNS) protects itself from the chemo injected into her blood stream or taken orally. Therefore, leukemia cells hide in the CNS like devious little monsters and come out when the coast is clear. Injecting chemo directly into the spinal column kills them where they live and, hopefully, prevents the leukemia from coming back. Having CNS leukemia is a serious thing that necessitates some pretty serious “super chemo.”

Tanner hates having the lumbar puncture. It’s not the LP itself, but the fact that she has to be put to sleep that bothers her. It’s the only thing through all of this that she really has a big problem with. She worries about it for days ahead of time and today was one of our worst experiences. She broke down in the pre-op room and held the end of her access line refusing to let them give her Versed to calm her down. We ended up getting them to put a longer line on her port and they hid behind her while they injected her line with propofol so she didn’t know it was coming. Right before she went out, she looked at me with panic in her eyes and said, “It that the sleepy milk?” She could feel it going into her port.

It’s so sad. There’s no reasoning with her about it. I think it’s the place she has chosen to put her anxiety about all of this. She is brave about having her port accessed, about getting chemo, about all kinds of other things, but this is where she harbors the anxiety she swallows from all of it. Thankfully, it’s only once every three months, but next time, we will give her anxiety meds before we leave the house… it seems like the kind thing to do.

She usually wakes up from the propofol pretty well, but didn’t today for some reason. She couldn’t wake up and didn’t feel well. In the car on the way home, she got pretty sick. I assume maybe the methotrexate LP did it. It usually doesn’t make her sick, but IV methotrexate does. Poor thing.

So, not such a good day. Hopefully, she’ll feel better tomorrow. We start steroids tonight… just more fun.

Ughhhh.

Love,
Beth

Summer Break

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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

Our Last Night

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May 14, 2010

We went our separate ways today. We were all planning on returning to the Magic Kingdom to hit all the attractions we couldn’t get to on Tuesday, but I had a feeling that Jake needed a break. So, I asked him this morning, “Jake, would you rather go to Magic Kingdom and ride the Buzz Lightyear ride or go to the pool?” As I suspected, the pool won out. There’s only so much overstimulation a three-year-old can take, particularly one who likes to toodle around as much as he likes a big event.

Tanner, on the other hand, never gets enough overstimulation… bring it on! So, she and John went to Magic Kingdom and Jake and I played around the pool, took a walk on the nature trail, chased some lizards, scared a turtle and, generally, just took it easy. He took a big nap and will be ready for our last day tomorrow at Animal Kingdom!

Tanner and John blew it out at Magic Kingdom. Without Jake and I to weigh them down and with the trusty Wish Button at hand, they tore up the park at lightening speed and returned home in the late afternoon, happy and sated.

As always in the Village, there was a party this evening… a Pirates and Princess party. So, we ate dinner, got faces painted and tattoos sprayed on at the spa and headed over to the pool for a great time. All the kids got to go on stage and be presented as Pirates or Princesses to the crowd and there were some hilarious pirates leading the dancing and fun, not to mention characters from Sea World. Amazing!

So, we’re sad it’s our last night… really sad. This has been such a respite to the drill that is cancer treatment and when we get back, chemo will come back, too. Back to the hospital, to the poking and steroids and… yuck! But, we will have these memories to hold us up for a while. And we can look at the pictures and talk about all the fun we had and thank Tanner for taking us all to Disney for a week… on her.

Tomorrow, we’ll check out and head to Animal Kingdom for our last day of fun. When we leave the park, we’ll head home and get as far down the road as we can before we have to stop for the night. We are welcome back here in the Village anytime we wish – but as day visitors, not overnight guests. And, I think we will come back again, to remember and to continue to thank those who make this gift possible.

Love,
Beth

The Magic of Being Special

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May 13, 2010

John suggested two titles for my post today:

1) Is there anything a Superhero cannot fix?
2) Have you ever been put to bed by a six-foot rabbit?

It’s a good day when you can come up with two humdingers like that!

We started out this morning tired… very tired. Jake was coughing… a lot. And, Tanner was definitely not her peppy self. We decided we would just go to Universal, stay for a couple of hours and come home. When we got there, we discovered that Universal is no Disney World. You walk a long way to get into the park and the workers didn’t seem nearly as kind or customer service oriented. The kids were comatose, just going through the motions.

Then, as we were walking through Super Hero Island, some loud music came blaring out of the speakers and Superheros came riding down the street on three-wheelers. Jake and Tanner were mesmerized and we got in line, immediately, to get autographs and pictures. No heading to the front of the line here, we just waited with everyone else, hot and tired… bummer.

Then, Captain America noticed Tanner’s button and asked her a few questions and pointed her in the direction of… Andy… the true Superhero of the day. Andy pulled us aside and escorted us to a quiet, shaded spot where after about five minutes, we were treated to our own private superhero meet and greet!!!! Hurray! We were special again and the kids were enthralled. The Superheros were so kind to the kids and spent so much time with them. We will be forever grateful.

That moment turned the day around. Everyone perked up, we spent some quality time with the Dr. Suess characters as well, rode some rides, saw a Sinbad show, ate a little lunch and headed home in time for naps.

After dinner, the Village turned into Winter Wonderland! There were Christmas decorations everywhere, horse and carriage rides, Santa Claus, a Christmas parade and even snow from a snow machine. Unbelievable! Tanner and her new friend Maddy, raced around dancing with the parade characters and decorated some Christmas cookies while Jake and I chased a reindeer around and played in the fake snow.

We hustled the kids home for bed, who were indignant that we cut the party a little short for them. But, we had a special surprise… Ms. Merry, the wife of the Mayor Clayton of Give Kids the World Village (and a six-foot rabbit) came to tuck the kids in and put them to bed. They were enchanted. She led them to bed, pulled up the covers, checked under the bed for monsters and turned out the lights. Of course, after she left, John and I spent a good half-hour trying to get them calm enough to go to sleep!

Here’s the thing about being here. It’s not just the amusement parks or this amazingly fun village or anything else that there is to do here. It’s how special the kids feel. How after so many months of sacrifice, disappointment and pain, they feel magically, wonderfully special. That is the magic of this trip and we will be forever grateful to all the volunteers and employees of Make-A-Wish, Give Kids the World Village and the theme parks for making our kids have one shining, magical week in the midst of this hardship.

Love,
Beth