Monthly Archives: May 2010

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

HUGE Day!!!

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May 12, 2010

Wow! Three little letters to cover such a big, big day! We started with pony rides and complementary cowboy hats and ended with dancing, swimming and a magic show by the Village pool and splash park.

The day started kind of shaky. We went to pony rides and then Tanner said she had to go to the bathroom and threw up while we were in there. I was sure she was developing some kind of stomach virus and that our trip was officially over, but we headed back to the Villa to wait it out and see how she did. It’s not unheard of for Tanner to be sick from chemo and the concoction of other drugs she takes, but it’s not common either. Fortunately, that seemed to be the case, and 45 minutes later, we were on our way to Disney Hollywood.

Awesome stunt from the car and motorcycle show

We met up with Meredith and her parents, Bo and Sara, at Disney Hollywood and had a ball. Jake was in heaven. First, we got to meet some Power Rangers, then the kids got their faces painted and Jake looked like Flash Gordon, then we saw the car and motorcycle stunt show! Race cars, motorcycles and fire!!! Woo hoo! Every boy’s dream.

... and Jake's reaction to the awesome car stunt!!!

Tanner and Meredith had a ball, too. They got to see a High School Musical show and were chosen to dance with the dancers in the parade.

Beauties and the Beast

Again, we were treated like royalty. The fun thing today, though, was that Jake thought it was him that was getting us in to all the rides and shows first. One worker made a mistake and directed all her attention to him instead of Tanner and we all let him have his shining moment. He has also started showing his Wish Button at the entrance gate to the Village and saying, “I got you guys in!” with a huge grin on his little face. In reality, Tanner has the special Wish button that gets us everything, but we’re all wearing smaller wish buttons and we all have special stickers for the Disney Parks that let the workers know we’re with a Wish Kid. It’s amazing how kind they all are. They even let Meredith and her family come to the front of the line with us.

Tanner is feeling better today and coughing much less. I think we’re coming to the end of the virus, so maybe John and I will be able to relax and enjoy ourselves a little more. It’s been pretty unnerving to figure out how far to let her go and how much rest to force. Every time she would have a big coughing spasm, we would give each other a knowing look… the one that says, “This could be bad.”

Tanner and Meredith busting a move in the parade

Spending the day with Meredith let me know how much less stamina Tanner has than a normal kid. There was a parade at Disney Hollywood this afternoon and John and Bo went to get food for us all while the kids and Sara and I claimed a spot to watch the parade. It was hot sitting on the sidewalk and by the time the food came, no one really wanted it too much. When the parade ended, Tanner came to me crying and said she wanted to go home. We carried her (and Jake, who had not had a nap) back to the car. I think the heat really affected her, because after a rest and some food in the cool air conditioning in the Villa, she was ready to go again. But, Meredith and her family stayed at the park, I assume for hours.

We ended the day with a swim in the awesome pool and splash park at the Village. We ate dinner by the pool and then there was a pool party. Sponge Bob was there and Tanner danced and danced, while Jake swam and swam. We came home tired and ready for a good night’s rest.

We’re off to Universal Studios tomorrow. Home of Spiderman (need I say more?), Dr. Seuss and Shrek. Lots of shows and rides. Tomorrow night is Winter Wonderland at the Village… Santa Claus!!!

Love,
Beth

The Magic in the Magic Kingdom

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May 11, 2010

Walt Disney, I could kiss you… and all the wonderful people who work in your unbelievable wonderland of fun.

We started out the day in the Village with autographs and photos of Boots from Dora the Explorer, then made the trek to the Magic Kingdom for one awesome day. Tanner’s coughing is still bad, but still no fevers. She clearly didn’t feel herself this morning, though. She was determined to be there, but not her usual animated self. I began thinking we were losing the battle and was wondering what the children’s hospital here would be like. But, a visit with the princesses and fairies really perked her up and she actually seemed somewhat better this afternoon.

Can I just tell you what being able to go to the front of the line at Disney means to us? I know many of you who have been to Disney are salivating at that concept, but I finally fully understood today why this privilege is extended to Wish kids. It’s not just because they deserve it (which they, of course, do), but because most could not do Disney without it. We were able to ride and do probably four times the amount of stuff today than we would have if we had to wait. And, Tanner wouldn’t have lasted otherwise. Just standing in the lines is too much for her over time. By skipping the lines, we spend most of our time sitting on rides and riding in the stroller and she is able to last long enough for us to have a good time. It’s essential… and really cool!

Jake experiencing the wonder of It's a Small World

She gets the total royal treatment. When we went to see the princesses, we were escorted by the nicest lady, through the exit line into the princess room where the princesses spent tons of time doting on my girl. They had real conversations and Tanner was fully wrapped in magic. Jake, on the other hand, wanted nothing to do with those princesses, but was pretty smitten with Tinkerbell. After the princesses, the lady took us next door to see the fairies, too. Wow! Talk about feeling special.

We left at just the right time, before everyone was completely exhausted, and after some rest, went to dinner in the Village. Tanner and Jake got to make pillows with a pillow machine and we found Tanner’s star, which she decorated last night, mysteriously placed on the ceiling overnight by the star fairy. There are thousands of gold stars on the ceiling of the Castle of Miracles in the Village… both and inspiring and a sobering sight. Makes you wonder why so many kids need to face life threatening illnesses.

We skipped Village Idol night (an American Idol spin-off) because Tanner was coughing non-stop and we wanted to get her in bed on time. Tanner will forever believe that event was canceled… she would never forgive us.

Her coughing appears to be a virus… one which Jake unfortunately seems to be catching. But, tomorrow marks seven days of coughing, so hopefully, we are on the down side of hers. If she had pneumonia or something else, she would have had a fever by now. They both had a virus like this over the winter, and it passed uneventfully.

So, tomorrow we’re starting with some pony rides in the Village. Then, it’s off to Disney Hollywood – High School Musical, Star Wars, Playhouse Disney, etc. We’re going with Tanner’s friend, Meredith, who happens to be here this week, too. Her Dad is being deployed soon, so this is a special trip for them, too, and we’re glad to be sharing tomorrow with them.

Feel the Magic!

Love,
Beth

We Made It!!!!

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May 10, 2010

Our drive went well and we arrived yesterday at 6pm in Give Kids the World Village, the resort just for Wish kids. It is truly a magic place. There are probably 50-75 wish kids here with their families and 8,000 volunteers work together with a small staff to make every moment special for these kids who have been through so much.

Just a few highlights:

• The present fairy comes every day and leaves gifts for the kids. Today we got a special Give Kids the World Village Candyland game.

• The characters from three theme parks come here so the kids get more undivided attention. This morning – Goofy, Pluto, Mary Poppins, and Mickey and Minnie.

• The Mayor of Give Kids the World Village is a large rabbit and he and his wife, Ms. Merry are here every night. Tanner rode the carousel with Ms. Merry two times tonight and is so smitten with her. We will call tomorrow to arrange for Ms. Merry to tuck Tanner and Jake into bed one night this week.

Tanner and her new friend, Ms. Merry

• There is a putt-putt golf course, splash park, train, playground, magic castle, theatre, etc., etc., etc. All right here at our beck and call.

• There is an activity every night. Last night, there was a Candyland party on the playground with a DJ and Tanner danced the night away while Jake played on the playground. We even played a giant game of Candyland. Tonight, there were therapy dogs to pet, a Kinkachu and an armadillo to see, a man with a telescope showing you the sun and a party that we didn’t attend because everyone was tired.

• All of our meals are free here and there is ice cream all day long. We had ice cream right after breakfast this morning!

• Tanner had her nails and makeup done at La Ti Da spa and she and Jake both got airbrush tattoos. Again, all done by volunteers.

• The list goes on an on, I can’t say enough about these amazing people and how fun it is here in the Village before we even get to a theme park.

We went to Sea World today and saw the Shamu show and rode some rides. Everyone had a great time. Tomorrow, we’re heading to Magic Kingdom tomorrow to see the Princesses, Lightening McQueen and Mickey Mouse.

So, here’s the only downer… Tanner is still coughing… and coughing… and coughing. It definitely seems worse and it took her a very long time last night and tonight to get to sleep because of the coughing. But still, no fever, which is what they told us to look for. So, we don’t know anything else to do but keep going… carefully. We are trying not to wear her out and forcing her to take naps to try to avoid worsening her immune system with fatigue. She has had a coughing virus before that she got over without incident, so we’re hoping that’s what it is. We’re going to Magic Kingdom tomorrow because we’re terrified we’re going to end up in the hospital and that’s the theme park we would most want to go to if tomorrow is our last day. So, pray for healing for her.

That’s about it. Good night!

Love,
Beth

Disney Here We Come!

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May 9, 2010

Well… we made it this far with no fevers and we’re on our way to Disney! As usual though, things haven’t gone exactly as planned.

Saturday morning, Tanner woke up sounding a little worse and we really struggled with what to do. If we canceled, we wouldn’t be able to reschedule until fall. If we went, we risked ruining the trip with a visit to the hospital and exposing her to all those germs when her immune system was compromised by possible illness. Ughh. We hate these decisions. We decided to take her to the pediatrician’s office and see what they thought. They listened to her lungs and checked her ears. ALL CLEAR!!! Then, they were kind enough to run counts for us. They were elevated… boo! That indicates she is fighting something. But, overall, the pediatrician felt like she was okay to go but suggested we check with her oncologist. So, I called in to clinic and gave them all of our information.. they also said, “Go!” But, in asking about whether we were exposing her to undue risk by taking her to a park with thousands upon thousand of people, they said the airplane was really our biggest risk.

After much deliberation, we decided to drive to Disney instead. It was just one risk we could eliminate. So, we called Make-A-Wish to cancel our flight, packed up and got the car tuned up within three hours, and got on the road yesterday!!!! Hurray! We drove last night to my parents’ house outside Atlanta and stayed overnight. This morning, we are on our way and should be there by 6 pm.

Tanner doesn’t seem any worse; she really isn’t coughing too much this morning. Everyone is super excited and we’ve got our fingers crossed we’ve made the right decision.

Mickey Mouse… here we come!

Love,
Beth