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 ☺


Nine Screaming Girls + Jake = One Good Time

July 10, 2010

I’m sitting on the sofa completely spent from hosting Tanner’s Rock Star birthday party for nine little 7-year-old girls. Two super teens from the neighborhood did the girls’ makeup and hair, Aunt Beth applied tattoos, they all decorated cardboard guitars and then we did some dancing and singing and got our rock star on! It was one of the most fun parties we have ever had for the kids. Pressure is on for Jake’s next party; we’re going to have to make it a doozy!

We’ve spent the last few days mostly preparing for the party and swimming at the pool. Thursday night (for Tanner’s actual birthday), we had pizza with E. and LaLa, cupcakes with some neighbor kids and caught fireflies outside. Tanner finally got to catch some fireflies. They had a great time!

Even Domino wants to check out Tanner's fireflies

Thanks to everyone who sent birthday messages… Tanner and I sat at the computer for two days and read them all. They made her smile and feel special.

Poor Jake had a little bit of a hard time with Tanner’s birthday. He’s apparently just gotten old enough to realize that he isn’t getting the same special treatment she is. He would ask in his little voice, “Why I not get a cake? Can I get a car cake?” We made him a special non-girly gift bag for the party, which he loved, but he hid in the media room for most of the party, playing Star Wars wii by himself. Poor little man. When the excessive girliness and screaming was over, he came back out, busted a move or two on the dance floor, got a tattoo and ate his ring pop. It all turned out okay in the end.

Domino attended the beginning and end of the party, but stayed in his crate during the rest, hiding from the chaos. He managed to snag a piece of pizza from the trash after it was over, though. Score one for the dog. He loves him some pizza.

It was a really awesome party and I think Tanner and the girls had a great time, thanks to everyone who helped!


My Best Seven Years — Happy Birthday Tanner!

July 7, 2010

Tomorrow, Tanner will be 7 years old. Impossible. Though the last year has been rough, I still wouldn’t trade it for the world. Any year spent with my family is a year worth living.

We’re planning on swimming in the morning and getting home in time for E. (John’s Mom) and Charlotte (her best friend and honorary Aunt) to come, bearing gifts and well wishes. Then, Tanner wants to make homemade pizza and make another attempt at firefly catching. We’ll invite a few neighbors over for cupcakes and to join in on the fun.

Her birthday party is on Saturday night… it’s a rock star party. I’ve been up late at night cutting out cardboard guitars for the girls to decorate.

Send her a birthday message, if you think of it. It would make her day to get lots of messages.


Clinic Day #36 — Ever So Slowly

July 1, 2010

We went into clinic this morning for counts. I was expecting, after three weeks of being on 50% oral chemo dosage, for her counts to be well up above 1,000… but… no. 900. 900? That’s it? That’s only gaining 100 neutraphils per week… pretty slow, but I guess at least it’s in the right direction.

There is a theory that after a long time on chemo, the body develops bone marrow fatigue. As if to say, “Why should I bother to make any new cells, you’re just going to kill them?” Seems realistic to me.

So, we’re not quite ready to dine out in a restaurant again, but we’re not hibernating either. We’ll take it.

Been busy swimming a lot, playing with Domino and having playdates. Tanner’s friend, Meredith, came over yesterday for a “slumbover”… that’s when you have a friend over in the afternoon and they stay for dinner, you put on your pajamas and watch movies and they go home at bedtime. They had a super time.

Tanner got her birthday present a little early today (her birthday is July 8th). She wanted a new bike and we gave it to her today so she could ride it in the 4th of July parade in Franklin on Sunday. She opened up the garage door to go out and ride her scooter and just screamed in delight when she saw it… I love that.

Please pray for our little friend, Madelynn and her family. Madelynn is four and lives in our neighborhood and has ALL. She has just started maintenance and is experiencing the roller coaster that is the first months of this stage as they try to find the right dosage to keep her counts stable. Maintenance is such a dance; we’re still doing it. But, those first few months are very unstable. We were actually supposed to have a cookout with Madelynn’s family and Lily’s family last weekend and, ironically, had to cancel because Madelynn was in the hospital with low counts and a fever. Thankfully, it turned out to be a pretty benign virus and she got to come home pretty quickly. But, her counts continue to stay very low. I ran into her Mom, Amy, walking in the neighborhood early the other morning. We talked briefly about how disappointing it is to start maintenance… it seems like it should be so great, but it’s actually pretty rocky. It’s just a tough pill to swallow when you’ve waited for those first awful six months to be over.


The Best Thing About Cancer

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.


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

Happy on the Outside

April 20, 2010

Tanner at the party

Somehow six days have slipped by again without a post. Let me catch you up: Tanner did get to go to her birthday party at Jump Zone – she had a blast and I wasn’t the only Mom handing out the hand sanitizer. The Dalmatian passed the child-worthy test with flying colors and now we’re trying to work out going to the prison to visit him. If all goes well, we’ll put dibs on him and wait until he finishes training in June! Tanner is feeling well, although she seems a little tired and has had some headaches. John and I got to go on a date on Sunday night for the first time in months. We went to see a movie at the Nashville Film Festival produced by our next-door neighbor. Went to church on Sunday (Jake entertained the church during the children’s sermon by showing another child the inside of his nose…) and then had lunch at the home of some good friends. It was a great day.

Tanner dancing after the party... love the shoes

We got a package from Give Kids the World Village today. That’s the resort for wish kids at Disney where we will be staying. It was so exciting to see all that we will be doing. We get three Disney passes, two Universal theme park passes and one Sea World pass. Not to mention how awesome the Village is itself – putt-putt, horseback riding, a train ride, present fairies, ice cream all day, La Ti Da spa, etc., etc., etc. All the characters from Disney, Universal and Nickelodeon come to the Village to visit with the kids. If Jake sees spider man in real life, he may pass out. If only iCarly would show up… Tanner would need nothing else. I’m hoping this trip will suspend reality for us for a while. We could all use a break from that.

So life is good… why is my child so mad? Tanner is struggling with something that is resulting in massive temper tantrums. Her therapist thinks it is anxiety from the newness of school. That sometimes even really good things can be overwhelming. I think Tanner also tends to push until she is more than exhausted, which doesn’t help. Suffice it to say, I’ve received the brunt of Tanner’s anger and it’s exhausting for all of us. Poor Jake doesn’t understand what he has done wrong to make his sister suddenly turn on him. It’s frustrating to finally be at this good place and see her struggle so mightily with something. It’s like the emotion is too much for her, even though the emotion is happiness. Please pray that I keep my patience and that Tanner finds some peace and is able to fully enjoy this time.

It’s tough to know how to slow Tanner down… how to know when she’s had enough, even if she doesn’t think so. She called today from school with a tummy ache. When I got there with medicine, she was lying down on a bean bag chair while the rest of the class sat at their desks. She looked pretty miserable and I just decided maybe she should come home. She didn’t want to, but I felt the rest might be the best idea. She didn’t stay down long when we got home. After picking up Jake, she wanted to go for a walk. I took the wagon so she didn’t get tired, but on the way home, it looked like we had done too much. Then, the meltdown came over something small and stupid (isn’t that how they always happen?). And, she ended up losing some pretty fun stuff because she couldn’t get hold of herself. It’s just a no-win for everyone and I wish I had a rule book to follow. You know, the rule book for kids who have cancer and who have just returned to school and seem happy, but keep having meltdowns. Anybody seen that one at the book store? Online? Guess I’ll have an extra call with Allison. Sigh.

Thursday is her monthly clinic day. Vincristine through her port and the start of another five-day pulse of steroids (that ought to help the meltdowns, eh?). I’m hoping that if the docs want to raise her chemo they’ll let us wait until after Disney. It would be a huge disappointment to have to postpone the trip due to low counts. I’ve tried not to be specific with the kids about when we’re going just in case.

Hoping for a tantrum-free tomorrow…


Recovering Slowly

March 4, 2010

We got to come home at about 4:30 Tuesday after her transfusion was finished. She felt pretty awful and was coughing almost constantly. We doped her up pretty good that night and she actually slept really well and seemed a lot better yesterday morning. Her fever stayed around until the late afternoon, but finally went away. Her chest was incredibly sore from coughing so much and she cried every time she coughed all day long. Oxycodone is a wonderful thing, but apparently can’t completely fix that kind of sore muscle.
Yesterday was John’s birthday, ending the annual 6-month period where he gets to make fun of me for being older than him. The kids made cards and Tanner got him a Starbucks gift card so they could go together – she for hot chocolate and him for coffee. Jake wrapped one of his race cars, “a gween one” for him and I gave him…. Granite in our new kitchen ☺ We had brownies and ice cream, but frankly, he got kind of gypped out of a birthday since nobody is all that celebratory right now.

Tanner’s still coughing quite a bit this morning. Thankfully, Jake has school today. He is losing it hanging around here without his playmate up to par. School will offer some much needed exercise. Thank you Ms. Julie for giving him some normalcy twice a week.

In between the nursing duties, I’m still packing. Moving day is just 9 days away. As stressful as moving is, at least it is something else to think about and something with an exciting and new aspect to it.

Counting on the IgG transfusion Tanner had to turn things around for us. Hope it delivers… for all of our sakes.


Between a Rock and a Joyous Place

February 20, 2010

It is an exceptionally difficult thing to make a decision that makes one of your children happy and hurts the other immeasurably. I started the day with regret and ended it with little bit more peace, but still not knowing whether we made the right decision or not.

Today was Jake’s birthday party, the party his sister could not attend. Tanner seemed okay with this decision a few days ago, but yesterday began having a hard time with it. As she watched me blow up balloons and helped me stuff goody bags, she struggled with how to express her anger while still supporting her little brother. She would have an outburst, then apologize and say she wanted Jake to have a good time. It is wrong to expect a six-year-old to handle the culmination of 9 months of deprivation with grace.

This morning, her teacher came to the house for a lesson and Tanner broke down during the session and sobbed on my shoulder. She was sad and frustrated and didn’t know how to show it appropriately. Then, she was embarrassed about the way she had acted in front of her teacher. Tough morning.

On the other hand, there was a sweet little boy who turned three and deserved a birthday party filled with the unfettered joy that occasion merits. It was a good party. Just a few good friends, some presents and cake. He loved it, but I think even he missed Tanner.

I would like to say John and I were as joyful as we wanted to be for his party. But, it was hard knowing Tanner was at home feeling so abandoned. Her E. and Papa came to stay with her (thank you, you have no idea how much that meant) at the house, but I know my highly social girl would have loved to be directing a game for Jake’s friends.

I feel bad knowing I might have put more into Jake’s party if I didn’t feel so conflicted. I don’t think he noticed, but I did. He had a good time and loved having his friends, eating cake and opening his presents.

The day actually ended better than we could have hoped. John’s brother Michael, his wife, Amanda and their son Mack came to the party and stayed afterward for some fun. E. and Papa brought Tanner over to the new house and we let the kids ride the new ATV and their scooters in the cul-de-sac. We called for pizza and had an impromptu picnic on the front lawn while the kids played. Tanner loved seeing Mack (they are the same age) and it helped a lot to be able to play outside with him even if they couldn’t touch each other. We all went home exhausted and laid on the sofa for the rest of the day.

Cancer infects so many parts of our lives that it never ceases to amaze me the situations I find us in… hard spots with no clear right decision. We did our best to make the right decision, but it costs, as always, in some way.


Hoping for Good Counts

I did try to crop out the toilet in the background, but couldn't do it!

February 17, 2010

Tomorrow is counts day… please, please, please let them have gone up enough to at least allow playdates with friends. The kids have played with each other exclusively for 10 days now and it is, to say the least, getting old. I don’t dare hope for counts to be high enough for her to return to school, but it would be a great bonus!

We’ll go in first thing in the morning, so we could still get Jake to school if her counts are high enough for him to return. We need to bring cupcakes so his class can celebrate his birthday.

We had a great birthday celebration despite it just being the four of us on Monday. We ended up having a picnic in the basement of the new house with Chik-fil-A and a chocolate birthday cake with Star Wars guys on it. Jake was so excited about his battery powered Batman ATV. He didn’t even scream or make any kind of reaction when we showed it to him… he just made a beeline to it, with this crazed look on his face and drove off… priceless.

Been cleaning up the basement in preparation for Jake’s kid party on Saturday. We made the difficult decision to go ahead and have the party whether or not Tanner can attend. At first, she seemed very okay with this decision, but now that it might actually happen, is upset about it. I tried to explain that we just can’t keep postponing it… that he deserves to have his party. Hopefully, it won’t come to that.

Is it possible to move without ever packing anything? I’m trying. Every time I go over to the new house, we grab stuff as we leave the house and put it in big rubbermaid containers and unload it in the appropriate room when we get to the house. Pictures off the walls, vases, candles, accessories… you name it I have just grabbed it as I walk by. My goal is to not have to wrap anything in newspaper. Mostly, though, we’re in moving denial. We haven’t moved nearly enough and need to get in gear this weekend. Our moving date is just 3 weeks from this Friday. Yikes!

Cross your fingers and toes, knock on wood, throw salt over your shoulder, whatever you want, just wish us luck tomorrow. There’s only so much togetherness we can take.


Indoor Fun

February 14, 2010

Tanner and Jake playing wii

How many ways can you have fun while stuck in your house and no visitors allowed? We’ve tried ‘em all… trust me… but have had lots of help from friends.

Thursday afternoon, our dear friend Anna Lynn, who is forever thinking of us, and is forever creative, brought Jake’s valentines from his class to us. He had missed his valentine’s party (and his Christmas party and his Thanksgiving party). His class made valentines for Tanner, too, so we had a lot of fun opening them. She also brought beautiful yellow tulips (that’s so Anna Lynn), valentines from our church staff and sugar cookies with a cookie decorating kit (from another dear friend). We were opening those valentines when I got a text from Tanner’s home teacher, Mrs. O’Hara saying there was a package on the doorstep. It was an early housewarming gift – pots with gardening gloves, tools, seeds and even dirt. How cute!

Friday, Corinne brought home Tanner’s valentines from her class… she LOVED them! There was one unsigned valentine and she’s still trying to figure out who her secret admirer is (I love this!). I opened the door to find another package from Mrs. Wood’s 4th grade class – they have been so super to Tanner – they sent valentines and birthday cards for Jake. So sweet.

We also had valentine packages from some of John’s co-workers and from all the grandparents. It has really helped alleviate the boredom. These days have been hard on all of us, but Tanner is especially frustrated. She had a small taste of freedom and then it was taken away so quickly. She is definitely feeling it.

We had a breath of fresh air Thursday and Friday from Aunt Beth. Beth is one of my two best friends and has been so unbelievably generous with her time. She is my savior when I need to balance the impossible – a child who can’t leave the house and a necessary task that requires me to leave home. Thursday afternoon, she came so John and I could meet with Tanner’s school. Then, she stayed overnight so I could take Jake first thing Friday morning to his annual kidney ultrasound. Jake was born with one kidney and has to be monitored. His one kidney is stellar! Tanner got to stay with Aunt Beth while Jake and I left for several hours and I think Beth must have been totally pretended out by the time she left!

The meeting with the school went great. They were so awesome and are doing anything and everything they can to make sure Tanner will be as safe as possible when she returns to school. She will have her own bathroom and her own computer to cut down on sharing germs. Together, the group of us that met developed a 504 plan. It is a legal document that spells out Tanner’s limitations, outlines what the school will do to accommodate them, and excuses her from normal absence rules, etc. She’s done so well here at home keeping up with her schoolwork, thanks to Mrs. O’Hara. She continually scores at or above grade level.

Thank God we have this new house to go “visit” when we are bored out of our minds and tired of looking at these same four walls. We go jump in the bouncy house and ride the little train and run around in the empty space to get out our ya yas! John went over there for several hours today to put together Jake’s new Batman battery powered ATV. We’ll give it to him tomorrow on his birthday… he will, to say the least, be beside himself. He loves anything to do with cars and motorcycles and asked to have a motorcycle birthday party. Beth and I painted a mural on the wall of his new bedroom with a road coming through a green hill and clouds in the sky. We’ll use the road as a headboard for his race-car bed and put his airplane shelves in the sky looking like a red plane flying out of the clouds (Thanks, Johnny). It has been a rough road for him, too, and he deserves an awesome room.

We all made valentines for each other today and had fun giving them to each other after dinner. The kids and I decorated the sugar cookies for John, but couldn’t eat them after all the valentines candy.

So, we’re stir crazy, but trying to make lemonade, if you know what I mean. Tomorrow is Jake’s birthday. I am sad that there is no one but us to celebrate his day. Usually, we invite family and maybe a few close friends for cake after dinner. He’s too little to really understand the big party is coming. We’re hoping Tanner’s counts will be high enough on Thursday to come to his party, but if not, will have it anyway. He needs to have his birthday… even Tanner said so.

Three years ago today, I was going to bed right about now, bags packed, knowing that I was getting up to head to the hospital to deliver a baby that threatened to be too big if we waited. Jake beat the doctors to the punch and came on his own that day, without induction. So like him to be accommodating. Eight pounds, 15 ounces of beautiful, long, sweet baby boy. John and I knew Valentine’s Day would be forever spent preparing for his birthday and could care less. He is the best Valentine’s gift we could ever ask for.

Much love,