My Sweet Boy

January 27, 2010

Tonight, as I was putting Jake to bed, we did our usual “Now I lay me down to sleep…” prayer. We follow that with a general blessing for friends and family and then we do “special blessings.” Jake asked for blessings for his booty (see my previous post this evening) and for God to help him poop in the potty so he could get two blue race cars (I’m not making this up).

Then, I said, “Let’s pray that when Tanner goes to the doctor tomorrow, he says she can go back to school.”

Jake paused and said, “I not want her to go to school.”

“Why not?” I asked.

“She my best fwiend,” he answered.

“You would miss her?” I said.


Yummy, yummy boy.


Both Ends

January 27, 2010

Tonight, after Tanner’s lesson with Mrs. O’Hara, we decided to go to Chili’s to eat. John was at a work dinner and we were on our own. Tanner loves Chili’s; she’s always trying to connive some way to get us there to eat. So, we piled happily into the car and drove down the road for dinner.

While we were waiting for our food, Tanner kept saying how hungry she was. “When will our food be here?” she asked repeatedly. When it got there, it was piping hot and I began to stir Jake’s Mac n’ Cheese so it would cool off. I looked over at Tanner and asked if she needed help cutting her chicken, but she was staring off into space and didn’t respond. I watched her for a moment; she looked exhausted. “T… you okay?” I asked. “Fine,” she said. “I just need honey mustard.”

Between the time I asked the waitress for honey mustard and the time she brought it, I watched Tanner go downhill. The waitress set the honey mustard on the table and Tanner simply lay down on my coat in the booth without a word. I knew she couldn’t eat it. It was a moment lost.

Jake and I ate as quickly as we could, boxed Tanner’s food up and left without her ever eating a bite.

Now, it may seem ridiculous to care so much about one chicken dinner in the light of some of the truly awful things she has had to face over the past 8 months, but it’s just that it is such a metaphor for life with cancer. Get excited, look forward, anticipate… be disappointed. Watch everyone else around you get the thing you wanted so badly while you remember that’s it’s not for you… you have cancer.

She handled it better than I did, really. I cried about it later, which is so uncanny, because I almost never cry about cancer. It just seemed so unfair. Such a simple thing to want.

Anyway, the rest of the night went according to Murphy’s law. I carried Tanner into the house with her hand over her mouth, rushing to the bathroom, while Jake screamed from the car where it was parked in the driveway in the dark, “I’m cared! Mommy help!” Park Tanner in front of the toilet, run back out to get Jake. Set up Tanner on the sofa with a bucket and a towel. Frantically mix up some zofran to prevent nausea. Give Tanner the medicine while Jake hangs on to me screaming because the constipation he has been suffering from finally decides to give way. Clean up (nuff said). Carry Tanner to bed, dinnerless. Put Jake to bed, a pound or two lighter. Collapse.

Usually I only recognize the humor in this kind of situation in the retelling, but this was so ludicrous that I even started laughing in the midst of it. It wasn’t a cancer moment; it was just a motherhood moment, one that moms everywhere could appreciate.

Tomorrow is clinic day. John and I are anxious. Anxious that they will raise her chemo level. Anxious that she won’t get released to school. Anxious that she will get released to school and be exposed to all those germs.

Please pray for the right thing… whatever that may be.


Big Things

January 26, 2010

We spent Saturday night at one of our favorite places with some of our favorite people. We went to the circus!!! I LOVE the circus. I would go if I didn’t have kids and so would John. I had put it on our calendar a month or more before, but was struggling with whether it was safe to take Tanner into that crowd of people. It’s one thing to be at a restaurant with other people in the next booth, it’s another to sit with people who may or may not be healthy on all sides of you.

John’s company, Franklin American Mortgage Company, made the decision easy. They gave us their suite so we could go without worry and invite friends, too. We had an awesome time with two other families. It’s a big thing for Tanner to be able to do something like this… and Jake, too. We realized at the Circus that Jake has experienced a lot less than Tanner at the same age because he’s been sheltered due to our situation. He was super excited!!! We all laughed at him because he just kept jumping up and down and screaming at random moments because he was so happy.

Thursday night will be another big night. Two representatives from Make a Wish are coming to interview Tanner about her wish. She is so excited, but very conflicted. She really thought she wanted to go to Disney World, but now wants to maybe meet the cast of one of her favorite TV shows and ask to be in an episode. Decisions, decisions. I was hoping for Disney, but whatever she wants will be fine. I just want it to be special for her. It will be interesting to see what she comes up with.

And, Thursday morning is clinic day. It has, unbelievably, been a month since we have been to the hospital. Surreal. She will get a dose of Vincristine in her port and see the doctor. She also starts her monthly five-day steroid pulse.

We are hoping her counts have remained between 1,000 and 2,000 so that they don’t raise her chemo levels. No more chemo, please. Also, if her counts have remained steady, maybe they will clear her to go back to school.

John’s Mom, Ann, is coming with us to clinic on Thursday and then taking Tanner to the movies afterwards. They are going to spend the day together. Tanner is super excited.

Tanner continues to feel really good most of the time. She has periodic nausea and body pains and fatigues more easily than normal, but mostly seems like any six-year-old. Still, the chemo is there. She got sick yesterday morning for no apparent reason that I could figure except the chemo. Weird since Tanner only got sick twice during all the chemo she has received. But, a reminder that even in maintenance, the chemo is still there, still poisonous, still eating at her.

Still, I’ll take maintenance over the past six months any day. The freedom that it brings, the ability for Tanner to regain strength and stamina. The possibility of school and friends.

Big Things… Good Things… Hopeful Things.


Two Doors Down

January 23, 2010

Three women who didn’t know each other 8 months ago sat in a booth at a restaurant and shared secrets they didn’t dare tell anyone else. They shared heartache others can’t understand, and information others don’t need to know. They cried tears of laughter and anguish. They shared a bond both wonderful and terrible. Their young daughters have leukemia; three beautiful girls with a grueling disease that tests their mothers’ stamina and will.

They were glad to be there, but at the same time, wished they weren’t.

Larisa, Amy and I went to dinner at 6:30 and didn’t leave the restaurant until 11 pm. We had much to share and formed a reluctant sisterhood of sorts over pasta and wine. We talked about the odd coincidence of circumstances that brought us together. When Tanner was diagnosed with leukemia, Larisa’s daughter, Lily, was in the hospital with an infection during the Delayed Intensification phase of treatment. A mutual friend emailed me and said I needed to meet them; they were just two doors down from us in the hospital. I remembered my friend talking about Lily. She had showed me a painting a month before that she was doing for Lily’s at-home classroom. I remember thinking how devastating it would be to have a child with leukemia and prayed for her that night. Now, here we were. Lily and Larisa came down the hall the next morning, bringing Lily’s Garden bracelets and soaps and a sweet note Lily wrote for Tanner. I still have it. It says, “This is hard, but I know you can do it. DI is the hardest part.” It is written in red crayon. I also still wear the lavender Lily’s Garden bracelet; I haven’t ever taken it off.

When they stopped by our room, Tanner was in bed, literally panting in pain. I stepped into the hallway so as not to disturb her and knelt down to talk with Lily. She had the face of an angel framed on a sweet, bare head. I told her that Tanner was getting her port put in that day and Lily lifted up her shirt, unceremoniously, so that I could see hers. Larisa gave me a pink sheet of paper, which I also still have, with her name, numbers and email address and an offer to contact her whenever for whatever.

About 2 weeks later, she became a lifeline for John and I. When I called her to ask if Tanner was ever going to go back to being herself after the steroids, she assured me she would. She said it would take about 3 days for her personality to start to show up and she was right. Since then, we’ve become friends and so have Tanner and Lily. We don’t see each other that often, but I know she is a phone call or email away if I need an understanding ear or have a question for someone who has been there.

Five months later, Tanner was in her first month of DI and on her second hospital stay for that month. She had pneumonia, and on about day 8 of our 10-day stay, I got a facebook message from a friend who said a church member’s daughter had just been diagnosed with leukemia and was in the room just two doors down from us. I went down immediately and found them gone to surgery. I left a note with my name, phone number and email and an offer to contact me whenever for whatever. The next day, we met Alex in the 6th floor lobby. Tanner and I met Amy later that day when she stopped in the doorway to say hello. I remember seeing her 3 weeks later, on Thanksgiving morning, coming out of Kroger carrying a bag of bagel bites for a steroid-crazed child and assuring her that she would get her daughter back 3 days after stopping steroids. I recognized the terror in her face as my own when she tried to believe me.

Over dinner tonight, Amy said she, too, had prayed for us before her daughter Madelyn was diagnosed. The mother of a little girl in Tanner’s class at school had lifted her up in Sunday School, a class of which Amy and Alex are members.

Larisa said there had been a “two doors down” family for her, too. Unfortunately, their story ended sadly.

We joked tonight about starting a “two doors down” club for people to pay forward what has been given to them by another, and to share the wealth of medical information that means nothing to most, but everything to a very few.

Thanks, girls. I needed both the laugh and the cry. And, I’m glad we have each other, even though we wish we didn’t have to.


Music to My Ears

January 19, 2010

“She is functioning completely normally for a six-year-old girl.”

Wow! I had thought Tanner’s physical strength had improved tremendously over the past month, but never dreamed the physical therapist would say she doesn’t need any therapy. She actually said she was looking for ways to challenge Tanner because her coordination, balance and strength were so good.

You really don’t have any idea how relieved I am. Not just because she didn’t need therapy, but because there is a part of me that has wondered in my darkest place, whether Tanner would ever be physically strong, the way she was before, again. There are so many potential long-term side effects to the medications that Tanner is taking. I don’t worry about them in the front of my mind; they are buried somewhere deep in the place I just can’t go. It’s too much to try to worry about what could happen; what does happen is tough enough to stomach. But, I personally know kids who have avascular necrosis (bone death) and mental processing problems due to the chemo, so I’m certainly aware of the potential problems. There’s also long-term metabolism issues, long term nerve damage, etc., etc., etc.

So, to remove one worry from the dark place makes a little more room for light and hope.

Tanner is strong. Her muscle tone is returning to her legs and arms. She no longer looks like she belongs in an ad for a starving child in a faraway country. She can skip and hop on one leg, walk on a balance beam backwards and do a sit up from upside down. Amazing. It’s wonderful not to think of her as being so fragile.

I have a hard time looking at other kids sometimes without feeling somewhat resentful. They are athletic and bouncy. They have a glow about them and color to their skin. It’s been hard to believe that Tanner would ever look like that again. She still has a way to go. She’s still very pale and low on stamina; I suspect she’ll be that way until August 6, 2011, when this journey will come to an end. But, she no longer looks sickly. And, that’s a relief.

Normal for a six-year-old child. Music to my ears.


Good Riddance 2009

December 3, 2009

I was so happy to write “2010” on a check I wrote yesterday. 2009, for lack of a more literate description, sucked. I don’t want to say this year couldn’t be any worse than last (my realm of possibility has seriously changed), because it, of course, could be. But, I’m hoping things are on the upswing as they seem to be.

Tanner is doing a little better this month on the steroids. We’ve seen some emotional behavior, but they haven’t wiped her out completely like they sometimes do… yet. She’s still taking them through Wednesday morning, so we’ll see. Overall, she is feeling good and we are much encouraged that the doctors felt comfortable with her not returning to clinic for a whole month. That indicates they believe her counts to be pretty stable, something that can usually take many months to achieve. We’ve taken that as a sign that we can comfortably have a little more freedom, which is nice.

We had a very busy weekend focusing on trying to get all the decisions made for the renovations on the new house. It’s fun to have something else to think about, but still, in the back of my mind, I feel like I have to rush, rush, rush because you never know when a hospital trip might pop up. It’s an awful thing to have in the back of your mind, but it’s just the way it is.

Still, it feels for the first time in a long time like our lives are not being held completely hostage by cancer. We’re moving forward, which is the way it should be.

Jake moved forward tonight. He slept in a bed for the first time instead of his crib. We bought him a racecar bed (he LOVES racecars) and he was so excited. It’s easy to forget about the “other child” in this situation. In fact, I forgot to take him to a birthday party on Saturday. I feel terrible. But tonight… he had his moment and he did great.

Have I mentioned that Tanner’s hair is growing back? It started out as this little white peach fuzz, but has since darkened and grown to where she has a soft down covering her entire head. It’s amazing how fast it is coming in. I can’t keep my hands off of her head – she feels like a little downy duckling. She is really hoping it will be brown and curly! It does actually look darker, but there’s no word yet on the curls. See, even her hair is moving forward.

So far, 2010 feels different. It’s not that the dance with cancer is over by any means; I know it will go on for another year and a half and it will be very difficult, but I feel a little lighter on my feet now. I used to wake every morning and my first thought would be, my daughter has leukemia. Now, I sometimes wake up thinking something else – the new house, renovations, getting a new dog – good things.

Here’s to more good things for all of us this year.


A Very Merry Christmas

December 28, 2009

Thank you for all the prayers and good wishes for our Christmas travel. We did make it to my parents’ house in Atlanta on Christmas Eve and had a great time. My brother’s girls are 9 and 5, so Tanner was in heaven – two playmates for three straight days. Jake developed quite an attachment to my neice, Mary Mike, the 9-year-old… he was constantly asking, “Where’s that girl?”

Tanner finds a willing shoulder in her cousin, Erin, after a fun, but tiring day.

The best part of the whole weekend was that, for Tanner, I think it seemed as normal as possible. There really wasn’t anything that her cousins could do that she couldn’t. They played hard… really hard. At the end of every day, Tanner was exhausted and would come to me and ask to go to bed by 6 pm. But, she was having fun and it was a little “vacation” from the limitations of cancer. Thank you Mary Mike and Erin for giving Jake and Tanner so much love and attention!

Tanner and her new doll beds

Santa was good to the kids. In addition to an American Girl doll for Tanner and a Shake and Go Racetrack for Jake, he surprised them with a big bouncy house that Santa put up in the basement of my parents’ house. I think Mary Mike summed up their reaction best when they rounded the basement stairs and saw the 9 x 9 inflated castle… “Holy Cow!” she said!!! Needless to say, they jumped all weekend long. Great exercise for Tanner’s legs. The bouncy castle came home with us and is in the basement of our new house waiting for us to move in.

We even got to experience a little church on Christmas Eve. We found a little glass prayer chapel at the back of the church that overlooked the sanctuary and watched some of the service from there. Tanner got to wear her pretty Christmas dress and get dressed up, just like her cousins.

On our way to church

We were still all somewhat sick for the week. We were coughing and sniffing and, ironically, probably gave something to my family members who had worked so valiantly to stay healthy so we could come. My Mom is sick already.

I thought Tanner was getting better today, but this afternoon started feeling bad and we found she had a fever by bedtime. She and John are at the ER as I write this, waiting for counts to determine whether they are high enough for her to be able to get IV antibiotics and come home or whether she will have to stay. We are all unbelievably weary of this routine and, although I am trying to be grateful for the break in illness that allowed us to travel for Christmas, I just really wish we could catch a break for a while.

So, pray for her that her immune system isn’t shot from being so tired over the holidays and that she fights off whatever this is. Pray that we will have the stamina to endure more of the stress of this disease. Pray that Tanner will continue to have the will to fight.

Today, Tanner said to me, “Mom, I have a job.”

“Really?” I replied. “What is your job?” expecting to hear that she was a hairdresser or a nurse.

“I’m fighting leukemia,” she said.

Keep it up big girl… keep it up.


Home Again

December 20, 2009

Tanner’s neutraphils were very elevated – 19,000 – indicating that she was really fighting whatever she has. So, they sent us home after giving her an IV antibiotic that lasts 24 hours. We came home at 1 am. Her fever broke overnight and she is actually feeling good this morning. I, on the other hand, finally caught whatever she and Jake have and feel yucky! Sigh.

But, we are thrilled to have been able to come home and hopeful that the antibiotic and her crazy neutraphil count mean we will be able to continue with our holiday plans to go to Grandmom and Grandad’s house.


Clinic Day #25

Tanner and I waiting for Jake's Christmas program to start

Tanner and I waiting for Jake's Christmas program to start

December 17, 2009

Hitch up the sled, we’re flying to Christmas!!!! Tanner’s neutraphil count today was 2,750!!!! That’s even higher than it was 2 weeks ago! We were given the all-clear to go to John’s Mom’s tomorrow and to my parents’ next week. We don’t even have to go in for counts next week! Hallelujah!!!!

Tanner and I high-fived and we hugged nurse Carie and then she forbade me to cry happy tears. When we got out of clinic, we skyped John from the hospital lobby; he was at our church with our Children’s Minister and we told them the happy news. You have no idea how I am breathing a sigh of huge relief not mention joy at being able to spend the holidays among family!!!

After hearing the good news, Tanner and I ran for the hospital pharmacy to fill a few prescriptions, grabbed a bite to eat while we waited, and drove at breakneck pace to get to Jake’s Christmas Program at school at 11 am. Thank you Sissie for holding the program for us (we were a few minutes late!). Right when we got there, Jake’s class came in. We were really worried that Jake would pull a repeat of last year’s performance. Last year, he made it through the back door of the church, saw us, burst into tears and refused to participate any further. So, we snuck in the back and hid ourselves from view. No worries… he was a jingle belling maniac! He came into the back door and bolted to the altar where he stood, ringing his bell and waiting for the rest of the class to catch up to him. He stood there, not singing, but ringing his bell with a huge grin on his face. Then, he saw John who had snuck up the side to take video (It’s hard to hide, when you are as tall as John is). He must have yelled, “Daddy!!!” five or six times during the performance and even made some weird noises and funny faces that had the crowd laughing. Tanner and I giggled hysterically. It was such a treat for her to be able to participate in something like that. She was really proud of him and even got to see a few friends.

Jake and Ms. Julie singing Jingle Bells

Jake and Ms. Julie singing Jingle Bells

Amongst our great happiness today, there is one tiny bad thing (why does there always have to be a bad thing?). If her counts stay this high over the next couple of clinic visits, they will have to up her dose of chemo. Not really what we want, if you can imagine. She’s at a 100% dose right now and they can up it to 125% at max, I think. I really don’t relish the idea that she could take more chemo, but they want her counts to stay between 1,000 and 2,000 to assure that they are affecting any leukemia cells that might try to make a comeback.

But, we will cross that bridge when we come to it. Right now, we will joyfully pack, clean the car and get the oil changed, wrap last minute presents and make a cheese grits casserole before we pile in the car tomorrow headed for Jackson, TN. We’ll be back on Saturday night in time to light the advent candles at church on Sunday morning, regroup (do the laundry) and repack to head for Atlanta on Wednesday.

Thank you to everyone who prayed and send well wishes. And, thank you God for recognizing that we couldn’t take any more disappointment.


House Calls

December 15, 2009

Well, Jake’s school stint lasted two days. He has a cold and I had to keep him home today. He missed his Christmas party, bless his heart. And, I was supposed to take Tanner to see Princess and the Frog while he was at school, so that was also a no go. We’re hoping Tanner doesn’t catch the cold and end up spending Christmas at the hospital.

BUT, the day was saved by a special visitor… Tanner’s favorite ER nurse, Blaire, came to play. Seriously, how amazing is that? Blaire was Tanner’s nurse back in March when Tanner was lifeflighted to Vanderbilt for a Bactrim reaction. All that long night, while John and I sat in chairs and hung on to hope that Tanner would make it through the night, and that someone would figure out what was wrong with her and be able to fix it, Blair was there. She was quiet and competent and sweet to my child and to John and I.

The next time we were in the Vanderbilt ER was on May 30; the pediatrician had sent us in after having spent most of the night at Williamson Medical Center’s ER with excruciating back pain. We were sent home having been told that Tanner was constipated. The next morning, after not sleeping for most of the night due to the pain, Tanner developed a fever and we went to the pediatrician’s office. They sent us to Vanderbilt where she had numerous tests and were told that she most likely had leukemia. Again, Blaire was there, this time with Megan (who Tanner also loves). I think going through that kind of trauma bonds you in a strange, but powerful, way. Blaire and Megan came to visit Tanner while she was in the hospital that first week, even bringing gifts for her. They said they rarely get to see what happens to their patients after they leave the ER. We thought they were amazing.

A month ago, Tanner needed a blood transfusion and John took her to the ER. Guess who was there?!!! Blaire! I think it’s unusual to keep getting the same nurse like that when there are so many shifts and the Vanderbilt Children’s ER is so big.

Blaire contacted me through the blog the other day. She said she had the week off and would love to come play with Tanner. Of course, we said yes. Today, she and Tanner danced, dressed up Build-a-Bears, played restaurant and doctor, and even played wii. Tanner loved it. She needed it. I don’t have the stamina to play with that kind of intensity anymore… I’m burnt out on pretending.

I think it is amazing for a nurse that sees sick kids all day at work to choose to spend her time off with a sick kid. But, honestly, that’s been our experience at Vanderbilt. John and I say constantly how awesome it is that the people that work there are unfailingly compassionate. For example, when Tanner has a CT scan, you can only imagine that she is the 20th kid the tech has scanned that day, but you would never know it. They are kind to her, and kind to us. They genuinely care.

We are so fortunate to have a hospital like Vanderbilt so close by. I keep up with the CaringBridge site of a little girl named Kinsee that has T-cell ALL and just had a bone marrow transplant. She lives in a small town in West Tennessee and travels to St. Jude for treatment. When she is in intensive phases of treatment or her counts are low, she and her mom have to live at the Ronald McDonald House or the Target House. I can’t imagine how disruptive this is during what is already an unbelievably stressful ordeal.

Today, Blair reminded us of just how lucky we are. Not only do we live 20 minutes from Vanderbilt, they make house calls! I meant to take a picture of Tanner and Blaire for the post, but forgot. Tanner says Blaire took some with her phone. Maybe she’ll send them to me (hint, hint) and I’ll post them if she doesn’t mind.