Clinic Day #45

January 4, 2011

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

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

Here are the highlights:

A White Christmas in Tennessee

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

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

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

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

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


Christmas Spirit

December 22, 2010

Christmas last year

Every year, the Christmas spirit hits me at some point. I may have been preparing for weeks, going through the motions because I know I have to or I will get behind, but not really enjoying it like I want to. Last year, it hit me when a sweet friend sent Santa to our house because she knew we wouldn’t be able to get out to see him that year. He arrived in a black pickup truck and came in amidst shouts of joy from my kids. He snuggled my bald little girl and tried to coax Jake to sit on his lap to no avail. And when I hugged him goodbye, I whispered in his ear, “Thank you so much… I didn’t think we would get to do this this year.” And, he whispered back, “I know… that’s why I came.” POW! The Christmas spirit hit me like a ton of bricks!

This year, it has come in more gently. I’ve been trying to enjoy the kids being home and their anticipation of Christmas, but mostly it has seemed like too long of a week without school before Christmas this year. But, this morning, sometime between 10 am and 1 pm, Christmas arrived for me. We invited two families over to decorate Gingerbread houses. These are not just any friends… they are dear friends. These are the girls that showed up, silently, at the hospital to hold my hands as we waited to find out if Tanner would make it through the night when she had to be life-flighted to Vanderbilt for a drug reaction. They are the girls that bring food without being asked, bring crafts when they know we have been housebound too long and take Jake with them when I need to focus my attention on Tanner. They are those easy kind of friends that are more like having family around your house.

So, we gathered this morning, kids happily smearing glue-like icing on gingerbread houses and eating easily as much candy as they smothered on. The girls did a nutcracker show, the boys played batman and air hockey and the Moms got some much needed girl time in a long week with no school.

A sugar coma in the making

When they all left and I sent the kids to their rooms for some quiet time, I realized that I was finally in the Christmas spirit. I put some music on the ipod and made fudge and counted my blessings… my many, many blessings.

When John got home, we went to see some Christmas lights and then, after everyone went to bed, I made Christmas morning breakfast casseroles to freeze in anticipation of Christmas day.

Christmas is just a magical time when, despite all the hubbub, there are genuine moments of such kindness to be found. Like the other night when my friend, Ron, called to say they had a special package for Tanner on Christmas day. I met Celia in the Kroger parking lot (okay, it was the liquor store parking lot, but that didn’t sound so good!) and we talked for 45 minutes in the freezing cold, catching up. Celia and Ron had pulled some favors and got a signed copy of Taylor Swift’s new CD for Tanner. It says, “I (heart) Tanner.” Swoon. In addition, the daughter of the person who got the CD for Celia made Tanner a necklace out of a Taylor Swift guitar pick.

In the bustle of season our friends had remembered us. That is the Christmas spirit.

I know I haven’t written in a while, so here are some of the highlights of the past two weeks:

– Jake had his Christmas program at school where he wore one blue transformer glove the entire time he was on stage singing Rudolph the Red Nosed Reindeer.
– Tanner had pajama day, went can caroling for the Second Harvest Food Bank and enjoyed her last day of school before Christmas break.
– We had our picture taken with Santa. Started out as a kids only picture, but since Jake wouldn’t get anywhere near Santa without me, we all jumped in. As you can see, he is clinging to my leg for dear life.
– Beth, Tanner and I went to see the Nutcracker. It was beautiful and reminded me so much of when my Mom used to take me to see it in downtown Philadelphia as a little girl.
– Beth knew me well enough to offer to go with me to return Domino to the rescue organization he came from. She was a great distraction. We drove to Jackson, TN, and handed him over to, hopefully, find a loving home without little kids. I still miss him terribly, but we’re ready to start looking for our new, family friendly dog after Christmas.

If it hasn’t already, I hope the Christmas spirit creeps up on you or hits you right between the eyes!


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.


Ahhhh… clear x-rays!

December 22, 2009

John took Tanner in for chest x-rays today and they were clean!!! Her neutraphils had dropped from the crazy 19,000 to a more healthy, but robust, 3,100. So, doc says we’re in good shape to travel. They gave us a contact at a hospital near my parents’ house that is capable of handling a kid with leukemia and told us to give her Claritin to clear up her one ear that is threatening infection.

So, if my eyes will just clear up and Jake’s nose, we are good to go! We’ll get there a day later than planned, but there nonetheless. Hopefully, no other crazy things will happen to keep us from going.

I’m just starting to feel a little Christmas cheer. Just let the kids open some gifts from dear friends (a Phillies and an Eagles hat, oh my!), read some Christmas stories together and am going to get Tanner to help me wrap some presents while Jake finishes napping. It would be completely blissful if it wasn’t for the laundry!!!New hats!

My poor husband finally got to go back to work – he definitely bore the brunt of this health mishap. Trying to work from home while taking care of our two monsters is no picnic.

Hoping all of you are indulging in a little Christmas, Hannukah or Kawanza cheer.


A Big Bump in the Road

December 21, 2009

Tanner’s ER visit seems to have been the beginning of a virus epidemic at the Page house. So far, John is the only one who has not gotten sick. Tanner’s oncologist thinks we all have adenovirus – sore throat, congestion, irritated eyes, and fever. Tanner actually is much better; she just has a cough at this point. I spent all yesterday in bed with a fever and body aches. Today, I am better, but not yet well. Jake continues to cough and just feel yucky. Everyone’s eyes have been bloodshot and irritated at some point.

We’re taking Tanner in for a chest x-ray tomorrow to be sure she’s not developing pneumonia again. If she’s okay and Jake and I feel better, we still may make it to Atlanta for Christmas Eve. I’m a little behind on my Santa duties, but I think we could do it.

Poor John is taking care of three sick people while trying to work from home as well. Once again, he is the lynchpin that holds us together.

So frustrating to have jumped through so many hoops to get to this point only to have a virus take us all down like this. We just can’t catch a break.

Keep us in your prayers. We’re hoping everyone is better tomorrow.


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.


In the ER

December 19, 2009

It’s 11:49 pm and I’m writing from the Vandy ER. Tanner has a fever and we are waiting for counts to decide whether we have to stay or not. If her counts are above 500, they will let us go. They have already given her an IV antibiotic that will cover her for 24 hours. If her counts are below 500, we will have to stay. I’m not even going to talk about how I feel about this development – it’s too exhausting and I don’t feel like I have any energy to spare.

Obviously, we will not be lighting the candles at church tomorrow and, of course, we can no longer count on being able to go to my parents’ for Christmas. We really can’t even count out being in the hospital for Christmas at this point.

That’s all I’ll write. The rest would be blasphemous, I’m afraid. I’ll update in the morning.


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.


Taking it Back

December 9, 2009

We’re working fast and furious to pick materials so we can hit the ground running on our new house renovations when we close next week. Buying this house has been a really great thing for all of us. It feels like we’re getting back something the cancer took from us back in June when Tanner was diagnosed. We may have lost the house we had a contract on back then, but we have found another that suits our needs even better and lets Tanner stay in her school as long as we want.

It’s also given us something to look forward to. Something we know is not going to be taken from us, or fall through because of low counts or because someone got sick and we couldn’t be around them. There are so few things I allow Tanner to look forward to these days – it’s just too painful for her to be disappointed again and again. Usually, we don’t tell her about something fun we’re going to do until right before we do it; that’s when we know its really happening. But, this house is a pretty sure thing and we are all happy to be dreaming about something that has nothing to do with cancer.

Tanner is feeling pretty good, considering the steroids. She goes in spurts where she seems to feel pretty good to times when she just doesn’t feel like doing anything but lie down. The past two days, I’ve seen the side effects from the Vincristine creeping in as well. Yesterday, her mouth started burning whenever she ate or drank anything. This morning, her jaw started aching and tonight, her upper leg is hurting so badly she is lying in bed right now, waiting until I can give her the next dose of painkiller in 20 minutes. I expect in the next day or two to see the awkwardness and difficulty running and climbing stairs to return. These side effects are like old acquaintances you wish would stay in your past – familiar, but not good for you. The treatment for this disease is cruel, even while giving us hope.

She finished her five-day pulse of steroids this morning; hopefully, she’ll start feeling better soon. By next week, we’ll start having to be a little more careful about getting out since the oral chemo she has been taking daily should start affecting her counts by then. But, tomorrow we are taking advantage of our freedom and having a girl’s day while Jake is at school. We are going to Panera after we drop him off to have her schoolwork time in a booth over bagels. Then, home to make a gingerbread house without little brother stealing all the candy.

I really hope Jake can continue going to school this month. He had such a good time on Tuesday and his Christmas program is coming up next week. We’ve been practicing Jingle Bells and he’s got it down cold so I hope he gets to have his moment to shine.

It feels like we are taking back our lives, little by little.


When Dinner Out Becomes a Celebration

December 7, 2009

It has been more than six months since Tanner has eaten in a restaurant. We have eaten outside on the patio of Jonathan’s twice, but never inside. Today, she wanted to go to Opry Mills mall and eat at the Aquarium restaurant. It has a huge fish tank in the middle and a diver often swims around and feeds the fish.

It was a great idea, because they both needed new shoes and I was so sick of bringing home shoes for them to try on and then having to take them back because they didn’t fit.

Tanner and Jake dancing on the stage at Opry Mills

Tanner and Jake dancing on the stage at Opry Mills

So, although it felt odd to be able to say yes to something involving a public place, I gathered us up and off we went. We had the best time. It felt so amazing to be out in public with both kids… so normal… only now it doesn’t feel normal. It was pretty empty when we first got there and they were able to run around as much as they wanted. They seated us in a booth off by ourselves at the restaurant and the kids had a really good time looking at the fish. Jake especially loved it; he was fascinated, especially when the diver appeared. Poor Tanner got really hungry waiting for the food to come (did I mention it is steroid week?) and was actually crying by the time it got there. Steroid hunger is not to be underestimated. She shoveled the food in like a ravenous wolf despite the fact that it had just come out of the fryer. I asked her if it was burning her mouth and she said, “Yes,” between bites, but never slowed down.

We even had ice cream sundaes for dessert. Why not?
Despite the fact that she wasn’t feeling very good, she still wanted to get shoes and pajamas. It felt so weird to be in a store with other people. I kept having to choke down panic and remind myself to just soak it in. Even Tanner seemed a little anxious a couple of times and said once, “Is it okay that there are people around?” I assured her that we were fine, but that we needed to get out of the mall before it got too crowded.

Shark Boy and Lava Girl?

Shark Boy and Lava Girl?

She fell asleep in the car and napped when we got home then had a lesson with her teacher, Mrs. O’Hara. After dinner, we had planned to decorate the tree together. She was very excited and kept asking when John would be home so we could get started. But, by about 10-15 minutes into decorating, the steroids got the best of her and she begged me to take her to bed. Sad for her to not have enjoyed something she usually loves so much.

Jake, on the other hand, enjoyed himself immensely. He was an ornament hanging fool. True, he usually hung about six ornaments on the same limb, but he was very enthusiastic. He sang Jingle Bells as he went and was so cute.

Overall, despite the steroids, it was a great day. I wish John had been able to be with us at the restaurant so we could all have been out together. The steroids definitely impact her and all of us, but we’re trying to power through and not let them stop us from enjoying this freedom while it lasts. We have no way of knowing whether the 100% dosing of the oral chemos she is taking is the right dose for her until we go back to clinic in a couple of weeks and see how it affects her counts. If they are down, we’ll go back to being secluded until they come back up. The doctor tells us that it usually takes 2-3 months to get the dosages adjusted to keep her counts between 1,000 and 2,000. At that point, we will gain a lot more freedom; she should be able to go back to school and rejoin life.

By tomorrow, I suspect the steroids will take most of the day from her. Jake is going to school for the first time in a month. Tanner and I will probably lay around a watch movies and do our toenails. That’s probably as much as she will feel like doing. Sounds good to me; I’m tired!