Monthly Archives: December 2009

Clinic Day # 26

Posted on by
1

December 31, 2009

Standing room only in the infusion room at Vanderbilt Children’s today. A run on chemo. I’ve never seen it so crowded. Tanner, Jake and I actually sat on the floor. There were people standing around everywhere. Some parents were actually rude enough to remain sitting while kids needing chemo were left to stand waiting. Crazy.

Tanner’s counts were perfect – in leukemia world, that is. Her neutraphils were at 1,700 (the doctors want them between 1,000 and 2,000 during long-term maintenance). They were at 16,000 on Monday when she went to the ER with a fever. The body is an amazing thing. The good news is that, for now, they’re not raising her chemo levels… AND we don’t have to go into clinic for FOUR WEEKS! Good grief… we won’t know what to do with ourselves.

Everyone seems to be feeling better today. Of course, the steroids should fix that for Tanner. In addition, she got a dose of Vincristine today and will get an oral methotrexate pill tonight. The methotrexate seems to wipe her out the next day and make her feel bad for a little while. So, it probably won’t be the best week, but maybe we’ll be able to play a little tomorrow.

While the nurse was pushing Tanner’s Vincristine into her port, Jake said, “What are you doing to Tanner?” Cari replied, “I’m giving her medicine that will make her feel better.” Tanner said, very deadpan, “It doesn’t make me feel better, it makes me feel crappy.” Well said.

Love,
Beth

Resting

Posted on by
2

December 30, 2009

We’re resting. Trying to sleep and be still enough to get over the hump of this virus barrage. All of us have felt sick at one point or another. A good night’s sleep seems to have cured me, but I feel one sleepless night away from a nasty cold. Tanner has stayed fever free, but seems to feel bad sporadically. She has spent about 6 hours a day for the past few days in bed watching TV by herself… a sure sign she doesn’t feel up to snuff. She complains of a headache and nausea and just generally not feeling well.

The difficulty in our situation is discerning which symptoms belong to an illness and which belong to the chemo. Especially now that we are adjusting to a new phase of treatment. I remember cancer moms telling me that their kids were very fatigued during the beginning of long term maintenance, so who knows.

Tomorrow is clinic day. It marks the beginning of the second month of long term maintenance. Tanner will get Vincristine through her port and will start a five-day pulse of steroids. It’s so frustrating that the first day I would expect her to start feeling better from this virus is the day she will start the steroids that make her feel so bad.

Renovation work is starting on our new house, which gives John and I something else to think about. It’s nice to have a distraction, but I really need to get moving with this packing stuff!

Love,
Beth

Home from the ER

Posted on by
3

December 29, 2009

Tanner and John stumbled in from the ER at 12:30 last night. Tanner’s chest x-ray’s were clear, so no pneumonia, thank God. Her counts were once again very elevated, indicating that she is fighting an infection. They gave her a broad spectrum antibiotic and sent them home.

This morning, she is fever free, but seems pretty tired. We’ll just take it easy today and hope all of us continue to recover. Boy, talk about one step forward, two steps back. It’s frustrating, to say the least.

Back to clinic on Thursday for her monthly dose of Vincristine and the start of a five-day steroid pulse. Joy.

Love,
Beth

A Very Merry Christmas

Posted on by
2

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.

Love,
Beth

Ahhhh… clear x-rays!

Posted on by
6

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.

Love,
Beth

A Big Bump in the Road

Posted on by
3

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.

Love,
Beth

Home Again

Posted on by
6

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.

Love,
Beth

In the ER

Posted on by
5

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.

Love,
Beth

Clinic Day #25

Posted on by
11
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.

Love,
Beth

The Breaking Point

Posted on by
5

December 16,2009

Tomorrow is a pivotal day. We go to clinic in the morning for counts. The results will likely determine the course of our holidays – joyful and with lots of family, or a little less joyful and by ourselves at home. I feel like this will be the breaking point for Tanner… and possibly for me, too. We want — no we need – a change of scenery and a chance to forget about cancer, even if only for a few days. The thing is, Tanner feels really good these days. It’s hard sometimes for me to remember to give her midday medicine because she seems so normal. But, still, we’re reminded every day by the places we cannot go and things we cannot do, that she is not normal. Being able to spend the holidays among family would be as close to normal as we have had since diagnosis. I don’t know how I will console her if her counts are too low to go.

The stress of everything depending upon this count check has definitely gotten to Tanner. She has begun in the last few weeks to act out and has steadily gotten worse. We haven’t seen this type of behavior from her since her stint of acting out after diagnosis. What seemed to help her then, and I believe will help her now, is our play therapist, Allison. It is so weird, but without ever talking to Tanner about leukemia or her difficulties with it, Allison is able to help Tanner work out her feelings through play. She says Tanner is very transparent in her play. Last week, Tanner forced animals and dolls to drink “toilet water,” telling them they had to do it and if they didn’t, she would have to hold them down and make them drink it. I think toilet water is actually a really good analogy for chemo.

Tanner is also anxious about moving. What started out as a really positive thing has turned into a source of anxiety. She is nervous about leaving her friend, Corinne, and about meeting new kids in the neighborhood when she has no hair. She has also started obsessing about the dog we lost several months ago, Millie. She writes her notes and puts them on her ashes urn and talks about her all the time. She is afraid to leave the room I am in and won’t go upstairs without either Jake or me with her. She is still sleepwalking and having nightmares, although she is sleeping better than she was several weeks ago. It’s heartbreaking to watch her self-destruct this way. She is eaten alive by anxiety and it manifests itself in bad behavior.

So, please pray for us in the morning. We need good counts. We need a break. I don’t want to have to tell her, yet again, that we will miss something important to her.

Love,
Beth