Category Archives: treatment

Counts Update

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February 18, 2010

I didn’t actually run down the street screaming pulling my hair from the roots, but I wanted to. Tanner’s counts were up, but barely. She’s at 430… anything below 500 is considered severely neutrapenic and below 1000 is neutrapenic. Carie assured me it is normal to have this happen sometimes and that after all the chemo she has taken, sometimes it takes the body a while to recover from a counts hit. So, same old, same old restrictions and come back next week for her monthly clinic visit. Still no oral chemo, but they will give her a dose of vincristine and she will have a lumbar puncture with methotrexate next week, regardless.

Stick a fork in us.

Love,
Beth

Hoping for Good Counts

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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.

Love,
Beth

Counts Update

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February 7, 2010

Just a quick update on our counts check today… Tanner’s neutraphils had climbed to 230, up 100 from Monday. Not as much of a jump as we had hoped, but at least headed in the right direction. The doctor wants us back next Thursday and told us to keep her off of her oral chemo until then. Tanner should definitely feel good with this break from chemo even if her immune system sucks. So, more isolation, which stinks.

Thanks for all the prayers… they worked. Now, is it greedy to ask for her counts to go up more quickly?

Love,
Beth

Her Beautiful Face

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February 10, 2010

We’re cooped up and feeling it. That’s all I can say about it without whining and I think I’ve had enough whining in the last few days to last me a lifetime! Tanner feels good and we’re going in for counts tomorrow to see if they are at least on their way up. Her oncologist called yesterday to tell us to stop her oral chemo until her counts come up. He felt they might not rise quickly while she was taking the 6-MP so she’s off of it until at least tomorrow.

Those of you who keep up with us on facebook will have likely seen this picture. I posted it the other day. I can’t stop looking at it. There’s something about it that is so powerful for me. I didn’t ask Tanner to pose for this picture. If you know her, it will not surprise you to hear that she inserted herself into a picture I was taking of the floors in our new house. She ran into the room, saw me taking the picture, threw off her coat and jumped right into the center of the picture. Nothing unusual. She’s a ham, alright. But, I was surprised when I got home and loaded the photo onto the computer.

It’s not her pose… that comes straight out of my People magazines that she sees lying around the house. It’s her face. I expected her to be a little silly, a little put on, with a cheesy grin or a comical pout. But, her face is open and honest. She’s staring at the camera with a confidence and an integrity that takes my breath away. Leukemia has stolen many things from my child, but it will not steal this. It will not steal the strength and courage that I see in that straightforward look… in that beautiful face. No hair to hide behind, but she doesn’t need it. She is a force to be reckoned with.

This is not a child who is afraid. She may have fears, but she is not afraid. She expects the best for herself – you can see it in that look. The way she is looking so calmly at the camera. She’s a superhero. She’s a rock star. She’s GI Jane.

I take comfort in this. I look at her in this picture and know that she will be able to handle whatever comes her way. That she will be an extraordinary woman someday when all of this is just a memory. That the same tenacity and persistence that drives me batty as a parent will be the same determination that allows her to succeed against all odds as an adult. She will have learned it the hard way.

Say a prayer for us tomorrow if you think about it. We’re hoping to hear her counts are on the upswing.

Love,
Beth

Not this Week

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February 8, 2010

We’ve been waiting for so many good things to happen. Living right on the edge of happiness. Today, we went to clinic for counts, hoping to hear they were high enough for Tanner to return to school this week. We were flabbergasted to find that her neutraphils were only 130 – the lowest they have ever been since diagnosis. Nurse Carie was so surprised, she ran Tanner’s counts twice to be sure.

Apparently, the doctor said that maybe the virus that caused Tanner’s ear infection caused the low counts and that now they should be able to recover. In the meantime, we were handed a mask along with Tanner’s count sheet and are in seclusion. Jake will again not be able to go to school and we will postpone his birthday party this weekend until next weekend.

Last week, Tanner made a valentine box. A cardboard shoebox wrapped in red paper and decorated with glittery stickers and magic marker hearts. She worked hard on it and, without my even knowing, pulled out a class list and wrote a valentine for each child. Littlest Pet Shop for the girls and Transformers for the boys. She was so excited. This weekend, I bought candy so she could tape it to the cards. She talked about putting all the cards in the boxes for each child and being able to go to the party.

I’ll bring the box with me to a meeting at the school tomorrow and give it to her teacher so she can pass out the valentines for Tanner. Jake will miss his Valentine’s party, too. Just like he missed his Thanksgiving party and his Christmas party. We just can’t afford to have him bring germs home to her when she, essentially, has no immune system.

Needless to say, we are extremely disappointed. Still waiting.

Love,
Beth

On the Mend

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February 4, 2010

Tanner finally is feeling better today. After having spent the last two days pretty much in bed, she got up today and played. The antibiotic that she is on for the ear infection has been pretty rough on her stomach and she still isn’t sleeping well (steroids cause sleeplessness), so we’re all a little tired, but she isn’t coughing as much and had more energy today to play.

We bought valentines today for her class and decorated a valentine box in anticipation of being in school that week (I hope, I hope, I hope). We’ve laid low this week and hope that on Monday we find her counts are up enough to go back to school next week.

Speaking of school, those wonderful kids at Moore Elementary raised more than twice their goal in the Pennies for Patients campaign. They raised $2,042 to help fight leukemia and lymphoma. Amazing! On Monday night, the school board is presenting an award to the school and to another in the district that also did a campaign for a child with cancer there. The principal has asked Tanner to come to the meeting with her to help receive the award. I hope her counts allow it.

She was on the news last week; a story about the campaign. They want to do a follow-up when Tanner returns to school and a local newspaper wants to do the same. Very cool. Tanner will just hate that attention (wink, wink).

We’re in a bit of a rut. I think we’re all waiting for something to happen. I find us watching too much television and playing too much wii these days. I really hope she can go to school next week – she really needs a change of scenery, interaction with other kids and a challenge for that quick brain of hers. And, Jake and I could do some things that he has missed over the past 9 months – the library, his gym class, playgroup, etc. He needs to have more friends his age – boys, preferably. So, I’m looking forward to being able to focus on him a little. He’s turning 3 this month and we’ve planned a fun birthday party at our new house and bought him a much bigger present than we usually buy for the kids. He deserves to be in the spotlight for a day.

We’re hoping to be able to go visit our potential new dog this weekend… in prison! He is part of a prison dog-training program that pairs dogs destined for euthanization and prisoners in a intense three-month training program that teaches prisoners job skills and responsibility and gives the dogs a second chance at life. We hope to end up with a nice, trained dog to complete our family. A dog to take Millie’s place at the end of Tanner’s bed and calm the fears that a six-year-old shouldn’t have. A dog to motivate me to get up and walk in the morning to have some me-time and get some much needed exercise. A dog for Jake to lay on and throw a ball for. A dog to keep John company when he falls asleep on the couch. We can’t wait.

Waiting for lots of good things to happen. Impatient for them to get here.

Love,
Beth

A Setback

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February 2, 2010

I spent most of yesterday trying to convince myself that my glass is half full. It is. I know it is. But, there are times when it is harder to remember than others.

Lurking in the recesses of our recent good news about school was a cold Tanner was fighting. Yesterday morning, she woke up with her ear hurting. Rather than drive all the way to the hospital, I ran by the pediatrician’s office. They were awesome. They took us right back so we didn’t have to wait in the germy lobby and, of course, Tanner had an ear infection. They have been a long-standing problem for Tanner.

Our pediatrician called our oncologist, Dr. Mixan, who said he wanted Tanner to have a Rocefin shot in addition to oral antibiotics. Rocefin is a broad-range antibiotic that Tanner typically gets through her port any time we go to the hospital with a fever. “A shot?” I repeated. “What kind of s-h-o-t are we talking about here?” Not pleasant, she said. Tanner has a huge issue with shots, but has no problem getting a big needle put into her port in her chest (go figure) so we decided to go to clinic and get the antibiotic via her port. It took longer, but saved us a lot of trauma, screaming and holding her down.

It was a good thing we went. Her counts had dropped across the board. Her neutraphils dropped to 960 from 3300. Which, of course, means back on the restricted diet and no school until they go back up. Tanner cried. She had wanted a salad for lunch so badly. They did a chest x-ray, which we never heard any results on so I assume it was negative.

It’s hard for good news to be so fleeting. For the celebration to constantly be in so much jeopardy. I found myself wishing we had not made such a big deal about going back to school or about being able to eat whatever she wants. Less disappointment that way.

I think my disappointment must have been very visible. Tanner’s nurse, Cari, said gently, “It’s just an ear infection, Beth. She’ll get over it quickly.” And, she’s right. It could be so much worse. I had a pep talk with myself in the car on the way home. This is a long journey and I had no right to expect it to be smooth at this point. I can’t allow myself to be tired when there is so far to go. If I expect Tanner to keep fighting, I have to keep fighting.

So, it took all day (and I mean ALL day) to get to see the glass half full. It is. She’s alive and that, alone, is everything to be thankful for. But, more than that, we have joy. Even if it is fleeting, it is worth having. Living to avoid disappointment is not living at all and that would be a disservice to the fight that she is fighting.

She is not feeling real great this morning. It’s the last day of steroids (hurray) and that’s never a real great day for her. Add the ear infection and she is pretty miserable. We’ll lay low and, hopefully, wait for another celebration to come.

Love,
Beth

Snow, Sledding and Steroids

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January 27, 2010

I moved to Nashville in 1994 from Philadelphia, where, as you can imagine, it snowed quite a bit. In the nearly 16 years since, this is the most snow I have seen! We got a whopping 4-5 inches of snow, which is just enough to have an awesome time sledding.

John’s Mom, Ann, came on Thursday and had a special afternoon with Tanner after clinic. Friday morning, I left the kids in her capable hands and ran out at 8 am to:
1. search for a sled (I knew it wasn’t going to happen, but I couldn’t live with myself if I didn’t try)
2. search for waterproof gloves for both kids
3. search for snow boots for Jake
4. Finally join the snow panic and ransack what was left of the stock at the grocery store so we could “hunker down” for the weekend

I would love to say that after three hours and eight stores, I was successful, but the only thing I came home with was food. No sleds, boots or warm gloves within 100 miles. Retailers must pray for snow in Tennessee.

So, later that day, in the sleet and snow (aka “wintry mix”) Tanner insisted on going out to meet some friends in the school field. We bundled up and I put three pairs of crappy gloves in my pocket so I could replenish her gloves when they got wet. It was in the 20’s and very, very cold and windy.

The kids played for 15 or 20 minutes with me replacing Tanner’s knit gloves every time they got wet. My hands were cold in ski gloves so I couldn’t imagine how she was standing it. But, after we went through all three pairs, she had a melt down and I had to give her my gloves and carry her all the way home and put her in a hot bath.

That’s the way it goes with Tanner these days. She plays so hard and with such enthusiasm, but it usually ends rapidly when she tires out. She is on steroids this week, which exacerbates her fatigue. She lives life in bursts… a burst of energy… a burst of exhaustion. I worry about how she will do at school. But, I try to remind myself that some school is better than no school and we’ll just let her do what she can.

The day after the big snow, we all went sledding with some neighbors and had such a good time. It was Jake’s first time and he LOVED it. I still have my old Radio Flyer sled from childhood and we took that and then shared our neighbors’ plastic sleds. Usually, the runner sled won’t work here, but we had freezing rain on top of the snow and, after waxing up the runners, it flew! I didn’t take my camera, but two of our friends had brand new fancy cameras and took lots of pics, so I’m sure they will send me some I can post (hint, hint Ashley and Molly).

We have two more days of steroids. She has handled them pretty well so far; some crying and fatigue, but she’s powered through a lot of it. We give her a lot of grace and hugs, remind her that it’s the steroids that make her feel this way and let her rest and watch more TV than normal. When she’s had enough, she asks to go to her room alone and watch movies on her computer in bed. We’re learning how to find a workable balance during this week. We’ll have 19 more steroid weeks, so it’s important we figure out the best way to get through the week without letting it totally halt our lives.

If school ever reopens this week (it’s already cancelled for tomorrow), I’m supposed to meet with a group of folks over there so we can come up with a plan for Tanner to attend school safely. She will need some special concessions, obviously, and we will all pow wow to figure out how to best meet those needs and how to protect her from germs as much as possible. The school has been so super and I know they will do everything they can to help.

The new house renovations are going really well. It looks like a house again instead of a demolition zone. Carpet and tile this week. Finishing hardwoods next. Then, finally, the long-awaited kitchen redo. If all goes as planned, we’ll move mid-March. Then, an empty house to sell. Hmmmm.

Anybody want to buy a house in historic Franklin, TN?

Love,
Beth

Clinic Day #27

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January 28, 2010

Apparently Tanner will be going back to school!!!!!! Hoooooooooorayyyyyyyyy!!!!! We’ll meet with the school next week to iron out any special considerations she will need, let her get over the steroids she started taking today, and start her out on Monday, February 8th. Unbelievable. Really unbelievable.

Clinic obviously went well today, although very long. Her counts were actually quite high… too high. They were 3,300. They should be between 1,000 and 2,000, but the doctor said he wanted to see how she did this next month before he would raise it. Whew! Weird to be hoping for lower counts, but we are. I’ll take the high counts for now, though. It means her immune system will be that much stronger to fight off the school germs.

They also removed all of her eating restrictions. Tanner was almost as excited about that as she was about school. She started yelling out all the things she wanted to eat, “Salad? Grapes? Strawberries! I want strawberries!!!” It was so cute.

After all that excitement, we sat… and sat… and sat… in a very full infusion room waiting for chemo. After an hour or more, the nurse came out to tell us they had misplaced Tanner’s chemo roadmap and they couldn’t order her chemo without it. “An actual physical piece of paper? There’s no electronic file with her two-and-a-half year roadmap in it?” Apparently not. They finally found it behind the filing cabinet and ordered her chemo. More waiting… and waiting. We finally left four hours after we got there; two-and-a-half hours of which was spent waiting for a chemo push that took all of 3 minutes once it got there. You never know with clinic.

Tanner left clinic with her grandmother and they went to see Alvin and the Chipmunks. Then, home for some wii with Jake, dinner and the Make A Wish Interview.

She decided she wanted her wish to be Disney World (secret applause). We looked at Disney World and Disney Land yesterday on the Internet and she saw how much better Disney World was and decided to head to Florida instead of California. I swear I didn’t sway her (well, maybe just a little); I just pointed out that if she wanted to meet the stars of a Disney show, we could probably go to Disneyland as well. She wanted to see it online, then we clicked over to Disney World (that might be the part where I swayed her) and saw some awesome videos of the different parks. iCarly apparently cannot compete with the Magic Kingdom, Typhoon Lagoon and Animal Kingdom. Not to mention that you get to stay in the Give Kids the World village, which is just for wish kids. It has ice cream all day, Christmas every week, present fairies that leave presents under your pillow every night, and a Mayor that’s a rabbit. Seriously. I’m so excited because this is something for Jake, too. Although no one has gone through what Tanner has, Jake is affected by all this and deserves something special.

So, it was a long, but very special, day. I’m going to bed to dream about sending my daughter off to her first day back to school.

Love,
Beth

Both Ends

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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.

Love,
Beth