Category Archives: school

Bit by Bit…

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January 12, 2010

Tanner and Meredith... silly!

I have been trying to take Tanner to see the Princess and the Frog for more than a month. Either her counts were low, she was sick, Jake was sick and home from school or it snowed and Jake was home. Finally, today, we got to go.

We dropped Jake off at school and then ran a few errands, picked up a bagel, and headed to the theater. We were a little late and were really hurrying to get into the theater when I noticed Tanner skipping. Not awkwardly, not lurching to will her body forward and upward, not with one leg having to be slung along to cooperate… just skipping. I caught her reflection in the window of the restaurant we were passing and thought she could have been another child – one without cancer. I said, “Look at you skip, girl!” and she laughed and began running – fast and hard and with joy that she could.

She’s getting so much stronger. She no longer has that emaciated, fragile look she had even a month ago. Her legs look stronger and she is able to walk up stairs without holding onto the rail, get herself off the floor without using her hands and jump rope again.

She’ll hopefully start physical therapy soon to capitalize on this period of time that we have, before she is able to go back to school, to really try to build back some of the strength she has lost. Until now, we didn’t think she had any real chance to make a gain with physical therapy. Any gain she made would have been wiped out by the intense chemo and steroids she was taking. But, now, she has a chance to build some strength that I think she can actually hang on to.

We had a great time at the movie and went to pick up Jake at school. Usually Tanner sits in the car while I go into the church to pick Jake up. I bring in hand sanitizer and soak Jake to his elbows before we get into the car. Today, I let Tanner come in with me. It was the first time she had seen Jake’s classroom or met his teacher after having dropped him off and picked him up from school nearly every week since August. We stood in the doorway and when Jake saw her, he screamed, “Tanner!!!” and ran into her arms. He buried his face in her chest and then looked up to say in disbelief, “You’re here!” Even a two-year-old could recognize a special moment.

When we got home, Tanner’s friend Meredith came to play. Meredith was in Tanner’s Kindergarten class and is also in the 1st grade class she’ll enter when she’s cleared to go to school. The girls put on countless shows, dressed up and played Wii. She had a great time.

It’s so nice to be able to do these things… and to feel like we’re headed for more good things… school, a birthday party, a family vacation.

We still used the hand sanitizer, though. No sense in getting crazy.

Love,
Beth

What a Great Weekend

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January 11, 2010

Tanner modeling my new coat

It was the most fun and normal-feeling weekend we have had in a long time. Saturday morning Tanner’s homebound teacher, Mrs. O’Hara came and they had a great session. Then, Jessica came and stayed with the kids until the afternoon while John and I went and did some new house shopping, picking light fixtures, carpet and tile. It was fun just tooling around together and I found that I didn’t think about cancer almost at all the whole time. Jessica and the kids made a card for her fiancé, Harley, who is serving in the marines overseas. Harley once sent Tanner a picture of himself with his marine haircut and Tanner with her leukemia do and said all the guys in his unit thought she looked cool. It hangs on our refrigerator and is one of the nicest things we have received (and that’s saying something!).

After John and I came back home, we all went to a friends’ house for tacos and fun. These are great friends who have been so kind to us. They go to our church and Tanner has known their daughter, Gracie, for a long time. They also have a son, Sam Ross, who is Jake’s age, so it made for an extra fun playdate as everyone had someone to play with. Their kids a similar energy levels to ours and we were treated to some crazy concerts and dance exhibitions.

Sunday, Tanner and I went to the mall together. She was feeling really bad when we left, with a lot of pain in her legs, but was determined to go. We took a jogging stroller with us so she could ride if her legs continued to hurt, but some painkiller seemed to fix the problem and she ended up pushing more than riding. We ate lunch in the foodcourt (another first since diagnosis) and did a little shopping then came home in time to go for another visit. Our friends Steve and Michelle were nice enough to let us come over and look at their beautiful kitchen to get some design ideas and the Tanner and Jake love to play with their girls. We finished the day with some Wii and everyone went to bed tired, but happy.

We also got some really great news… Tanner can go back to dance class. WOW! It will mean so much to her to be able to belong to something again. Not to mention how great it is for her legs.

So, we had a great weekend. Pretty normal, if you don’t count all the medication and the leg pain. Still, an idea that long term maintenance does equal more freedom, even if there is still more chemo involved than anyone would like.

Hope you had a good one, too.

Love,
Beth

When Dinner Out Becomes a Celebration

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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?
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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!

Love,
Beth

Clinic Day #24

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December 4, 2009

Holy neutraphils Batman!!! Went to clinic today hoping to be over 1000 and found out Tanner had 2000 neutraphils!!! FREEDOMMMMMMMMMM!

We came home after a dose of IV Vincristine and a lumbar puncture with methotrexate under sedation; I was exhausted, but Tanner was raring to go. She went to her best friend Corinne’s house for her family birthday celebration. They ate tacos and ice cream cake and PLAYED. Tanner was indescribably happy. The playdate drought is over, at least for now.

All of Tanner’s counts were great. She had a normal hemoglobin level and her platelets were actually very high. We haven’t seen numbers that high in a while. She started a five-day steroid pulse and oral chemo tonight, though, so the high counts probably won’t last. We will go back to clinic in two weeks (yes, the first time in more than 6 months we haven’t had to go for a weekly clinic visit) to check her counts and adjust her chemo, if necessary. This begins the game of trying to find just the right amount of 6MP and oral methotrexate to keep her counts steadily between 1,000 and 2,000 for Long Term Maintenance.

It felt weird to let her go to Corinne’s house… like she was naked and unprotected. We’ve gotten used to being so careful. It will be so nice to be able to get out and see a movie or even go to the mall at an off time (is there an off-time at the mall during this season?). We are still going to be cautious, though. The last thing we want is to be in the hospital for Christmas.

After an unsteady start, this week has become a good one with lots of things to celebrate. First, there was Santa. Now good counts and some much needed freedom. And, lastly, we have a contract on a house that we are so excited about.

If you’ve been reading Tanner Time all along, you might remember that we had a contract on a house in Brentwood when Tanner was diagnosed in June. The owners were kind enough to let us out of the contract due to the circumstances. Stability was key… and still is, frankly. But, we have a tiny postage stamp of a yard now and have really felt it on the many days when we couldn’t go out to the nearby cul-de-sac and school fields to play because we were afraid to run into other kids. We have been searching for a house with room to romp and found the perfect house with lots of yard and a basement (Tanner loves this) that is on a cul-de-sac. It will mean a lot in days to come to have so much space when we can’t get out.

The house is not in our school district, but Moore Elementary, where Tanner goes, has been kind enough to let her attend the remainder of this year and next year so Tanner can finish treatment before we switch schools. The new neighborhood is just down the road from where we live now, so we will still be close to our Moore’s Landing friends. All these factors were extremely important to us. I think it will be hard when Tanner returns to school. She is a pretty confident kid, but being bald and pale and having a disease other kids can’t even pronounce will test even the strongest self-esteem. She worries about being “different” and is scared other kids will make fun of her. The kids at Moore know about her and have been so supportive and loving. She feels safe there and we are grateful they have understood our situation enough to allow us to do this without making her switch schools immediately.

Tonight, as Tanner went to sleep, she asked me for something good to think about to keep the bad dreams away. I wasn’t stumped this time. I rattled off a whole bunch of things including playdates, our new house, the new dog we’ll get when we get there, going to see Princess and the Frog next week, decorating our Christmas tree, etc., etc., etc.

It’s good to be back.

Love,
Beth

Skyping, Biking and Clipping, Oh My!

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November 2, 2009

No need to worry any more about Tanner’s lack of energy… oh my! It came back today with a vengeance! She is back and spunkier than ever.

We rode bikes yesterday and today. Yesterday, she crashed afterwards and napped for a few hours. Today, she just kept going like the energizer bunny. Watching her bike and play made me realize how much muscle tone she has lost by lying down for those couple of weeks and from the steroids. She is back to limping a lot and having real trouble getting up off the ground. She is also having a lot of pain in her left leg, which is new. Usually it’s her right leg that causes her so much trouble. I’m trying not to worry about the loss of strength at the moment. I think she will be sick enough from the chemo over the next month, that physical therapy will not really be possible. We will get through this month and then try to get her into a therapy program that will help regain what she has lost, or as much as possible considering she will still be taking Vincristine and steroids for the next year-and-a-half.

Tanner was able to videochat with her class this week, which was so awesome! Thank you to Mrs. Franklin for making it possible. It was so cute watching them talk with each other. They use a free program called skype, which is amazing. They talked about their Halloween costumes and how much candy they had gotten. One little girl told Tanner she was sorry Tanner had been in the hospital, to which Tanner replied, “It’s okay, they have lots of videos there and the food is yummy.” We hope to skype often so she can feel like part of the class.

Today, on the way home from dropping Jake off, I jokingly said to Tanner, “Hey! Do you want to go to Sweet & Sassy and get your head shaved?” At first, she responded exactly as I expected her to, “Nooooooooooo!” But, then a moment later, she said, “Yes, I do want to.” After making sure she really wanted to, we went by Sweet & Sassy, but it was too crowded. Tanner really wanted to do it, though, so we went to Snip-its and I went in an explained the situation to the hairdresser, made sure she wasn’t sick and then brought Tanner in.

She was bold and decisive. She wanted this done. She didn’t like the noise the clippers made, so the hairdresser cut it off with scissors. The more she cut off, the more confident Tanner became. It was like those little wisps had just been reminders of her hair and when they were gone she just looked like she was meant to be bald. The short little blond wispies are so fair, you can’t really see them and she has these sweet little freckles on the top of her head from the sunlight reaching through her thinning hair this summer. She didn’t wear her wig at all today. In fact, she took her hat off as soon as she saw her friends and proudly showed them her new smooth head. She told me later that they told her she looked beautiful. Corinne and Olivia – you will forever be on my good list.

There is something so angelic about the vulnerability of a person without hair. You see their eyes, their smile, their soul more clearly. To me, she looks more healthy, not less, than she had before. I found myself crying, not because I was sad, but because she is so beautiful and her spirit is so resilient. When we were done, she rubbed her head, looked in mirror and smiled. It was a moment I had dreaded, but it turned out to be one I will never forget, for completely different reasons than I thought.

Tomorrow is the big, bad day. John will wake Tanner at 3:45 am to eat cheese and crackers because she can’t eat before her lumbar puncture at 2 pm. We will leave the house early to arrive at clinic at 8 am to get her port accessed and begin IV hydration. They will test her urine as we progress until they determine she is hydrated enough to begin receiving the cyclophosphamine. She also has to be hydrated for four hours afterward. She will also receive and IV dose of ARA-C chemo and begin taking oral chemo, TG-6. Then, she will go to surgery to get a lumbar puncture with an injection of methotrexate. Four types of chemo in one day. She will continue to take the TG-6 daily for the next month and will come home with her port accessed so we can give her an IV dose of ARA-C for the next four days. I’m anticipating a very sick little girl, but who knows? Tanner surprises me all the time.

Please send positive thoughts for tomorrow to go smoothly. It really is the worst day of this whole process and I look forward to moving past it.

Love,

Beth

Couch Bound

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October 18, 2009 Poor Tanner hasn’t gotten up off the couch for two days now… the steroids do this to her… she just feels cruddy and is sullen and whiny. She looks so pale and sick, it reminds me of the first month after she was diagnosed. She keeps asking me when she is going to feel better, and unfortunately, I think it will be 3 more days of steroids plus a couple of days for them to wear off.

The cumulative effect of the doxorubicin seems to have set in as well. She has painful blisters on her lip and her hair has begun to fall out again. She’s pitiful and it’s hard to watch, especially knowing that she’s going to feel worse in a couple of weeks.

This Thursday is just a counts day, unless she needs a transfusion (apparently, they expect her counts to have fallen significantly). It’s a week off designed for counts recovery before starting the second half of DI, which is purported to be the worst 4 weeks of the whole 2 ½ year treatment. Two days before Halloween, Tanner will spend all day at clinic. She’ll have to be put under for a spinal with methotrexate chemo. Then, she’ll have to be hydrated for several hours before she can receive an hour-long infusion of a new chemo called cyclophosphamide. Then she has to be hydrated for several hours afterwards. She will also start an oral chemo called TG that she takes for two weeks. She also gets another new chemo called ARAC. We go home with her port still accessed (like going home with an IV line in your arm) and we give her the ARAC through her port every day for five days. It’s a brutal, inconceivable day of chemo that should pretty much mess up Halloween. I figure if we did Light the Night in a wagon, we can trick-or-treat in a wagon, too.

So, it’s hard to comfort your hurting child when you know what’s coming around the corner. We’ve explained to her that this is the hard part and that we have to just dig deep and get through it.

Moore Elementary School has been our bright spot in the last few days. Yesterday, Tanner’s at home teacher, Mrs. O’Hara, brought a book that a second grade class made for Tanner. They made her their star of the week and each child drew a picture and wrote an entry about why Tanner is their star. They obviously had read the blog and looked at the pictures because they wrote about her doing hip-hop and ballet and told her that she is pretty and a great reader. This stuff is priceless and I know we will get it out and read it when times get tough. The school has also shown a Charlie Brown movie to some of the classes about a little girl with leukemia. They brought it for us to watch; I’m going to look at it tonight and decide whether it would be a good thing or too close to home. We so appreciate them wrapping their arms around Tanner this way. She really loves it.

In this journey, we have found, there are some times when it is easier than others to laugh and find joy in life. In the times when it is not so easy, I try to find humor wherever I can. So, I’ll share with you what has kept my sense of humor today… Tanner’s steroid-inspired appetite. While I have written this post, I have stopped twice to make food for her… once to reheat tater tots and once to make a pizza which she asked me to start making while she was eating the tots so it would be ready as soon as she was done. Too funny!

Please pray for us… I woke up this morning with a sore throat and am trying to keep my distance from Tanner. No germs, no germs, no germs.

Love,
Beth

You Can’t Stop Progress

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October 13, 2009

Tanner and I dropped Jake off at school this morning and, after stopping at Sonic for our usual drink orders, headed to Sweet and Sassy for a haircut. She has been feeling really good the past two days and I wanted to do something special on our day together. Tanner has not had her hair cut since long before she was diagnosed, and it certainly didn’t seem prudent to cut it while it was falling out, but since she has held on to it so well, I thought it could benefit from a little trim to make it look prettier.

Amazingly, the hairdresser told me that Tanner is growing NEW hair. Sure enough, I look and little sprouts of hair are standing up all over her head. How can this be? With as much chemo as she is processing at the moment, how can something be thriving?

Then, I thought about how in some ways, I feel as if we have been standing still for the past 4 ½ months. Waiting… lots of waiting… for doctors, for medication, for the worst of this to be over so we can try to pick up our life and resume some normalcy. But, unbeknownst to me, Tanner has not been waiting… she has been growing. She is too little to understand what this process should be doing to her body, to her life even… so she does the only thing that kids know how to do… she grows.

Her homebound teacher, Mrs. O’Hara, told me yesterday how pleased she is with Tanner’s progress lately. The two of them have found a rhythm that, if anything, is allowing Tanner to progress in her schoolwork at a faster pace than traditional schooling would allow. Her reading is improving by leaps and bounds and she is a spelling demon. At a time when I worried that she would fall behind her classmates, she continues to shine and grow.

I have also noticed a new maturity in the past few weeks. She seems calmer, somehow. Some of the frantic energy that gets her into trouble seems more in check than normal. She seems to be thinking more before acting or speaking. I haven’t had to discipline her in quite some time and it is nice for it to be so peaceful.

So, while I’ve been busy trying to just hang on until Long Term Maintenance, Tanner has quietly moved on with things. I could take a lesson.

I went to a Board Meeting for Jake’s school tonight and it was so nice to talk about something other than cancer. I probably need to make a better effort to keep growing during this time, too.

Over the weekend, Tanner received cards from a 4th grade class at her school and from her own 1st grade class that meant the world to her. To see that she is missed and the kids want her to come back made her light up. She read the cards over and over again, smiling. It’s the first time, I think, that she has felt missed at school.

So, we’re putting last week behind us… it was rotten, but we made it and that’s what counts. I am a firm believer that it doesn’t matter how messy it looks while you’re making it through, it’s the fact that you came out the other side that matters.

Now, I am going to sleep in my daughter’s room… again… because she can’t sleep without the dog. Anybody have a sleepy dog for rent?

Love,
Beth

Lemonade for Leukemia

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Lemonade for Leukemia

Lemonade for Leukemia

September 28, 2009 This afternoon, Tanner, Jake and I made a pink sign that said, “Lemonade for Leukemia.” Then, while Tanner had school with Mrs. O’Hara in her classroom, Jake and I made lemonade and packed the wagon with a card table and chairs, cups and Leukemia and Lymphoma Society red bracelets.

At 5:10, we pulled the wagon across the street and set up shop. An hour later, we packed back up, having collected $259 for Tanner’s Light the Night Team. Yes, you read correctly… $259!!! Tanner is so excited. We came home and I thought after dinner we would count up the money and make the donation on-line. But, Tanner had other ideas… she wanted to know if she could have the loose change that John and I throw into various containers throughout the house. Needless to say, we’re taking it tomorrow to Kroger to put it in the Coinstar machine to be counted.

But, here’s the best part… she lost a tooth today (that’s a whole other story) and we put it under her pillow for the tooth fairy. After putting her to bed, I came down to eat dinner and she showed up on the balcony and said, “Mom, I want to write a note to the tooth fairy to ask for extra money for Light the Night. Can you help me?”

So, she dictated the following note:

Dear Tooth Fairy,
Please leave extra money so I can get ahead of the other team and have the most money for Light the Night.
Love, Tanner, Jake, Mommy and Tanner

She asked me, while I was writing the note, why I kept laughing. I wanted to tell her that I loved her competitiveness, her never-give-up attitude and her wonderful innocence in thinking that we could somehow make up the $4,000 that separates us from the first place team. That is the attitude that will help her come through this stronger than before and I love seeing it.

So, look out! Tanner Page is on a rampage to be the high dollar fundraiser for Light the Night this year.

I want to thank my friend Robin Embry for putting together this Light the Night team for us and all my dear friends at Lovell Communications for jumping in to help. I don’t think we would have ever done this without her and it has turned out to be the most positive thing for us. I know that I’ve dedicated a lot of blog space to this event, but it’s not just because we want so badly to see this cancer eradicated. This fundraiser has given us, and especially Tanner, something positive to focus on and has empowered her to feel like she could have some effect on this disease. That is priceless and we thank everyone for helping her feel this way.

Now, excuse me while I go find my wallet and make sure the tooth fairy is generous.

Love,
Beth

Stir Crazy

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August 20, 2009 It’s just been three days since we’ve been on these new precautions due to Tanner’s low counts, and already, we’re stir crazy. We like to go, go, go here at the Page house and it’s hard to find someplace to go right now. So, this morning, after our plans to go swimming had been foiled by the impending storms, we were verklempt. What do you do when you can’t really go anywhere?

We decided, after playing all morning at the house, to go out for a bike ride before lunch. Our neighborhood is right next door to Tanner’s Elementary school and you can see the playground from the end of street. Not thinking, I led my little troop on scooters and bikes down to the cul-de-sac which borders the school. Tanner and Jake were ahead of me, as I was on foot pulling a wagon. When I rounded the corner, Tanner was standing with her back to me, off her bike, facing the playground where I could hear schoolchildren shrieking and laughing. I watched her tiny shoulders droop and saw her bike helmet slide to the ground. She sunk to her knees and curled up, crying, but still staring at the playground, where she should have been playing.

I approached her slowly, kissed her head and pulled her into my lap. “I’m so sorry, T,” was all I could think to say. She cried for a little while, then got up, threw her helmet in anger and began running toward the playground. “I can go there if I want. I don’t care if I have leukemia!” she yelled. I just let her go, knowing she wouldn’t get far. She stopped and lay down in the grass, facedown.

Just then, a mother of one of Tanner’s classmates who had seen us from the parking lot approached… a welcome distraction. She chatted with Tanner, telling her how much her classmates missed her and were waiting for her return. Tanner warmed up gradually and was ready to show off her new “two-wheeler” bike riding skills when Jake fell and skinned his knee. Lots more crying. Then, Tanner, waving at our guest, yelled, “Watch me ride!” Right before the chain fell off of her bike. Seriously.

Are you there God, it’s me, Beth Page. I think you’ve forgotten about us down here. A girl could use a break now and then, you know?

Needless to say, we went home. Tanner crammed in the wagon, with her disabled bike resting precariously across the edge. Jake riding his scooter with his bloody knee, crying, “I’m bweeding.”

In the end, though, it turned out to be an okay day, despite a rocky start. We ate lunch, Jake took a nap, Tanner played a new computer game and did some homework. Later, we went back down to the cul-de-sac (yes, we are gluttons for punishment) after having repaired the bike and applying a large band-aid, and ended up flying a kite and playing on the school playground with neighbor kids.

Then, the ducks came back… for the fifth day. We didn’t have any bread this time (we’ve given away all we had to them on previous nights), but the neighbor had ritz crackers and we fed them those. Seems those duck have taken up residence.

The Vincristine continued it’s assault on Tanner’s legs today. She fell in the morning, saying her foot suddenly hurt and she could not walk on it. We rested for 5 minutes and it was okay, but it’s just evidence of the neuropathy that the Vincristine causes. I noticed her running in the field today; she is looking awkward again. And, at bedtime, her right leg failed her on the way up the stairs and she fell. She asked why she was having so much trouble on the stairs. “It’s the Vincristine,” was all I needed to say. She knows what that means, and although it frustrates her, she accepts it.

Even though what happened at the playground was sad this morning, it marked an improvement in her ability to articulate her emotional pain appropriately. Two weeks ago, that would have ended in a giant temper tantrum and I would have been the punching bag. Today, she threw a helmet in anger and let me hold her while she cried. A vast improvement that I think we can attribute to the play therapy. The therapist feels like she is working out some of her fears through play, and that just being able to express it in some way is a relief to her.

So, it’s two steps forward and one step back… or maybe the opposite today. We’re hoping for sunshine tomorrow so we can try swimming again in the morning.

Note to self: do not go to the cul-de-sac during school hours… just too painful.

Love,
Beth

School Days

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August 18, 2009 Well, it finally happened. The “good counts” bubble we were living in popped. Tanner’s neutraphils (big infection fighting white cells) were down to 610 from 1500 last clinic visit. Somewhere around 4,000 is normal, and 500 or under is considered neutrapenic, which means you almost have no ability to fight infection. So, 610 is pretty low. They were unable to give her methotrexate (one of the two chemos she is currently taking) today since she was under 750. They were supposed to be increasing her dose of methotrexate every 10 days during this phase until she could no longer tolerate it. So, now they realize that Tanner is very sensitive to this chemo and they will have to adjust their dosages for her. She got Vincristine today, since it doesn’t really affect counts much, but will wait until next visit to see if her counts return to an acceptable level to start the Methotrexate again. They will give her a lower dose this time and go from there.

This sounds really bad, but actually isn’t. I mean, it stinks for the next 10 days since we will be more severely limited about going out (no more trips to Target or the grocery). But, it means that since her body and her leukemia are extra sensitive to the methotrexate, she will receive less of this drug for the remainder of her treatment. The doctors believe it will be no less effective, she just requires less than most people to do the job. This is a chemo that will be part of her treatment plan for the duration, so less chemicals in her little body is a good thing.

Of course, the low counts just had to coincide with Jake getting a cough and runny nose… of course. Have you ever tried to keep a six-year-old and a two-year-old away from each other when they have no one else to play with? After today, I can say, neither have I. I finally settled for them sitting at opposite ends of the sofa when they were playing Wii or watching TV. The rest I’m just trying to live with.

Her red counts are going strong, though, so she still has lots of energy and feels pretty good. The Vincristine, however, is definitely making itself known. She is getting slower and slower up the steps, the rash on her hands and feet is back and her hair is starting to fall out again.

We’ve had a busy couple of days. Her homebound teacher came for the first time on Saturday for an hour-and-a-half. The day before, Tanner, Jake and I went to Target to buy school supplies. We took the supply list, just like we were going to attend school and bought everything on that list — eight large glue sticks, 3 boxes of 24 crayons, a 6-inch ruler, etc. I think that made Tanner feel like she was ready for school. Then, we went home and made a school room in my office. We put in a table and chairs for both Tanner and the teacher, posted a big map on the wall, and set up all her supplies. She had a lot of fun putting it together and played in it for a long time afterward. We’re going to keep decorating it until it looks like a real school room.

Tanner and Mrs. O'Hara at work

Tanner and Mrs. O'Hara at work

Tonight I went to a parents meeting with Tanner’s teacher at school. We went over all the curriculum they would be covering and I almost cried (I didn‘t cry there; that would have been embarrassing. I cried at home where it is acceptable!). She would love this class and the many fun things they are doing. Tanner loves to belong to something and to be a part of the team (well, she actually likes to lead the team, but someone has to be in charge). Then, I started thinking, how in the world will she be able to keep up with just 3 hours a week of tutoring plus homework? It’s unbelievable what a first-grader learns these days! I think we were just learning how to sound out words, if that, when I went. Good grief, I had to think hard on some of the questions in their math workbook! But, the school is being so awesome about looking for ways for her to connect. She actually has a desk and a cubby with her name on it, so the kids know she’s coming and is part of the class. I’m going to try to take Tanner to see the classroom this week and she will love that.

Tonight, when John came home, he burst in the door talking about ducks down the street in our neighborhood. Ducks? We don’t have a pond here. The neighborhood backs up to the Harpeth River, but these ducks were walking down the street a good ways from the river. They grabbed bread from the fridge and headed down the street to feed them. Sure enough, these ducks seemed familiar with the bread scene and let them get fairly close before they finally flew away. It is so like my husband to run down the street in his suit, barefooted kids and all, to seize an opportunity and make the most of it.

Who would have ever thought you would see ducks just walking down the street in our waterless neighborhood? Who would have thought our daughter could get a disease that only strikes .004% of U.S. children each year? Strange things happen. Maybe it’s what you do with them that is most important.

Love,
Beth