Monthly Archives: August 2009

My Fervent Hope

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August 6, 2011. That is the day that Tanner will take her last dose of chemo. How crazy is that? Crazy that the doctors can pick a date out of the air 2 years from now and say the leukemia will be gone for good then. Crazy that we will be living this new strange life for two more years. Crazy that anybody, much less such a little body, can take that much abuse and survive.

I don’t know if I’ll dance in celebration that day or spend it crying with relief. I’m hoping that the little 8-year-old girl I see that day is happy and thriving and left with as few physical and emotional scars as possible.

I’ve grappled this week, for the first time since the day Tanner was diagnosed, with the possibility that Tanner might not make it through this ordeal. As I mentioned before, I learned about two children recently who died during long-term maintenance after getting infections. These were kids whose parents, I am sure, were certain their kids were strong enough to beat the beast, who were bolstered by the doctors’ assurance that their children had a highly favorable prognosis, who thought their kids had survived the worst of it.

The truth is, it was not the leukemia that killed these kids, it was the chemo. The chemo keeps their white counts so low that they are susceptible to these infections, and it ravages their little bodies so that their vital organs are not strong enough to weather the storm. It is my understanding that it ends quickly for these kids; the infection does it’s work swiftly.

So, as much as I have tried to stop thinking about this, I have had to admit to myself this week, that this could happen to Tanner. That, as strong as she is, as well as she is doing, as low as her risk category is, there is still the possibility that none of this will matter and that the unthinkable could happen overnight.

I think Tanner has been thinking about it, too. She has, for the second week in a row, made cemeteries in the sand box at the play therapists’ office. When asked by the therapist to “Make your world” in the sandbox, she buried little figures and topped them with tombstones. Earlier this week, she asked me to tell her what I liked so she would know where to bury me, and asked if I wanted to know what she liked so I would know where to bury her. And, we wonder why she’s acting out…

We have to find a treatment for cancer that is not as dangerous as the disease itself. Or, better yet, a cure that eliminates the need for treatment altogether. It is my most fervent hope that, as my friend Robin put it, we will look back in 20 years and think how barbaric it was that we treated cancer patients with these debilitating drugs. Heck, why not shoot for 10 years from now?

Whether it is a child or an adult with cancer, no one should have to endure this. No family should have to go through this. No six-year-old should have to worry about where they’re going to be buried if they die.

There has to be a better way.

Love,
Beth

Take Nothing for Granted

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August 11, 2009 Such a nice, relaxing day hanging out with my girl. I think she may have been a little tired from all that running we did yesterday, so we just kind of took it easy today. Went to the grocery store, ate lunch, showed up at the play therapists on the wrong day (oops!) and went to the movies.

The afternoon movie on a school day may become a staple for Tanner and I this fall. It was so nice — only two other people in the whole theatre. We went to see Up! in 3-D. It was a great movie.

I’m glad we took it easy today. Tanner definitely had some moments of not feeling well, although overall, she is taking this round well so far. I noticed today she seemed a little slow going up the stairs and sometimes didn’t alternate her legs on the steps, so I’m afraid the dreaded Vincristine may be making itself known. Hopefully, though, she was just tired. I’m also afraid that she may be developing the mouth sores that plague some people on chemo. She’s been complaining of burning in her mouth when she eats and drinks. It’s a side-effect we saw from the Vincristine during Induction, but it seems worse this time. In fact, she ate no dinner tonight at all because she said it hurt her mouth and she really balks at medicine time now, since that hurts as well. Ugggghhhh. Have I mentioned how unfair this seems?

One more girls day tomorrow and I may have to ask my parents to give Jake back on Thursday. Tanner and I miss him. It’s so quiet and Tanner keeps wanting someone to play with. He’s having a ball, though. He got to go to the golf course with my parents today. Mom said he hit about 50 balls on the driving range and then went back later and hit about 20 more. You have no idea how excited this makes my parents after enduring 3 granddaughters with no interest whatsoever in golf!

I’m enjoying this time with Tanner, though. I think when Jake goes back to school later this month, we’ll have Mommy/Daughter day once a week. Some recent blog entries I have read about kids with ALL who have died during long-term maintenance after developing an infection have really gotten to me. I think I always believed that getting to Long Term Maintenance is our goal and then we coast through the rest. First, the chemo road map we received for Tanner made me realize LTM is no picnic; there is still a lot of chemo during those remaining 1 ¾ years of treatment. Then, hearing about these kids who have died because the chemo has weakened their bodies’ ability to fight infection during Long Term Maintenance have really made me realize that there is no “coasting” during this process. This is really 2 ½ years of treatment; all of it exhausting and painful, all of it as dangerous as it is life-saving.

So, these days, I’m trying to hold Tanner a little tighter, kiss her a little more often, stop cleaning and start playing.

Hug your kids. Tell them that you love them. Take nothing for granted.

Love,
Beth

Unbelieveable!

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August 10, 2009 For some reason, I am beyond tired today, so lucky for you, I’m writing a quick update tonight! Today was the first of three days of mommy/daughter time. We drove this morning to Nickajack Lake where we met my parents for a picnic and had a Jake handoff. I thought he might cry when he realized I wasn’t coming with him, but when I kissed him goodbye and told him to have a good time, he yelled, “Come on, Gwandad, wet’s go!” I think these couple of days will be good for both kids, although Tanner and I admitted we already miss Jake.

Tanner and I got home around 2:30 and were at the pool by 3 pm. I decided the YMCA pool would be safe for her this week, since school has started and there won’t be many people, especially kids, there. So, for the first time this summer, we were able to go to the Y pool. We swam for 2 straight hours and I mean swam. No sitting on the side, no crawling around in the water; we spent most of the time in water over her head. When we left, I was exhausted and thought she was too. But, after dinner, she decided she wanted us all to go for a bike ride together. John and I usually don’t ride our bikes with the kids, since Jake is so little, so this was a special treat for her. We rode all around the neighborhood, then over to the school and around the parking lot and building several times, then back home. She rode up all the hills and blew both our minds. How is this possible?!!! How can someone taking this much chemo still have so much energy? It is almost bizarre.

While her energy level is good, she is definitely experiencing the side effects of the chemo and had some trouble sleeping last night. I had to give her painkiller last night for the first time in 3 or more weeks.

She wants to go see a movie tomorrow… again, something we haven’t done since she got leukemia. We will go at an odd time and throw a blanket over the seats and relish the moment.

I’m going to sleep now to try to rest up and be able to keep up with her tomorrow.

Love,
Beth

Lemonade and a Cookie… 50 cents

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lemonad stand 001August 8, 2009 Since when do kids make $18 from a lemonade stand?!!! I don’t ever remember making more than about two bucks and splitting it with my best friend, Carol.

My friend Ashley had a list of things her kids wanted to do this summer and having a lemonade stand was one of the items that hadn’t been checked off. Since school starts Monday, time was a wastin’ and she invited us to help. The kids made a poster, I made the lemonade, Ashley made sugar cookies and we met yesterday in the median between our houses under the shade of some trees. Then, those girls got to work flagging down cars. Even Jake handed out some cookies. Almost every neighbor that drove by stopped and were generous tippers. They had a ton of fun and when we counted up the kitty, they made $18, split three ways!

Tanner, Jake and I had been to Pinkerton Park earlier that day for a bike ride and a picnic in the shade. It was 91 degrees by the time we got there and I noticed the first signs of the Vincristine creeping in. Tanner got hot quickly and, even though she rode quite a while, the heat eventually got the best of her and I had to send her crying to sit with Jake under the pavilion while I put the bikes back in the car and got our lunch.

The chemo has also started effecting her sense of taste. She handed me a pack of gum she just bought today and said, “It tastes yucky!” Tanner loves gum so I know the chemo changed the way it tastes. And, her medicine “burned” her mouth today, which is also some weird side effect of the Vincristine. That particular chemo has a list of side effects a mile long, and unfortunately, is our mainstay chemo for the next two years.

I got to spend a little one-on-one with Jake today for the first time in a while. I took him to the YMCA pool and we had the best time. Tanner can’t go into a public pool like that so I felt bad taking him and not her, but he needed to spend some time in a pool where he can actually reach the bottom. Tanner and John went for ice cream and to the dollar store to spend her lemonade stand earnings (that 6 bucks was burning a hole in her pocket).

John and I sat on the sofa last night and looked through the fan list for Tanner’s Fcebook page (Friends of Tanner). She has 497 fans and after more than an hour, we finally gave up trying to figure out how all those people know us and went to bed feeling blessed and loved. It boggles my mind that between the facebook fans and those that read the blog directly from www.tanner.celiamusic.net, there are probably 800 or more people wishing us well. We feel all those positive thoughts and prayers and thank you all every day for your support. Some day soon, I hope to use all that support to make difference and save some other family from going through this horror.

And, speaking of all that support, thanks to everyone who prayed for our friend Lily. Lily made counts this week and will be starting school next week on the first day… just like everyone else! Amen.

Love,
Beth

A Long Day for the Right Reasons

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Ready for Clinic

Ready for Clinic

August 6, 2009 Did you ever feel like it’s been about four days since this morning? Today was chock full… of goodness, luckily. Today was clinic day and our first day of Interim Maintenance. Tanner’s neutraphils (big infection fighting white cells) were down to 1500 from 3400 last week. 1,500 is still good for a kid with leukemia, but 3,400 was almost normal. So, farewell freedom… it’s back to precautions. We feel lucky to have had that week, though. It was nice to be able to get out.

I always feel like my preconceptions about chemo have been dramatized by television. I picture rows of people sitting in infusion chairs for hours, receiving IV chemo and feeling really sick. While there are some chemos that require a long infusion time, most don’t. And, there are definitely some kids in there that look like they’re feeling really bad, but many don’t. Tanner received two types of chemo today in less than 10 minutes. No IV pole or anything. The nurse just injects them very slowly from a syringe into Tanner’s IV line which is connected to her port. All done. And, as far as feeling really sick… we haven’t come across that yet as of bedtime today. In fact, Tanner was super active today. We played Wii Cheerleader, swam at the Whitler’s and played with some friends that dropped by after dinner. Chemo?!!! What chemo?!!!

Of course, I’m not naive enough to think this will last. I do believe this phase will be more difficult than the last and the cumulative effect of the vincristine and the increasing dosage of the methotrexate will take their toll. But, for now, you would never know anything’s wrong with her.

I registered Tanner for 1st grade at Moore Elementary this evening. It was bittersweet. I was excited that she got Mrs. Franklin as a teacher and that Mrs. O’hara, the reading teacher, will be her homebound teacher. She also has a great class, with many little friends from kindergarten. But, it made me sad she couldn’t come with me like all the other kids, to meet her teacher and see friends she hadn’t seen all summer.

Tanner made me promise to write down the names of all the kids in her class. When I got home, we got her jammies on and sat in bed with her yearbook and looked up all the kids, her classroom teacher and her homebound teacher. Tanner is a social butterfly and she knew all but two of the kids in her class; and those two were new to the school. She was really excited and I wondered whether she really understands that all those kids will be in class without her for at least half the year.

The school is being so remarkable about trying to make her feel connected, though. They’re investigating the idea of teleconferencing through computers so she can check in with the class once a day, and the homebound teacher said she was going home to read Tanner’s blog so she could learn more about her. Her kindergarten teacher, Mrs. Cope stopped by this past weekend and brought Tanner a Build-a-Bear. She asked if she could stop by once a week during this school year and read with her. Wow! Moore Elementary is a small school and we are so grateful for the feeling of family there and for the love and concern they show us and our daughter.

So, it was a full day, but a good one. Four days ago this morning, I thought we might have had a rough day because of the chemo, but it was a great day. Which just goes to show you how unpredictable leukemia, chemo and my kid are.

Love,
Beth

A Pint of Ben & Jerry’s and a People Magazine

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August 5, 2009 Well, we made it! Our last day of consolidation. We start phase III, Interim Maintenance, tomorrow. It means more chemo, but it’s one step closer to Long Term Maintenance when Tanner should be able to return to school and a more normal life. We’ll take the good with the bad and hope that she handles this new phase as well as she has handled Consolidation.

I’ve been amazed by how many people have commented that our family is handling this with such grace. That’s so strange for me to hear. I think we are handling this as well as we can; we are doing some things right and some wrong and some we’re still figuring out.

For instance, my house is a mess and I can’t seem to get dinner on the table lately. I’m trying to be creative about getting us out as much as possible, but would do a lot better if I planned ahead more and tried to keep some kind of schedule with the kids. Sometimes, I find myself getting immune to Tanner’s regular complaints about stomach pain and nausea. I just mumble, “Mmmm hmmm, I’m sure that hurts,” and hand over the appropriate medication without ever really empathizing. I lose my temper, although slightly less often than Tanner loses hers. Jake has started screaming, “You’re mean!” whenever he doesn’t get what he wants, which he, of course, learned from his sister. I’ve gone two days without convincing Tanner to do her physical therapy exercises. I threatened to sit on top of Tanner and force the medicine down her throat this morning when she balked at taking it. My hairdresser is going to die when he sees how far I’ve let my roots go. And, I’ve found myself starting to feel resentful when I hear the fun things our friends are doing that we can’t do because of the limitations of this disease.

It sure doesn’t feel very full of grace over here.

We’re just muddling through, or at least I am (John’s more together than I am). I’m trying to use this blog to regroup every night; to try to make sense of what happened in the day and vow to do better tomorrow. I usually don’t succeed, but a girl can try. I’m not complaining, just keeping it real. It’s no inspirational hallmark card at the Page house these days… just four people and a dog trying to make a hard thing work. It’s a messy job.

Having said all that, I still feel blessed… that I have such an amazing husband and two smart, funny, beautiful kids (even if they’re not all that well-behaved these days), that I have such supportive friends and family, that my child doesn’t have t-cell ALL or AML or any of the other versions of leukemia that are worse than pre-b ALL. And, of course, that you can still buy a pint of Ben & Jerry’s and a People magazine at the grocery store when you’ve had a bad day (On tonight’s menu… a pint of Whirled Peace).

Love,
Beth

Monkey Business

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Kim, me and Beth relaxing at dinner

Kim, me and Beth relaxing at dinner

August 4, 2009 I’m back! It was a great weekend! We went to a big, beautiful cabin in the mountains of Asheville, NC. Lots of lounging, shopping, eating, laughing, girl talk, sleeping, more lounging, free flowing wine and a beautiful view of the smokies to boot. We spent much of our time trying to think of names for Kim’s two goldendoodle puppies that she will bring home soon. “Rhett and Scarlet” and “Brandy and Whiskey” were Kim’s favorites, although Beth and I maintain that no matter what she decides, we are calling them “Jethro and Ellie Mae.” After all, we were in the “hills, that is.”

Wouldn’t have been such a great time without Beth and Kim and wouldn’t have been possible without my awesome husband and mother-in-law at home taking care of the kids.

I did miss the kids, though and I was happy to be home. Things seemed to go very well at while I was gone. I think the backpack making party and barbecue afterward was the highlight for Tanner. Everyone seemed to have a good time and they made a lot of backpacks to boot. I love this picture of them. Tanner and Jake look like they had a huge time, as usual. Thanks to our church family for making this possible for Tanner.

Tanner, Jake and Friends make backpacks for the needy

Tanner, Jake and Friends make backpacks for the needy


This week has been a nice break from the normally restrictive nature of our outings. With Tanner’s counts at an almost normal level (although her immune system is still more compromised than normal), we were able to cautiously get out a little more. We ate last night at Pie in the Sky restaurant where the kids get to play with pizza dough while they wait for their pizza. Then, this morning I took the kids to Opry Mills mall to buy new shoes and go to the Rainforest Cafe. Normally, this is a huge hit, but it was nearly a bust today. I forgot to bring Tanner a sweater and she was so cold I wrapped a paper napkin around her shoulders while Jake spent the whole time very nervous that the animatronic monkeys were going to leave their perch and attack us. He didn’t even eat since he had his fingers stuck in his ears the whole time saying, “It’s too woud” over and over again. When we threw in the towel and decided to take the food with us and eat it in the car on the way home, he said, “Wets get out of here!” Tanner and I laughed about that the whole way home.

This afternoon Tanner had her friend, Isabella, over for a playdate. They made a hair salon in the bathroom and washed each other’s hair and then put on an impressive show for John, Jake and I complete with dancing, piano, acting and singing. Tanner sang the national anthem. It was quite a patriotic moment.

We’ve been incorporating some of the play therapist’s suggestions into handling Tanner and it does appear to be improving things. There are less tantrums, and although she is definitely still angry, she seems to be able to better get hold of herself. She went to talk with the therapist today. I won’t find out what they talked about until next week, but Tanner had a good time and wants to go back so that’s a good sign. Hopefully, she’ll be able to unload a little anger at these sessions and we can find a way to talk to her about this whole rotten thing. It would be nice to be her partner in this instead of her punching bag.

Poor Jake has definitely started to feel the tension in the house and is acting out as well. (I’m just waiting for the dog to rebel next!) It just breaks my heart. He is the sweetest little thing ever and it’s not in his nature to act this way. Thankfully, he’s pretty easy to deal with and I’m hoping a little visit to Grandmom and Grandad’s next week might give him the undivided attention he deserves. It’s hard for a little fella to not get lost in all this, and we need to remember that his needs are just as important as Tanner’s even if she is sick.

Tomorrow is another landmark in this long journey. It is the last day of Consolidation, the second of five phases of treatment Tanner will endure over 2 1/2 years. It’s also probably the last day we’ll have for a while that she’ll be feeling this good. Thursday, provided her counts remain above 750, which I assume they will, we will start Interim Maintenance. That day, August 6, will mark the first day of exactly two years of remaining treatment. They count it from the first day of Interim Maintenance and go two years to the day from then. Crazy how they know exactly how long to treat leukemia to give you the best chance of avoiding a relapse.

Again, please pray for Tanner’s friend Lily. She has only a week to get her counts up high enough to start school on-time and still isn’t there yet. I just know from our experience how important it would be to her to be there on that first day and to be part of the class from the start. This is so hard for these children… not something an 8-year-old or a six-year-old should have to worry about.

Love,
Beth