Category Archives: good days

Eerily Normal

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zoo 09August 31, 2009 The other night, I said to John, “It’s almost like you could forget there’s anything wrong with her.”

Things have been so normal. She feels really good, has great energy, and has really leveled out emotionally. We’re so grateful. It’s more than we ever hoped for at this point.

She had a dance lesson Friday, which she loved. Played with a friend all afternoon. We went to the zoo Sunday morning before everyone else got there. It was cool and empty and wonderful. She played soccer and ran around a field with friends yesterday afternoon. She’s a little slow and a little awkward when she runs, but she runs, which didn’t seem possible just two months ago when she could barely walk.

John’s reply to my pointing out how pleasantly surprised I am by Tanner’s well-being was that it seemed, “Eerily normal.”

That may seem an odd comment for a situation we are so thankful for, but it struck just right for me.

It seems normal if you could forget about the medicine 3-5 times a day, or her pale skin or her thinning hair. The frequent stomach aches and nausea. The fact that she goes to the bathroom 25 or so times a day or that she wakes up 3-4 times a night.

I think it seems an eerie normal because we don’t trust it. We feel certain it won’t last and behind it lurks the constant worry that any small fever or illness could send her to the hospital immediately.

Today is a good example. After feeling so great yesterday, she woke this morning with a sore throat and joint pain in her legs and feet. I’ve had to help her to the bathroom all morning and I can‘t tell whether the sore throat is from emerging mouth sores or is an infection. See. Eerily normal.

But, overall, we are grateful beyond belief that she is as able as she is. It is so much more than we ever hoped for when we began this journey three months ago.

Love,
Beth

This is Jake’s Day

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Jake's first day of school

Jake's first day of school

August 27, 2009 Recently, my hairdresser told me that my hair was falling out, likely due to stress. Tanner overheard me saying this to a friend and asked me tonight what stress meant. I told her it meant that I worried about things.

“What do you worry about?” she asked.

“I worry about you,” I said.

“Because I have leukemia,” she stated. She didn’t ask. She knows why I am worried about her.

“Yes,” I said. “And, I worry about Jake.”

“Why do you worry about Jake?” she asked. “He doesn’t have anything wrong with him.”

“I worry that Jake gets forgotten sometimes,” I said. “It’s hard for him, too, honey.”

Tanner looked puzzled.

“Tanner, did Jake get a present in the mail, today?” I asked. She shook her head. “It was his first day of school today, but it was also your clinic day. Do you think I got more calls and emails about his first day of school or about your counts today?”

“My counts,” she guessed, wide eyed. “Why did people do that? It was mean!” she said, concerned for her little brother.

“No, honey, it isn’t mean,” I said. “Leukemia is a pretty big deal and people want to know how you are doing, because they love you.”

“A bigger deal than a first day of school,” she said.

“Yes,” I agreed. “But, Jake’s first day of school is still a big deal, especially to him. And, I worry that even Daddy and I forget to make a big deal for his stuff sometimes.”

As I said this, I remembered how I had pulled Tanner’s old nap mat out from under a bed the night before and washed it for him to take to school this morning. I had searched for weeks online for that nap mat when I bought it for Tanner, trying to find exactly the right mat, but I had totally forgotten about getting one for Jake and decided at the last minute that Tanner’s hand-me-down would do.

This was a risky conversation I had blundered into; I wasn‘t at all sure I should be having it. I didn’t want Tanner to feel guilty about the situation, but I really thought she might be able to understand that this has been hard for Jake, too. So, I waited with baited breath to see how well she would get my point.

After a moment, she said with a smile, “I’m going to give him some of my presents tomorrow.”

Whew. She understood and she responded exactly as I had hoped she might. She loves Jake fervently and he is fast becoming her best friend. She actually already shares almost everything she is given with him. These days, they often have no one else to play with; and they find ways to cross the age gap between them and find common ground. And they fight, of course, but what siblings don’t?

So, today was Jake’s Day… his first day of school. He was a little clingy when we first walked in, but was fine once he saw a particularly appealing “monster twuck” and didn’t even say goodbye when I kissed the curls on the back of his little head. The note from his teacher at the end of the day said he was “happy and playful.” That’s my boy. He took a nap on his nap mat for the first time and told me the teacher said to “shhhh and cwose my eyes.“ He also told me that Seth was his new “fwiend.” His paper crayon taped to the floor to mark his spot for lining up is “bwue.” Big stuff.

This is Jake’s day. If you want to read about Tanner‘s clinic visit, you’ll have to note the postscript after my sign off. Today, Jake gets to be first.

Love,
Beth

P.S. Tanner had a great day at clinic today. Her neutraphil counts were up to 1300 from 610, so she was able to take both types of chemo today. They reduced her methotrexate dose by 20%, to see if she tolerates it better this time. She was a champ and I was really proud of how brave she has become with all of this. The two chemos really messed with her stomach, though, and we had to stop several times while driving home from the hospital and on the way to pick up Jake for restroom breaks. But, she felt pretty good at bedtime so I’m hopeful she’ll handle this round as well as she handled everything else.

The Energizer Bunny

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August 21, 2009 Just a quick post to say, again, that Tanner’s energy never ceases to amaze me. We went letterboxing this morning (thanks to all those sweet people who responded to last night’s post with plans for today… I have the best friends imaginable) with friends and rode bikes for a mile or more, then played on the playground. Tanner wanted to ride another trails that loops around the playground, but I was pooped from running after bikes and we went home. Had lunch, nap for Jake, quiet time for Tanner. Then, Tanner and I danced for a while. Then, she danced some more by herself. THEN, we went swimming at the Whitlers’… for two hours (sorry guys, we had no idea we were there that long). — (cruise director response: y’all can stay all day and all night anytime!)
She got a little sleepy in the car on the way home, but rebounded as we were eating and was chatty Cathy at bedtime.

HOW IN THE WORLD?!!! I was tired and I do not have leukemia.

One of my friends commented on Facebook that Tanner used to have the energy of 5 kids, so on chemo, she probably has the energy of 2. I think she’s right.

One funny side note… Yesterday I was broaching the dreaded task of trying to sort out all the medical bills and match them up with EOB’s. (May I just say, I will never again complain about our insurance premiums. Thank God and Franklin American Mortgage Company for good insurance, a good job and a supportive work environment.) Anyway, I came across a bill from Vanderbilt for the night that Tanner had to spend in the hospital because she had a fever. The charges were $8,700 (for ONE night), but our portion to pay was…. $1.00. That’s right, one dollar. Vanderbilt sent us a bill for one dollar! Too funny. I couldn’t bear to write a check for $1 and waste a stamp on it, so I paired it with another bill and wrote one check for both.

Again, thank God we have good insurance. I read somewhere that average treatment cost for a child with leukemia is over half of a million dollars. After looking at the charges thus far, I can easily believe it will get to that point. I don’t know how a family who is not as fortunate as we are can do this. The financial strain, on top of what you are already going through, must be unbearable.

I said I was going to make a quick update, and I’m already off on a tangent.

Never mind.

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

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

Blessed Normalcy

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Tanners B-Day Party 013July 13, 2009 I woke up this morning thinking how cruel it was that after feeling so good for the past week, Tanner was feeling very nauseated… the morning of her birthday party. But, 5 medicines and a bowl of cereal later, she was back in the game and the rest of the day was awesome!

The Build-a-bear party was the most normal experience we have had since Tanner was diagnosed. She was just a normal little girl having her 6th birthday party with 5 little giggling friends. They screamed, giggled, stuffed bears, sang the birthday song… all the normal stuff. She had a ball and forgot for a little while that she had leukemia.

Part of what made it so normal was the she didn’t need any help from us during the party. She has figured out a somewhat unorthodox, but effective method for getting herself up off the floor and was able to march around with everyone else without drawing any unusual attention to herself. Great fun!

Then, the piece de resistance… we took the training wheels back off the bike and rode the whole neighborhood. We stayed outside from 4:30 to 7 pm riding bikes, playing in the gravel, meeting neighbors and rolling in the grass. This is what I love to do with the kids. I love to be outside, to find unexpected friends and just let the fun happen. It snapped me out of a funk I had been in for days.

How amazing that Tanner is doing these things. Is there really chemo in that pill she is taking every day? How can she have this much energy? I think I had given up hope that she would be able to do these types of things for a long, long time.

We’re basking in it while we can.

Love,
Beth

Birthday fun

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July 9, 2009 Thanks so much for all the birthday wishes for Tanner. I held up a handful of birthday cards that came in the mail yesterday and commented that I had never seen so many birthday cards for one person. Tanner said, “A lot of people care about me.” Amen, sister.

We went yesterday morning to the Dollar Store at an off time when no one was there and let Tanner pick out her plates, cups, etc. for her Build-a-bear party on Monday. She’s inviting a few girlfriends and they’re opening the store early so she can go without exposure to any other kids. (Thank you Build-a-Bear) She’s super excited.

Then, last night we had a family party at the house with pizza and a Sundae bar. Tanner hasn’t been able to see her cousin, Mack, since she was diagnosed because the family has been passing a bug around. So, she was really excited and they had a really good time.

Today was our clinic day. We began the Consolidation phase of treatment today, which will last 4 weeks. Had a dose of vincristine (chemo) and an injection of another type of chemo into her spine. In addition, we started on 6-MP, which is an oral chemo she will take daily for the next month. It all went smoothly, although we narrowly missed not being able to start consolidation today because her neutraphil count was very close. It needs to be above 1000 to start and Tanner’s was 1030. Squeak!

So far, so good with this chemo. She came home and watched a movie while she ate, played on the computer with Jake for a while and then we all went outside to ride bikes for a while. She did just fine on the bike. Needed a little push up the hills and to get started, but otherwise did fine. I so, so hope that this dose of vincristine doesn’t set her leg strength back. She’s gaining so much every day and it’s so normalizing.

Special thanks to my Bunco girls tonight for getting me out of the house for a good time. Good girlfriends are good therapy. Also, thanks to my mother-in-law who came again this week so I can get out of the house, spend some time with Jake and have some help. I’m lucky to be part of such a loving family.

Here’s to more days of birthday fun!

Beth

A Relaxing Day

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July 6, 2009 We took a break from all the festivities to just kick back today and stay in our jammies until noon. We watched Shrek 2, made swords out of toobers and zots and had sword fights, downloaded tic-tac-toe to Tanner’s itouch, packed bags and pretended we were going on a trip, and played the Princess Memory game.

We never left the house, although I did try to get Tanner to go on a bike ride. We put the training wheels back on her bike, since I don’t think she could catch herself if she fell. So sad since she had just been riding without them for about 2 weeks before she was diagnosed. She was so into riding that bike; we went almost every day. Today, when I asked her if she wanted to go ride, she said no and when I prodded her for a reason, said, “I don’t think I’ll be able to push the pedals and I don’t want to know if I can’t.” I just told her we could think about trying again tomorrow. What else are you going to say to that?

I think she probably could pedal on a flat area if she were given a push to start, but I think it will be a lot to swallow given that her 2-year-old brother motors around like nobody’s business. I think, in time, she’ll eventually adjust to the idea and just accept it like she has most things.

Her legs have gotten a little better every day since we stopped the steroids and, I think, since we didn’t have a vincristine dose last week. Vincristine is a type of chemo that tends to cause nerve pain and weakness. It’s been two weeks since she has had a dose. She still can’t get up off the ground or climb the stairs without a lot of help and she falls often, but she is limping less and moving better every day. In fact, today she played Dance Dance Revolution on the Wii and did pretty well. Unfortunately, she gets another dose of vincristine on Thursday, but then doesn’t have another dose for the rest of this 4-week phase of treatment. Hopefully, she’ll be able to gain considerable strength during that time.

She told me today that her friend, Corinne, asked how long she would have to take chemo and Tanner told her 2 years. She said that Corinne was suprised, “She didn’t know I had to take it that long, Mom. I’ll be eight years old when we stop chemo, won’t I?” How I would love for that not to be true. She gets it, though. She’ll be six in two days and she gets it. I underestimate her.

Just a typical day at the Page house…

Love,
Beth