Monthly Archives: June 2010

You Get What You Need

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June 27, 2010

We thought we wanted a golden retriever… a goofy, playful, ball chasing, loveable family dog. But, as Cesar Millan, the Dog Whisperer, once said on his show, “You don’t get the dog you want, you get the dog you need.” (I wish I could do the accent; it sounds better with the accent.)

Domino has turned out to be exactly what we needed. He isn’t actually all that playful; I think being kept outside by himself for the first couple of years of his life didn’t teach him much about playing. He doesn’t even seem to notice when a ball bounces by his head. But, he is silly, which is actually more amusing. He is unbelievably adorable and super soft. He doesn’t really play with the kids, but his is unflappable when they play. He is the first dog I have ever seen sniff a tambourine when a child was shaking it… seriously. He is unfailingly gentle, completely bombproof and always ready for loving in any form. The kids can lay on him, poke his feet, pull his ears… it’s all good with him… he takes it as love, which is how it’s actually meant.

John ruining the dog

So, he may not be what we thought we wanted, but he is exactly what we needed. And, we have had a ball with him this weekend. The kids are taking turns having him on their beds at night while reading books… he loves it. Jake put his blanket over himself and Domino today and they lay on the floor and watched TV together.

If you or anyone you know is looking for a dog, I can’t recommend the Death Row Dogs program enough. You can find it at McMuttigans.com. The whole experience was wonderful, from meeting the inmates to getting our super dog. He is very well trained; he knows all his obedience commands and basic good manners, is house-trained and crate trained. He doesn’t jump on you, or rush at the door or chew stuff up; it’s been a wonderful way to get a dog. They get 25 dogs every three months and Domino was the 484th dog they have rescued from euthanization. People come from all over the country to get their dogs and we feel lucky to have found them. They had four dogs from Domino’s class that had not yet found a home, including a beautiful chocolate lab. Surely, someone we know needs a trained dog….

Too hot to do anything this week, but swim and maybe, go to the movies. We go back to the clinic on Thursday for a counts check and, hopefully, they’ll be up so we can get a little more freedom after that.

On a sad note, Ellie, the little girl I asked you to pray for last week, passed away the very next day after my post. I don’t know what else to say about that, except to say cancer sucks.

Love,
Beth

Yay for Domino Day

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June 23, 2010

Domino in the car on the way home

Finally, he’s here. Domino. Staring at me as I write on the computer. Trying to get me to scratch his ears. He is, believe it or not, cuter in person. And, so gentle and laid back. The Dog Whisperer would not have approved of his introduction to our household. Four kids screaming and playing with loud toys, six adults, everyone swarming him at once, Jake hugging him and laying on his back. But, he took it all in stride. He’s just great.

I’ll write more tomorrow about our experience at the prison. It was really inspiring. But, right now, it has been a very long day and there is a spotty dog who will expect a long walk at 6 am, so I’m going to have to stop being such a night owl from now on.

Sorry we didn’t take better pictures. We didn’t get home until 4:30 with Domino and the kids were so excited. We had a small dog fight with the lab next door and then we, ever so briefly, lost our new dog. Jake left the door open and he slipped out. John and I cornered him one street over, but it was a close call. Whew! So, it was a little crazy and we hustled the kids off to bed while we gave Domino a little break in his crate and then realized we forgot to take pictures. Tanner had trouble sleeping and came down later and we snapped a shot of the two of them, so that’s really all we have. We’ll take better pics tomorrow and I’ll write about meeting the inmates that trained him. They did a good job.

Love,
The Happy Pages + a Spotty Dog

1 Day to Domino

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June 22, 2010

Tomorrow is Domino Day… long awaited and much anticipated. Tanner was so excited, she couldn’t go to sleep tonight (the steroids didn’t help, either!) and I find myself in the same position. We’ve been on a 10-day countdown on the chalkboard in the kitchen, and today the kids and I washed down our dog crate to get ready for the big day. John and I will go to the prison tomorrow to meet the inmates that trained Domino and bring him home. The kids made thank you notes for them today. Jake put Star Wars stickers all over them and Tanner made cut out stars. We hope they will let the inmates have them so they can remember what a good thing they have done for a little girl with leukemia and her family.

The kids have been at Vacation Bible School for the past few days. They are having such a good time. I’ve helped with crafts those two days as well and really had fun. Tomorrow is water fun day at VBS, so they are going to have a double-great day, between that and the dog.

We had a great weekend, too. Tanner has been on steroids and feeling some of the effects of the Vincristine, but she accepts it so well now and we know to just move on and it will get better. She can’t really take the heat (and it’s HOT here!) so water activities or indoor activities are the best bet. Saturday, when I came back from running errands, John, Tanner, Jake and four neighborhood kids were in the backyard on our new playground sliding down the slide into the baby pool at the bottom. They were having too much fun! It’s the simple things, right?

Sunday, we gave John a day off for Father’s Day… no simple task, I promise you. I had to practically run my poor workaholic husband out of the house for some much needed R&R. While he was gone, the kids and I went to the grocery store to buy ingredients for seafood gumbo, his favorite food. He came back at dinner time to posters on the door, made by the kids, a balloon, cards and gumbo. Happy man.

I have to tell you about something that happened on Friday that strengthened my belief in Tanner’s vast resolve and determination. She had chemo, if you remember, on Thursday at clinic – Vincristine through her port. Then, Thursday night’s medication concoction – 6mp (chemo), methotrexate (chemo), neurontin (for neuropathy), mepron (antibiotic to prevent pneumonia), amoxicillin (antibiotic for strep throat), Claritin (for allergies), dexamethasone (steroids), pepsid and zofran (for nausea). Good grief! I expected her to be down for the count on Friday. She woke up a little groggy, but after running some errands in the morning, we headed to the YMCA pool for a swim. We got there and Tanner decided she wanted to take the swim test that would allow her to go down the slides and climb the rock wall.

“Today?” I said. “Why don’t we do it another day?”

“No, I want to do it now,” she said.

The lifeguard showed her what she had to do and my chemo-ridden child jumped in the pool and swam the length without stopping or touching the bottom and pulled herself out on the side. The lifeguard and Jake and I cheered her on from the side, following her as she swam down the pool. She looked, at the end, as if she might give up, but stuck it out. I couldn’t have been prouder. I looked at the lifeguard with disbelief and said, “She has cancer and had a boatload of chemo yesterday.” He bent down and told her “Way to go!”

We were putting on sunscreen later and I told her how proud of her I was. Of course, I teared up. Tanner’s response… “Thank goodness you didn’t do that in front of the lifeguard.” Cue eye rolling.

So, we’ve had fun despite the low counts and the steroids and chemo. It beats the alternative, right?

On a more sobering note, please pray for the family (including the twin) of a little girl named Ellie, whose poor cancer-ravaged lungs will not last much longer. Her mother, just days ago, was blogging how she was not ready to give up on a miracle and was still encouraging Ellie to fight. Today, I read where this same mother has not only had to accept the inevitable for her daughter, but has courageously swallowed her own grief to try to help her daughter accept her fate as well. Imagine trying to assure an 8-year-old that it is all right to die now. Cancer is heartless.

Love,
Beth

Clinic Day #35

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June 17, 2010

Protected during treatment by Mr. Larry's St. Christpher medal

Tanner’s counts had just come up to 710 today from 650 last week, BUT, Dr. Mixon felt that given how good she feels and how great the rest of her numbers look, and the fact that it is summertime, that we should send her to Vacation Bible School next week – hallelujah!!!

So glad we didn’t have to disappoint her again. She is really excited about going and it will be Jake’s first time to go, so he is excited, too.

She got her dose of Vincristine today through her port and will start steroids tonight. It was a very smooth visit, but I am thoroughly tired anway.

Jake spent the day with Aunt Beth (thank God for Aunt Beth) and had a ball.

Now, just keep your fingers crossed she doesn’t get sick again.

Love,
Beth

Love Letter to Tanner

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June 15, 2010

Mothers and Daughters have it tough. Our relationships are not always the easiest. Maybe it’s because our daughters fall too close to home that we find it somewhat easier to parent a boy, or at least I do. But, what I hope Tanner realizes, in the middle of all the mom-daughter tussles, is that I love her completely and really do want the best for her.

The beauty of this blog is that maybe someday she’ll see that. That even though it didn’t always come out right, I was always doing my best and that anything I did came from a place of love.

So, this post is a love letter to Tanner. A letter that she can read when she’s old enough to understand some of the grown-up things I write about here, and old enough to forgive her Mom for the blunders and maybe even understand where I was coming from. But, mostly, for her to see how much — how very much — I love her.

Dear Tanner:

I hope by the time you read this, that this leukemia business is far in our past and we have moved on to arguing about what you will wear to school or whether it’s okay to wear makeup or not. I’m thinking you won’t remember much about being treated for leukemia, but I know it will have shaped who you are. Maybe reading this blog will help you understand some of things you do, and some of the things Daddy and I have done.

I don’t know who you will become, but I do know one thing… you will be strong. You would have been strong before this damn cancer, but after you will be a force to be reckoned with. There will be nothing you can’t do.

Being your Mom is a privilege I wouldn’t trade for all the power jobs or peaceful Saturday afternoons in the world. If it hasn’t always felt that way to you, I apologize. Being a Mom, and maybe particularly a stay-at-home Mom, is decidedly unglamorous. And, I’m a pretty lousy homemaker, so I probably gripe about that part. But, never doubt that I stayed home with you and Jake because I wanted to… desperately. I didn’t want to miss one minute of the wonder that has been you. I didn’t want to look back and have not been a part of all the things that made you grow into the wonderful young woman I know you are becoming.

I’m sure it won’t always be easy for us… we are too alike. You have inherited my stubbornness, which makes us a little like gasoline and matches at times. As long as you can remember that being right doesn’t equal happy (I’m still trying to get that one down), your stubbornness can serve you well. It will help you not give up, but instead work harder than everyone else. And, it will free you to be yourself all the time and not care too much what other people think.

I’m going to try to practice what I’m preaching here and admit that I haven’t always been right when it comes to being your Mom. You are a hard cookie to parent with a strong will, but a bright spot of joy also, and I have often struggled with how to teach you right from wrong without breaking your beautiful spirit. If I haven’t done it right, it wasn’t because I didn’t want to or because I wasn’t trying or because I didn’t care. It was because I am human, and what you will learn someday is that there is no instruction manual for raising a child and we all just do the best we can. In particular, there’s no instruction manual for raising a child with leukemia and few qualified people to ask for advice.

Daddy and I were nearly broken in two when we found out you had leukemia. It was, without a doubt, the worst day of my life. Either one of us would have gladly taken your place rather than watching you suffer so. The physical treatment was hard on you, but it was the isolation that was the really tough thing for you to swallow. You are a social butterfly and love people, so being kept out of school and away from friends and activities was so difficult for you. I know you blamed me for a lot of that, because I was usually the one breaking the news that you couldn’t go to a birthday party, or spend Thanksgiving with family, or go to the beach with your cousins. And, that’s okay. I just hope that one day, maybe when you’re a Mom yourself, you’ll get that being a parent means loving someone enough to let them hate you when you have to. We did everything we could to keep you safe and assure that you had a life to live at the end of this seemingly endless chemo.

When I was a little girl, I thought my Daddy was stronger than anyone. I knew he and my Mom would never let anyone or anything hurt me. I am sorry that you had to learn at age 5 that the bogeyman is bigger than Mommy and Daddy put together. It’s not a fair age to learn that and we did everything we could to retain your childhood, but cancer is ugly and you are too bright to not notice that no one could ever really promise you would be okay. You must have been so scared and I wish I could have made it better.

I want to make sure, more than anything else, that you walk away from reading this letter knowing three things: 1) I haven’t been the perfect Mom, but it wasn’t for lack of trying. It’s not the easiest job, this Mom business, but I love it and I wouldn’t have it any other way. 2) I am prouder of you than you will ever realize. You have been braver, stronger and more poised than I could have ever been in the same situation. 3) I love you… fiercely and completely… just the way you are. And, I always will.

I hope this helps… for you to understand what happened to you, and to our family, many years ago, and for you to realize that you have been all I could ask for from a daughter.

I love you, T.
Mom

Laying Low

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June 14, 2010

We’re laying low. It’s too hot to do anything but swim, but the pools are mostly too crowded for us… enter, the Whitler’s with their backyard pool! We swam at their house today and had a great time. Thanks so much, guys… you’re always there when we need you.

Tanner is feeling fine. She was really fine after one day of the antibiotics. The fact that she has been able to beat this so quickly makes me believe her neutraphils are on the way up… we hope! We need them to recover in time to get to Vacation Bible School next week. Tanner will be totally devastated if she can’t go. She handled missing her show on Friday really well, but it all burst from the seams on Saturday and Sunday. Like all her pent up frustration just came out at once. Ugghhhh.

We snuck out to the neighborhood pool on Sunday morning when most were at church and got to swim with Madelynn. Madelynn is a little 4-year-old girl in our neighborhood that also has ALL. It was great for the girls to be together and for me to get to commiserate with Madelynn’s parents. There was some considerable mutual steroid-cursing going on, for sure. In a couple of weeks, Madelynn and Lily and their families will be coming to our house for a cookout and some fun. I’m looking forward to it.

Other than that, wracking my brain for fun, germ-free activities that don’t put us outdoors in the heat of the day. It’s really quite challenging. More swimming at the Whitler’s on Wednesday. Then, clinic again on Thursday.

Time to have a talk with Tanner’s neutraphils… I don’t think they understand how much is at stake.

Love,
Beth

She Didn’t Make It

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June 11, 2010

Tanner told me in the car on the way home from the pediatrician’s office this morning that it was the worst day of her life. I believed her. She woke up this morning with a red, swollen throat and a quick trip to the pediatrician’s office confirmed that she has strep throat. Say goodbye to her theatre camp show today.

In a cruel twist of fate, it was not the risk of her catching something, but the risk of her giving something to someone else that kept her from doing something she really wanted to do this time. It was another disappointment in a year of crappy disappointments. I heard her in the back seat of the car talking to herself while I was on the phone with the clinic, sobbing, “Another year… I have a whole year more of this… I can’t do it, I just can’t.” Talk about heartbreaking. I don’t think I’ve ever felt so horrible about making the right decision before.

She was pretty mad at me for a while. She kept telling me that the doctors were not the boss of me and that I could just do what I wanted because I was a grown up. I told her that she was right and I cried with her, but said I still had to do what was right and it wasn’t right to knowingly expose other kids to strep.

Then, I had a brainstorm! There were other dates for dance camp and she could go again! We drove to the theater where the performance was being held to tell the director she couldn’t come. Sure enough, they said she could come to another camp and do the show then. Tanner cheered up considerably and felt a lot better. We decided that maybe it was cool to be able to go to camp twice and that she might make a whole new group of friends.

So, it was still a bummer, but a little less so. She’s feeling pretty good for someone with strep throat. It’s a little worrisome with her counts so low, but so far, no fever. We’re trying to keep her and Jake separated so he doesn’t get it, too, but it may be too late.

Thanks to Jan Williams School of Music for being so understanding of Tanner’s unique situation, and for giving a little girl a second chance at her dream.

Love,
Beth

Clinic Day #34 — By the Hair of Our Chinny, Chin, Chin

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June 10, 2010

As we feared, counts today were not good. Her neutraphils were at 650, which is, of course, neutrapenic. The methotrexate that made her so sick last week was doing it’s job a little too well, apparently. Tanner could tell by the look on my face when I was talking with the doctor that things were not good and began to cry saying, “Can I go? Can I go? Please, please… I have to go.” Mercifully, the doctor felt there was little additional risk in letting her do the show tomorrow since she has been with these kids all week and it’s summer time when all the respiratory stuff isn’t floating around. Thank you, God.

So, as nerve wracking as it will be for John and I to let her go with such low counts, the show must go on. Then, we will hunker down until next week and see what happens with her counts. They adjusted all her oral chemo back to 50% and we will start the process of bumping her up towards 100% all over again once her counts recover. Her red counts were fine, hence all the energy.

She was really tired this afternoon, but had trouble going to sleep – I think she’s just so excited. We’ll take lots of photos and video and post them tomorrow so you can see the star in action.

I jammed my big toe today in a stumble not worth discussing and have a swollen and painful foot that has put a little hitch in my getalong. Suffice it to say, we will be a laid back group this weekend.

Thank God for the Whitler’s pool, which will be a safe place for us to spend some time next week. Tanner actually has a full clinic visit next Thursday, even though it’s been only three weeks since the last one, because we got off schedule due to the end of school. They don’t hold Vincristine for low counts (it doesn’t really lower counts), so she’ll have that and start her steroids. Steroids, although they sometimes raise counts, actually compromise the immune system, so it may not be a very good couple of weeks ahead. We may be missing Vacation Bible School.

But, we are soooooooo grateful she will get to perform tomorrow. That’s the main thing. Thanks for all the good thoughts and prayers. They worked.

Love,
Beth

The Drama Queen

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June 9, 2010

Jake and I picked Tanner up Monday afternoon from her first day of theater camp to find the most fired up 6-year-old you have ever seen. She was singing her newly learned songs to me before we even got into the car, glancing at her lyrics notebook to remind herself of the words. She was, in a word, aglow.

I told John that I night that I believe I had witnessed Tanner find her place in the world that day. All of her unbridled and emotional enthusiasm fit right into the world of song and dance, and I believe I will be driving her to play rehearsals for the next decade or so.

She is really proud of herself for getting a solo that she had to audition for and win from some other kids her age. She is singing “I hope I get it” from A Chorus Line. It is pretty hilarious to watch a very earnest, almost-seven-year-old sing, “I really need this job; I hope I get this job.”

She’s in camp all this week with a performance on Friday. She cannot wait for that performance. She keeps asking me how many days until Friday. It will be interesting to see if she gets stage fright.

Tomorrow, Jake, E. (John’s Mom) and I will pick her up from camp and head to the hospital for a counts check. They want to be sure the newly upped methotrexate dose isn’t making her counts drop more than they want it to. I’m terrified that her counts will have tanked and she won’t be able to do the show on Friday. It would be, to say the least, devastating. So, please pray, light candles, send up positive karma into the universe. She wants this so badly.

We’re also counting down the days to Domino, who is coming to his new forever home on June 23. We have his new bed all ready in the living room, filled with toys, chews, and a collar and leash. We’ve had so much fun getting ready for him to join the family. Cancer took our sweet border collie from us last year, and cancer kept us from getting a new dog for the nine months since then. But, now, we’re almost finished waiting to get back what cancer took, and we are giddy with excitement.

Good counts, good counts, good counts… there isn’t enough money in the world for the therapy she will need if she doesn’t get to sing and dance her little heart out on Friday.

Love,
Beth

TGIF

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June 4, 2010

Tanner’s just not feeling very well. It’s like this most recent round of chemo is affecting her more than it usually does. Through all the first 6 months of horrible chemo she received, she threw up only twice, now she has thrown up twice in one week and has needed anti-nausea meds every day. Weird.

She’s also been really hot, which I assume is caused by the steroids. She will complain about not being able to cool off and will actually feel really hot to the touch, but has no fever. Like hot flashes, I guess.

I did a little research on the Leukemia and Lymphoma Society discussion boards. I go there especially when I have a side effect I want to know more about. Doctors are only so helpful about side effects. They’re more concerned (as they should be) with the effectiveness of all these drugs and whether they’re actually killing the leukemia. Mommas are the ones who worry about side effects and the LLS discussion boards are where they talk about them. Turns out it’s not uncommon for kids to begin having more side effects as maintenance goes along. The theory is that the toxicity of the chemo over the long-term just builds up in their little bodies and they become too tired to fight them off. Many mothers of boys (who do an extra year of chemo) talked about how sick and fatigued their boys were the third year of chemo. So sad.

All this feeling bad hasn’t really stopped us from having some fun, though. Yesterday, after waking up sick, Tanner rebounded and, within an hour, we went to the pool. Kids are amazing. We haven’t played outside as much as usual; the heat was too much for her. But, the steroids are wearing off and we’ll be back to scootering and biking in no time, I’m sure.

Wednesday, we went to see our favorite singer, Roger Day, at the Spring Hill library. It was, as always, lots of fun. Tanner and Jake got a seat up front and Roger worked Tanner’s name into a couple of songs, which tickled her. They got signed t-shirts and we went home with a new copy of a CD we misplaced during the move. We’ve been singing, “As a matter of fact, Jack, I like Yaks! We like YAKS!” in the car ever since.

When we were in line waiting to get into the room where Roger was going to perform, Tanner started talking to a Mom in front of us. She said, “I have cancer, well leukemia, and Roger Day came to our house and had a concert with my friends.” The look on that’s Mom’s face was priceless. Tanner was so matter-of-fact about it the woman never said a thing to her about having cancer, she just looked startled for a moment and kept talking. Lol

Today, more pool time and then we need to go sing Happy Birthday to Aunt Kim. Happy birthday Kimmie! Next week, Tanner has theater camp all week. I’m hoping it will be the perfect outlet for my little drama queen.

Love,
Beth