Category Archives: strength

Quick Update

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April 11, 2011

Tanner is feeling good today. Her cough is resolving nicely. Going to pick up homework from the teacher so she can keep up with her class. Reading Little House on the Prairie… she’s almost finished. Playing lots of Monopoly and Life. Living in our pajamas and watching movies. Making lemonade as best we can.

Sadly, she is experiencing some side effects from her increased chemo dosage that make us all feel like we’re going back to the beginning of treatment. So heartbreaking for all of us, but especially for her. She is devastated and frustrated and mad. Cancer is wily and evil and is getting in it’s LAST licks before we are finally done with it… but we WILL be done with it… just four more months.

I found comfort today in these words from Elizabeth Edwards. I wish Tanner were old enough to fully appreciate what Elizabeth went through and how resilient she was all the way to the end. It might bring her comfort, too. Amazing woman, that Elizabeth. Amazing child, my Tanner.

“Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.”
— Elizabeth Edwards

Love,
Beth

Clinic Day #49

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March 23, 2011

As clinic visits go, today’s was pretty smooth and easy. Tanner’s counts were high – 2,200—but they didn’t change her chemo. She has, we believe, a sinus infection, which could raise her counts as her body tries to fight it. If her counts remain high next month, they will raise her chemo levels above 100%, so hopefully her counts will come back down before then (seems weird to be wishing for low counts, but the name of this game is low, but not too low).

Tanner has been on antibiotics for two weeks now for the sinus infection with little improvement. We could suspect allergies since it is practically snowing Bradford Pear blossoms here, but allergy medication does not help her at all. So, we will continue on the antibiotics and try some prescription nasal spray as well.

After Tanner got her Vincristine (IV chemo), we went down to the food court for lunch. It was nice to not be in a hurry to get back to school (we’re on Spring Break this week). They had medical play today and both she and Jake just love getting a doll or stuffed animal to play doctor with. The doctor play you see at the hospital is definitely not your usual variety. Most kids just take temperatures and listen to hearts. But, “hospital” kids start IV lines and deliver oxygen through masks. Tanner hooked her doll up to an IV pole and carried it around.

We met a family during medical play that had two children both suffering from a bone disease that causes their bones to break very easily and stunts their growth. They were 7 and 8 and neither one any bigger than Jake. The mother said they have broken around 70 bones each and that the daughter is deaf in one ear because the tiny bones in her ear are broken. They come in every three months for a transfusion of medicine that strengthens their bones. I’m listening to this woman tell the story of these kids and realizing that they will never get better. She confirmed that they will always have this problem. I told her that Tanner has leukemia and that sometimes I feel lucky because at least she will (hopefully) get better and not have to endure any more treatment. She laughed and said every time she is in the infusion room she feels lucky because her even though her kids have a bone disease, at least it’s not as life threatening as cancer. We all count our blessings to our own beat, I guess.

It was a tough day for me. Every clinic visit seems to get a little harder lately. I’m tired of worrying and thinking about sick kids – mine and other people’s. This week hasn’t been such a great week for some local CKs.

Savannah, an 11-year-old with soft tissue cancer that I have been following through friends and on CaringBridge, died this week. She had battled this terrible disease for more than 5 years through 3 relapses and had finally run out of treatment options. We had seen Savannah several times in clinic and she stood out to me for her grace and poise. She and Lily were good friends.

We also saw a family in clinic today that we met early on in treatment. Thomas’ brother was an intern at John’s company and we connected with his Mom nearly 2 years ago in recovery while we both waited for our kids to awaken from sedation after lumbar punctures. Thomas has T-cell ALL, a more difficult to treat type of leukemia than B-cell ALL, which is what Tanner has. Thomas’ age, 16, and the fact that he is a boy, increases his risk, but he has done well on treatment. Now, however, he is having some worrisome symptoms that have doctors checking his bone marrow for relapse. I stood in the hall with his Mom and we hugged and cried a little before they headed down for the surgery. I’ve checked his caringbridge three times tonight hoping for good news, but nothing yet.

Another Vandy kid I follow, Cole, is not doing well either. He has the same type of leukemia that Tanner has, but had a central nervous system relapse last year and is undergoing an unbelievable chemo regimen. He has had unexplained high fevers for a week that has stumped everyone thus far.

Several weeks ago, at a Girl of the Year function, I met the Mom of a little girl named Samantha who died last year after a five-month battle with T-cell ALL, including a bone marrow transplant. She was 7 when she died, which is hard for me to hear, and her Mom, even though she was welling up talking about it, quickly assured me that her leukemia was very different than Tanner’s.

On the way home from clinic, we stopped for gas and I went in to buy some candy for the kids. As I was waiting in line to pay, a photo on the newsstand caught my eye. A little girl with a hat and a surgical mask on was surrounded by smiling girls at a party where they had announced her Make-A-Wish trip to Disney. I didn’t recognize this child, but turns out she is also from Franklin and has the same soft tissue cancer that just took Savannah’s life.

It’s just too much sometimes. It feels like cancer is everywhere and that it will never end. Treatment might end for Tanner in August, but the worry won’t go away. We’ll still go to clinic every month on pins and needles hoping that her bloodwork doesn’t show that the beast is back.

I’m tired of worrying. Of wondering if every little thing is actually a big thing. I’m tired of watching kids lose the battle. I’m tired of choking back the terror when I have to admit to myself that two relatively textbook years of chemo treatment can mean nothing in just one little moment.

Cancer, I hate you with a venom I did not think I possessed. Today you are winning the battle with me, but I have no intention of conceding the war.

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

One Mile

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April 29, 2010

Yesterday, as we headed to school, Tanner and I talked about the mile run scheduled that morning that is part of her school’s physical education program. Just the night before, she had taken the last dose of a five-day steroid pulse, and just 6 days before, she had a dose of Vincristine. Both things bother her legs and make her weaker than normal, among other side effects.

“You feel okay to run today?” I asked.

“Sure,” she said.

“You know, if you’re too tired, you don’t have to run,” I said.

“No, Mr. Parks says it’s not just a fun run, it’s a test; we have to do our best,” she insisted.

“Well, I know, but I can talk to Mr. Parks if you think you won’t be able to finish. I don’t want you to push too hard.”

“Why wouldn’t I be able to run, Mom?” she asked… innocently… expectantly.

Long pause on my part. “No reason… run like the wind, girl.”

And, run she did. One mile in 13:09 minutes. She ran, joyfully, in spurts, giggling with friends as she passed them or caught up to them. Jake and I ran with her for part of the run and John took video from the side, the only Dad there in a suit.

She ran as if there was nothing wrong, as if there was no reason she shouldn’t be able to, as every child does… with youthful abandon.

I have to admit, I teared up as she crossed the line ahead of some of her classmates. This child with every reason not to run, and every reason to run.

It made me think about the run the year before. I said to John, “She ran faster than she did last year, when she didn’t have cancer.”

But, here’s the thing. She did have cancer when she ran last year. We just didn’t know it. In fact, she limped the last ¼ mile or so, complaining about a pain in her upper right leg; the leg that was so painful when she was diagnosed, and the leg that still hurts her now.

That afternoon, I told Allison, her therapist, how Tanner had run with all that medication in her, all that poisonous chemo eating at her. She smiled and said, “That’s her incredibly strong will. It’s what makes her so difficult to deal with when she really wants something, but it’s serving her well, too.”

One mile. 5,280 feet. Two proud parents. One joyfully determined child.

Love,
Beth

What is normal, anyway?

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April 14, 2010

This may have been the longest I’ve gone without posting since Tanner has been diagnosed… 6 days. It’s weird, but things are so normal I feel like don’t really have much to say. Tanner feels really good and looks really good and, mostly, seems like every other kid.

Then, there are moments when I see our life from an objective viewpoint and it hits me that none of this is really normal… it’s just what we’re used to.

For example, last Thursday night, John was preparing Tanner’s nighttime meds and said, “Good grief, am I right with all this she is taking?” He was staring at our medication spreadsheet, taped to the inside of entire double-wide kitchen cabinet dedicated to medicine, mostly Tanner’s. I usually update the spreadsheet about every 2 weeks, after clinic, to be sure we’re current on everything she takes (really, it’s that confusing), but I’ve been kind of slacking lately with the move and all, and he wasn’t sure what he was seeing was correct. I assured him it was. Thursday night sucks. She takes ½ 6MP pill (daily oral chemo), 5 methotrexate pills (weekly oral chemo), 2 neurontin capsules (for neurapathy due to the Vincristine), mepron (a daily antibiotic that prevents a dangerous type of pneumonia), omnicef (antibiotic for the urinary tract infection), claritin (for allergies), pepsid (for the stomach problems that all these meds cause), and zofran (anti-nausea med to prevent the nausea that the methotrexate usually causes overnight). As you can see, nothing normal about a 6-year-old taking all this, and that’s just her nighttime meds.

Today, I spent hours on the unfortunate task of trying to untangle the last month’s medical bills. All of our deductibles have rolled over, so I’m forced to pay close attention to the bills again to be sure we are paying the correct amount. It’s a nightmare matching up the EOB’s from the insurance company and the bills from doctors and the hospital. In the stack, I came across an old bill that had not yet been filed. It was from one clinic day back in the early November – the dreaded first day of the second half of delayed intensification. We stayed at the hospital from 8 am to 6 pm that day, getting every kind of chemo but the kitchen sink. The bill was a testament to the fortitude of my child, to her desire to thrive and survive. Three pages of chemo, listed on line after line. It reminded me how much Tanner’s body has already endured and worried me about how it will effect her long-term.

Tanner came home yesterday SO excited about a birthday party invitation from a little girl in her class. It is at Jump Zone; and we have not allowed Tanner to go there since diagnosis. She was so hopeful, but also was aware that she might not be able to go. I could see on her face how important it was to her… how desperately she wanted, needed to feel normal… to just go to a birthday party like the other kids. I told her I would have to talk to John that night, as he is out of town. That night, we decided that she could go as long as I stayed and applied some hand sanitizer every once in a while. Tanner was thrilled and accepted our stipulation. She was so funny, though. She said, “Dad’s not coming though, right? Just you? Cause Dad will be so crazy with the hand sanitizer.” I laughed and laughed. She’s exactly right. It will be much less embarrassing if germ-a-phobe Dad stays home (love you honey!). So, we’re so happy she’ll be able to go, but there’s nothing totally normal about your Mom lurking in the shadows with hand sanitizer.

So, it’s not really normal, but it’s cancer normal. And, for cancer world, she’s probably about as normal as possible right now. We’re planning for summer camps and our trip to Disney and the Spring Fling at school. We’re grateful and it’s a relief to not feel like we’re in crisis mode, even if it always seems one fever away. I see things ahead that don’t involve hospitals and isolation, but are just normal things that kids and families do. It’s not normal by most people’s standards, but we’ll take it.

We received some awesome news this week… we can get another dog!!! Yay!!! I don’t know who is more excited, me or the kids. We’ve picked out a dalmatian mix from McMuttigan’s rescue in Kentucky. The trainers are child-testing the dog this week and will let us know if they believe he will be a good candidate for us. He is in a three-month training program in a Kentucky prison and will be trained especially for us, by prisoners, by the time we get him in June. We will also know he has been thoroughly vetted over the past three months, so he should be safe for Tanner. So, cross your fingers that he is bomb-proof; we already feel attached to him. If you’re in the market for a dog, consider this program… it’s such a win-win for everyone. The last time we almost got a dog from this program, the prisoners were pouring extra love into the dog we had picked out so their “little angel” would get the best dog possible. Blessings come from the most unusual sources sometimes.

Sorry for the long post… guess I had something to say after all!

Good night,
Beth

Her Beautiful Face

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February 10, 2010

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

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

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

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

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

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

Love,
Beth