Category Archives: cancer

Theatre Camp Redo

Posted on by
1

July 14, 2010

This week has been theatre camp redo week. Tanner’s been attending camp every day and having at least as much fun as she did last time. She is singing and dancing her little heart out and we’re keeping our fingers crossed that she makes it to the performance on Friday this time.

Tomorrow is clinic day. A dose of Vincristine and the start of a five-day pulse of steroids. She’ll miss a good part of the day at camp tomorrow, but seeing as how she’s already been through camp week once before, she won’t miss anything too important. We’re hoping to get her back to camp by 1 pm, but heard clinic is packed tomorrow, so it might take a while.

Been spending some quality time with my little man this week. We’ve been to Jump Zone and to the pool, the dog park, and the library. I’m enjoying some special time with him. Jake gets overlooked in this whole process sometimes, not intentionally of course, but because sometimes you just have to give your time to the child who needs you most at that moment and that is often Tanner. Jake is so used to Tanner getting medical attention that he now asks for medicine so he can get in on what seems like (to him) some great attention from John and I. He doesn’t realize what that medicine does to Tanner. We keep sweet tarts to give to him when he wants some of that kind of attention for himself.

Went to my pre-op appointment this week for some minor surgery I’m having in a few weeks. I have a nodule on my thyroid that has tested negative for cancer in needle biopsies, but John and I agreed to just get it out. We’re not so big on taking chances with cancer these days. I’ll lose half my thyroid, but the other half should take up the slack and I should be fine, minus one largish lump in my throat, after all is said and done. Me having surgery is causing Tanner some minor stress. She keeps asking if I have cancer or if it is going to hurt and if I’m getting “sleepy milk” like she does.

Hoping to report good things from clinic tomorrow. Good neutraphils and hemoglobin levels. That’s what we look for. Just trying to make it through Friday’s performance and to the church Fish Fry that night (Bethlehem United Methodist — yummy!). We’ll keep you posted.

Love,
Beth

Love Letter to Tanner

Posted on by
7

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

The Best Thing About Cancer

Posted on by
2

June 1, 2010

Tanner and Jake donating change to the Children's Hospital

We’ve been accompanied on our last two clinic visits by a small camera crew that is following Tanner for a fundraising video for the Children’s Hospital. This time, just Ms. Donna came with us, with her video camera, to chronicle Tanner getting her port accessed, receiving her chemo in the infusion room, and waiting in the pre-op area for her lumbar puncture. Last time, Tanner sat with Ms. Donna and her crew for about 10 or 15 minutes and answered questions about what it’s like to have leukemia. During these questions, Ms. Donna asked Tanner what was the worst thing about having cancer. Tanner answered, “Missing school and doing things with my friends.” Then, she asked a question I wasn’t sure a six-year-old could answer. She asked what was the best thing about having cancer. Tanner thought for a minute, puzzled by such a strange question, and replied, “There’s really nothing good about it.” I was really proud of her for not feeling pressured to come up with an “acceptable” answer and for just answering honestly.

But, the question stuck with me and I found myself wondering how I would answer it, if she had asked me. For a moment I felt just like Tanner… there’s nothing good about it. But, I thought a little more and suddenly it hit me… the best thing about having cancer is the unbelievable kindness of people. I literally never knew people could be so kind… really.

Take today for example. Tanner got an email from her “animal friends,” and squealed with delight. We even wrote an email back to the cat to tell him how to make his hurt ear feel better. Charlene has been sending photos and letters from cats, dogs, horses, goats, turkeys and even a bee for a solid year. She even made a book of the letters for Tanner to keep. Tanner still doesn’t know who they come from (shhhhh!) and it’s like magic to her.

Then, I got a call from a friend whose daughter is going to forgo birthday presents for donations to the Children’s Hospital. We’re trying to work out something cool where maybe the party attendees bring toys for the Childlife Center in the infusion room. Too cool.

Then, I got an email from one of Tanner’s Make-A-Wish volunteer coordinators. She is running a half-marathon for Team in Training to benefit the Leukemia and Lymphoma Society and wanted to know if she could run in Tanner’s honor. She is the second of Tanner’s two Wish Coordinators to do this. As if they don’t do enough

Then, John came home from work and brought me a gift from my secret pal. This sweet woman has been sending me gifts for almost a year now, just every so often, to let me know that someone’s thinking about me. They are always such thoughtful things designed to make me feel pampered. Today, a bracelet with a little charm on it that says, “Mom” and a little heart for each of the kids. I love it, just like I’ve loved the flip flops, the key chain, the monogrammed bags, etc. The card said she has truly enjoyed being my secret pal… that’s the kind of person I’m talking about here. Wow.

This is just one day’s kindness. Other days, there are little gifts, cards of encouragement, supportive comments to the blog, babysitting, and countless other acts of generosity. There are also the quiet behind the scenes things like the great friends who make this blog possible by hosting it on their site and doing all the technical stuff I don’t understand. Then, there are indescribable things like the friend who has loaned Tanner his St. Christopher medal he wore in Vietnam so she will be protected like he was. How do you thank someone for that?

These things mean more to us than their face value. It’s not the gift or the gesture itself that is so important… it’s the support, the friendship, the hope, the love that they bring that make them so instrumental to surviving this ordeal.

So, if Ms. Donna were to ask me what is the best thing about my daughter having cancer, I would say it’s all of YOU.

Thank you for everything you have done, and continue to do, to make this journey bearable.

Love,
Beth

P.S. Happy Birthday to Tanner’s port, which was put in one year ago today. We sang to it tonight.

One Year

Posted on by
6

May 30, 2010

One year ago today, at about 5:30 pm, I stood in the Vanderbilt Children’s Hospital ER and asked a young, nervous resident, “Are you trying to tell me my daughter has leukemia?”

When he nodded, solemnly in response, I distinctly remember taking a step back from Tanner’s gurney, so she couldn’t see my face as I fought to comprehend how a sudden backache in the middle of the night could turn out to be leukemia… couldn’t see me crumple in disbelief… couldn’t watch my eyes grow wide in horror as I bent over at the waist and pushed a scream back into my mouth before it could make a telltale sound.

I was alone with Tanner at the ER. John was home with Jake, and my friend Beth, who had come so quickly when I called, was on her way back to our house to trade places with John so he could come to the hospital.

I called John and told him to come quickly, but didn’t tell him why. No one should drive with that kind of news rattling around in his head. When he got there, I took him out into the hallway and told him what the doctor had said and we held each other and cried.

The next two days were a whirlwind of false hopes that it could be something else followed by a deafening silence when the bone marrow biopsy results were definitive. This was it… our daughter had cancer.

It’s hard to believe it’s been a year since that day. It’s trite to say, but it really only seems like yesterday. My memory is now organized by the things that happened before May 30, 2009, and the things that have happened since. They feel strangely like two different lives.

It’s not a day I want to celebrate… this diagnosaversary, as some call it… but it’s too big to let pass without mention and without reflection. It changed our lives, mostly for the worse, but admittedly some for the better. We now know the incredible strength of our daughter and the unending and unexpected kindnesses of those we know and of those we don’t.

Tanner is asleep on the sofa as I write this, having given in to the affects of the high-dose steroids she takes, her new hair curling softly around her peaceful face, her chest rising and falling slowly. I am struck with the fact that she is alive… not just a little, but a lot alive. She is thriving and growing and having fun, despite it all.

She had made it through one year, and she will make it through another and then just 67 more days after that, she will take her last dose of chemo. She will just stop, wherever she is in her monthly chemo cycle, on August 6, 2011. She will be eight years old. And, we will work hard to make all of this a distant memory and to use what we have learned from it to make our lives even better than it could have been BC (before cancer).

One down and one to go. Go get ‘em Baby.

Love,
Beth

Clinic Day #31

Posted on by
1

Clinic Day #32

April 22, 2010

It was a long, but pretty uneventful clinic day. We were there for nearly four hours to get five minutes of chemo, but sometimes that’s the way it works. It was standing room only and the doctors and nurses were literally running from room to room. Tanner’s beloved Nurse Carie was out of commission; she had dislocated her shoulder and was on desk duty. Tanner was a little nervous about Nurse Chris accessing her port, but did really well with it.

Her counts were actually high – 2,100 – higher than the doctors like them to be. They did raise her chemo, but only half of it. They bumped up her 6MP to 100% dosage, but not her methotrexate. The hope is that she’ll come back down to acceptable levels, but not bottom out before our Disney trip. We go back in two weeks, right before our trip, to check counts. I’m slightly stressed about the trip getting messed up by the upped chemo, but trusting the docs know best and also keeping in mind that counts that are too high allow leukemia cells to creep back in. Medicine before Mickey, you know what I mean?

Spending that much time sitting in the infusion room means the chance for me to chat with the other parents and Tanner to make friends. She brought a coloring book and crayons out to an adorable little boy named Ian who captivates Tanner and me nearly every visit. Then, she played Barbies with another 6-year-old and then, they shared an infusion chair while they played Wii.

I talked Disney with a couple of Moms to get the low down on Give Kids the World Village. And found that one’s little boy has been coming for treatment for four years due to relapses. The other has a sweet little one-year-old that is asleep every time we see them. She said they give him drugs to put him to sleep until several hours after his treatment or he throws up the whole time. I overheard two other families talking about brain tumors that were affecting their children’s sight and the surgeries they had gone through to try to save their eyes.

Later, an infusion chair opened up and Tanner and moved to the other side of the room where I sat inches away from a little baby and a very tired mom. We began talking and I found out her daughter was six months old and has face cancer. She has been undergoing daily radiation for four weeks and has two more weeks to go. She had already had radiation that morning and had been waiting for two hours for her chemo. The family lives in Chattanooga and has had to stay at the American Cancer Society house. In all, this precious, smiling baby will go through 10 months of chemo and radiation. She was kicking in her car seat, her nose raw and scabbed from the radiation treatments, but still cooing and shaking a little toy with a huge smile on her face.

I asked her mom when her daughter was diagnosed. “She was four months old,” she said.

“Not what you expect when you have a baby,” I said.

“No… I still can’t get my arms around it,” she gushed, looking as scared, tired and overwhelmed as I remember feeling those first months after Tanner was diagnosed.

I assured her that you do get used to it. That there will come a day when you don’t wake up every morning and think, “How did this happen? Does my daughter really have cancer?” You’ll just accept it.

And, the truth is, you do accept it and it gets a little easier when you’re not shocked every time you look at your child. But, it’s not what any of us expected… whether our kids were four months or 14 years when they were diagnosed. Not one of us ever expected to hear the words, “Your child has cancer.” It’s unimaginable, but the craziness in clinic today is testament to the fact that it happens all too often.

If you have been a long-time reader of Tanner Time, you might remember that Matthew West, a Christian recording artist, and his family came to our house one night to bring us dinner and sing some songs for Tanner. Tanner loves the CD that he left for us and we were playing it in the car the other day. There is a song on the CD he wrote for his daughter, Lulu, when she was born. It’s a beautiful song, but I have a hard time listening to it anymore because the lyrics tear at me.

The world’s a scary place here

But baby it’s alright

I’ll make sure the coast is clear

So you can just sleep tight

But if you’re afraid of monsters

Like everybody is

I’ll be right beside you

Closer than a kiss

Safe and sound
You’re here with me now
Like we hoped you’d be
Safe and sound
You’re here with me now
And that’s all I’ll ever need.

Here’s the thing about this song. It’s the way every parent feels. It gets to the core of what it is to be a mother or a father… to protect your child and make a safe place for them to grow up. But, in that room today, I saw dozens of kids whose parents would do anything to make them safe again. To make the monsters go away. But we are helpless to make it better. To soothe away the bad dream that is cancer.

So we trust our doctors. We accept that our child has a life-threatening illness and try to make their lives as normal as possible. We give medicine we don’t want to give. We watch for side effects we wish didn’t exist. We pore over lab results and pray we don’t hear bad news from the doctor.

But, mostly, we try to make sure our kids feel safe and sound… even if we know they’re not.

Beth

What is normal, anyway?

Posted on by
4

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

Compassion Fatigue

Posted on by
6

April 2, 2010

This is a risky post. It will not win me any motherhood awards, and it will likely make a few people cringe. But, I try to speak the truth here, when I can own up to it, and to paint a realistic picture of what this journey is like for us and for the countless other families who endure the pain of caring for a sick child, or even a sick adult.

I like to call it “compassion fatigue.” It’s my term for when I have been sucked dry of all empathy and I can no longer see Tanner’s suffering as anything other than an annoyance to me. I’m there right now. It’s 10 pm and for the second night in a row, Tanner is still awake and I am bunking in her room. She is terrified thinking about a TV show she saw five minutes of the other day before we realized it was scary and changed it. She has come out of her room no less than 20 times since we put her in bed at 7:30. We had a day full of activity and I know she must be exhausted. And, I know with my brain that she must truly be too scared to care about consequences because she has opted to endure several of them in order to continue coming out of her room and to avoid sleep.

She also, I believe, has a urinary tract infection for which we will have to go to the doctor in the morning to have a urine sample analyzed, if we’re lucky. If we’re not lucky, we will end up in the ER sometime tonight. I’ve had a urinary tract infection and I know how it hurts, so in my brain, I know she is uncomfortable, although we have given her a healthy dose of oxycodone.

I also know in my brain that she didn’t mean to skin both knees today and have to be carried 3 blocks home, and that she didn’t mean to tucker out on the hike we took this morning and have to be piggy-backed a good ¼ mile or more back to the car. I know in my brain that she didn’t know that popcorn would burn her mouth when she asked me to make it after asking for and receiving two cartons of macaroni and cheese and three glasses of milk. She didn’t know we would have to throw it away and I would have to interrupt my dinner for the 10th time and get her goldfish instead.

In my brain, I know all these things and I know I should be sympathetic. But, unfortunately, your brain doles out knowledge but your soul doles out sympathy and understanding, and my soul is all shut down today. I have compassion fatigue… nothing left to give. All I can hear right now is “I want…,” “I need…,” “Get me…” “When will you…” The part of me that cares about the child behind these requests stopped functioning sometime around 1 pm today when Tanner interrupted the 15 minutes I tried to claim to myself eating lunch on my bed with the TV on. She needed miralax because she felt constipated. A realistic request, but so ill-timed.

I know she is only six years old and that she doesn’t understand when she’s asked for too much, but she has. I’m just filling requests like a begrudging robot at this point.

My husband wonders why I stay up so late after everyone is gone to bed. It’s not that I don’t need the sleep. I fall asleep sitting up almost every day while I’m putting Jake down for a nap. I stay up after everyone goes to bed because I know, if I am lucky, that there is a good chance that for hours, no one will ask me for anything. That I can do exactly what I want to do, uninterrupted. And, it’s worth whatever sleep I lose doing it, because it preserves my sanity and allows me to wake up the next morning and fill requests all day without feeling resentful about it. I have a feeling a lot of Mom’s do this.

But, I think that having a child with cancer adds a layer to Momdom that complicates things. That makes your need for a compassion recharge that much greater. And, I’m fresh out.

It’s an ugly thing to talk about and definitely not one of my finer moments, but it’s where I am. Tomorrow, after the visit to the pediatricians, and possibly the Vandy ER, after the Easter Egg hunt at church, I will run away. I will go to the movies with a girlfriend, or even just by myself. And my wonderful husband will recognize my need for this recharge and send me off with the reassurance that I should stay gone as long as I like.

And, when and if I do come back (lol), I will do more than just go through the motions. I’ll add a kiss and a hug to the bandaid and Neosporin routine. And, I will actually mean it.

Love,
Beth

A Little Freedom and Gorgeous Weather Go a Long Way

Posted on by
4

March 8, 2010

Tanner got to go to a birthday party on Saturday for the first time since she was diagnosed with leukemia. Nine months with no birthday parties. We didn’t tell her until the last minute and she was so excited. It was a Young Chef’s Academy party so they made pasta and garlic bread and had a ball.

Tanner dressed herself for the party and came down in jeans and a jump rope-a-thon t-shirt with black high top converse. She has the girliest little face, but still… she gets her feelings hurt when someone calls her a boy, and this outfit would not help. I tried to convince her to wear a barrette in her hair, but she wouldn’t do it.

Turned out she knew all the little girls from school. But, it made me tear up a little to see how confidently she bounced into the room to great her friends. This ordeal could rob her of her self-esteem. I can easily see where I would feel a little like a freak when your parents keep following you around with hand sanitizer and telling you not to touch stuff everyone else is touching. But, Tanner’s confidence is definitely intact and I’m glad cancer hasn’t taken that away from her too. She’s still a happy, bouncy little girl that loves to play with other kids.

Saturday night we had friends over the new house for pizza in the basement. Great fun! Sunday was a gorgeous day and while John carted several loads of our belongings into the house, the kids and I had a picnic on the front lawn and rode bikes with our neighbors-to-be. We already love our cul-de-sac. There are so many kids and it feels like such a safe place for them to play.

School was out in Williamson County today and we went to a friends’ house to play outside on a beautiful 70 degree day. They had a new “zip line” and while the Moms watched from lawn chairs, 7 kids had a great time playing on the playground and just being outside. It was a welcome break from the drudgery of packing.

Tomorrow, Tanner and I will spend the day packing and taking stuff to the new house while Jake is at school. We’re in the final stretch here and I’m starting to feel a little strain. So far, though, it’s been a relatively easy move and we have no real deadline for getting our stuff out, so I’m just not going to sweat it if it all doesn’t get done before the movers arrive. Don’t get me wrong… I would rather not come back on Sunday after moving the day before to pick up the stuff we didn’t get, but we will if we have to. We have enough stress in our lives without creating imaginary deadlines.

One of my friends asked me why we would choose now, with all that has gone on with our family this year, to take on something stressful like renovating a house and moving. She said she thought it would put her over the edge. The funny thing is, it has been exactly the opposite. It has been a blessing. It has given us something else to focus on, something to look forward to and offered us a safe place to go when we couldn’t get out because of low counts. It’s a little like an adventure to go “camp” at the new house for a meal… pure gold when you haven’t been to a restaurant in a while.

But, mostly, we haven’t found it to be very stressful at all. Our experience with cancer has changed our idea of what stressful is. Stress is thinking your child might die, watching them in pain, feeling like they are a sick all the time, disappointing them over and over again, even if it is for their own good, feeling like your child is being robbed of her childhood. These things are stressful. A messed up hardwood floor can be fixed, a wrong tile choice in the bathroom can be covered with a throw rug, a missed deadline can be rescheduled.

Four more days until we move. It’ll all get done somehow. Meanwhile, we’ll enjoy whatever freedom we can get.

Love,
Beth

Between a Rock and a Joyous Place

Posted on by
2

February 20, 2010

It is an exceptionally difficult thing to make a decision that makes one of your children happy and hurts the other immeasurably. I started the day with regret and ended it with little bit more peace, but still not knowing whether we made the right decision or not.

Today was Jake’s birthday party, the party his sister could not attend. Tanner seemed okay with this decision a few days ago, but yesterday began having a hard time with it. As she watched me blow up balloons and helped me stuff goody bags, she struggled with how to express her anger while still supporting her little brother. She would have an outburst, then apologize and say she wanted Jake to have a good time. It is wrong to expect a six-year-old to handle the culmination of 9 months of deprivation with grace.

This morning, her teacher came to the house for a lesson and Tanner broke down during the session and sobbed on my shoulder. She was sad and frustrated and didn’t know how to show it appropriately. Then, she was embarrassed about the way she had acted in front of her teacher. Tough morning.

On the other hand, there was a sweet little boy who turned three and deserved a birthday party filled with the unfettered joy that occasion merits. It was a good party. Just a few good friends, some presents and cake. He loved it, but I think even he missed Tanner.

I would like to say John and I were as joyful as we wanted to be for his party. But, it was hard knowing Tanner was at home feeling so abandoned. Her E. and Papa came to stay with her (thank you, you have no idea how much that meant) at the house, but I know my highly social girl would have loved to be directing a game for Jake’s friends.

I feel bad knowing I might have put more into Jake’s party if I didn’t feel so conflicted. I don’t think he noticed, but I did. He had a good time and loved having his friends, eating cake and opening his presents.

The day actually ended better than we could have hoped. John’s brother Michael, his wife, Amanda and their son Mack came to the party and stayed afterward for some fun. E. and Papa brought Tanner over to the new house and we let the kids ride the new ATV and their scooters in the cul-de-sac. We called for pizza and had an impromptu picnic on the front lawn while the kids played. Tanner loved seeing Mack (they are the same age) and it helped a lot to be able to play outside with him even if they couldn’t touch each other. We all went home exhausted and laid on the sofa for the rest of the day.

Cancer infects so many parts of our lives that it never ceases to amaze me the situations I find us in… hard spots with no clear right decision. We did our best to make the right decision, but it costs, as always, in some way.

Love,
Beth

Two Doors Down

Posted on by
5

January 23, 2010

Three women who didn’t know each other 8 months ago sat in a booth at a restaurant and shared secrets they didn’t dare tell anyone else. They shared heartache others can’t understand, and information others don’t need to know. They cried tears of laughter and anguish. They shared a bond both wonderful and terrible. Their young daughters have leukemia; three beautiful girls with a grueling disease that tests their mothers’ stamina and will.

They were glad to be there, but at the same time, wished they weren’t.

Larisa, Amy and I went to dinner at 6:30 and didn’t leave the restaurant until 11 pm. We had much to share and formed a reluctant sisterhood of sorts over pasta and wine. We talked about the odd coincidence of circumstances that brought us together. When Tanner was diagnosed with leukemia, Larisa’s daughter, Lily, was in the hospital with an infection during the Delayed Intensification phase of treatment. A mutual friend emailed me and said I needed to meet them; they were just two doors down from us in the hospital. I remembered my friend talking about Lily. She had showed me a painting a month before that she was doing for Lily’s at-home classroom. I remember thinking how devastating it would be to have a child with leukemia and prayed for her that night. Now, here we were. Lily and Larisa came down the hall the next morning, bringing Lily’s Garden bracelets and soaps and a sweet note Lily wrote for Tanner. I still have it. It says, “This is hard, but I know you can do it. DI is the hardest part.” It is written in red crayon. I also still wear the lavender Lily’s Garden bracelet; I haven’t ever taken it off.

When they stopped by our room, Tanner was in bed, literally panting in pain. I stepped into the hallway so as not to disturb her and knelt down to talk with Lily. She had the face of an angel framed on a sweet, bare head. I told her that Tanner was getting her port put in that day and Lily lifted up her shirt, unceremoniously, so that I could see hers. Larisa gave me a pink sheet of paper, which I also still have, with her name, numbers and email address and an offer to contact her whenever for whatever.

About 2 weeks later, she became a lifeline for John and I. When I called her to ask if Tanner was ever going to go back to being herself after the steroids, she assured me she would. She said it would take about 3 days for her personality to start to show up and she was right. Since then, we’ve become friends and so have Tanner and Lily. We don’t see each other that often, but I know she is a phone call or email away if I need an understanding ear or have a question for someone who has been there.

Five months later, Tanner was in her first month of DI and on her second hospital stay for that month. She had pneumonia, and on about day 8 of our 10-day stay, I got a facebook message from a friend who said a church member’s daughter had just been diagnosed with leukemia and was in the room just two doors down from us. I went down immediately and found them gone to surgery. I left a note with my name, phone number and email and an offer to contact me whenever for whatever. The next day, we met Alex in the 6th floor lobby. Tanner and I met Amy later that day when she stopped in the doorway to say hello. I remember seeing her 3 weeks later, on Thanksgiving morning, coming out of Kroger carrying a bag of bagel bites for a steroid-crazed child and assuring her that she would get her daughter back 3 days after stopping steroids. I recognized the terror in her face as my own when she tried to believe me.

Over dinner tonight, Amy said she, too, had prayed for us before her daughter Madelyn was diagnosed. The mother of a little girl in Tanner’s class at school had lifted her up in Sunday School, a class of which Amy and Alex are members.

Larisa said there had been a “two doors down” family for her, too. Unfortunately, their story ended sadly.

We joked tonight about starting a “two doors down” club for people to pay forward what has been given to them by another, and to share the wealth of medical information that means nothing to most, but everything to a very few.

Thanks, girls. I needed both the laugh and the cry. And, I’m glad we have each other, even though we wish we didn’t have to.

Love,
Beth