Monthly Archives: March 2010

Heavy

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March 29, 2010

It’s steroid week… always a blast. Tanner is handling it really well, but it just stinks and that’s all there is to it. She is also feeling the effects of her monthly dose of Vincristine. She is having a hard time with her mouth burning every time she eats or drinks anything. I think this is a precursor to mouth sores, but Tanner usually doesn’t actually get the sores and the feeling passes in a few days. This time, however, it’s lasting longer so we’re loading up on the glutamine to try to prevent them from turning into sores. It’s particularly frustrating to her considering the steroids make her really hungry – talk about a catch 22.

She’s actually been pretty active this weekend, though. The good weather, combined with the lure of the kids playing in our cul-de-sac, outweighed the steroid apathy many times this weekend. We flew kites, played baseball, rode bikes and jumped rope. She even made it to school for a couple of hours today and to the play therapist’s for a much-needed anxiety download.

I’ve been a little burdened the last couple of days. The little girl I’ve been writing about, Samantha Abbott, died yesterday morning. She was 7 and such a cute little girl. She was in tremendous pain in the last weeks of her life and her organs finally shut down and gave up. Too much for a child to have to bear and for her parents to have to come to grips with. Just unfathomable.

In addition, I heard through the childhood cancer grapevine about another Vandy patient, a 14-year-old girl, who was just sent home with hospice care. She was given six months at the very best, but has since taken a turn for the worse and it will likely only be days instead of months.

These stories both sadden me and terrify me. They eat at the edges of my hope and deflate my confidence.

As John showed me the text message Sunday morning that Samantha had passed away, we just stared at each other for a moment, eyes wet. It was a three-second moment, but I knew exactly what he was thinking. Then, we choked it down wordlessly and moved on.

What else can you do?

Beth

Clinic Day #30… A Sigh of Relief

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March 23, 2010

Every parent of a child with leukemia lives and dies by blood counts. We wait, tensely, for counts to come back after blood draw. We search the doctor’s face for a sign that counts are good or bad. Will they mean freedom or isolation? Will they mean a blood transfusion? Will they show something worse, something unimaginable?

Today, Tanner’s counts were perfect… in leukemia world, that is. Her neutraphils (big infection fighting white cells) were at 1300 (they want her between 1000 and 1500). Her hemoglobin was 11.2, which means that, for the first time in a long time, Tanner is not anemic.

Dr. Mixan and I agreed that she is probably suffering from allergies, not a cold. So, with no further ado, she got her chemo and I took her to school for the rest of the afternoon. Then, she had a playdate with some friends at our house.

She’ll go to school again tomorrow in the early morning, but I’ll take her out for an hour or so to go see the play therapist. I asked Tanner if she thought she needed to go see Allison and she said, “Yes, Mom.” There have been a lot of adjustments lately with the house and starting school. They are good things, but they are new nevertheless, and probably a little overwhelming at times. A playdate with Ms. Allison is the best medicine for Tanner’s anxiety.

Please continue to pray for Samantha Abbott – the cutest little girl who just went through a bone marrow transplant and has battled kidney failure successfully only to come down with a very serious blood infection. The medication to cure this infection is very hard on the kidneys, so it has presented a dilemma for the doctors.

Every time I think we have it bad, there is always someone who has it worse.

Love,
Beth

A Field Trip to Aunt Beth’s

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March 24, 2010

Did you ever have someone’s house that you went to when you were a kid that seemed magical? My grandparents’ house was like that for me. They had three acres with a big vegetable garden, fruit trees and grape vines that stretched across the yard. I remember doing the simplest things there… like playing in the gravel in their driveway, or climbing up this big weeping willow that was in the median of the circular drive, or sitting on the swing in the dark with my granny, listening to grown-ups talk and the cicadas sing.

When I look back on it now, there was really not anything to do. They didn’t keep any toys at their house for us to play with, although sometimes we would borrow the neighbors’ bikes. The house was tiny and modest, with one bathroom that all seven of us would share, and I slept on the floor every night, sharing a pallet made of old quilts with my two brothers and falling asleep to the drone of the television.

But, still, something seemed so magical about being there. Food tasted better, the simplest things were more fun. I think it was just so different from where I grew up, in the suburbs of Philadelphia. My grandparents lived in the country in Huntsville, AL, on a road named after them because theirs was the first house built there.

My kids have that at their grandparents’ houses, too. The magical basement at Grandmom and Grandad’s house where you can hit a golf ball into a net or “work out” on the exercise bike, or ride a scooter. And, the great cul-de-sac at E. and Papa’s where they ride the battery-powered cars she keeps for them, sled for days, and play with their cousin, Mack.

Digging in Aunt Beth's garden

But, as a bonus, they have Aunt Beth’s house. On an acre-and-a-half in Spring Hill, Aunt Beth dabbles in lots of things that I don’t… namely gardening and cooking. Today, the kids dug holes in the dirt, spread four-o-clock seeds under the weeping willow, fed the geese in the pond, “worked out” in the basement and cooked up some pretty darn good pizza roll-ups.

Being able to spend the morning at Aunt Beth’s took a little bit of the sting out of not being able to go to school for Tanner. She came home tired and napped while Jake napped.

Tanner manning her rock store at Aunt Beth's house

Overall, Tanner doesn’t actually seem to feel bad, although she is stuffed up. I really believe she has allergies, but without knowing for sure or having any idea where he counts stand, keeping her home again today was probably the right decision. We’re off to the clinic tomorrow after dropping Jake off and we’ll find out for sure where she stands. She’ll also get her monthly IV dose of Vincristine, begin her five-day course of steroids. Tomorrow night, she will also take her weekly dose of oral methotrexate, which can kind of wipe her out the next day. So, even if her counts are high enough to return to school Friday, I don’t know how long she’ll last. Monday and Tuesday will also be pretty doubtful as she is usually pretty wiped out by the steroids.

I don’t think I’ll ever get used to this rollercoaster. I might numb myself to it, but then I find I’m numb to all the good stuff, too. For right now though, that’s how I’m sleepwalking through this current disappointment… numb and in a fog.

I’m hoping to wake up tomorrow.

Love,
Beth

Stumbling Blocks

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March 23, 2010

Tanner woke up on Sunday morning with a cold or allergies, hard to tell which. She sneezed all day and was stuffy. Monday morning she seemed no better so we kept her home from school and gave Claritin a try. She didn’t sneeze as much and, aside from a little tired patch in the afternoon, seemed fine. This morning, still stuffy and we sent her to school. They called me by noon to pick her up. Her teacher said she didn’t have her normal energy level and that she asked to go home during recess.

She actually didn’t seem that wiped out this afternoon. She was actually really frustrated that I wouldn’t let her have a playdate. I kind of think she may have allergies, but who’s to know and wouldn’t it be a stupid mistake to send her into the germ fest that school is when her immune system in compromised. Truth is, we don’t know what her counts are. They increased her chemo two weeks ago and that alone could be affecting her counts. Also, you never know what a cold could do to her. We’ve seen infections and viruses make her counts go sky high and we’ve seen them wipe them out. So, difficult to make any kind of educated guess about the right thing to do without a true counts check.

We go in for our monthly clinic visit on Thursday so we’ll keep her out of school until then to be safe. If her counts are good, she can go to school Friday, but she’ll start steroids Thursday morning, so who knows whether she’ll feel like going.

It’s so hard to make a good call in this situation. Inevitably, you go with the choice that keeps her from ending up dying from some cold gone bad, even if it means you feel like you’re slaying her psyche in the process. Seriously, this is the way we think. She senses my lack of conviction in the decision to keep her at home and begs and wheedles for playdates, school or anything that gets her around kids. I don’t understand it, so I don’t know how she’s supposed to.

I feel like this is a blow I had prepared myself for and I don’t feel too surprised by it. Discouraged maybe, but not surprised. I hate that she’s having to stay home most of the week after such a small taste of freedom, but I’m also thankful she got to have last week at all. I’m more discouraged that, after the IgG transfusion, she still seems to have caught a respiratory virus. Hopefully, that’s not the case and it’s just some spring allergies.

Tanner’s handling the disappointment okay on the surface, but is still having some behavior issues which indicate all is not as well as she claims it to be. We have an appointment with the play therapist who, mercifully, came back from vacation. Hopefully, that will help.

On the agenda tomorrow… maybe a field trip to Aunt Beth’s.

Arggghhhhhh.

Love,
Beth

A Whole Week

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March 19, 2010

Tanner made it. A full week of school. It seems so surreal, but at the same time, so normal. Normal, normal, normal, normal… I love the sound of that word. I’ve kind of forgotten how to do normal. I had the opportunity to do cool things with Jake this week and couldn’t remember what to do. We did go to playgroup today for the first time in more than nine months. He got to play with a whole group of kids his own age… priceless.

Tanner’s teacher said she did great this week. She isn’t behind at all academically and she said she was astounded by Tanner’s stamina. When she gets tired, she lies down in a beanbag chair in the classroom for a rest, but has mostly seemed like any other energetic first grader. Many thanks to Mrs. Franklin for taking such good care of her this week and to Mrs. O’Hara for preparing her so well for returning to school. Because of her expert tutoring, Tanner has been able to keep up with her peers.

I’m so scared to really enjoy the moment, though. So afraid it won’t be long before she is disappointed again. Scared that the recent increase in chemo to 75% dosage might have tanked her counts and we’re sending her to school with no immune system. Scared Tanner is pushing herself too hard and will get fatigued and get sick. Scared, scared, scared. I hate living like that. It’s one of the not-so-great side effects of this journey.

Beth and I sat out on the deck today and ate lunch while watching the birds and the squirrels playing around the creek. So much nicer than looking at a fence. It’s peaceful here and that’s something I’m trying to remember to take time to enjoy.

Played in our old neighborhood today. Jake and I parked there and walked over to the school to pick Tanner up. We brought scooters and just stayed to play with our friends. It was good medicine for Tanner to see how easy it was to still play with Corinne. She has been so anxious about that.

More unpacking and curtain hanging on tap for the weekend. And rest for Tanner. Recover from this week and gear up for the next. I’m not so naïve as to think there won’t be bumps in the road, but I’m really hoping for a smooth ride for a little while. Tanner needs it.

Love,
Beth

School Days

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March 16, 2010

Tanner will go to her fourth day of school tomorrow. It really, really seems too good to be true. She is so, so happy to be going and has adapted beautifully. Her teacher told me that on Friday, her first day, whenever she would look out at the class, there would be one child just beaming every time… guess who? We are so grateful to the kids and staff at Moore Elementary for making Tanner’s homecoming so special and for nurturing her with such love and compassion.

Friday and Monday she stayed at school until 1 pm. Friday she begged to stay. Monday she had the teacher call me to come get her… she was too tired to stay. But, today, I thought I would let her try to stay until 2 pm. I went to get her at 2 on my way to pick up Jake at preschool and she was in the gym skipping with one of those things that straps around your ankle and you jump over the rope with the ball at the end. She begged to stay and said, “See, I have aaallllll my energy!” And she did. So, I left her and came back for her at the end of the day expecting her to be exhausted but she wasn’t. After playing some wii with Jake, we went outside for some scooter and bike riding with the neighbors. Crazy.

So, I had my first real day off from Momming in nine months today. It felt great. John gives me lots of time on the weekends to recharge away from the kids, and my friend Beth is awesome about staying with them, too. But I always feel a little beholden. Not so when I drop the kids off at school. Everyone’s happy and I’m paying for them to be there so, no guilt… bliss.

I would love to say I did something decadent like had a massage or something, but I went to Big Lots for some organizing supplies and then unpacked and organized our bathroom stuff. So glamorous. But, you know what? I was uninterrupted and watched HGTV the whole time and ate my lunch by myself, so it was fabulous.

Did I mention we moved this weekend? We did. It went pretty well, although Tanner did not handle it very well. I think kids in her situation carry such a high level of anxiety to begin with that any little thing can put them right over the edge. She had very mixed feelings about moving. She is really sad not to be across the street from Corinne and worried that they won’t be friends anymore. But, despite what she says, I think she loves the new house. Bottom line, though, moving can unsettle any kid, much less one who has a lot of reasons to be afraid of what’s around the corner.

Tanner being anxious about something translates into some pretty supernanny-worthy behavior. I was in total agony when I called the play therapist to schedule an intervention and found she was out of town for the week. I am sure she heard the desperation in my voice when I left her a message.

Many thanks to my parents for helping out so much this weekend. My Dad hung and fixed many, many things while my Mom was her usual whirling dervish and ran circles around me packing and unpacking. They stuck it out even though Tanner was a nightmare and I appreciate it more than they will ever know.

Even Jake was a little whiny and ornery although mostly he just likes to tell everyone how much he loves his racecar room. He “wuvs” the new house and calls it our “new home.” God knew what he was doing when he gave me this child. He is like a balm for what ails me. Even though he is only three, he plays a huge role in helping me get through this experience. He recharges me daily with his sweetness and light.

This new house is such a blessing for us. It feels like a shoe that fits just right. I love everything about it (with the exception of my laundry room, which is really a laundry closet) starting with the cul-de-sac that we live on, which is the perfect place to ride a bike, the neighbors who have been so kind, and the view of the creek and trees out the wall of windows in our living room.

I’m off to bed in Tanner’s room. Leukemia has turned her into a chronic sleep walker and we are terrified she’ll make a wrong turn in this new environment and fall down the stairs. Until I feel comfortable that she has the lay of the land embedded into her subconscious, I’m bunking it in the twin beds.

Before I sleep I’ll be saying prayers for some kids that need them. Madelynn, our little 3-year-old friend and neighbor who has ALL is going through Delayed Intensification and is having a very hard time with nausea and stomach pain. She is three and can’t articulate her pain to her parents. Please pray the pain subsides and that her parents, Amy and Alex have the strength it takes to watch your child suffer so cruelly.

Also, a little boy named Cole has the same type of leukemia and treatment plan as Tanner, Lily and Madelynn and recently had a CNS relapse. He has caught a cold that turned into fungal pneumonia and is not responding well to treatment. Please pray that the doctors find the right medication to help him make it through this. So terrifying… this child was in maintenance and doing well. Just reminds me how fragile Tanner is even when she looks and feels great.

One more… Samantha who just had a bone marrow transplant and is in the midst of the worst of the side effects.

Too many kids suffering…

Love,
Beth

Clinic Day #29 — This is a good one!!!!

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March 12, 2010

So here’s how my conversation went with Dr. Mixan as we huddled over Tanner’s count sheet yesterday:

Dr. Mixan: “Her counts still look good. Her ANC is 2100.”

Me: “Oh, good.”

Dr. Mixan: “We’re going to bump her chemo up a bit to 75% and see how she does on that.”

Me: “Okay. “ (I pull him away from Tanner and talk quietly) “So, um, what about school?”

Dr. Mixan: “Yes.”

Me: “Really?”

Dr. Mixan: “Really.”

Me: “Really?”

Dr. Mixan “Really.”

Me: “REALLY?!!!”

Dr. Mixan: “REALLY!!!”

Me: “Tomorrow?”

Dr. Mixan: “Why not?”

This is the part where I dissolve into embarrassing Mom tears and hug the doctor. I turn and tell Tanner who is now officially the happiest girl in the world. She spread her joy all over the infusion room and everyone was congratulating her and telling her to have a good time.

So, she’s going to school this morning… for the first day… about 7 months late.

Wow. I’m speechless.

Love,
Beth

A Little Freedom and Gorgeous Weather Go a Long Way

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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

Recovering Slowly

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March 4, 2010

We got to come home at about 4:30 Tuesday after her transfusion was finished. She felt pretty awful and was coughing almost constantly. We doped her up pretty good that night and she actually slept really well and seemed a lot better yesterday morning. Her fever stayed around until the late afternoon, but finally went away. Her chest was incredibly sore from coughing so much and she cried every time she coughed all day long. Oxycodone is a wonderful thing, but apparently can’t completely fix that kind of sore muscle.
Yesterday was John’s birthday, ending the annual 6-month period where he gets to make fun of me for being older than him. The kids made cards and Tanner got him a Starbucks gift card so they could go together – she for hot chocolate and him for coffee. Jake wrapped one of his race cars, “a gween one” for him and I gave him…. Granite in our new kitchen ☺ We had brownies and ice cream, but frankly, he got kind of gypped out of a birthday since nobody is all that celebratory right now.

Tanner’s still coughing quite a bit this morning. Thankfully, Jake has school today. He is losing it hanging around here without his playmate up to par. School will offer some much needed exercise. Thank you Ms. Julie for giving him some normalcy twice a week.

In between the nursing duties, I’m still packing. Moving day is just 9 days away. As stressful as moving is, at least it is something else to think about and something with an exciting and new aspect to it.

Counting on the IgG transfusion Tanner had to turn things around for us. Hope it delivers… for all of our sakes.

Love,
Beth