Clinic Day #30… A Sigh of Relief

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 Whole Week

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

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!!!!

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

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

Steroids and Playdates

February 27, 2010

Our new-found freedom has been a little limited by the fact that Jake was sick and I didn’t want to share his germs with anyone else and Tanner being on steroids again.

Jake’s fever broke sometime in the night on Thursday and he is feeling better, though still coughing. Tanner is coughing some and complaining of a sore throat, but it’s difficult to tell what is the steroids and what is her actually not feeling well. She’s handling the steroids very well. She’s been tired (took a 2-hour nap on Friday) and asked to go to bed at 6:30 tonight. That’s pretty typical of steroid week, though.

Although we’ve got this new freedom, we have our eye on the prize and are still being somewhat cautious. School in two weeks, if her counts can stay up. There’s not really anything you can do to affect counts, but getting sick certainly doesn’t help. So, I’m carefully controlling who she sees so we can try to make it the next two weeks without catching anything. She seems more susceptible to getting sick during steroid week – or at least that’s my non-medical opinion.

The kids went to Aunt Beth and Uncle Glenn’s this morning to play and give John and I a chance to get some things done at the new house. Awesome! They had a great time, as always, but Tanner had fallen asleep on the couch while watching a movie and we had to wake her to go home. She rested when we got home and had a much-anticipated playdate with Corinne this afternoon. She was wiped out by 6:30 and ready for bed.

John and I got to spend some time cleaning the construction dust out of the new house and putting together some shelves we bought for the kids’ rooms. The renovations are going well and on target for us to move in two weeks… yikes! So, I suspect we will do lots of packing tomorrow!

Love,
Beth

Indoor Fun

February 14, 2010

Tanner and Jake playing wii

How many ways can you have fun while stuck in your house and no visitors allowed? We’ve tried ‘em all… trust me… but have had lots of help from friends.

Thursday afternoon, our dear friend Anna Lynn, who is forever thinking of us, and is forever creative, brought Jake’s valentines from his class to us. He had missed his valentine’s party (and his Christmas party and his Thanksgiving party). His class made valentines for Tanner, too, so we had a lot of fun opening them. She also brought beautiful yellow tulips (that’s so Anna Lynn), valentines from our church staff and sugar cookies with a cookie decorating kit (from another dear friend). We were opening those valentines when I got a text from Tanner’s home teacher, Mrs. O’Hara saying there was a package on the doorstep. It was an early housewarming gift – pots with gardening gloves, tools, seeds and even dirt. How cute!

Friday, Corinne brought home Tanner’s valentines from her class… she LOVED them! There was one unsigned valentine and she’s still trying to figure out who her secret admirer is (I love this!). I opened the door to find another package from Mrs. Wood’s 4th grade class – they have been so super to Tanner – they sent valentines and birthday cards for Jake. So sweet.

We also had valentine packages from some of John’s co-workers and from all the grandparents. It has really helped alleviate the boredom. These days have been hard on all of us, but Tanner is especially frustrated. She had a small taste of freedom and then it was taken away so quickly. She is definitely feeling it.

We had a breath of fresh air Thursday and Friday from Aunt Beth. Beth is one of my two best friends and has been so unbelievably generous with her time. She is my savior when I need to balance the impossible – a child who can’t leave the house and a necessary task that requires me to leave home. Thursday afternoon, she came so John and I could meet with Tanner’s school. Then, she stayed overnight so I could take Jake first thing Friday morning to his annual kidney ultrasound. Jake was born with one kidney and has to be monitored. His one kidney is stellar! Tanner got to stay with Aunt Beth while Jake and I left for several hours and I think Beth must have been totally pretended out by the time she left!

The meeting with the school went great. They were so awesome and are doing anything and everything they can to make sure Tanner will be as safe as possible when she returns to school. She will have her own bathroom and her own computer to cut down on sharing germs. Together, the group of us that met developed a 504 plan. It is a legal document that spells out Tanner’s limitations, outlines what the school will do to accommodate them, and excuses her from normal absence rules, etc. She’s done so well here at home keeping up with her schoolwork, thanks to Mrs. O’Hara. She continually scores at or above grade level.

Thank God we have this new house to go “visit” when we are bored out of our minds and tired of looking at these same four walls. We go jump in the bouncy house and ride the little train and run around in the empty space to get out our ya yas! John went over there for several hours today to put together Jake’s new Batman battery powered ATV. We’ll give it to him tomorrow on his birthday… he will, to say the least, be beside himself. He loves anything to do with cars and motorcycles and asked to have a motorcycle birthday party. Beth and I painted a mural on the wall of his new bedroom with a road coming through a green hill and clouds in the sky. We’ll use the road as a headboard for his race-car bed and put his airplane shelves in the sky looking like a red plane flying out of the clouds (Thanks, Johnny). It has been a rough road for him, too, and he deserves an awesome room.

We all made valentines for each other today and had fun giving them to each other after dinner. The kids and I decorated the sugar cookies for John, but couldn’t eat them after all the valentines candy.

So, we’re stir crazy, but trying to make lemonade, if you know what I mean. Tomorrow is Jake’s birthday. I am sad that there is no one but us to celebrate his day. Usually, we invite family and maybe a few close friends for cake after dinner. He’s too little to really understand the big party is coming. We’re hoping Tanner’s counts will be high enough on Thursday to come to his party, but if not, will have it anyway. He needs to have his birthday… even Tanner said so.

Three years ago today, I was going to bed right about now, bags packed, knowing that I was getting up to head to the hospital to deliver a baby that threatened to be too big if we waited. Jake beat the doctors to the punch and came on his own that day, without induction. So like him to be accommodating. Eight pounds, 15 ounces of beautiful, long, sweet baby boy. John and I knew Valentine’s Day would be forever spent preparing for his birthday and could care less. He is the best Valentine’s gift we could ever ask for.

Much love,
Beth

A Setback

February 2, 2010

I spent most of yesterday trying to convince myself that my glass is half full. It is. I know it is. But, there are times when it is harder to remember than others.

Lurking in the recesses of our recent good news about school was a cold Tanner was fighting. Yesterday morning, she woke up with her ear hurting. Rather than drive all the way to the hospital, I ran by the pediatrician’s office. They were awesome. They took us right back so we didn’t have to wait in the germy lobby and, of course, Tanner had an ear infection. They have been a long-standing problem for Tanner.

Our pediatrician called our oncologist, Dr. Mixan, who said he wanted Tanner to have a Rocefin shot in addition to oral antibiotics. Rocefin is a broad-range antibiotic that Tanner typically gets through her port any time we go to the hospital with a fever. “A shot?” I repeated. “What kind of s-h-o-t are we talking about here?” Not pleasant, she said. Tanner has a huge issue with shots, but has no problem getting a big needle put into her port in her chest (go figure) so we decided to go to clinic and get the antibiotic via her port. It took longer, but saved us a lot of trauma, screaming and holding her down.

It was a good thing we went. Her counts had dropped across the board. Her neutraphils dropped to 960 from 3300. Which, of course, means back on the restricted diet and no school until they go back up. Tanner cried. She had wanted a salad for lunch so badly. They did a chest x-ray, which we never heard any results on so I assume it was negative.

It’s hard for good news to be so fleeting. For the celebration to constantly be in so much jeopardy. I found myself wishing we had not made such a big deal about going back to school or about being able to eat whatever she wants. Less disappointment that way.

I think my disappointment must have been very visible. Tanner’s nurse, Cari, said gently, “It’s just an ear infection, Beth. She’ll get over it quickly.” And, she’s right. It could be so much worse. I had a pep talk with myself in the car on the way home. This is a long journey and I had no right to expect it to be smooth at this point. I can’t allow myself to be tired when there is so far to go. If I expect Tanner to keep fighting, I have to keep fighting.

So, it took all day (and I mean ALL day) to get to see the glass half full. It is. She’s alive and that, alone, is everything to be thankful for. But, more than that, we have joy. Even if it is fleeting, it is worth having. Living to avoid disappointment is not living at all and that would be a disservice to the fight that she is fighting.

She is not feeling real great this morning. It’s the last day of steroids (hurray) and that’s never a real great day for her. Add the ear infection and she is pretty miserable. We’ll lay low and, hopefully, wait for another celebration to come.

Love,
Beth

Two Doors Down

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

A Blizzard in Tennessee

December 7, 2010

No point in posting yesterday… just would have been another steroid rant. But today was a totally different matter. It snowed… Nashville-style, which translates into a ½ inch dusting of snow! School was cancelled the night before (yes, before it even started to snow) and we expected to wake to 2-4 inches. Jake woke up first and he and I pulled back his curtain to peer outside hopefully, in search of the much- anticipated snow… NOTHING! Tanner was really indignant.

But, by mid-morning it had started to snow and we started the long process of suiting up for a snow walk. After getting officially bundled up, we met Corinne and the gang over at the school next door. The kids found some ice to slide on and traipsed all over the field, our friends’ golden doodle romping happily in circles around us.

We threw sticks in the river, jumped on icy patches in the field until they cracked, piled up sticks and pretended we were making a fire and were joined by some other neighborhood friends. I expected Tanner to peter out early since she doesn’t always regulate her temperature very well and because she had just finished steroids and had felt terrible and seemed weak the day before. But, as always, she surprised me. We stayed out, in sub-30 temps for more than an hour. Jake actually begged to go home first, but everyone stopped on the way home to pepper the neighbors’ driveway with snow angels. Jake had never made a snow angel before and was delighted.

We came home and had hot chocolate with a LOT of marshmallows. Jake skipped the hot chocolate and just ate a cup of marshmallows. Boy, can we make the most of a ½ inch of snow in Tennessee!

I, believe it or not, appear to have pink eye. I’m so disgusted to be sick in some way again I just can’t tell you. My immune system is pitiful this year. I think it makes a serious case for the effects of stress on your body.

So, we’ve made it through the first rough week of the month. Each first week for the next year and 8 months will be difficult – Vincristine, steroids, methotrexate. But, the next three weeks should be easier, so that’s something to be thankful for.

No school again tomorrow. Ice. Not that we would have gone to school anyway! But, that means friends at home to play with.

Love,
Beth