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

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

Recovering Slowly

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

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

Hoping for Good Counts

I did try to crop out the toilet in the background, but couldn't do it!

February 17, 2010

Tomorrow is counts day… please, please, please let them have gone up enough to at least allow playdates with friends. The kids have played with each other exclusively for 10 days now and it is, to say the least, getting old. I don’t dare hope for counts to be high enough for her to return to school, but it would be a great bonus!

We’ll go in first thing in the morning, so we could still get Jake to school if her counts are high enough for him to return. We need to bring cupcakes so his class can celebrate his birthday.

We had a great birthday celebration despite it just being the four of us on Monday. We ended up having a picnic in the basement of the new house with Chik-fil-A and a chocolate birthday cake with Star Wars guys on it. Jake was so excited about his battery powered Batman ATV. He didn’t even scream or make any kind of reaction when we showed it to him… he just made a beeline to it, with this crazed look on his face and drove off… priceless.

Been cleaning up the basement in preparation for Jake’s kid party on Saturday. We made the difficult decision to go ahead and have the party whether or not Tanner can attend. At first, she seemed very okay with this decision, but now that it might actually happen, is upset about it. I tried to explain that we just can’t keep postponing it… that he deserves to have his party. Hopefully, it won’t come to that.

Is it possible to move without ever packing anything? I’m trying. Every time I go over to the new house, we grab stuff as we leave the house and put it in big rubbermaid containers and unload it in the appropriate room when we get to the house. Pictures off the walls, vases, candles, accessories… you name it I have just grabbed it as I walk by. My goal is to not have to wrap anything in newspaper. Mostly, though, we’re in moving denial. We haven’t moved nearly enough and need to get in gear this weekend. Our moving date is just 3 weeks from this Friday. Yikes!

Cross your fingers and toes, knock on wood, throw salt over your shoulder, whatever you want, just wish us luck tomorrow. There’s only so much togetherness we can take.

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

Snow, Sledding and Steroids

January 27, 2010

I moved to Nashville in 1994 from Philadelphia, where, as you can imagine, it snowed quite a bit. In the nearly 16 years since, this is the most snow I have seen! We got a whopping 4-5 inches of snow, which is just enough to have an awesome time sledding.

John’s Mom, Ann, came on Thursday and had a special afternoon with Tanner after clinic. Friday morning, I left the kids in her capable hands and ran out at 8 am to:
1. search for a sled (I knew it wasn’t going to happen, but I couldn’t live with myself if I didn’t try)
2. search for waterproof gloves for both kids
3. search for snow boots for Jake
4. Finally join the snow panic and ransack what was left of the stock at the grocery store so we could “hunker down” for the weekend

I would love to say that after three hours and eight stores, I was successful, but the only thing I came home with was food. No sleds, boots or warm gloves within 100 miles. Retailers must pray for snow in Tennessee.

So, later that day, in the sleet and snow (aka “wintry mix”) Tanner insisted on going out to meet some friends in the school field. We bundled up and I put three pairs of crappy gloves in my pocket so I could replenish her gloves when they got wet. It was in the 20’s and very, very cold and windy.

The kids played for 15 or 20 minutes with me replacing Tanner’s knit gloves every time they got wet. My hands were cold in ski gloves so I couldn’t imagine how she was standing it. But, after we went through all three pairs, she had a melt down and I had to give her my gloves and carry her all the way home and put her in a hot bath.

That’s the way it goes with Tanner these days. She plays so hard and with such enthusiasm, but it usually ends rapidly when she tires out. She is on steroids this week, which exacerbates her fatigue. She lives life in bursts… a burst of energy… a burst of exhaustion. I worry about how she will do at school. But, I try to remind myself that some school is better than no school and we’ll just let her do what she can.

The day after the big snow, we all went sledding with some neighbors and had such a good time. It was Jake’s first time and he LOVED it. I still have my old Radio Flyer sled from childhood and we took that and then shared our neighbors’ plastic sleds. Usually, the runner sled won’t work here, but we had freezing rain on top of the snow and, after waxing up the runners, it flew! I didn’t take my camera, but two of our friends had brand new fancy cameras and took lots of pics, so I’m sure they will send me some I can post (hint, hint Ashley and Molly).

We have two more days of steroids. She has handled them pretty well so far; some crying and fatigue, but she’s powered through a lot of it. We give her a lot of grace and hugs, remind her that it’s the steroids that make her feel this way and let her rest and watch more TV than normal. When she’s had enough, she asks to go to her room alone and watch movies on her computer in bed. We’re learning how to find a workable balance during this week. We’ll have 19 more steroid weeks, so it’s important we figure out the best way to get through the week without letting it totally halt our lives.

If school ever reopens this week (it’s already cancelled for tomorrow), I’m supposed to meet with a group of folks over there so we can come up with a plan for Tanner to attend school safely. She will need some special concessions, obviously, and we will all pow wow to figure out how to best meet those needs and how to protect her from germs as much as possible. The school has been so super and I know they will do everything they can to help.

The new house renovations are going really well. It looks like a house again instead of a demolition zone. Carpet and tile this week. Finishing hardwoods next. Then, finally, the long-awaited kitchen redo. If all goes as planned, we’ll move mid-March. Then, an empty house to sell. Hmmmm.

Anybody want to buy a house in historic Franklin, TN?

Love,
Beth

So Normal I Forgot to Blog

January 18, 2010

It’s weird for things to feel this normal, but they do. Tanner went to dance class today for the first time since her dance recital, two weeks prior to being diagnosed in spring. Aside from the hair thing, she looked like any other little girl busting a move in hip-hop class. She seemed a little tentative going into the class, but when I picked her up, looked like she was having her normal good time.

Last night, she went to Sunday night youth time at church. She was a little like a celebrity. “Tanner’s here!” they screamed. They’ve prayed for her for so long that it seemed unreal to them that she was there.

I was so proud of her. She marched in confidently, despite the fact that many of the kids had never seen her without hair. We practiced ahead of time what to do if kids stared. We’ve talked about how staring isn’t necessarily bad; it just means someone is curious. And, frankly, she’s gotten somewhat used to kids staring at her in the grocery store. So, she said, “Stare at me.” I stared, obligingly, mouth hanging open the way I’ve seen kids do. She smiled, looked me in the eye and said, “I’m Tanner. The medicine I take made my hair fall out, but it’s coming back and I think it’s going to be brown and curly.” Goodness gracious, who couldn’t smile back at that? We high-fived and I knew she would be okay.

I love her confidence. Some of it is just her; some of it is that, over time, she has found that people are extraordinarily kind about her having leukemia. Kids, although they obviously have the capacity to be cruel, are so honest that I think it doesn’t take them but a minute to get over Tanner’s bald head and just move on to the business of playing. She has really only had one negative experience, and oddly, I’m glad she had it. We were at an indoor play area the other day and a little girl approached her to play. She was only 4 (all the kids Tanner’s age are in school) and she just very straightforwardly asked Tanner, “What happened to your hair?” Tanner told her that she takes medicine that makes her hair fall out, but it was growing back. The little girl shrugged and grabbed Tanner’s hand and said, “Let’s play.” Awesome, I thought. Kids are amazing. Five minutes later, Tanner came to me and said the little girl was being mean to her. I told her to avoid her and play with Jake, but in a moment I noticed the little girl had trapped Jake at the top of a playhouse and wouldn’t let him down. Tanner was telling her to move and the little girl said, “No one would want to be your friend, anyway.” Tanner began to cry and I firmly told the little girl to move out of Jake’s way and to stop being so mean. Her Mom ended up apologizing to me and sent the little girl to apologize to Tanner, which she did, very sweetly. BUT, she then asked her mom whether the little boy could go to eat with them. Tanner looked at me in confusion. The mom said, “Honey, she’s a girl.” The little girl could not be dissuaded and insisted Tanner was a boy. Tanner was crushed, but I cheerfully explained that Tanner was a girl with short hair and poked Tanner and laughed. She started laughing, too and we ended up okay.

I don’t know why that little girl was so mean to Tanner; but I know that Tanner believes it’s because she’s bald. In the car on the way home, she asked if she looked like a boy. No one with such a beautiful face could ever look like a boy, I told her. It wasn’t the best experience, but it was bound to happen and I was glad it happened while I was with her. I think she will be better prepared next time (I’m sure there will be one). We talked about how Jake thinks men with long hair are girls and how that little girl was too young to understand that a girl could have short hair. I was glad there was a positive resolution; she and the little girl parted friends and Tanner seemed okay with it.

As I have discovered when you are living with cancer in your family, you don’t feel normal for long. Tanner was exhausted when she got home from church last night and seemed very tired this morning. We were supposed to go ride bikes and play at a friend’s and Tanner agreed that maybe it would be best that she stay home and rest while Jake and I went. That’s how you know she’s really tired. Tanner is almost always up to play and will play until she literally cannot play anymore. So, she spent lots of time watching TV and took a little nap before dance class. She seemed much more rested at the end of the day.

Jake and Friends

Tanner seems to feel really good most of the time, but she does not have great stamina. She tires out much sooner than she used to and we’re trying to learn when to stop her before she gets completely exhausted. She has gotten sick after overdoing it, so we need to watch her carefully and not leave it up to her entirely whether she participates in something or not. Makes me realize how tiring school will be for her when she does get to back. We will probably have to do half days for a while and see how it goes.

We’ve spent lots of time on the new house this week; it’s fun to see something start to come together after having been in the demolition stage for the past three weeks! This is a house we can stay in a long time and we’re trying to do it right the first time so there have been a lot of decisions to make. It hasn’t really been stressful, though. We have great people working for us and I think we’ve both learned what real stress is the past six months or so, so it doesn’t seem worth getting too worked up over light fixtures and faucets. We’ll post some before and after pictures when there is an “after.”

Love,
Beth

Good Riddance 2009

December 3, 2009

I was so happy to write “2010” on a check I wrote yesterday. 2009, for lack of a more literate description, sucked. I don’t want to say this year couldn’t be any worse than last (my realm of possibility has seriously changed), because it, of course, could be. But, I’m hoping things are on the upswing as they seem to be.

Tanner is doing a little better this month on the steroids. We’ve seen some emotional behavior, but they haven’t wiped her out completely like they sometimes do… yet. She’s still taking them through Wednesday morning, so we’ll see. Overall, she is feeling good and we are much encouraged that the doctors felt comfortable with her not returning to clinic for a whole month. That indicates they believe her counts to be pretty stable, something that can usually take many months to achieve. We’ve taken that as a sign that we can comfortably have a little more freedom, which is nice.

We had a very busy weekend focusing on trying to get all the decisions made for the renovations on the new house. It’s fun to have something else to think about, but still, in the back of my mind, I feel like I have to rush, rush, rush because you never know when a hospital trip might pop up. It’s an awful thing to have in the back of your mind, but it’s just the way it is.

Still, it feels for the first time in a long time like our lives are not being held completely hostage by cancer. We’re moving forward, which is the way it should be.

Jake moved forward tonight. He slept in a bed for the first time instead of his crib. We bought him a racecar bed (he LOVES racecars) and he was so excited. It’s easy to forget about the “other child” in this situation. In fact, I forgot to take him to a birthday party on Saturday. I feel terrible. But tonight… he had his moment and he did great.

Have I mentioned that Tanner’s hair is growing back? It started out as this little white peach fuzz, but has since darkened and grown to where she has a soft down covering her entire head. It’s amazing how fast it is coming in. I can’t keep my hands off of her head – she feels like a little downy duckling. She is really hoping it will be brown and curly! It does actually look darker, but there’s no word yet on the curls. See, even her hair is moving forward.

So far, 2010 feels different. It’s not that the dance with cancer is over by any means; I know it will go on for another year and a half and it will be very difficult, but I feel a little lighter on my feet now. I used to wake every morning and my first thought would be, my daughter has leukemia. Now, I sometimes wake up thinking something else – the new house, renovations, getting a new dog – good things.

Here’s to more good things for all of us this year.

Love,
Beth

Resting

December 30, 2009

We’re resting. Trying to sleep and be still enough to get over the hump of this virus barrage. All of us have felt sick at one point or another. A good night’s sleep seems to have cured me, but I feel one sleepless night away from a nasty cold. Tanner has stayed fever free, but seems to feel bad sporadically. She has spent about 6 hours a day for the past few days in bed watching TV by herself… a sure sign she doesn’t feel up to snuff. She complains of a headache and nausea and just generally not feeling well.

The difficulty in our situation is discerning which symptoms belong to an illness and which belong to the chemo. Especially now that we are adjusting to a new phase of treatment. I remember cancer moms telling me that their kids were very fatigued during the beginning of long term maintenance, so who knows.

Tomorrow is clinic day. It marks the beginning of the second month of long term maintenance. Tanner will get Vincristine through her port and will start a five-day pulse of steroids. It’s so frustrating that the first day I would expect her to start feeling better from this virus is the day she will start the steroids that make her feel so bad.

Renovation work is starting on our new house, which gives John and I something else to think about. It’s nice to have a distraction, but I really need to get moving with this packing stuff!

Love,
Beth