Category Archives: gratitude

Monkey Business

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Kim, me and Beth relaxing at dinner

Kim, me and Beth relaxing at dinner

August 4, 2009 I’m back! It was a great weekend! We went to a big, beautiful cabin in the mountains of Asheville, NC. Lots of lounging, shopping, eating, laughing, girl talk, sleeping, more lounging, free flowing wine and a beautiful view of the smokies to boot. We spent much of our time trying to think of names for Kim’s two goldendoodle puppies that she will bring home soon. “Rhett and Scarlet” and “Brandy and Whiskey” were Kim’s favorites, although Beth and I maintain that no matter what she decides, we are calling them “Jethro and Ellie Mae.” After all, we were in the “hills, that is.”

Wouldn’t have been such a great time without Beth and Kim and wouldn’t have been possible without my awesome husband and mother-in-law at home taking care of the kids.

I did miss the kids, though and I was happy to be home. Things seemed to go very well at while I was gone. I think the backpack making party and barbecue afterward was the highlight for Tanner. Everyone seemed to have a good time and they made a lot of backpacks to boot. I love this picture of them. Tanner and Jake look like they had a huge time, as usual. Thanks to our church family for making this possible for Tanner.

Tanner, Jake and Friends make backpacks for the needy

Tanner, Jake and Friends make backpacks for the needy


This week has been a nice break from the normally restrictive nature of our outings. With Tanner’s counts at an almost normal level (although her immune system is still more compromised than normal), we were able to cautiously get out a little more. We ate last night at Pie in the Sky restaurant where the kids get to play with pizza dough while they wait for their pizza. Then, this morning I took the kids to Opry Mills mall to buy new shoes and go to the Rainforest Cafe. Normally, this is a huge hit, but it was nearly a bust today. I forgot to bring Tanner a sweater and she was so cold I wrapped a paper napkin around her shoulders while Jake spent the whole time very nervous that the animatronic monkeys were going to leave their perch and attack us. He didn’t even eat since he had his fingers stuck in his ears the whole time saying, “It’s too woud” over and over again. When we threw in the towel and decided to take the food with us and eat it in the car on the way home, he said, “Wets get out of here!” Tanner and I laughed about that the whole way home.

This afternoon Tanner had her friend, Isabella, over for a playdate. They made a hair salon in the bathroom and washed each other’s hair and then put on an impressive show for John, Jake and I complete with dancing, piano, acting and singing. Tanner sang the national anthem. It was quite a patriotic moment.

We’ve been incorporating some of the play therapist’s suggestions into handling Tanner and it does appear to be improving things. There are less tantrums, and although she is definitely still angry, she seems to be able to better get hold of herself. She went to talk with the therapist today. I won’t find out what they talked about until next week, but Tanner had a good time and wants to go back so that’s a good sign. Hopefully, she’ll be able to unload a little anger at these sessions and we can find a way to talk to her about this whole rotten thing. It would be nice to be her partner in this instead of her punching bag.

Poor Jake has definitely started to feel the tension in the house and is acting out as well. (I’m just waiting for the dog to rebel next!) It just breaks my heart. He is the sweetest little thing ever and it’s not in his nature to act this way. Thankfully, he’s pretty easy to deal with and I’m hoping a little visit to Grandmom and Grandad’s next week might give him the undivided attention he deserves. It’s hard for a little fella to not get lost in all this, and we need to remember that his needs are just as important as Tanner’s even if she is sick.

Tomorrow is another landmark in this long journey. It is the last day of Consolidation, the second of five phases of treatment Tanner will endure over 2 1/2 years. It’s also probably the last day we’ll have for a while that she’ll be feeling this good. Thursday, provided her counts remain above 750, which I assume they will, we will start Interim Maintenance. That day, August 6, will mark the first day of exactly two years of remaining treatment. They count it from the first day of Interim Maintenance and go two years to the day from then. Crazy how they know exactly how long to treat leukemia to give you the best chance of avoiding a relapse.

Again, please pray for Tanner’s friend Lily. She has only a week to get her counts up high enough to start school on-time and still isn’t there yet. I just know from our experience how important it would be to her to be there on that first day and to be part of the class from the start. This is so hard for these children… not something an 8-year-old or a six-year-old should have to worry about.

Love,
Beth

A Little Freedom

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July 30, 2009 A great day at clinic today. Tanner’s counts were super — her neutraphils are 3400, which is almost normal. So, a little more freedom this week; we are allowed to go to a restaurant, not just to bring food home, but… drumroll please… to actually eat there! Hurray!!!

It was our easiest week yet. We just went in for blood work and a doctor visit and then came home. We had a prescription meds to wait for downstairs, so we ate pizza in the food court (again, something we have never been able to do) while we waited. Tanner seemed excited just to be able to eat in the presence of others.

Next week, provided her counts are still good, we start our third phase of treatment (of five), Interim Maintenance. It lasts two months and consists of IV infusions of vincristine and of Methotrexate, which up until now, she has only had injected into her spinal fluid. We will go every 10 days, and the methotrexate level will be increased each time until her counts are so low, we can’t increase it any more. So, we can expect some low counts in this next phase, I’m afraid. The Vincristine causes neuropathy (nerve pain, weakness, tremors) in addition to a long list of other side effects, and the methotrexate can cause painful mouth sores. We are taking an amino acid called glutamine to try to prevent the mouth sores. I also think Vincristine is what caused so much of Tanner’s hair to fall out in the first phase of treatment. Her hairloss has pretty much ceased, but we haven’t had any Vincristine for a while. I think this will be the point where the rest will likely fall out. I has thinned considerably, but she has a lot of hair, so it’s still pretty. My hope is that it is cool outside by the time she needs a wig/hat/scarf so it will be comfortable for her.

Also, school starts in just a little over one week. I think that will be really hard for her and will also mean there is no one available to play with her during the day. Then, she will have a homebound teacher for two hours, two days a week after school, so that will be two more days she can’t play with anyone. This will be our toughest challenge yet, I believe. Tanner is highly social and it will be a real challenge to keep her happy with no one to play with. I’m going to have to work very hard to develop some kind of schedule to our day, something I am not great at.

Had a great visit with the play therapist yesterday. John and I met with her for an initial consultation; Tanner will come next week. We liked her a lot and she seemed to have good insight into Tanner’s personality without even having met her. She believes some of Tanner’s misbehavior is a result of anger, but also that some is anxiety. She told us to think of anxiety as energy and explained that, in a six-year-old, if energy is not somehow channeled positively, it will become misbehavior. She’s helping us learn some strategies to redirect that energy and she will help Tanner do so also. We’re hoping it will help her get through not just leukemia, but through life.

Tomorrow I leave on my girl’s weekend to a mystery location. I am so excited… I expect lots of girl talk, laughing and, most of all, sleep. I don’t believe I’ve spent a weekend with the girls since Tanner has been born. Thanks again to Beth and Kim for planning the weekend and just for being my best friends for all these years. But, most of all, thanks to my amazing husband for recognizing how much I needed this and for knowing that I would have never done it on my own.

So, I’m taking a blog vacation until Monday. Maybe John will update you while I’m gone!

Love,
Beth

A Day for Backpacks

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First Day of Kindergarten Last Year -- with a new backpack!

First Day of Kindergarten Last Year -- with a new backpack!

July 28, 2009 Don’t you hate when you wake up with that nagging feeling you’ve forgotten something important? Like that the physical therapist is coming at 8 and the cleaning people are coming at 8:45? Sounds great except that I didn’t get up until 7 and still had to tidy up the house, feed and dress both kids, tackle morning meds for Tanner and dress myself, and hopefully, brush my teeth (a shower was completely out of the question). Aghhhhh!

Rushing (it’s okay to put clean clothes back in the dryer to hide them, right?), rushing (did I give her the neurontin or not?), rushing (I don’t have to have contacts in for the P.T., right? Glasses are okay.). Whew! I managed to get it all done by 8 and then, the PT doesn’t show. She forgot to put it into her computer.

Now what do we do? It’s raining and we need to get out of the cleaning crew’s way, but we are so limited as to where we can go. So, I decide Target at 9 am is pretty safe as long as we wipe down the cart well and stay away from everyone else. We decide to get excited about school backpacks.

At first I thought that the best way of handling Tanner having to miss so many fun events was to not even let her know they were happening. We still use that strategy quite a bit, but I am realizing that she wants to be involved in whatever way she can. It makes her feel part of things even when she can’t be there. So, though Tanner won’t be going to school in the fall, we decided to go through yearly ritual of buying new backpacks and lunchboxes. It will give her a place to keep all her school materials that the homebound teacher will likely require. And, Jake will start his second year of Mom’s Day Out on August 27. He goes two-days-a-week and really loves it. So, everyone needed new stuff.

Target didn’t have what we wanted (I know, seems impossible, right?), so we headed to Toys R Us, with strict warnings that we would be heading directly to the backpacks and straight back out, without touching anything else or detouring at all. We left with a Hannah Montana backpack and lunchbox (shaped like a guitar!) for Tanner and a Scooby Doo lunchbox and Superman backpack, complete with a cape. for Jake.

After we got home, we got a call from the new pastor at our church. He and the Children’s Minister wanted to come by to see Tanner after lunch. We had a really nice visit, despite the fact that Tanner sprinkled both of them liberally with “pixie dust,” aka glitter.

We talked about happenings at the church and the pastor mentioned Kathy’s Backpacks, which is a really cool ministry of our church. We assemble hundreds of backpacks loaded with school supplies for kids in need and donate them to a local elementary school. He wondered whether Tanner could drop by and help for a little while and when I explained that would probably be too many people, insisted that we could make it work.

Within a couple of hours, I got an email from Rebecca, our children’s minister, inviting Tanner and three of her close friends from church to a special backpack packing session on Friday. No mention that it was because of Tanner’s limitations; it sounded more like an exclusive party invite. God Bless Bethlehem Methodist Church and those who worship and work there. With so little fanfare, they created an opportunity for my child, who feels like a charity herself, to give to others. Not to mention, the rare chance to get together with a small group of friends.

So, it was a day of backpacks. Backpacks that carry important things and backpacks that give important things to others. And, backpacks that will empower a little girl to be a giver instead of a receiver. Amen to that.

Love,
Beth

Disheartening

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July 25, 2009 What is worse than renting a storage unit, decluttering your house, moving all the clutter into a storage unit, and painting, caulking and patching your house to ready it for sale?

Moving all the clutter back into your house without ever having moved.

John and I stood today at the open door of that storage unit and stared glumly at the “clutter” in it, completely disheartened. We had a contract on a house we loved when Tanner was diagnosed with leukemia and got out of it because it was the right thing to do. It’s still the right thing to do, but it doesn’t make it any easier.

This was a house with a huge, park like backyard with mature shade trees that backed up to a lake on which you could fish or canoe. It was in a neighborhood with lots of kids and a playground just four houses down the lakefront from ours. It almost didn’t matter what the house looked like; the yard made up for any fault we could find with it. But, we loved the house, too. It was a little bigger than the one we have, but not too big, and had an unfinished basement like the one I grew up with, where you could ride a bike or a scooter or roller skate on a rainy or cold day. It was the house we were never going to move from (and that’s saying a lot for us; we’re serial movers). When I picture it in my mind, I picture the kids running, hand in hand through the yard and Tanner turning toward us to say, “Please, please can we buy this house?” the way she did the day we took them to see it.

It was just one more in a series of disappointments for her that we didn’t buy this house. We told her it had radon (which it did, but they fixed) so she would never know we didn’t buy it because of her. Not only would moving have been the straw that broke our backs during this stressful time, it would have meant a change in schools for Tanner, a fact that the social workers agreed would have been devastating. Nothing like being the new kid at school… entering halfway through the year… with no hair.

Since then, both of us have admitted to each other that we have driven by the house we were going to buy, looked it up on the Internet to see if it had sold to someone else and checked intermittently to see if another house had popped up for sale on the same lake. It’s just been hard to let go. Even though a new house seems completely unimportant when compared to your child getting leukemia, it still bothers us. For me, that house represents the life we could have had without leukemia and I long for it.

Today, I think both of us were able to let that house go. The thankless task of moving this clutter back to our house got easier as we got moving. We even pulled aside a considerable pile to give to goodwill; after all we have lived just fine without this stuff for months now. And, I’m grateful that we did the painting, patching and caulking that we did on our house… it needed it and we needed a deadline.

We’ve tabled the idea of moving until we get through at least the next 4-6 months of chemo and see how it goes. And, I know we’ll find another house with a beautiful yard.

Still, it won’t be the one we lost, that we dreamed about as a family. That one is gone. It is just one more casualty of childhood cancer.

Tanner, however, will not be lost. We will continue to fight the fight, even on the days when we have to do it for her… even on the days when she fights us, instead of the cancer. I refuse to let cancer take anything else from my family.

Childhood cancer takes so much from so many. Please pray for all the kids who face this disease… for Thomas, the teenager we met the other day; for Lily, our 8-year-old friend who is fighting to get her counts up so she can start school on day one this year, with all the other kids; for Kinsee, who bravely endures the grinding chemo schedule that her rare early T-cell leukemia demands; and for the countless other kids we have yet to meet who battle this insidious disease every day.

And, if you need any “clutter,” drop by our garage. I have a feeling that stuff might stay there for a while.

Love,
Beth

P.S. Have I mentioned in all these novellas that I write nightly, how important it is to have a good partner when you are going through something like this? How I don’t know how anyone could do this alone? How I don’t know how I could do this without John? I am so fortunate to have someone who recognizes the strain of spending every day immersed in this disease and who goes above and beyond every day to make it easier for me in any way possible. A weak marriage would never survive. It’s easy to turn on each other in the heat of the situation, and believe me, we’ve done it at times. But, all-in-all John and I make good partners; we always have. We divvy up the extra responsibility of this disease, and, if I’m being honest, John does more than his part. He is strong where I can’t be and, hopefully, I’m able to return the favor when he needs it. He has arranged, in cohorts with my two best girlfriends, a 3-day trip next weekend and is sending the three of us away while he and his Mom take care of the kids. Who has a husband like this?!!! I do, I do!!! Lucky me.

Just a spinal tap

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July 16, 2009 My friend Ashley laughed at me yesterday when I told her, “She just has a spinal tap with chemo tomorrow, so I think we should be able to play in the afternoon, no problem.” She said most people would be stressing about their kid having a spinal tap and would expect it to be an exhausting day.

It’s all in your perspective, though. When you’re on spinal tap number 5 within the past 6 weeks, it doesn’t seem like that big of a deal. We’re pros now at the whole process and Tanner is the biggest pro of all. I realized today, though, that I’ve been taking her attitude about going to clinic for granted. A little boy, about 4 or 5, cried today the whole time we were in the waiting room. His mother’s reaction told me that it wasn’t the first time and that she was used to him fussing. We heard him screaming later when we were in our exam room… I don’t know if he was getting his port accessed for an IV or whether something else painful was happening, but it made me realize what a trooper Tanner has been.

Had a good day at Clinic today. Her counts had rebounded really nicely. Her neutraphil count (big infection fighting white cells) was 2200, up from 1130 last week. It doesn’t really change what we are able to do too much, but makes us feel less anxious, at least, about her getting an infection.

Her energy level continues to astound me. She never took a nap today (aside from the “nap” she took while getting the spinal!) and we rode bikes and played on the playground in the afternoon. She even had energy for a monster tantrum after dinner (although, in retrospect, maybe all the activity today caused the tantrum… hmmm).

She has had quite a temper for the past week or so. The steroids are out of her system, so I can’t blame it on that, but wonder sometimes how angry I would be if this were happening to me. I wonder if I might be snapping at those around me, even though it wasn’t their fault… and I’m a grown-up (at least, most of the time). Even with Tanner’s considerable verbal skills, a six-year-old doesn’t have the maturity to express that anger appropriately. (Which is easy to say now that no one is screaming “No!” at me.)

I know that finding out there is yet another thing she is not allowed to do or another event she is missing is really frustrating to her. She will tell me how it makes her feel every once in a while and it breaks my heart. At the end of her birthday party, some of the other kids were talking about going to the mall playground to keep the party going. Tanner got all excited and started talking about going there and then to chik-fil-a afterwards. I reminded her that we can’t play on the mall playground, but promised her that we would pick up chik-fil-a and take it home. She burst into tears; I think she had felt so normal at her birthday party that she had forgotten she had limitations. I hated to be the one to remind her.

Then, two nights ago, we had a really special treat… Matthew West, his wife Emily and their two daughters, Lulu and Delaney, brought us dinner at the house. Tanner and I had just watched one of Matthew’s videos on demand the day before and here he was in our house. They were such nice people and we had a great time, just talking and sharing our kids. Tanner took Lulu, who is 3, right under her wing and led her all around the house. After a while, Matthew brought out his guitar and sang a few songs for us. What an amazing voice and his songs have such a great message. He was telling Tanner, who was listening raptly, that one of his songs was written about how God helps when things are hard and said to Tanner that she has to be brave and strong and has been through lots of difficult things. Tanner piped up and said, “There are a lot of things I’m not allowed to do now and it’s hard.” Then, she mustered up a half-smile and said, “But, it’s okay, though.” Clearly, it’s not.

Tanner & Lulu watching Matthew West sing

Tanner & Lulu watching Matthew West sing

We ended the visit with a prayer between the two families, with everyone holding hands. It was really special and we felt like we made new friends. We didn’t know them before that night; they are friends of a friend and just got interested in our family and wanted to help. Just another example of how blessed we are by people’s kindness.

Okay, so this post is long enough. Making up for no post last night. My friend Beth spent the night and we watched a movie, drank wine, giggled and stayed up too late, so no post, but great therapy.

Love,
Beth

On Being Grateful

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July 10, 2009 Yesterday, when we were at Vanderbilt Children’s Hospital for Tanner’s clinic visit, there were several kids in the various waiting areas we visited that reminded me to be grateful Tanner has leukemia. There, I said it. Grateful my daughter has leukemia. Because, for all the horror that word struck in my heart the first time I heard it on May 29, it could be worse. In approximately 2 years, her treatment should be over. She will still have to be tested frequently to be sure we don’t relapse, and for years and years to come, we will worry about her increased risk for a second cancer, but the treatment will be done and she will be living a normal life doing normal things that an 8-year-old does.

The kids I saw yesterday will never do normal things. Their parents will spend countless hours, no years, of their lives in hospitals and doctor’s offices, and undergo too many tests, procedures and treatments to imagine. And, in the end, their kids will never do normal things that an 8-year-old does. And, they will never be able to say that treatment is over.

So, I reminded myself yesterday to be grateful that Tanner has a cancer that is treatable… with a 95% cure rate and that she is low risk with an excellent prognosis.

Then, today, I forgot to be grateful… actually, I just couldn’t be grateful. Days and days of staying around the house, not being able to do the simple things you want to go do, listening to LOTS of whining (no matter how legitimate), enduring the behavior issues that accompany parenting one child who is sick, frustrated and disappointed and another who no longer gets out enough or gets the exercise he needs… all of these things combined just dragged me down. I didn’t feel grateful or lucky… just fed up and tired.

Suffice it to say, I did not win any “Mom of the Year” awards today.

Oddly, two things snapped me out of it: 1) We went swimming at the Whitlers’. Who can be fed up when you’re in a pool? Tanner got to play with some other kids, I got to talk with some adults and Jake got to throw every pool toy the Whitlers own (and they own a lot!) into the pool at least three times. Everybody went home a little happier. 2) My best friend Kim had to put down her beloved dog of 15 years, Boo. I went over to Kim’s house with our other best friend, Beth, and her husband, Glenn, to sit with Kim and realized that I had a better day than she did by a mile. It seemed pretty self-indulgent to be having a pity party at that point.

So, we’ll start again tomorrow. Tanner is doing great so far with the chemo she got yesterday and the daily chemo pill she’s taking. A little nausea, but nothing else, so we’ll cross our fingers that it stays that way and try to do something fun this weekend… without anybody whining… including me.

Love,
Beth

True Friends

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July 7, 2009 When this whole thing started, someone made a comment to me that an ordeal like this will let you know who your true friends are.

I have no idea what they were talking about.

We’ve had nothing short of an outpouring of friendship and love in the last month. When I look around me I see friends everywhere. Right now, there are 455 fans of Tanner’s “Friends of Tanner” Facebook page and I know there are more who log directly on to Tanner Time. Some of those people we haven’t seen for a while — college friends, former co-workers, family friends and whatnot. Some we see lots. Some are acquaintances. And, some we’ve never met. But, here’s the thing; anyone who loves my daughter enough to check in on her every couple of days, who cares enough about us to send us heartfelt words of encouragement that help us get through the day, who offers to help even when we don’t realize we need it… anyone who does these kinds of things is a friend in my book. What else could you ask for from a friend, right?

In the last month, we’ve reconnected with some people that we haven’t seen in a while. They’re the kind of people with whom you pick right up where you left off, as if no time had passed at all. They love our kids… and us, and we love them. They invite us to dinner at their houses, since they know we can’t go out to eat; they bring us brownies and blue powerade; they knit hats for Tanner’s impending bald head. Their kids treat our daughter with kindness, gentleness and love.

Then, there are those that have always been here for us. The friends we see every week, and know, without even asking, that they are at the ready when we need them. They watch Jake so both John and I can go to Clinic with Tanner, they come over and sit in our house after the kids have gone to bed so John and I can take a walk together, they carry my tired child across the street at the end of the night, and they drop by with crafts to remind Tanner she isn’t forgotten.

We are lucky beyond all understanding.

So, maybe what that person said to me was true… an ordeal like this really will let you know who your true friends are. I am humbled to say ours are somewhere around 600 strong and growing.

Love,
Beth

Independence Day

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July 5, 2009 If you told John and I a week ago that we could have had the kind of holiday weekend we have had, we never would have believed you. Our daughter is back! Instead of having to convince her to get off the couch, we have to convince her to take a nap.

What did we do this weekend? A better question would be what didn’t we do? Saturday morning we went swimming at the Whitler’s. If you didn’t see Tanner fall on the way to the pool or labor down the stairs, you would have never know there was anything wrong. In the water, she is her old swimming self. Flips under water, swimming to the bottom for torpedoes Jake kept throwing into the pool, paddling across the deep end. She looked like any other kid. It was a moment of pure joy for John and I to watch her in an arena where she could match up to other kids.

Having said that, she was exhausted afterwards. I had to wake her 3 hours into a nap so we could go to a 4th of July cookout at the Adkins’ across the street. The original plan was to go over at 5:30 or so, then come home for a little while for a rest and then go back for fireworks. Apparently, that was not Tanner’s plan. We stayed straight through until almost 9 pm. They ate, played inside and outside, caught fireflies, ate freezer pops and did everything a kid should do at a cookout. Tanner was right there with the other kids. Sure she couldn’t jump or run to catch a firefly and she fell several times, but she hung in there and had a great time. Again, though, when she got tired, it was instant. She suddenly said, “Mom, can we go home now? Right now?” Kendall carried her across the street to the house. John and Jake had gone home earlier when Jake discovered that he did NOT like fireworks. “I not like that BOOM!” he said, with his little hands over his ears.

Sunday was the best day of all. We hung around and took it easy all morning… because… Roger Day was coming to our house for a private concert!!! If you don’t know who Roger Day is and you have kids (or grandkids), you should. He’s awesome. He’s a singer/songwriter that the kids love and the parents can actually enjoy as well. His lyrics are funny and clever, but the music is solid and his concerts are tons of fun. We’ve seen him a number of times and own all his Cds and his video. He plays all over the country, but lives right here in Franklin. You can check him out at www.rogerday.com. A million thanks to him for taking time out of his Sunday to help a little girl who can’t go to his concert this Thursday at Brentwood library (shameless plug). We always go to see him when he plays in town, but can’t anymore because of Tanner’s immune system. After he left, he actually drove all the way home and came back with a signed T-shirt for Tanner that he had forgotten to bring. Nice guy or what?

We invited a few friends over to sing and dance with us and had the best time. All the kids were dancing and doing all the special moves to “Mosquito Burrito” and “Roly Poly.” A physical therapist couldn’t have worked Tanner out any better. Roger played for nearly an hour and serenaded Tanner with his cool Happy Birthday song. She was thrilled. We’ll try to post some video to the site, if we can, to show what fun the kids had. The funniest part was when Roger came through the door and Tanner saw him. She walked to him, intending to throw her arms around his waist in a hug, but fell right before she got to him. Miraculously, she played it off as if she had meant to do it and threw her arms around his calves instead, saying, “You’re Awesome!” She never missed a beat.

After Roger left, Tanner went to Corinne’s house for Ms. Ashley’s famous homemade pizza. Ashley called at 6:30 to say that Tanner was going to fall asleep in her plate if I didn’t come get her. While she was there a tooth fell out, too. When I went to get her, she asked if I would carry her home and when I picked her up, she whispered in my ear, “Can we go straight to bed?” Which is exactly what we did. Exhausted, but happy.

In short, this weekend was better than we could have ever hoped for. I’m not so naïve as to think that there aren’t hard times ahead, but I’m just trying to live in this moment and not worry about what next week will be like. We’ll hang on to the memory of this weekend for a long time and bring it out when we need it to remind us of what is at the end of this long journey. It was the first time that I felt like we ruled the leukemia instead of it ruling us. We got the best of it and declared our independence from it, even if temporarily.

Happy Independence Day! Hope yours was even half what ours was.

Love,
Beth

Sleep… Blessed Sleep

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I find that the less I sleep, the more I realize how underrated it is. By yesterday afternoon, it had become my number one priority. Ironically, Tanner, who was awake with me until 1 am the night before, and had a virus to boot, didn’t seem tired at all. But, last night, for the first time in nearly a month, the whole family slept, peacefully and relatively uninterrupted for a good 10 hours or more. Tanner woke up to go to the bathroom twice, but didn’t eat at all or ask for any painkiller… both miracles and evidence that the steroids are leaving for real.

We see lots of evidence of the steroids’ retreat: a return of our happy, laughing little girl; less stomach aches, more sleeping and less eating. All wonderful things. We are so thankful. It is one thing to have someone tell you you’re little girl will come back to you after the steroids wear off, it is another thing to believe it. I’m glad it turned out to be true.

She laughed hysterically most of yesterday afternoon (maybe she was delirious), which was really good to hear. She made “driver’s licenses” for she and Jake out of business cards this morning and kept asking us to check them. Gladly. Can’t remember the last time she pretended anything.

Even the swelling seems to be going down in her face and stomach, which makes her a little more recognizable as Tanner.

Sadly, she realized last night that she will not be able to go to the Franklin 4th parade today. It’s been a tradition for us to decorate bikes with our neighbors and ride in the parade. She was crushed. We talked for a while about how long it would be until she could be among people again and she figured out that she wouldn’t be going to school in the fall. Again… crushed. She doesn’t want to go in halfway as the “new kid” and is afraid kids will make fun of her and call her names. We talked about it and decided that she would know many of the kids in her class from last year and that we would do all we could to be involved throughout the year so she wouldn’t feel like a “new kid.” She felt a little better and then had the idea that our friends could take pictures of the parade and she could look at them tonight. We saw our friends this morning and Tanner happily yelled to them to take pictures. Amazing. We are going to their house for a cookout tonight and fireworks, if we can take an afternoon nap so we can stay awake.

Special thanks to our friends the Whitlers who created and host this blog for me, and who brought us the most delicious dinner last night. Celia has written a song for Tanner and they sat on the couch and made some changes to it yesterday. Tanner laughed a lot and seemed pleased to have a song written about her. Celia is going to put a melody to the song and come sing it for Tanner. Truly priceless.

Speaking of singing, Tanner’s favorite kid’s singer, Roger Day, is going to do a private concert at our house soon. So excited. We have every CD he ever made and it is so kind of him to do this for her.

So, for all the things we can’t do, there are other really special things to take their place. And, as my Aunt Debbie once told me about something totally different, “It is a season of your life.” It applies here as well. In 6-9 months, we’ll be in maintenance, and although it will be no picnic, we should be able to have a more normal life. And, by then, my almost 6 year old will have taught me how to accept the things that life hands you with grace and a smile.