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

Biking In, But Not Out

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July 26, 2009 We headed out this morning to go “letterboxing” on a Greenway across from Aspen Grove Park. If you’ve never been letterboxing and you have kids, you should try it. You go to www.letterboxing.org and do a search of letterboxes in your area, or an area you are going to visit. When you select a letterbox to find, you’ll get a clue that contains directions to a box that someone has hidden. You take with you stamps and ink pads and a little notebook. When you get there, you follow the directions to the letterbox and find it. It will usually be a small Tupperware box that contains a little notebook and a stamp. You put your stamps in their notebooks and write a notation saying who you are and when you were there. Then, you use the stamp in the box to stamp your book, put the letterbox back where you found it and go on your merry way. To the kids, it’s like a treasure hunt… they love it.

Our stamps are an elmo stamp for Jake and a Zoe ballerina stamp for Tanner, and we sign all our pages as, “Two little monsters in Franklin” (do you sense some foreshadowing here?). We found a new series of 11 letterboxes that someone had just put out on any easy paved trail in Aspen Grove and thought we would go.

We arrived at the park to find that Tanner’s chain had somehow fallen off the bike in the car. After 10 minutes or so and lots of grease stains, John got the chain back on and we all headed out, excited to find the boxes. We found an owl stamp under a bridge, a heron stamp and elk stamp hidden under trees and a deer stamp under some rocks. The kids were having so much fun. Tanner loved to find the boxes and Jake loved doing the stamping.

That was when I noticed that Jake didn’t smell too good anymore. Bicycle riding and a poopy diaper… a great combination. So, we decide to head back and find the rest of the boxes another day.

That’s when Tanner rides off the paved path and into the grass. When she rides back up on to the pavement, she falls face first. She actually was okay; just a minor knee scrape, but she is shaken up and the chain has fallen off the bike again. I hugged her and she wanted me to hold her hand as we began walking and pulling her disabled bike along.

That’s when Jake decided he wanted to hold my hand, too. Only he can’t, because I have a bike in that hand. So, he lays down in the path and cries and refuses to move anymore. We tried walking away and leaving him, which had limited success, but in the end, John ended up carrying both bikes, while I held both kids’ hands.

We walked all the way back, very slowly, picking flowers along the way. Tanner was tiring at that point, her stamina is amazing, but still not normal Tanner energy.

John and I laughed when we got back to the car. I said, “We took a 2-year-old, a six-year-old with leukemia and a twelve-year-old dog on a bike ride… perhaps this was ill-fated to from the start.”

But, it was still fun, despite the fact that it didn’t end the way we planned. And, we’ll go back someday soon to find the rest of those letterboxes. We’re just thrilled that we can even attempt to do something like this considering where we were just a month ago. Living with leukemia is no picnic, but it can be done. And, it often is better than I ever imagined it could be.

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.

Clinic Day

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Tanner "resting" after treatment today

Tanner "resting" after treatment today

July 23, 2009 Another clinic day. Another spinal with chemo. Is it weird to say, that all things considered, it was a really good day. Tanner loves the nurses, especially Carie, her favorite. John and I love Lee, our recovery nurse who checks the roster every day to see if Tanner might be coming in so she can request her. In a strange way, it’s like seeing our cancer friends every Thursday, and today we met a new one.

John had an intern at Franklin American whose brother has T-cell ALL. He sent John a link to his Caring Bridge site and reached out to us to let us know he understood what we are going through. Today, when we were in recovery waiting for Tanner to wake up, a sedated teenaged boy was wheeled in next to her. John kept looking at him and pulled up the Website for his friends’ brother and, sure enough, it was him. Childhood cancer is a small world… thankfully.

We never got to meet Thomas; he was still under when we left, but we did meet his mother and she is amazing. Six children (that alone makes her my hero) and he is her next to youngest. They are fighters, for sure, though. A tough crew that I know will leave cancer wishing it had picked someone else.

Tanner’s counts today were pretty good. Her platelets, which for some reason were triple the normal amount last week, were down to only double normal today. Her hemoglobin was up a little bit, which helps her energy level (although it really hasn’t needed any help lately!), and her neutraphils (the big infection fighters) were down from 2200 to 1400, which is still good for a kid with leukemia. We have learned that even though her counts have been really good so far, they are still all over the place from week to week, just evidence of the power of the chemo. It’s easy sometimes to think she’s totally fine since she’s been feeling so good. I find these numbers we hold our breath over every week to be sobering; they serve as a reminder that despite the way it looks, her body is still under tremendous strain.

We are only one week from finishing Consolidation, our second phase of treatment. No surgeries or extra chemo next week; we just go in for a blood count (now, that’s what I call a break!). She’ll continue to take the 6-MP, which is an oral chemo, every day for the rest of the next week. Then if her counts are still okay, we’ll start Interim Maintenance the following Thursday. We will only have to go to clinic every 10 days for the two months of this phase, but she will get the dreaded Vincristine every visit in addition to IV injected Methotrexate. Thus far, she has only had methotrexate injected into her spinal column, so we don’t really know how this chemo will effect her when it is injected into her bloodstream.

The physical therapist is coming back tomorrow, hopefully, to go over the at-home program she has designed for us. And, next week, John and I have an appointment with a counselor that specializes in play therapy. Hopefully, she can help us and Tanner learn some constructive ways to let go of her anger. She was an angel today, of course, since we called a therapist!

Jake spends every Clinic Day with Aunt Beth. When we leave in the morning, he happily shouts, “Bye Mommy, Daddy, Tanner. Happy Day at the hospital!,” from the breakfast table. He doesn’t care in the least that we are leaving him; he is going to Aunt Beth’s house where there is a pond, geese, cats, a garden, peppers to pick, flowers to plant, and various other fascinating activities that he doesn’t have at home. Thank you, Beth, for making Thursday’s my son’s favorite day (and for folding my laundry!).

Check out Jake's wheels at Aunt Beth's house

Check out Jake's wheels at Aunt Beth's house

Hilariously enough, Tanner had a hard time going to sleep tonight. Before leukemia, Tanner never napped; if she did, she wouldn’t be able to go to bed until hours after her bedtime. Tonight, after she had come out of her room for about the 10th time after going to bed, I said to John, “Do you think being sedated during surgery is like a nap for her?” Unbelievably, we agreed that it must be. You gotta love the unstoppable nature of our girl.

Love,
Beth

I Wish

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July 20, 2009 Did you ever hear that saying, “If you don’t have anything nice to say, don’t say anything at all?” That’s sort of how I feel about today. Tanner had yet another bad day with her behavior. John and I are worried about her… there is clearly something really bothering her and she is acting out as a result. She has certainly had tantrums before, but this feels different… somehow it feels self-destructive and desperate. I’m hoping I’ll hear from the social workers at the hospital tomorrow and get some good advice.

Having said that, we did play outside a lot today and enjoyed this beautiful weather. Went to the playground with Tanner’s best friend, Corinne and her mom and sister this morning. Brought the kids’ bikes and they had a “bike show.” Big fun.

We also went to an impromptu dinner at a neighbor’s house. She and her three kids dropped by in the afternoon to play and ended up inviting us down to her house for spaghetti and running in the sprinkler. (Thanks, Molly!)

My poor, tired husband went to bed at 8:30. He is exhausted from Tanner’s nighttime escapades and from trying to balance work and home. Last night, Tanner woke us up to ask if we would help her take a shirt off of her build-a-bear. She wanted to sleep with it and apparently the bear’s shirt was tickling her. Seemed important, I guess, to her. John just can’t go to sleep afterward and lies awake for hours.

I just wish I could make this better for Tanner. I wish she would tell us what is going on with her, instead of acting out. I wish… well, I wish she didn’t have leukemia.

Love,
Beth

Patience

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July 19, 2009 Sorry for not posting over the weekend; had a hot date with my husband on Friday night and got home too late to write. Then, on Saturday, I was just too tired after the hot date the night before and had to go to bed early (that’s so sad!). We’re not sleeping so well again here at the Page house. Tanner has been doing so well that we decided we no longer needed to sleep in her room with her; but after six weeks of doing so, the transition is, expectedly, a little rough. I think she’ll do fine, eventually, but it has thrown things off for the time being and she keeps waking us up at night to fulfill various attention-getting requests… I’m cold, I’m thirsty, my tummy hurts, I lost my stuffed animal, I’m afraid… you get the picture.

My Aunt Debbie came in from Huntsville, AL, on Friday and stayed the night with us. John and I got to go have dinner at Red Pony (aka, the hot date)… alone… sigh. It was lovely. The kids loved seeing her and we had a nice visit. So sweet of her to do that for us.

Saturday morning, spur of the moment, we decided to take the kids to the zoo. Tanner’s counts were good this week and the docs are always emphasizing that outdoor stuff is more forgiving as far as germs go, so we decided we could just stay out of the crowds and off the beaten path. Unfortunately, the weather was so unusually pleasant for July (70 degrees!) that everyone else had the same idea. We managed to stay away from everyone for a while, but left after about and hour or so and vowed to come back the next morning to see the other side of the zoo (Jake was desperate to see Tigers). We did go back this morning at 9 am when all the good Christians were in church, which was much better and we had a great time. Even wiped down a carousel cheetah with a antibacterial wipe and rode the carousel. And, of course, saw the Tigers. Jake went to bed chanting, “Lions and Tigers and Bears, Oh My!”

I got away on Saturday to have a pedicure with an old friend I haven’t seen in a while. It was great to catch up. I confessed to her that when I used to get out by myself I had a million ideas about what I could do; now I just go to the grocery store. I can’t think of anything to do; nothing seems very important anymore. So, she promised to make me leave the house every once in while for something fun.

With the exception of some stomach pain and nausea, Tanner continues to feel really good. This month is a gift and we believe we will look back on the Consolidation treatment phase as a good time for us. We know we have harder times coming, so we’re milking this for all it’s worth.

The physical therapist came on Friday to evaluate Tanner. As we have noticed, she definitely has weakness in her legs, particularly her quadriceps when her legs are bent and her hamstrings with legs both bent and straight. Her right side is definitely weaker than her left; no one is certain why this is, but it was definitely the more painful of the two from the leukemia at the very beginning. It was very eye-opening to watch as she asked Tanner to skip and she just couldn’t make the right leg do it, and when she asked her to stand on one leg and then the other. She was able to stand for 26 seconds on her left leg before we just told her to stop. Then, we gave her the best out of three tries on her right leg, which was only 6 seconds… yikes! Scares me to think that the leukemia could have caused some permanent damage in that leg.

The good news is that the therapist felt like she was making great gains, doing well in comparison with many kids at this stage of the game, and that the activities we are already doing (biking, swimming, dancing) are all therapeutic in and of themselves. She suggested that we do home therapy with her for the time being and save our PT visits for a time when she may need them more, like when she is taking more vincristine. She is coming back next Friday to teach us a home program, which is based on play activities, and will check in on us by phone for the next few weeks.

We continue to have a really hard time with Tanner’s behavior. We are no strangers to challenging behavior from her… anyone who knows Tanner knows that her huge personality doesn’t come without it’s drawbacks. But, she is definitely pushing us to our limits. There is no punishment that she won’t take, at this point, to be able to have a fight with us; and she is picking fights at every turn. I can’t help but believe that fighting with us allows her to release some of the anger she is feeling but doesn’t know what to do with. We’ve decided to stop basing our discipline on punishment alone and just stop responding to her invitations to fight, a strategy which is very difficult for me. I’m also going to contact the social workers at Vanderbilt and ask how we can help her express some of this anger in a healthier way.

It’s so hard to know the right thing to do in this situation. It’s always hard, as a parent, to feel like you’re making the right decision, but this is definitely uncharted water and I feel more unsure than ever before that I’m doing right by her. I want her to know that the rules still apply, even when you’re sick, but also realize that I can’t even begin to understand what she is going through. Even though it feels like the whole family has leukemia, we don’t; she bears that burden alone.

It’s been a fun weekend, but also a trying one. It’s so sad to mar this time where she feels so good with all this discipline, but it’s just necessary. Ugh, ugh, ugh.

Pray that we have the patience to deal with her with firm love and understanding and that she finds a way to express herself to us, or someone, so she feels better.

Love,
Beth

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

Twinkle Toes

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Tanner dressed for a recital 2 weeks before diagnosis

Tanner dressed for a recital 2 weeks before diagnosis

July 14, 2009 Tanner had a private dance lesson today… for an hour! Her very sweet dance teachers took time after their workout to teach Tanner and her friend Corinne. They had a ball and I was amazed at how well Tanner held up. Only by looking at some really subtle things could you tell anything is wrong with her. Like the fact that she can’t skip (although she tried) or leap, or spin quickly. But, she kept up with all the moves they taught her and the ballet stretches and positions, and never knew she was getting some of the best physical and mental therapy. Thank you so much to Morgan, Rachel and Elisha at Histown Dance Studio (histown.com) for caring so much about my daughter.

Tanner’s been taking dance for about a year-and-a-half, both hip hop and ballet. The lesson today stirred up a memory that haunts me. Two weeks to the day before Tanner was diagnosed with leukemia, I took her to our pediatrician because her back was hurting. She had been complaining about it on and off for several days and had even woken up in the night once, crying, saying her back and leg hurt. The pediatrician, and I, agreed that she must have strained a muscle. She had been unusually active (which is saying something) for several days before that with two dance recital rehearsals, the recital itself, field day and the kindergarten rodeo. Anyone could easily strain a muscle with all that going on. We gave her ibuprofen for a few days and it went away.

It came back on June 28th at 9 pm, just an hour-and-a-half after Tanner went to bed. This time, it made her scream and curl up in a ball and writhe in pain if you touched her. It was leukemia and it had been stalking my child for at least two weeks.

So, I’m haunted by the pictures I have of her at that recital. She looks like any other 5-year-old, happy to be in a cute costume and excited to show off her moves at the big show. But, I keep looking at those photos. I zoom in on them sometimes, trying to see if there were dark circles under her eyes. Is that a bruise I see on her leg? Tanner has always been very thin, but her legs look super thin and long in those knee socks. Too thin? Her face looks really pale, especially for the middle of May when we have playing outside so much in the beautiful spring weather. Almost ashen.

Then I compare them to the photos from her December recital before the bactrim reaction sent us to the hospital for 5 days in March and before the leukemia. She looks so healthy and beautiful. Why didn’t I notice how pale she was later?

Tanner at a Dec. 08 recital

Tanner at a Dec. 08 recital

Then, I remember my Mom telling me on a visit that she thought Tanner looked tired because she had dark circles under her eyes. When was that? I can't remember. Tanner has chronic ear infection problems, so I thought they were the "allergy shiners" kids with sinus and allergy problems are prone to.

The point is, I am haunted by the fact that the leukemia was already there in those photos of the spring recital. It was lurking there conducting its evil business and no one knew. My beautiful, happy, dancing, twirling daughter was being stalked by a killer and we didn't know.

Not that it really would have changed anything; I just don't like it. It mars some happy memories for me. Those pictures will never just look like harmless pictures of a little girl going to a dance recital; to me, they look menacing.

It's just another of the many things this disease has take from us– our freedom to go places and do things, the house of our dreams that both the kids and John and I were so excited to move into, our peace of mind in believing that nothing really bad will happen to our kids. I am sure that one day it will give us something back (besides our daughter). I'm sure we'll get something out of this — strength, courage, new friends, a closer-knit family — but there are days that are tough to remember that, or believe it even.

This was one of them.

Love,
Beth