Category Archives: treatment

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

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

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

Blessed Normalcy

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Tanners B-Day Party 013July 13, 2009 I woke up this morning thinking how cruel it was that after feeling so good for the past week, Tanner was feeling very nauseated… the morning of her birthday party. But, 5 medicines and a bowl of cereal later, she was back in the game and the rest of the day was awesome!

The Build-a-bear party was the most normal experience we have had since Tanner was diagnosed. She was just a normal little girl having her 6th birthday party with 5 little giggling friends. They screamed, giggled, stuffed bears, sang the birthday song… all the normal stuff. She had a ball and forgot for a little while that she had leukemia.

Part of what made it so normal was the she didn’t need any help from us during the party. She has figured out a somewhat unorthodox, but effective method for getting herself up off the floor and was able to march around with everyone else without drawing any unusual attention to herself. Great fun!

Then, the piece de resistance… we took the training wheels back off the bike and rode the whole neighborhood. We stayed outside from 4:30 to 7 pm riding bikes, playing in the gravel, meeting neighbors and rolling in the grass. This is what I love to do with the kids. I love to be outside, to find unexpected friends and just let the fun happen. It snapped me out of a funk I had been in for days.

How amazing that Tanner is doing these things. Is there really chemo in that pill she is taking every day? How can she have this much energy? I think I had given up hope that she would be able to do these types of things for a long, long time.

We’re basking in it while we can.

Love,
Beth

It’s Just What People Do

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July 11, 2009 Several weeks ago, I received an email from a friend in West Tennessee letting me know that an 8-year-old girl in his neck of the woods was just diagnosed with ALL. He passed on her Caring Bridge site address and I’ve checked in on her periodically since. Her name is Kinsee and she has T-cell ALL, which I knew to be more rare and more difficult to treat than most B-cell ALL’s (Tanner has pre-B cell ALL). This means a more aggressive treatment plan and a lower success rate. I was so sad for this family, but was captivated by the spunk of this little girl. She often writes her own journal entries, which hilariously, are all about food, since she is still on the aggressive steroids Tanner just finished.

Tanner and I pray every night for Kinsee, our friend Lily who is 8 and has pre-b ALL just like Tanner, and Bill Johnson, an adult fan of “Friends of Tanner,” who is going through cancer treatment. These are our known friends with cancer and we feel an odd kinship with them, though we have never met Bill or Kinsee.

Tonight, I went to Kinsee’s journal to check in on her progress. It had been a while and so I read back through a couple of weeks’ entries. My heart sunk. It has been determined that Kinsee has a very rare type of T-cell leukemia, known as “early” T-cell leukemia. I racked my brain, trying to remember if, in all my research about ALL, I had ever come across this type of T-cell ALL. I couldn’t. I googled it and found an press release dated Feb. 2009 saying that St. Jude, in conjunction with some Italian health authorities, have just discovered that this type of leukemia exists. It has previously been lumped in with all T-cell. Sadly, it is associated with a poor prognosis.

John and I sat on the sofa as I read him the press release, so sad for this family and so thankful that we have had such good news for Tanner’s outcomes at every turn. I said to John, “How do you hear that kind of news about your child?” He thought for a moment and said, “I think people probably ask themselves that same question about us.”

I remember hearing for the first time from the doctor that Tanner might have leukemia. It was, literally, inconceivable. She had back pain, not leukemia. We thought maybe kidney stones, appendicitis… but leukemia? It came out of left field and was just the most surreal, unbelievable thing. When the doctor first mentioned it, I was by myself with Tanner in the ER. I waited until John got to the hospital to tell him, because I was afraid he would wreck the car on the way to the hospital if I told him over the phone. When our pediatrician arrived at the hospital that evening and told us to “prepare yourselves for the fact that it is probably leukemia,” I had such a visceral, physical reaction to those words. I sobbed, I shook, my teeth chattered…

But, over the next few days, while we waited for them to rule out any other options and for the results of the bone marrow biopsy, which is the definitive test for leukemia, we slowly began to accept the idea. I couldn’t tell you how… you just do… because you have no choice, really.

So, I imagine this family hearing that their sweet little girl’s prognosis was much worse than they originally thought, reacted much the same… they sobbed, they shook, they shook their fist at God, and then they accepted it… because they have no choice.

When you child is sick, they need you plain and simple. It is the most natural thing in the world to respond to that need; it’s not heroic or extraordinary, it’s just what people do.

There are no Mother Teresa’s here at the Page house. We are just putting one foot in front of the other because we have to, and because, after a period of time, you accept what is in front of you, and this becomes your new normal. We get tired, crabby, fed up, frustrated and exasperated just like all parents do. And, we laugh, play, get silly, and goof off, just like all families do. Cancer doesn’t change that.

With this blog, I try to resolve my feelings at the end of every day. I try to find the bright spot that maybe wasn’t so evident in the thick of the day. I choose to focus on a moment, however small, that was beautiful, or poignant or sad or gutwrenching and pull out of it what was good, or what can be good tomorrow. It’s just how I, personally, handle this situation. You might handle it differently, but you would handle it, nonethless… believe me. It’s just what people do.

Love,
Beth

Birthday fun

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July 9, 2009 Thanks so much for all the birthday wishes for Tanner. I held up a handful of birthday cards that came in the mail yesterday and commented that I had never seen so many birthday cards for one person. Tanner said, “A lot of people care about me.” Amen, sister.

We went yesterday morning to the Dollar Store at an off time when no one was there and let Tanner pick out her plates, cups, etc. for her Build-a-bear party on Monday. She’s inviting a few girlfriends and they’re opening the store early so she can go without exposure to any other kids. (Thank you Build-a-Bear) She’s super excited.

Then, last night we had a family party at the house with pizza and a Sundae bar. Tanner hasn’t been able to see her cousin, Mack, since she was diagnosed because the family has been passing a bug around. So, she was really excited and they had a really good time.

Today was our clinic day. We began the Consolidation phase of treatment today, which will last 4 weeks. Had a dose of vincristine (chemo) and an injection of another type of chemo into her spine. In addition, we started on 6-MP, which is an oral chemo she will take daily for the next month. It all went smoothly, although we narrowly missed not being able to start consolidation today because her neutraphil count was very close. It needs to be above 1000 to start and Tanner’s was 1030. Squeak!

So far, so good with this chemo. She came home and watched a movie while she ate, played on the computer with Jake for a while and then we all went outside to ride bikes for a while. She did just fine on the bike. Needed a little push up the hills and to get started, but otherwise did fine. I so, so hope that this dose of vincristine doesn’t set her leg strength back. She’s gaining so much every day and it’s so normalizing.

Special thanks to my Bunco girls tonight for getting me out of the house for a good time. Good girlfriends are good therapy. Also, thanks to my mother-in-law who came again this week so I can get out of the house, spend some time with Jake and have some help. I’m lucky to be part of such a loving family.

Here’s to more days of birthday fun!

Beth

A Relaxing Day

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July 6, 2009 We took a break from all the festivities to just kick back today and stay in our jammies until noon. We watched Shrek 2, made swords out of toobers and zots and had sword fights, downloaded tic-tac-toe to Tanner’s itouch, packed bags and pretended we were going on a trip, and played the Princess Memory game.

We never left the house, although I did try to get Tanner to go on a bike ride. We put the training wheels back on her bike, since I don’t think she could catch herself if she fell. So sad since she had just been riding without them for about 2 weeks before she was diagnosed. She was so into riding that bike; we went almost every day. Today, when I asked her if she wanted to go ride, she said no and when I prodded her for a reason, said, “I don’t think I’ll be able to push the pedals and I don’t want to know if I can’t.” I just told her we could think about trying again tomorrow. What else are you going to say to that?

I think she probably could pedal on a flat area if she were given a push to start, but I think it will be a lot to swallow given that her 2-year-old brother motors around like nobody’s business. I think, in time, she’ll eventually adjust to the idea and just accept it like she has most things.

Her legs have gotten a little better every day since we stopped the steroids and, I think, since we didn’t have a vincristine dose last week. Vincristine is a type of chemo that tends to cause nerve pain and weakness. It’s been two weeks since she has had a dose. She still can’t get up off the ground or climb the stairs without a lot of help and she falls often, but she is limping less and moving better every day. In fact, today she played Dance Dance Revolution on the Wii and did pretty well. Unfortunately, she gets another dose of vincristine on Thursday, but then doesn’t have another dose for the rest of this 4-week phase of treatment. Hopefully, she’ll be able to gain considerable strength during that time.

She told me today that her friend, Corinne, asked how long she would have to take chemo and Tanner told her 2 years. She said that Corinne was suprised, “She didn’t know I had to take it that long, Mom. I’ll be eight years old when we stop chemo, won’t I?” How I would love for that not to be true. She gets it, though. She’ll be six in two days and she gets it. I underestimate her.

Just a typical day at the Page house…

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.