Category Archives: difficult things

So Sad

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August 18, 2009 I wasn’t planning on posting today; it was an uneventful day for the most part and I didn’t really have much to say. But, then just moments ago, as I was idly surfing the net, I wondered whether the Tanner Time blog would show up if you googled Tanner’s name. It does, which is cool, but beneath it was another blog listed for another Tanner Page.

I opened the blog to find that a beautiful little 7-year-old boy named Tanner Page had passed away just this past January from brain cancer. His family has the most beautiful site in his honor. They write messages to him on the blog, even now, to tell him how much they miss him, to ask him to watch over his mother and father, to let him know they see him in a sunset, a wave on the beach or a butterfly at the window. It is heartbreaking and I cannot stop crying.

Tanner is not the most common name and it seems so strange that they are basically they same age and both with cancer. This is a bizarre world.

I sent his parents a message; I didn’t really know what to say except that maybe a little part of their Tanner could live on in ours. Perhaps it will bring some small comfort in the midst of what must be an unimaginable sadness.

Yes, this is a bizarre world.

Beth

School Days

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August 18, 2009 Well, it finally happened. The “good counts” bubble we were living in popped. Tanner’s neutraphils (big infection fighting white cells) were down to 610 from 1500 last clinic visit. Somewhere around 4,000 is normal, and 500 or under is considered neutrapenic, which means you almost have no ability to fight infection. So, 610 is pretty low. They were unable to give her methotrexate (one of the two chemos she is currently taking) today since she was under 750. They were supposed to be increasing her dose of methotrexate every 10 days during this phase until she could no longer tolerate it. So, now they realize that Tanner is very sensitive to this chemo and they will have to adjust their dosages for her. She got Vincristine today, since it doesn’t really affect counts much, but will wait until next visit to see if her counts return to an acceptable level to start the Methotrexate again. They will give her a lower dose this time and go from there.

This sounds really bad, but actually isn’t. I mean, it stinks for the next 10 days since we will be more severely limited about going out (no more trips to Target or the grocery). But, it means that since her body and her leukemia are extra sensitive to the methotrexate, she will receive less of this drug for the remainder of her treatment. The doctors believe it will be no less effective, she just requires less than most people to do the job. This is a chemo that will be part of her treatment plan for the duration, so less chemicals in her little body is a good thing.

Of course, the low counts just had to coincide with Jake getting a cough and runny nose… of course. Have you ever tried to keep a six-year-old and a two-year-old away from each other when they have no one else to play with? After today, I can say, neither have I. I finally settled for them sitting at opposite ends of the sofa when they were playing Wii or watching TV. The rest I’m just trying to live with.

Her red counts are going strong, though, so she still has lots of energy and feels pretty good. The Vincristine, however, is definitely making itself known. She is getting slower and slower up the steps, the rash on her hands and feet is back and her hair is starting to fall out again.

We’ve had a busy couple of days. Her homebound teacher came for the first time on Saturday for an hour-and-a-half. The day before, Tanner, Jake and I went to Target to buy school supplies. We took the supply list, just like we were going to attend school and bought everything on that list — eight large glue sticks, 3 boxes of 24 crayons, a 6-inch ruler, etc. I think that made Tanner feel like she was ready for school. Then, we went home and made a school room in my office. We put in a table and chairs for both Tanner and the teacher, posted a big map on the wall, and set up all her supplies. She had a lot of fun putting it together and played in it for a long time afterward. We’re going to keep decorating it until it looks like a real school room.

Tanner and Mrs. O'Hara at work

Tanner and Mrs. O'Hara at work

Tonight I went to a parents meeting with Tanner’s teacher at school. We went over all the curriculum they would be covering and I almost cried (I didn‘t cry there; that would have been embarrassing. I cried at home where it is acceptable!). She would love this class and the many fun things they are doing. Tanner loves to belong to something and to be a part of the team (well, she actually likes to lead the team, but someone has to be in charge). Then, I started thinking, how in the world will she be able to keep up with just 3 hours a week of tutoring plus homework? It’s unbelievable what a first-grader learns these days! I think we were just learning how to sound out words, if that, when I went. Good grief, I had to think hard on some of the questions in their math workbook! But, the school is being so awesome about looking for ways for her to connect. She actually has a desk and a cubby with her name on it, so the kids know she’s coming and is part of the class. I’m going to try to take Tanner to see the classroom this week and she will love that.

Tonight, when John came home, he burst in the door talking about ducks down the street in our neighborhood. Ducks? We don’t have a pond here. The neighborhood backs up to the Harpeth River, but these ducks were walking down the street a good ways from the river. They grabbed bread from the fridge and headed down the street to feed them. Sure enough, these ducks seemed familiar with the bread scene and let them get fairly close before they finally flew away. It is so like my husband to run down the street in his suit, barefooted kids and all, to seize an opportunity and make the most of it.

Who would have ever thought you would see ducks just walking down the street in our waterless neighborhood? Who would have thought our daughter could get a disease that only strikes .004% of U.S. children each year? Strange things happen. Maybe it’s what you do with them that is most important.

Love,
Beth

My Fervent Hope

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August 6, 2011. That is the day that Tanner will take her last dose of chemo. How crazy is that? Crazy that the doctors can pick a date out of the air 2 years from now and say the leukemia will be gone for good then. Crazy that we will be living this new strange life for two more years. Crazy that anybody, much less such a little body, can take that much abuse and survive.

I don’t know if I’ll dance in celebration that day or spend it crying with relief. I’m hoping that the little 8-year-old girl I see that day is happy and thriving and left with as few physical and emotional scars as possible.

I’ve grappled this week, for the first time since the day Tanner was diagnosed, with the possibility that Tanner might not make it through this ordeal. As I mentioned before, I learned about two children recently who died during long-term maintenance after getting infections. These were kids whose parents, I am sure, were certain their kids were strong enough to beat the beast, who were bolstered by the doctors’ assurance that their children had a highly favorable prognosis, who thought their kids had survived the worst of it.

The truth is, it was not the leukemia that killed these kids, it was the chemo. The chemo keeps their white counts so low that they are susceptible to these infections, and it ravages their little bodies so that their vital organs are not strong enough to weather the storm. It is my understanding that it ends quickly for these kids; the infection does it’s work swiftly.

So, as much as I have tried to stop thinking about this, I have had to admit to myself this week, that this could happen to Tanner. That, as strong as she is, as well as she is doing, as low as her risk category is, there is still the possibility that none of this will matter and that the unthinkable could happen overnight.

I think Tanner has been thinking about it, too. She has, for the second week in a row, made cemeteries in the sand box at the play therapists’ office. When asked by the therapist to “Make your world” in the sandbox, she buried little figures and topped them with tombstones. Earlier this week, she asked me to tell her what I liked so she would know where to bury me, and asked if I wanted to know what she liked so I would know where to bury her. And, we wonder why she’s acting out…

We have to find a treatment for cancer that is not as dangerous as the disease itself. Or, better yet, a cure that eliminates the need for treatment altogether. It is my most fervent hope that, as my friend Robin put it, we will look back in 20 years and think how barbaric it was that we treated cancer patients with these debilitating drugs. Heck, why not shoot for 10 years from now?

Whether it is a child or an adult with cancer, no one should have to endure this. No family should have to go through this. No six-year-old should have to worry about where they’re going to be buried if they die.

There has to be a better way.

Love,
Beth

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

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.

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 Say “Yes” to Build-a-Bear

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dec 08 015July 12, 2009 I stressed all last week about whether to change Tanner’s birthday party date. I had originally scheduled it for the 6th, but thinking we were going to have a break in chemo, moved it to the 13th so she would feel her best. Then, we figured out there really was no break, except a week without vincristine, and couldn’t decide what to do. When she felt so good last week, I kept thinking I should change it, assuming the new chemo treatments would knock her back and she would feel bad at her own birthday party.

Well, her party is tomorrow and she couldn’t feel better!!! The two doses of chemo she received last Thursday and the chemo pill she has been taking daily has yet to affect her, and if anything, I think her energy level has steadily increased all weekend. She has gone from napping two and three hours every day to not napping at all.

Her legs also grow stronger every day. We went to the playground today and she climbed a rock wall! Really. She still can’t run and has difficulty climbing stairs or getting herself up off the floor, but I do think these are just loss of muscle issues leftover from the steroids and from a month spent lying down. She definitely needs some physical therapy, but it’s amazing how much her willingness to play has made a difference.

It’s possible this oral daily chemo she is on may prove me wrong and have a cumulative effect on her which eventually drags her down, but with no more vincristine this month, I hope that she will continue to feel good.

Having said that, her counts were pretty borderline last week, so we’re feeling extra cautious about germs. It’s frustrating for her to feel so good, but still be so limited as to where we can go and what we can do.

Today, I felt like we had to say “no” to her over so many things. “No, you can’t come into the restaurant with Mommy; I’ll pick up the food and we’ll eat at home.” “No, we can’t play in the creek, there are germs in there that could make you sick.” “No, you can’t eat those grapes; you can only eat fruit we can peel.” “Don’t pick up that worm… it’s not good for you.” No. No. No. No. NO!

Ick! It’s not like you don’t say no enough as a parent. To have to say no to so many things is hard. Every time I do, I feel as if I am reminding her she is different… sick.

This morning as she struggled to get up the step from the patio to the back door, she turned and said, “Mom, why are some things that are so easy for some people so hard for me?” I explained about the chemo, but even as I said it seemed like a raw deal to me. She said, “We shouldn’t take something that is so bad for me.” It seems the irony of chemo isn’t lost on even a six-year-old.

But, tomorrow she should be able to do everything everyone else can. In fact, I would say she qualifies as a world champ at Build-a-bearing, cancer or not. There won’t be any stairs, any need to run or do any of the other things that set her apart from other kids. Just some of her best friends, some cute bears, a fairy cake and presents. She can handle that, no problem.

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