Category Archives: cancer

The Vincristine March

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September 1, 2009 Have I mentioned how much I would love to hate Vincristine?!!! It is one of the two mainstay chemos that Tanner will take for the entire 2 ½ years of treatment and it is rife with side effects. I have watched it slowly but surely attack Tanner’s leg coordination and strength over the past several weeks and it pains me to watch her struggle to do something that would have been so simple for her just 4 months ago.

Today, after taking it easy most of the day because Tanner seemed a little tired after another bad night of sleep, we got a call from the bike shop saying Tanner’s bike was ready. I had taken it to have the chain replaced after all the aforementioned chain falling off incidents and Tanner was missing it sorely. We loaded scooters, bike helmets and sunscreen into the car and ran down the road to pick up the bike, then drove to our favorite bike-riding cul-de-sac to play with friends.

Tanner and her friend, Smith, rode into the grass field behind the school and then couldn’t make it back up the hill on the bikes, so they got off to push them. Smith topped the hill and I still didn’t see Tanner. I stepped around the trees to get a better look and saw her, way down in the field, facedown with the bike on top of her, motionless. After yelling to Molly to keep an eye on Jake, I took off running down the hill. I saw her move an arm, and then she began trying to get up. It looked slow and painful, but with great effort, she got herself off the ground, but kept dropping the bike back on herself.

I expected her to be crying, but she wasn’t. I pulled the bike off of her and asked what had happened. “I just fell and I was too tired to get up for a minute… it seemed really hard,” she said. “It’s getting harder and harder to walk again, Mom.”

What comforting words can I offer? “Don’t worry it’s just the Vincristine that you will take for the next two-and-a-half years?” “That Vincristine stinks, but it’s saving your life?” “Just a couple more years and things will go back to normal?“ All pretty lame choices, I would say.

She’s six and she loves to run and jump rope and ride bikes and play. But, every week, she looks a little slower and more awkward when she runs. I noticed at her dance lesson the other day that she couldn’t skip… again. We lost that once and got it back when we got a three-week break from the Vincristine.

But, here’s the amazing part… she never stops trying. The other day, we were coming home from the cul-de-sac and I was pulling a wagon loaded down with scooters, bikes, water bottles and Tanner (we like to have a full complement of riding choices). I decided to take a short-cut and head through the grass median to our house. Tanner hopped out and asked if she could pull the wagon. “Sure,” I said, doubtfully. The median is wide and it slopes down in the middle with a pretty steep little hill to get to the street in front of our house. I knew there was no way she would make it up that hill, but she wanted to try.

When she got to the steep part, she dug her feet in and started to pull. At first, she made headway, but then the weight of the wagon pulled her backward and she lost her footing. “Let me push, sweetie,” I said. “No!” she said through gritted teeth. So she pulled… and pulled… and pulled… and fell down… and got up… and pulled some more… and STILL wouldn’t accept any help. Finally, after what seemed like a very long time, she pulled that wagon over the curb and into the street… triumphant and smug.

She’s six and she loves to run and jump rope and ride bikes and play. And, as long as she’s able, we will.

Love,
Beth

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

Two Ways You Can Help

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August 16, 2009 We have been, as I have mentioned before, but cannot mention enough, profoundly blessed by the kindness of friends, neighbors, church members, family and people we have never even met since we began this journey 2 ½ months ago. It is humbling to know just how many are praying for Tanner every day, much less bringing us meals, sending sweet gifts and offering words of encouragement and hope.

Yet, amazingly, people still ask us on a regular basis what else they can do to help. I’ll be honest, if I took any more meals from someone at this point, I’d just be taking them because I’m a lousy cook, not because I have any less time than you do to make dinner. Things are fairly normal in that department. And, I have my Jake-care situation well taken care of, thanks to Aunt Beth, my parents and my mother-in-law.

But, now two dear friends have found another way you can help… by contributing to some great causes in Tanner’s honor.

Leslie Woods, friend and babysitter to Tanner and Jake, has organized “Tanner’s Trotters” a team for Franklin 4 the Cure 5k run/walk and family festival held in the Westhaven community on Highway 96 in Franklin on Saturday, September 19. It’s a great event that benefits the American Cancer Society, the National Childhood Cancer Research Foundation, and Vanderbilt Children’s Hospital. There are children’s runs right after the adult version as well as a kids fun area and a concert later that night by Deana Carter. The event is being held this year in honor of Tanner’s friend Lily, who has ALL, and a little boy named Cooper who has brain cancer. Both kids live in the neighborhood. You can register to run or walk on the Tanner’s Trotters team by September 17 at www.run4thecure.org.

Robin Embry a great friend and former co-worker of mine at Lovell Communications, has started a Team Tanner for the Leukemia and Lymphoma Society’s Light the Night Event held on October 1 at LP Field. This is a really special event where teams of people walk in support of those who have cancer. Cancer survivors carry illuminated white balloons and are surrounded by their supporters carrying illuminated red balloons. Those who have lost a loved one to cancer carry a gold balloon in their memory. Although Tanner will not be able to walk with us, due to her immune system issues, we will have a team for her this year and hope she can see for herself next year how many people love her. You can either join the team to walk with us and raise money from friends, family or co-workers, or you can simply donate to the cause on the Website. This is not a fitness walk, but more of a short, ceremonial type of walk. There are activities for kids at the event, so it’s even appropriate for children. To join the team or donate, go to http://pages.lightthenight.org/tn/MidTN09/TeamTanner.

I’ve never liked asking people for money; it’s just not my gig. But, if you could help us honor Tanner in one of these two ways and raise money to help keep another family from going through this misery, John and I would be very appreciative. We’d love to be able to tell Tanner that her team made the most money. Especially since she can’t attend either event.

And, thank you, thank you, thank you to Leslie and Robin for doing this for us. We can’t tell you what this means.

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

Take Nothing for Granted

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August 11, 2009 Such a nice, relaxing day hanging out with my girl. I think she may have been a little tired from all that running we did yesterday, so we just kind of took it easy today. Went to the grocery store, ate lunch, showed up at the play therapists on the wrong day (oops!) and went to the movies.

The afternoon movie on a school day may become a staple for Tanner and I this fall. It was so nice — only two other people in the whole theatre. We went to see Up! in 3-D. It was a great movie.

I’m glad we took it easy today. Tanner definitely had some moments of not feeling well, although overall, she is taking this round well so far. I noticed today she seemed a little slow going up the stairs and sometimes didn’t alternate her legs on the steps, so I’m afraid the dreaded Vincristine may be making itself known. Hopefully, though, she was just tired. I’m also afraid that she may be developing the mouth sores that plague some people on chemo. She’s been complaining of burning in her mouth when she eats and drinks. It’s a side-effect we saw from the Vincristine during Induction, but it seems worse this time. In fact, she ate no dinner tonight at all because she said it hurt her mouth and she really balks at medicine time now, since that hurts as well. Ugggghhhh. Have I mentioned how unfair this seems?

One more girls day tomorrow and I may have to ask my parents to give Jake back on Thursday. Tanner and I miss him. It’s so quiet and Tanner keeps wanting someone to play with. He’s having a ball, though. He got to go to the golf course with my parents today. Mom said he hit about 50 balls on the driving range and then went back later and hit about 20 more. You have no idea how excited this makes my parents after enduring 3 granddaughters with no interest whatsoever in golf!

I’m enjoying this time with Tanner, though. I think when Jake goes back to school later this month, we’ll have Mommy/Daughter day once a week. Some recent blog entries I have read about kids with ALL who have died during long-term maintenance after developing an infection have really gotten to me. I think I always believed that getting to Long Term Maintenance is our goal and then we coast through the rest. First, the chemo road map we received for Tanner made me realize LTM is no picnic; there is still a lot of chemo during those remaining 1 ¾ years of treatment. Then, hearing about these kids who have died because the chemo has weakened their bodies’ ability to fight infection during Long Term Maintenance have really made me realize that there is no “coasting” during this process. This is really 2 ½ years of treatment; all of it exhausting and painful, all of it as dangerous as it is life-saving.

So, these days, I’m trying to hold Tanner a little tighter, kiss her a little more often, stop cleaning and start playing.

Hug your kids. Tell them that you love them. Take nothing for granted.

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

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