September 4, 2009 Thank you so much for all the good thoughts and prayers. They seemed to have worked. She woke this morning fever free and feeling much better. I can unpack my bags!
Love,
Beth
Yay!
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Category Archives: emotions
The Vincristine March
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
Eerily Normal
August 31, 2009 The other night, I said to John, “It’s almost like you could forget there’s anything wrong with her.”
Things have been so normal. She feels really good, has great energy, and has really leveled out emotionally. We’re so grateful. It’s more than we ever hoped for at this point.
She had a dance lesson Friday, which she loved. Played with a friend all afternoon. We went to the zoo Sunday morning before everyone else got there. It was cool and empty and wonderful. She played soccer and ran around a field with friends yesterday afternoon. She’s a little slow and a little awkward when she runs, but she runs, which didn’t seem possible just two months ago when she could barely walk.
John’s reply to my pointing out how pleasantly surprised I am by Tanner’s well-being was that it seemed, “Eerily normal.”
That may seem an odd comment for a situation we are so thankful for, but it struck just right for me.
It seems normal if you could forget about the medicine 3-5 times a day, or her pale skin or her thinning hair. The frequent stomach aches and nausea. The fact that she goes to the bathroom 25 or so times a day or that she wakes up 3-4 times a night.
I think it seems an eerie normal because we don’t trust it. We feel certain it won’t last and behind it lurks the constant worry that any small fever or illness could send her to the hospital immediately.
Today is a good example. After feeling so great yesterday, she woke this morning with a sore throat and joint pain in her legs and feet. I’ve had to help her to the bathroom all morning and I can‘t tell whether the sore throat is from emerging mouth sores or is an infection. See. Eerily normal.
But, overall, we are grateful beyond belief that she is as able as she is. It is so much more than we ever hoped for when we began this journey three months ago.
Love,
Beth
Jake’s Big Day
August 26, 2009 Jake has his first day of school tomorrow! He’s so excited! I had to drag him out of Miss Julie’s room kicking and screaming the other day at orientation, so I think that’s a good sign he likes it. He went to “school” at the same church last year as well, but this year has a new teacher, and he will be doing much more big boy things.
I asked him at dinner what he liked best about Miss Julie’s classroom and he said, “Monster Twucks.” Nuff said.
At first when Tanner found out Jake would be going to school this fall, she was upset. “If I can’t go to school, then Jake can’t either,” she said. But, when I pointed out the fun things we might be able to do without little brother around, she found a way to be happy for him.
I’m proud of her, though, for loving him enough to be excited for him when she is so sad she can’t go to school herself. She is going to help me take his “first day of school” picture tomorrow morning before we drop him off and make our way to the clinic.
She’s also made a lot of progress expressing anger appropriately. She still has her moments, but has managed to be more respectful and calm than she had been over the last month or more. I don’t often notice her trying to pick and fight anymore, and if she does, we just put her in her room until she calms down and that seems to lessen the duration of the problem at least. So, I’m proud of her for this, too.
We’re praying for better counts tomorrow so we can start back on the methotrexate and maybe go over to the school to visit Tanner’s classroom and teacher. They’ve already had some Swine Flu cases there, though, so I don’t know if we’ll be able to go either way. It would mean so much to her, I think, to see the room and her desk there waiting for her. I think she’s having a hard time connecting what is going on there with what she is doing with her homebound teacher. A visit might help, but we certainly don’t want to risk any exposure to the flu.
Tanner’s Light the Night Team has raised $2,125 so far to help in the fight against blood cancers! If you would like to walk with us Oct. 1 in Tanner’s honor, go to http://pages.lightthenight.org/tn/MidTN09/TeamTanner and sign up for Tanner’s Team. All proceeds benefit the Leukemia and Lymphoma Society.
Will post tomorrow once I know any medical updates.
Love,
Beth
The Energizer Bunny
August 21, 2009 Just a quick post to say, again, that Tanner’s energy never ceases to amaze me. We went letterboxing this morning (thanks to all those sweet people who responded to last night’s post with plans for today… I have the best friends imaginable) with friends and rode bikes for a mile or more, then played on the playground. Tanner wanted to ride another trails that loops around the playground, but I was pooped from running after bikes and we went home. Had lunch, nap for Jake, quiet time for Tanner. Then, Tanner and I danced for a while. Then, she danced some more by herself. THEN, we went swimming at the Whitlers’… for two hours (sorry guys, we had no idea we were there that long). — (cruise director response: y’all can stay all day and all night anytime!)
She got a little sleepy in the car on the way home, but rebounded as we were eating and was chatty Cathy at bedtime.
HOW IN THE WORLD?!!! I was tired and I do not have leukemia.
One of my friends commented on Facebook that Tanner used to have the energy of 5 kids, so on chemo, she probably has the energy of 2. I think she’s right.
One funny side note… Yesterday I was broaching the dreaded task of trying to sort out all the medical bills and match them up with EOB’s. (May I just say, I will never again complain about our insurance premiums. Thank God and Franklin American Mortgage Company for good insurance, a good job and a supportive work environment.) Anyway, I came across a bill from Vanderbilt for the night that Tanner had to spend in the hospital because she had a fever. The charges were $8,700 (for ONE night), but our portion to pay was…. $1.00. That’s right, one dollar. Vanderbilt sent us a bill for one dollar! Too funny. I couldn’t bear to write a check for $1 and waste a stamp on it, so I paired it with another bill and wrote one check for both.
Again, thank God we have good insurance. I read somewhere that average treatment cost for a child with leukemia is over half of a million dollars. After looking at the charges thus far, I can easily believe it will get to that point. I don’t know how a family who is not as fortunate as we are can do this. The financial strain, on top of what you are already going through, must be unbearable.
I said I was going to make a quick update, and I’m already off on a tangent.
Never mind.
Love,
Beth
Stir Crazy
August 20, 2009 It’s just been three days since we’ve been on these new precautions due to Tanner’s low counts, and already, we’re stir crazy. We like to go, go, go here at the Page house and it’s hard to find someplace to go right now. So, this morning, after our plans to go swimming had been foiled by the impending storms, we were verklempt. What do you do when you can’t really go anywhere?
We decided, after playing all morning at the house, to go out for a bike ride before lunch. Our neighborhood is right next door to Tanner’s Elementary school and you can see the playground from the end of street. Not thinking, I led my little troop on scooters and bikes down to the cul-de-sac which borders the school. Tanner and Jake were ahead of me, as I was on foot pulling a wagon. When I rounded the corner, Tanner was standing with her back to me, off her bike, facing the playground where I could hear schoolchildren shrieking and laughing. I watched her tiny shoulders droop and saw her bike helmet slide to the ground. She sunk to her knees and curled up, crying, but still staring at the playground, where she should have been playing.
I approached her slowly, kissed her head and pulled her into my lap. “I’m so sorry, T,” was all I could think to say. She cried for a little while, then got up, threw her helmet in anger and began running toward the playground. “I can go there if I want. I don’t care if I have leukemia!” she yelled. I just let her go, knowing she wouldn’t get far. She stopped and lay down in the grass, facedown.
Just then, a mother of one of Tanner’s classmates who had seen us from the parking lot approached… a welcome distraction. She chatted with Tanner, telling her how much her classmates missed her and were waiting for her return. Tanner warmed up gradually and was ready to show off her new “two-wheeler” bike riding skills when Jake fell and skinned his knee. Lots more crying. Then, Tanner, waving at our guest, yelled, “Watch me ride!” Right before the chain fell off of her bike. Seriously.
Are you there God, it’s me, Beth Page. I think you’ve forgotten about us down here. A girl could use a break now and then, you know?
Needless to say, we went home. Tanner crammed in the wagon, with her disabled bike resting precariously across the edge. Jake riding his scooter with his bloody knee, crying, “I’m bweeding.”
In the end, though, it turned out to be an okay day, despite a rocky start. We ate lunch, Jake took a nap, Tanner played a new computer game and did some homework. Later, we went back down to the cul-de-sac (yes, we are gluttons for punishment) after having repaired the bike and applying a large band-aid, and ended up flying a kite and playing on the school playground with neighbor kids.
Then, the ducks came back… for the fifth day. We didn’t have any bread this time (we’ve given away all we had to them on previous nights), but the neighbor had ritz crackers and we fed them those. Seems those duck have taken up residence.
The Vincristine continued it’s assault on Tanner’s legs today. She fell in the morning, saying her foot suddenly hurt and she could not walk on it. We rested for 5 minutes and it was okay, but it’s just evidence of the neuropathy that the Vincristine causes. I noticed her running in the field today; she is looking awkward again. And, at bedtime, her right leg failed her on the way up the stairs and she fell. She asked why she was having so much trouble on the stairs. “It’s the Vincristine,” was all I needed to say. She knows what that means, and although it frustrates her, she accepts it.
Even though what happened at the playground was sad this morning, it marked an improvement in her ability to articulate her emotional pain appropriately. Two weeks ago, that would have ended in a giant temper tantrum and I would have been the punching bag. Today, she threw a helmet in anger and let me hold her while she cried. A vast improvement that I think we can attribute to the play therapy. The therapist feels like she is working out some of her fears through play, and that just being able to express it in some way is a relief to her.
So, it’s two steps forward and one step back… or maybe the opposite today. We’re hoping for sunshine tomorrow so we can try swimming again in the morning.
Note to self: do not go to the cul-de-sac during school hours… just too painful.
Love,
Beth
So Sad
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
My Fervent Hope
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
Lemonade and a Cookie… 50 cents
August 8, 2009 Since when do kids make $18 from a lemonade stand?!!! I don’t ever remember making more than about two bucks and splitting it with my best friend, Carol.
My friend Ashley had a list of things her kids wanted to do this summer and having a lemonade stand was one of the items that hadn’t been checked off. Since school starts Monday, time was a wastin’ and she invited us to help. The kids made a poster, I made the lemonade, Ashley made sugar cookies and we met yesterday in the median between our houses under the shade of some trees. Then, those girls got to work flagging down cars. Even Jake handed out some cookies. Almost every neighbor that drove by stopped and were generous tippers. They had a ton of fun and when we counted up the kitty, they made $18, split three ways!
Tanner, Jake and I had been to Pinkerton Park earlier that day for a bike ride and a picnic in the shade. It was 91 degrees by the time we got there and I noticed the first signs of the Vincristine creeping in. Tanner got hot quickly and, even though she rode quite a while, the heat eventually got the best of her and I had to send her crying to sit with Jake under the pavilion while I put the bikes back in the car and got our lunch.
The chemo has also started effecting her sense of taste. She handed me a pack of gum she just bought today and said, “It tastes yucky!” Tanner loves gum so I know the chemo changed the way it tastes. And, her medicine “burned” her mouth today, which is also some weird side effect of the Vincristine. That particular chemo has a list of side effects a mile long, and unfortunately, is our mainstay chemo for the next two years.
I got to spend a little one-on-one with Jake today for the first time in a while. I took him to the YMCA pool and we had the best time. Tanner can’t go into a public pool like that so I felt bad taking him and not her, but he needed to spend some time in a pool where he can actually reach the bottom. Tanner and John went for ice cream and to the dollar store to spend her lemonade stand earnings (that 6 bucks was burning a hole in her pocket).
John and I sat on the sofa last night and looked through the fan list for Tanner’s Fcebook page (Friends of Tanner). She has 497 fans and after more than an hour, we finally gave up trying to figure out how all those people know us and went to bed feeling blessed and loved. It boggles my mind that between the facebook fans and those that read the blog directly from www.tanner.celiamusic.net, there are probably 800 or more people wishing us well. We feel all those positive thoughts and prayers and thank you all every day for your support. Some day soon, I hope to use all that support to make difference and save some other family from going through this horror.
And, speaking of all that support, thanks to everyone who prayed for our friend Lily. Lily made counts this week and will be starting school next week on the first day… just like everyone else! Amen.
Love,
Beth
A Long Day for the Right Reasons
Ready for Clinic
August 6, 2009 Did you ever feel like it’s been about four days since this morning? Today was chock full… of goodness, luckily. Today was clinic day and our first day of Interim Maintenance. Tanner’s neutraphils (big infection fighting white cells) were down to 1500 from 3400 last week. 1,500 is still good for a kid with leukemia, but 3,400 was almost normal. So, farewell freedom… it’s back to precautions. We feel lucky to have had that week, though. It was nice to be able to get out.
I always feel like my preconceptions about chemo have been dramatized by television. I picture rows of people sitting in infusion chairs for hours, receiving IV chemo and feeling really sick. While there are some chemos that require a long infusion time, most don’t. And, there are definitely some kids in there that look like they’re feeling really bad, but many don’t. Tanner received two types of chemo today in less than 10 minutes. No IV pole or anything. The nurse just injects them very slowly from a syringe into Tanner’s IV line which is connected to her port. All done. And, as far as feeling really sick… we haven’t come across that yet as of bedtime today. In fact, Tanner was super active today. We played Wii Cheerleader, swam at the Whitler’s and played with some friends that dropped by after dinner. Chemo?!!! What chemo?!!!
Of course, I’m not naive enough to think this will last. I do believe this phase will be more difficult than the last and the cumulative effect of the vincristine and the increasing dosage of the methotrexate will take their toll. But, for now, you would never know anything’s wrong with her.
I registered Tanner for 1st grade at Moore Elementary this evening. It was bittersweet. I was excited that she got Mrs. Franklin as a teacher and that Mrs. O’hara, the reading teacher, will be her homebound teacher. She also has a great class, with many little friends from kindergarten. But, it made me sad she couldn’t come with me like all the other kids, to meet her teacher and see friends she hadn’t seen all summer.
Tanner made me promise to write down the names of all the kids in her class. When I got home, we got her jammies on and sat in bed with her yearbook and looked up all the kids, her classroom teacher and her homebound teacher. Tanner is a social butterfly and she knew all but two of the kids in her class; and those two were new to the school. She was really excited and I wondered whether she really understands that all those kids will be in class without her for at least half the year.
The school is being so remarkable about trying to make her feel connected, though. They’re investigating the idea of teleconferencing through computers so she can check in with the class once a day, and the homebound teacher said she was going home to read Tanner’s blog so she could learn more about her. Her kindergarten teacher, Mrs. Cope stopped by this past weekend and brought Tanner a Build-a-Bear. She asked if she could stop by once a week during this school year and read with her. Wow! Moore Elementary is a small school and we are so grateful for the feeling of family there and for the love and concern they show us and our daughter.
So, it was a full day, but a good one. Four days ago this morning, I thought we might have had a rough day because of the chemo, but it was a great day. Which just goes to show you how unpredictable leukemia, chemo and my kid are.
Love,
Beth