Category Archives: reality

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.

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

A Relaxing Day

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

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

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

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

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

Just a typical day at the Page house…

Love,
Beth

Hospital Update

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Tanner’s fever is down this morning after 2 IV antibiotics. Her leg pain has also lessened, thank God. Her blood cell counts still look good today, so I think we’re going to get to go home. We just have to find an attending who can make that official. The hospital is packed and it’s a holiday, so we may not even see the attending until this afternoon.

She’s on contact precautions right now. It’s so funny, because here I sit with my cold that has brought all this on, but every medical person that comes in here gowns up and wears gloves. So strange. Definitely don’t plan on coming by to see us unannounced; we can’t have visitors at the moment.

Good grief! When else does a 100.7 degree fever send you to the hospital overnight? Will keep you posted.

Love,
Beth

In the Hospital… again

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Well, it was shaping up to be such a good week, but Tanner came down with a low fever this morning that crept up to the dreaded 100.4. Once it hits 100.4, we have to come to the hospital to be checked out. We thought we were going to make it into the clinic, but with traffic, didn’t make it in time and had to come in the the ER. They did some bloodwork and her counts look good, and normally they would have done some IV antibiotics and let us go home provided we come back to the clinic tomorrow for a follow-up. Since it’s a holiday tomorrow and the clinic is closed, we are having to stay overnight so they can do bloodwork tomorrow and just keep and eye on her. Unfortunately, the hospital is full, so it looks like we’re stuck in the ER for the night. It’s noisy in the ER and no one sleeps very well here. It’s 10:30 and Tanner has still not been able to go to sleep due to all the interruptions and some pain. No nap today, either. I’ll be “sleeping” sitting up in a rocking chair. Lovely.

I’m a little glad we’re staying, though. She’s having more leg pain than normal and odd hot and cold flashes even though her fever is down. Better here than at home where all of this would be freaking me out.

The reality of this disease never ceases to amaze me. We were planning an afternoon swim at the Whitlers today and Tanner was so much more vibrant today. Even while she had a fever, we sat at the kitchen table and painted suncatchers, a project from VBS, which we missed, but a friend was nice enough to bring the crafts by. Just makes you feel like everything could go wrong at any moment. I’ve never been a worrier, but by the end of this I may be.

Did I mention that Jake and I have had colds and that’s probably why she has this fever? Imagine feeling like the smallest sniffle you have could be deadly for your child. I’ve hand sanitized myself to death, gone to the minute clinic and begged antibiotics out of them so I would get better quicker and even worn a mask around her at my worst. But, I’m learning that even when her counts are good, she still doesn’t have even close to the immune system you or I would have.

Thank God my Mom was in town so I could leave the house quickly without worrying about Jake. I keep thinking I can do this by myself, but I can’t.

Anyway, I’m rambling now and Tanner’s pain is increasing. I’ve had them call her oncology team because something weird is going on… my Mommy radar is going off. I’m going to see if they can get her some stronger pain meds.

Will update in the morning.

Beth

More Great News!

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In the words of Tanner’s doctor she is now among the “lowest risk” of all leukemias. The results of the detailed bone marrow study from yesterday confirm that there is no leukemia left in Tanner’s bone marrow. TAKE THAT CANCER!!! This isn’t some cupcake you’re dealing with here… this is Tanner Page. I mean, have you ever seen this child throw a tantrum? If you had, you would have never chosen her as an incubator for your vile, evil lazy leukemia cells. You would have recognized that you have met your match! Just move on, give up and DON’T BOTHER TO COME BACK!!! This is how we roll at the Page house and you are NOT up to it… I promise!

So many things to be thankful for this week. Our last day of steroids for a while, the end of the first phase of treatment, Induction, and now this. Just two days with no steroids and I can already see a difference in Tanner. She is still eating like a maniac, but she was definitely more lively and sassy today and her stomach pain seems to be lessening. Hoping she sleeps better tonight.

Thanks to all our friends who came by today, we had a great day. Tanner had visits from Gracie, Leah and Zach and Grandmom came today, too. Big day with lots of fun. Thanks to Leah for teaching Tanner how to “finger weave.” She sat on the sofa all afternoon weaving a very long rope. It made me happy to see her sitting up for that long instead of lying down.

Tonight as we were going to bed, I tried to tell Tanner how proud I am of her. I just hope it sinks in because usually she looks like she’s just embarrassed when I say stuff like that. I tried to explain “grace” to her, which is very difficult, I found out, to explain in terms that a five-year-old can understand. I finally resorted to referencing a Disney movie “Princess Protection Program” to explain the concept. I think she understood. I told her that I was particularly impressed by how she was handling losing her hair, which has been falling out for the last week or so. She looked shocked and said, “My hair isn’t falling out!” Oh no, I thought, she’s in denial now. Then, she exploded into peals of laughter and shrieked, “I’m going to glue it back on! No, I’ll finger weave it to my head!!!” We laughed hysterically and I reminded myself how lucky I am to have gotten such a kid. I’m glad to see her sense of humor returning to her. Goodbye steroids… for now.

Thanks again for everything people are doing for us. We are humbled every day by the outpouring of support our child has inspired. She is awesome and we know it, but to see many others recognize it and lift her up and help carry her through this awful mess is so touching. We are blessed by those who love our daughter and care about her plight in this way. All we can do to repay this kindness is to pay it forward. To hope that our story will help inspire people to demand that no other family ever have to live through this again. To donate, to give time and energy and to raise awareness for childhood cancer.

Love,
Beth

One more day

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The last day of steroids tomorrow!!! I know we’re making a huge deal of this, but you just can’t imagine how horrible the side effects are getting. She is so exhausted from not sleeping and if her face and stomach swell any more, she will pop. Not to mention the constant stomach pain. At first, the mood swings seemed like a real pain, but now they just seem like a minor annoyance compared with the rest. I’m not sure how long the steroids will take to get out of her system, but we are all looking forward to a good night’s sleep, I can tell you that. Hopefully, by the end of the week.

I keep meaning to point out that Ron added a new link to this page. It’s to a book called Chemo to the Rescue. If you are the parent of a friend of Tanner’s, I would encourage you to read this book to them so they can better understand what is happening to Tanner and what to expect when they see her again. You can read the book online for free. It is Tanner’s favorite book now. It was written by an 8 year old girl and her mom after she finished treatment for ALL. They wanted kids to know that chemo is really a good thing and to understand what was happening to them. It is very positive, but honest. I think Tanner likes it because she knows it doesn’t sugarcoat leukemia with any pretty analogies and it is written to empower kids. We read it all the time and today, Tanner, John, Jake and I all chanted and drummed to the “rap” that is written in it about chemo. It was hilarious. She made up hand motions to certain parts of the book and had Jake doing it with her. They were pretending to put magic EMLA (numbing) cream on their ports and then stick themselves with an IV line. Bizarre fun.

I’m going right now to put together Tanner’s nighttime “snackpack.” It’s a big tupperware tub that we fill with snacks so she can nosh all night at will. She has requested Cheese Nips, Sunchips and Pretzel sticks.

Here’s hoping you sleep because I know I won’t 🙂

Love,
Beth

The other one

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The first thing Jake said when he woke up this morning is, “Where’s Tanner? She feel better?” It’s one of the first things out his mouth every morning for the past three weeks. Even before she came home from the hospital, he would ask me when I came home, “Tanner come home, too? She feel better?”

When they are sitting on the couch together, he pats or rubs her leg and sometimes will repeatedly ask, to her annoyance, “Tanner, you all right? You feel better?” He helps me put lotion on her feet where they are cracking and peeling. He is interminably sweet.

But, I can’t help but think that a 2-year-old shouldn’t have to wake up in the morning worried about anyone. I keep telling myself it is a blessing that he is so small and that he won’t remember much of this, but then I realize that 2 1/2 to 3 years is a long enough time, that whether he remembers it or not, it will shape him. What will that look like?

Will he be the other child? The one people forget to ask about or I forget to tell about because he doesn’t have cancer.

The truth is, we all have cancer. Me, John, Jake, and of course most of all, Tanner. But, as it eats at Tanner’s body, it eats at each of us in different ways. A two-year-old that worries about his sister and knows that she can’t play like she used to. A mother and father who now know that anything can happen to your kids… nothing is out of the realm of possibility. A family that used to go, go, go and now is having to learn to find joy in quiet moments at home.

It kills me to turn away from Tanner sometimes when I know she is feeling bad and wants her mama, but I have two children and her needs cannot overshadow Jake’s every time. Jake has a cold today and was a little whiny and fussy. He needed his mama, too. And, although a little discomfort from a cold cannot really compare to the pain that Tanner is in, the need behind both is really the same. And, even when he’s not feeling bad, he still has needs — to play, to read a book, to cuddle, to ride a bike or run in crazy circles around the house. It’s gutwrenching, really, to decide that those needs are as important as Tanner’s need for her mommy when she is hurting and uncertain.

In the end, I can only do my best and hope that she will learn independence and fortitude in the face of adversity, and that he will always stay as sweet and nurturing as he is now. And, that he will know he is loved just as much, even though he didn’t always get the attention he might have otherwise had.

I can’t wait until the day I can tell him, “Yes, Jake, Tanner feels better. We’re all alright now.”

Love,
Beth

My superhero

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Today, a little boy from Tanner’s kindergarten class came by to give Tanner an adorable card he made her. On the front, it said “Super Tanner” and had a picture of Tanner flying in a cape. Inside was a sweet note, dictated to his Mom, about how Tanner was a superhero who was going to win the battle against the evil leukemia monster… adorable and so true.

Today, my needle-phobic child who has to take anti-anxiety medicine just to go to the dentist, showed the child life lady a hilarious video of Jake in one of Lily’s pink wigs while the nurse put the IV line into her port. No holding her arms down, no screaming, no crying. A little wimpering after it was all over and a little visible anxiety beforehand, but wow, what a difference. Then, when it was time to take it out, again, no big deal. Last week we had to lay on her legs and hold her arms. Amazing. Tanner Page, my superhero.

It is humbling to discover what a five-year-old can learn to accept. She has accepted that she has cancer, that no matter how repulsive a medicine may taste, the pain relief is worth it, and that she will lose her precious hair. She will accept so many other things that a five-year-old shouldn’t have to accept, but she will be so strong when she finally beats this.

The other day, she asked the question we had been dreading most: “Mom, do people die from leukemia?” I knew this question would eventually come, but didn’t expect it so soon and wasn’t really prepared the way I wanted to be. John and I paused and then I explained that grown ups and little tiny babies get leukemia, too, and that they sometimes die because they can’t fight infection as well, but that kids like her do super with leukemia. This seemed to satisfy her for the moment, but I know the question will come up again, and, eventually, she’ll figure out that some kids do die from leukemia. Then, she will have to accept that, too.

But, I’ll do everything I can to assure she never accepts that SHE might die. No way. I’ve never even considered it ,and I don’t want her too, either. That is not her fate. She is a superhero and superheroes never give up and always beat the bad guy.

Love,
Beth

Baby Steps

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Most of you probably know that Tanner was in the hospital two months ago for a life threatening reaction to Bactrim and, possibly, ehrlichiosis which is a tick-borne illness. She had to be lifeflighted on a Monday night and was gravely ill for several days before being released on Friday afternoon with a course of antibiotics to finish as our only reminder of our time there. Tanner was sad and depressed in the hospital (it doesn’t suit her bubbly nature) and didn’t even want to get out of bed until I made her. But, as soon as we left the hospital, she came alive and never looked back. The next morning, she was playing Wii with friends, refusing to take a nap, and demonstrating jump rope moves for her brother. By Monday, she was back at school with no indication that anything had ever been wrong. Not bad for someone who was on a helicopter with a 50/50 chance just a week earlier.

That is my kind of illness… quick and dirty, with immediate results. I’m not really cut out for stuff that lingers. I like the kind of job where you work harder than everyone else and you see the best results immediately. I could never be a farmer… heck, I can’t even keep the plants the kids give me for mother’s day alive for more than a couple of weeks. All that watering, day in and day out… you get the picture.

So, when Tanner left the hospital after her leukemia diagnosis, I guess in the back of my mind, I thought things would get better… that she would bounce back the way she did before. Not that I was so stupid as to believe she was going to lick leukemia in a few weeks, but I guess I expected there to be some kind of forward motion to her recovery.

There is no forward motion. Only back and forth, up and down, side to side. Anything but consistent forward progress. Cancer has to be one of the only diseases for which the treatment is as bad or worse than the disease itself. The cure that almost kills you, as I like to say.

So, here’s how a typical day goes: Tanner wakes up crying this morning (as she does every morning since taking the steroids), after pain medicine, she feels a little better, eats voluminously and watches TV. She knows that eating too much will hurt her stomach, but its like the pull of the steroids outweighs common sense and she overeats, resulting in an ugly tummy ache. I give her something to help her tummy and then she plays on her computer for a while and helps Jake play on mine. Then, we go upstairs where she lays on the floor and talks to Jake while he plays. When we decide to go downstairs again, she begs for my help getting up off the floor. Even though I want to help, I know she needs to use those muscles and encourage her to do it on her own. This causes a giant temper tantrum (steroids, lack of sleep) that causes me to have to send her to her room where she promptly falls asleep for 2 1/2 hours. After she wakes, we eat more, of course, and go across the street to her friend Corinne’s house. I haven’t told Tanner about this because I know she won’t want to go… it makes her so anxious. As I expect, she balks at going and we arrive with her crying. Poor Corinne looks alarmed, but sweetly asks what’s wrong and invites Tanner to sit on a little couch in the playroom. Within minutes, they are looking at my new iphone and comparing games. They spend the next hour happily drawing and talking together on the sofa. I have to pry her off to go home. The trip home seems like miles. Her legs buckle on the stairs out of the house and she falls onto her bottom. It goes downhill from there. The heat beats her and she is exhausted when we get home. We regroup and have a much-anticipated visit from Lily, an 8-year-old little girl from Franklin who also has pre-b cell ALL and is about 7 months into treatment. It is their first meeting and we were excited to see her. But, the horrible stomach ache returns and Tanner can’t really enjoy the visit the way she wants to. Her stomach gets worse and worse and she can’t eat the McDonalds she wanted so badly all day long. We finally manage to get the right medicine to ease her pain just in time for bedtime.

So, it’s not just one day up and one day down, it’s 15 minutes up and 15 minutes down. You never know when a symptom will creep up and rob her of her personality temporarily. And, even though I know the tests show she’s kicking leukemia’s ass mightily, I don’t see it. I just see a little girl who can be giggling and cutting up one minute and groaning in pain the next.

So, I’m learning to take baby steps. To not expect it to get progressively better each day, but to have faith that it will get better… eventually. I guess I’m going to have to learn how to water a plant every day no matter how slowly it seems to be growing.

Love,
Beth