Category Archives: cancer

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

Twinkle Toes

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Tanner dressed for a recital 2 weeks before diagnosis

Tanner dressed for a recital 2 weeks before diagnosis

July 14, 2009 Tanner had a private dance lesson today… for an hour! Her very sweet dance teachers took time after their workout to teach Tanner and her friend Corinne. They had a ball and I was amazed at how well Tanner held up. Only by looking at some really subtle things could you tell anything is wrong with her. Like the fact that she can’t skip (although she tried) or leap, or spin quickly. But, she kept up with all the moves they taught her and the ballet stretches and positions, and never knew she was getting some of the best physical and mental therapy. Thank you so much to Morgan, Rachel and Elisha at Histown Dance Studio (histown.com) for caring so much about my daughter.

Tanner’s been taking dance for about a year-and-a-half, both hip hop and ballet. The lesson today stirred up a memory that haunts me. Two weeks to the day before Tanner was diagnosed with leukemia, I took her to our pediatrician because her back was hurting. She had been complaining about it on and off for several days and had even woken up in the night once, crying, saying her back and leg hurt. The pediatrician, and I, agreed that she must have strained a muscle. She had been unusually active (which is saying something) for several days before that with two dance recital rehearsals, the recital itself, field day and the kindergarten rodeo. Anyone could easily strain a muscle with all that going on. We gave her ibuprofen for a few days and it went away.

It came back on June 28th at 9 pm, just an hour-and-a-half after Tanner went to bed. This time, it made her scream and curl up in a ball and writhe in pain if you touched her. It was leukemia and it had been stalking my child for at least two weeks.

So, I’m haunted by the pictures I have of her at that recital. She looks like any other 5-year-old, happy to be in a cute costume and excited to show off her moves at the big show. But, I keep looking at those photos. I zoom in on them sometimes, trying to see if there were dark circles under her eyes. Is that a bruise I see on her leg? Tanner has always been very thin, but her legs look super thin and long in those knee socks. Too thin? Her face looks really pale, especially for the middle of May when we have playing outside so much in the beautiful spring weather. Almost ashen.

Then I compare them to the photos from her December recital before the bactrim reaction sent us to the hospital for 5 days in March and before the leukemia. She looks so healthy and beautiful. Why didn’t I notice how pale she was later?

Tanner at a Dec. 08 recital

Tanner at a Dec. 08 recital

Then, I remember my Mom telling me on a visit that she thought Tanner looked tired because she had dark circles under her eyes. When was that? I can't remember. Tanner has chronic ear infection problems, so I thought they were the "allergy shiners" kids with sinus and allergy problems are prone to.

The point is, I am haunted by the fact that the leukemia was already there in those photos of the spring recital. It was lurking there conducting its evil business and no one knew. My beautiful, happy, dancing, twirling daughter was being stalked by a killer and we didn't know.

Not that it really would have changed anything; I just don't like it. It mars some happy memories for me. Those pictures will never just look like harmless pictures of a little girl going to a dance recital; to me, they look menacing.

It's just another of the many things this disease has take from us– our freedom to go places and do things, the house of our dreams that both the kids and John and I were so excited to move into, our peace of mind in believing that nothing really bad will happen to our kids. I am sure that one day it will give us something back (besides our daughter). I'm sure we'll get something out of this — strength, courage, new friends, a closer-knit family — but there are days that are tough to remember that, or believe it even.

This was one of them.

Love,
Beth

It’s Just What People Do

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

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

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

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

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

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

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

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

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

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

Love,
Beth

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

We made it!

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We made it! Tanner took her last dose of steroids last night and we finished our last day of Induction today! Tanner and I high-fived today as she, John, Jake and I goofed around in the playroom. She and Jake were taking turns riding the SmartCycle (how can she ride that so fast and still have so much trouble walking?) and rolling around on the floor. Tanner asked to go for an airplane ride on my legs (no easy task with her recent weight gain!) and wanted to do dance, dance revolution on the Wii. She is coming back to us slowly, in little stutter steps, interrupted by moments of pain and fatigue, but back nonetheless. I’ve missed her and can’t wait to see more my funny, lively daughter.

We had such a smooth visit at the Clinic today. It is scary how normal taking our daughter into surgery is becoming. You know when the Dr. says, “you know the drill,” instead of telling you all things that could possibly go wrong, that you’re becoming a regular. Tanner was a champ today. She chatted casually (about food, of course) with the nurse while she put the IV into her port — no crying, no screaming, not even any wincing. And, when we came to recovery, she had the doctor and nurses cracking up talking about tacos and Sonic. Unbelievable how far she has come in a month.

We’ll have the results of the bone marrow biopsy on Thursday (7/2/09). They use a more sensitive test this time to determine whether there is any cancer left in her bone marrow. Fingers crossed, but I know it will be good — Tanner’s fighting too hard for it to be any other way.

Even though it was a day of celebration, we definitely had a disappointment as well. We were under the impression that Tanner had a week off between the Induction and Consolidation phases of her treatment. We thought that today she was having a spinal tap with a chemo injection into her spinal fluid, the bone marrow biopsy and a dose of vincristine, then we thought we didn’t have to come in next week. Uh-uh. We had the bone marrow and spinal today, but no vincristine. Next Thursday (7/9/09), we go in for another spinal, a dose of vincristine and we start daily oral chemo. Does anyone see a break here? Chemo this week, chemo next week. Surgery this week, surgery next week. Hmmmm. I just keep reminding myself that there are no steroids involved in any of this. Maybe that’s the break.

We also talked in more detail with Dr. Mixan about Tanner’s leg weakness and pain. He said there could be three possible culprits: 1) Since Tanner had a such a high infiltration of leukemia cells in her marrow — 95% — it put great stress on her bones and she could still be having pain from that. 2) the steroids cause muscle weakness and she might get better as the effect of the steroids fade. 3) The vincristine causes nerve pain and weakness. So, we’re going to wait a couple of weeks and see if that gets better and continue to encourage her to move more. If we don’t see a significant improvement, we’ll start doing therapy.

All in all, a pretty good day. Having a visit from friends tomorrow morning and my Mom is coming for a few days to help. Jake and I have big plans for the pool and, hopefully, we might get Tanner to the Whitler’s pool in the next few days once her bone marrow site heals. Good stuff.

One more thing. Without sounding preachy, let me give you some unsolicited advice. Appreciate the things you are able to do with your kids, even the mundane ones. I used to wish I didn’t have to take the kids with me to the grocery store, and now that I can’t, I miss just doing that little regular stuff with them. Being able to just trot out the door on errands and stop off at the playground or McDonald’s playland without thinking about blood counts, germs or immune systems. I never thought something like this could happen to us, but it did. So, appreciate the little things that you have; they really are precious.

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