Twinkle Toes

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 ( 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.


It’s Just What People Do

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.


More Great News!

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.


Awesome News

Oh, you people must have really been praying for low numbers, because we got the results of Tanner’s bone marrow biopsy and, to everyone’s amazement, including the doctors, it shows she has less than 1% of leukemia cells left in her bone marrow after just one week of treatment!  That’s my girl!  So like her to be ahead of the curve.  The doctor was thrilled.  They had told us not to expect to get below 5%!

What does this mean?  Well, she is officially in remission, which seems such a weird term since she still has years of treament left.  But, the fact that she got there so quickly puts her in the “rapid responder” category which positively affects her course of treament and her prognosis.  Basically, this news, plus the test results from last week that classified her as low risk mean Tanner is in the very best position you can be in if you have ALL.  In the midst of all this awfulness, we feel extremely blessed for a moment.

So, no bone marrow biopsy next week… yeah!  Just IV chemo, which is oddly uneventful, but deadly to Tanner.  As I have said before, when she is kicking cancer’s butt, she feels like crap.  So, after waking up in a great mood today with awesome energy and improved walking, she deteriorated to just plain old sick by the end of the day, once yesterday’s chemo treatments kicked in.  She never did anything today but color once or twice.  Even after I turned off the TV, she laid on the couch for 4 hours with no entertainment other than watching Jake play.  Sad.

Speaking of Jake, he had tubes put in his ears and was home by 8:30 am (Did I mention that today was a VERY long day?).  He did well.  Cried a lot, and was pretty whiny and awful today, but otherwise okay.  My mom came with me to the surgery and John stayed home with Tanner.  My Mom and John’s Mom have been Godsends.  Seriously, there is no way we could do this without them.

Again, thank you to everyone I haven’t thanked in person or by email for the cards, presents, meals, favors, etc.  You know who you are and you know if I could, I would send a proper thank you note, but the kids’ needs right now are all consuming and I just can’t do it all.  I surrender.

Okay, and let me give one last futile attempt at steming the flow of presents coming Tanner’s way.  It is not that we do not appreciate them, but we have a whole room of them now, and she’s just too sick to appreciate them.  Many are not even opened yet because I just keep hoping she’ll feel well enough to get at ’em, but when she does feel good, she just wants to be a kid and play with her brother, sprinkle water from a watering can onto the patio, blow bubbles in the yard, etc.  Don’t get me wrong, I’ll be bringing all those crafts you’ve given us out over the next 7 months, I’m sure, and we’ll use them.  But, rather than send us anything else, make a donation to the leukemia association and help keep someone else from ever having to go through this.  Seriously.

What amazing friends and family we have.  We are humbled by the outpouring of support for our family.


Quick Update

I’m tired, so I’m going to just deliver the news and save all my ponderings and pontificatings for another day. Tanner had her first “clinic” day in the outpatient cancer clinic. She was terrified, but did really well. Had her port accessed by needle for the first time, which was a little rough, but I think she will get used to it. They have some amazing numbing cream, but she just hates needles and gets really emotional. She did awesome in her surgeries — a spinal tap with chemo infusion and a bone marrow biopsy. In fact, as John and I sat waiting for her to wake up in the recovery room, John said, “This is our new normal,” and sadly, it felt true. It was the third time in a week, we had been in that very room with the same recovery nurse (Thanks, Ms. Lee… you’re awesome!)

We will find out tomorrow what percentage of Leukemia cells are still in her marrow. Less than 5% is considered remission, but they think since she started out with a 95% infiltration, she probably won’t be there yet and we will have to have another bone marrow biopsy next week. So pray for low numbers to save her one more surgery.

Her blood levels were great, holding steady and even increasing in some cases. Her red blood cells had dropped some, which is the source of her tiredness, but her energy level has been up the last few days so we are thankful for that. It will be interesting to see how the spinal chemo infusion and the IV chemo today affect her.

The doctor was encouraging about her difficulty walking. She feels it is still leukemia pain and not a side effect of the chemo (this is a good thing, since leukemia pain should fade and the chemo progresses). With her very high infiltration, it may take longer than normal for that pain to recede for her. If it is a side effect of the chemo, it will likely be with her for the next 6-9 months until we hit the maintenance phase of her treatment. So let us hope it gets better so she can get back to the business of playing.

Okay, this post is still longer than I intended. I have no gift for brevity to be sure. Getting up at the crack of dawn tomorrow for Jake’s surgery (yes, this seems like a cruel joke, but it is not, I assure you). He is just having tubes put in his ears for chronic ear infections, which is supposed to be just a nothing procedure, so not a big deal. Still, it was pretty ironic that there I was waiting for Tanner to wake up and I am on the phone with another hospital arranging for Jake’s surgery… again, my life is just weird lately.

Good night,

Low risk, low risk, low risk!!!

Never have a wanted to kiss a doctor more than when Dr. Mixon told me that the results of Tanner’s chromasome translocations test (I’ll explain this later) moved her from standard risk to low risk!!!!!! This means the best outcomes prognosis and the least aggressive treatment plan. Hallelujah! Not only that, the doctors are so pleased with how well she is responding to the treatment that she may get to come home next week! Unbelieveable. You cannot keep this child down. Not leukemia, not crazy drug reactions, not even disease-carrying ticks!!! Tanner Page… world champion disease fighter delivers the first of many roundhouse punches!

The chromosome translocations test shows them the actual makeup of the leukemia cells, which of course, are abnormal. Leukemia cells are actually just white blood cells that don’t mature. Some stop when they are babies, some when they are toddlers and some when they are teenagers. Just depends on which type of leukemia you have (Tanner has pre-b ALL). So there are all these teenagers running around in your body partying and drinking and trashing the house. These cells also grow more quickly than normal cells, and just like word spreads like lightning about a great party, more and more teenagers come and the whole place goes to you-know-what in a handbasket. Within these crazy immature cells, the chromosomes sometimes swap genetic information. What boggles the mind is that modern medicine knows which of these translocations, as they are called, are predictors of good outcomes or bad outcomes. Tanner’s translocation is an indicator of, and I quote, “very good outcomes.” (thanks Kim for the helpful book that helped me understand this).

John and I are elated by this news and I got Tanner to high five me, but it means nothing to her and doesn’t change that fact that she has been woken up two nights in a row from a deep sleep to take five NASTY medicines, or that now her cheeks tingle and drive her crazy, or that tomorrow she will get a shot in each thigh, simultaneously, that will put a vaccine to shame. Not to put a damper on the good news, but just to say that life is pretty miserable for her and will be for a while. The reality is that for a leukemia patient the good news that treatment is working really well is bad news for the way they feel. We are cheering as we watch Tanner’s white blood cells drop because we know most of those cells are leukemia cells and their butts are being kicked, but for her, that means she feels very tired and weak. She still has some pain from too many cells exerting pressure in her bones, but that seems to be lessening as the chemo does its job. The side effects of the chemo are beginning to show, though. She had jaw pain today that is classic for one of the drugs and has had to have morphine twice today in order to be comfortable. Thank God for morphine.

So, speaking of side effects, they warned us mightily about the heavy dose of steroids she will take for 28 days straight and boy, were they right. Talk about cranky and unreasonable. And, sadly, a little girl who wakes from sleep crying uncontrollably and just wants Mommy to hold her. I want to hate all these drugs, but they’re saving my baby’s life.

We did have some good moments today, though brief. Again, Jake was a miracle-worker. I have some hilarious pictures of the two of them wearing John’s mother’s wigs and laughing hysterically. (I’ll get Ron to post them as soon as they download them along with a picture of my brother and his newly shaved head.) They played paddle ball and Tanner practically jumped out of bed to follow him around the room (yes, on her own two feet) while I followed along as unobtrusively as possible with her IV pole and tried to pretend I wasn’t there. Then. after lunch and a long nap, she and I went down to the playroom after dinner and drew some pictures. I drew her a picture of her, her future husband, child and cat when she grew up. She thought that was silly — I’m hoping it’s prophetic. She drew a picture of a dress, jewelry and a scarf. Then we cut out hearts and flowers to decorate the room. Priceless.

I want to take a moment to thank Ron Whitler for setting up this site for me. It has made it much easier to keep people updated without me having to respond individually to each inquiry. Please don’t be offended if I don’t write you an email answering your questions about Tanner’s status or even ours, but direct you to this site instead. Sometimes I just can’t answer everyone’s emails, even though I want to. And please don’t feel bad if you only read the first paragraph since I’m so lengthy at times. I’ll try to put the meat right there so you don’t have to wade through if you don’t have the time or inclination to do so. You don’t have to read it all, but I do have to write it all. It’s the only thing that lets me lay down my head at night without having nightmares.

Speaking of laying down my head,

Good night.

Tanner’s diagnosis

Dear Friends and Family:

190px-acute_leukemia-allFor those of you who are receiving these email updates for the first time, let me start by saying that Tanner is in the hospital again and has been since Thursday. Finally after many days of intense pain, fever and unexplained abnormalities in her blood work, we have a diagnosis, but it is not any from which we can find any comfort. Tanner has leukemia… my sweet, funny little girl has cancer… so hard to believe, but writing this helps me cope somehow.

It is midnight and I have just finished signing the paperwork for her to have a chemotherapy port surgically implanted into her chest tomorrow so we can begin treatment immediately. She will also have a spinal tap. This is following a bone marrow biopsy today, so suffice it to say, not a good couple of days for her.

Odd as this sounds, if you are going to have leukemia, this is the type to get. She has ALL [read more at Wikipedia], which for a girl her age, has a 95% cure rate. We will be in the hospital for treatment for 2-4 weeks, followed by outpatient chemo treatments once a week for many months to come. That will eventually change to once a month. Her total treaments will last 2 1/2 to 3 years — a fact that I still cannot come to any terms with at all. I think getting through tomorrow will be my goal for now.

I sent my poor exhausted husband home to get some rest, but the nurses and doctors are quickly becoming friends now and have been super, so I don’t feel alone.

Her intense back, neck and leg pain, which doctors found to be incompatible with Leukemia, is due to a high concentraction of leukemia cells clustered in her spine an legs, which is apparently not seen often. 90% of the cells in her bone marrow are leukemia cells — how could that be when she was riding her bike so enthusiastically just three days ago?

Usually, she is pretty comfortable as long as she remains completely immobile, but just minutes ago developed a pain in her side that is hurting her now even when she rests. She calls it a needle pain and when it flares, tears roll down her little cheeks and her eyes grow wide in helpless suprise. She looks at her Mommy to fix it, which of course, I can’t. The doctor orders more morphine and now she is trying to go back to sleep.

You wonderful people have been calling and emailing asking what you can do to help. Tomorrow we will get a better idea of what the next few weeks look like and let you know. For now, I know she can’t have a lot of visitors, due to immune suppression issues. On this unit, each room can only have two visitors, including parents. I know seeing kids would boost her spirits, but we have to be very careful that they are healthy kids and limit the number of different people she is exposed to. Cards, letters, pictures or any kind of little things that would remind her of her friends would be appreciated. Even a little video of a friend wishing her to get well that we could play on the computer would be great. Anna Lynn Whitfield from our church is coordinating meals, which are also greatly appreciated. For now, my parents are taking care of Jake, but we may need some help with that eventually.

I don’t know what else to say. My heart is broken, but will need to heal itself by tomorrow so I can be strong for my little girl.


Reason to hope — Tanner!

Okay, we have a little hope that it is not Leukemia… Doctors came in today to say the more tests they run and the more Tanner’s symptoms progress, there are some things going on that are not typical of Leukemia. She still has abnormal white blood cells — a strong indication of leukemia — but her elevated enzyme levels and and an enlarged bile duct are not usually associated with Leukemia. They are currently doing a battery of blood tests to rule out some kind of viral or bacterial infection as well as having a liver specialist chase down her bile and enzyme situation before proceeding with the bone marrow biopsy. This by no means rules out leukemia, but is the only hope we have that it could be something else. How typical of Tanner to be atypical.

Tanner Update

Beyond all our understanding, Tanner’s current diagnosis is presumed to be leukemia.  All tests, lab work, clinical signs point to this diagnosis, although  a bone marrow test is necessary for a firm diagnosis.  We are beyond devastated, but know we must gather ourselves to face this horrible thing head on and conquer it.  Needless to say, we are in for a long, ugly haul.  We will be in the hospital for at least 2 weeks undergoing intensive chemo and then ongoing weekly visits to the hospital for many months and long-term chemo for years.  I can’t believe this even as I write it.

Normally, we wouldn’t send out an email like this without a firm diagnosis, but feel we need to prepare for the seeming inevitableness of incorporating this new challenge into our lives.  So, putting all pride aside, we are letting our dear friends know that we will be needing help.  My parents are coming tomorrow for an undetermined length of time to care for Jake.  We will need food (I can’t believe I am asking so shamelessly, but I know when I am beat), possibly help caring for Jake and, possibly someone to sit with Tanner at times.  And, of course, prayer.

Tanner doesn’t know yet… I can’t imagine telling her she will be missing all the things she loves to do so much.  I’ll have to table that thought until tomorrow.

Once again, we thank God for our unbelievable friends. 

Beth & John