Category Archives: discoveries

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

Being Different

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I felt like I was talking to an adult. To a friend or colleague who was telling it to me straight. Only I was talking to a five-year-old who has had to handle some pretty adult issues over the past few weeks.

Tanner had woken up from her nap in a great mood after having had a pretty good morning, overall. She was perched on the kid-sized table in our playroom. I was amazed. It was the first time I had seen her sit up without leaning against something in weeks. She was laughing at Jake and encouraging his wacky antics as he searched for the “monsters” she kept pointing out to him and telling him to run from. Then, the phone rang. It was my neighbor, Ashley, whose daughter, Corinne, is Tanner’s best friend. They wanted to come over for a few minutes and I thought it would be a great time since Tanner seemed to feel so good, so told them to come right away lest we lose the moment. That was where the fun stopped.

I told Tanner they were coming and she slid off the table and asked for a pillow so she could lie down leaning up against the table she was just perched on. She visibly slumped… face, body, legs. She looked miserable and terrified. I leaned down and said, “Don’t you want her to come?” She told me she didn’t feel good anymore. I asked her if she was scared and she nodded. I asked her why and she said, “Because we are not the same anymore. We’re different. I have leukemia.”

And therein lies the crux of the problem.

I would love to tell her they aren’t’ different, but I know exactly what she means. Corinne and her sister ran around the room, playing with our train table and a talking doll of Tanner’s, chasing Jake and generally, being kids. Tanner lay on the floor, being sick. She did liven up a little several times and talk animatedly about several topics, including, of course, food. But, right now, she sees huge differences between herself and her friends. They haven’t had to walk the road she’s had to walk over the past few weeks, they haven’t had to accept that they have a disease that will be with them for years to come, they don’t worry every day that their hair will fall out. She’s right… they are different… they are the kind of carefree kid mine was up until May 30.

Truth is, I don’t know what to tell her to make it better. I’ve never been through anything remotely like what she is facing. At five years old, she’s already topped my 40-plus years of living in the “difficult road to walk” category. I birthed her big self naturally, without any drugs, but that pain only lasted 22 hours and 17 minutes, not 3 years. I just don’t have any idea what she is really going through. For once, I am speechless.

In the end, our friends’ visit was exactly the kind of medicine we need more of. The more that Tanner sees that other kids still love her, still treat her basically the same, the more she may feel just like all the other kids. But, I still can’t tell her she’s not different… she just is. And, we’ll have to find a way to prove to her that different is okay.

Love,
Beth

Night Owl

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After such a scary day yesterday, fully expecting Tanner to wake up so sick this morning, I was pleasantly suprised to find that she was not nearly as sick today as she was yesterday.  She still felt crummy — none of the stomach medicine seems to be helping the abdominal cramps and she is constantly dizzy and short of breath, probably due to the drop in her red blood cell count — but she was definitely more spunky than I expected.  She had some really good moments.

More puzzling, however, was how she was last night.  Awake much of the night, she was good natured, talkative and sometimes even giggly.  John and I have talked to the doctors about how much better she seems in the middle of the night and they don’t really have any explanation for it.  I did read that a side effect of the steroids is hypersensitivity to light, sound and motion, so perhaps the dark, quiet of the night is soothing.  For whatever reason, though, if you want to see the old Tanner, stop by at 3 a.m.  We’ll be awake, chatting about any number of things.

Most often, she talks about food at night (another one of the side effects listed for steroids is food obsession).  She’ll wake up talking about how John promised her a McGriddle and those “big tater tots” (aka hashbrowns) the next morning.  Or asking why, for the 100th time, she is not allowed to eat cheese popcorn (because the kernels can cause scratches in the intestines, which if you have a low platelet count, can cause internal bleeding).  She will often ask for food, and after I explain how I’m not cooking in the middle of the night, will settle for cheese nips or pretzel sticks.  Tonight, she actually ordered up her nighttime food before she fell asleep (cheetohs) and warned us not to eat them all while she was sleeping.  Anyway, these conversations are usually very funny (unless it’s the 6th time she’s woken you out of sleep to talk that night) and remind us our child has a huge, bubbly personality that is contagious.

Other nights, the questions are deeper.  This is when you find out what Tanner is really thinking about when she lays awake at night.  The other night, she asked me, “Mom, will I have still have cancer when I’m in the first grade?”  I try to be honest, but gentle in my responses, not telling her more than she needs to know, but not lying either.   Most often, the questions are about losing her hair, which so far is as thick and beautiful as ever.  “Mom, do you think there is hair on my pillow right now?”  “When will my hair fall out?”  “Will my hair grow back in time for school to start?” 

She told me today that it is embarrassing to have leukemia because people know your hair will fall out.  I almost wish hers would go ahead and come out so we could just get this part over with.  How do you explain to a five-year-old that losing her hair will not change who she is, or make people love her any less?  I think the anticipation will be so much worse than the event itself.  Of course, it’s not me losing my hair, so what do I know?

Anyway, her nighttime antics, although amusing at times, can also be exhausting.  After she realized I would not talk with her anymore last night at around 4 am, she actually started talking to the dog.  That’s where my patience ended.  This morning she told John, “Mom yelled at me last night.”  Busted.  She prefers it when John sleeps up there because apparently he’s more chatty at 2 am than I am. 

I didn’t let her sleep as much during the day today in hopes that she would sleep better tonight.  I think I would miss the “night owl” Tanner, though if she disappeared entirely., though.  It’s like turning back the clock before all this happened and hanging with my silly, sassy girl.

Love,
Beth

Kindness

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Pardon my last vituperative post. Temporary negativity.

So, here’s a positive note. The kindness of strangers is amazing. Today, one of my neighbors came by to ask if a friend of theirs, Matthew West, a Christian music artist who has been following Tanner’s blog, can bring us dinner. We don’t know these people, but they are just kind and want to help.

Today, we get a package from Bob Chapek, the President of Disney Studios Home Entertainment. It contains videos, some Sleeping Beauty stuff and autographed publicity photos of the cast of Hannah Montana and High School Musical, some of which are personalized to Tanner. Seriously. (Melissa Dick, you were in Disney World last week and I strongly suspect your involvement here… a million thanks 🙂 If this doesn’t make my steroid-ravaged child smile, nothing will.

Jake’s preschool teacher has been sending Tanner letters almost every day from animals; we got one today from Keith the Cat. She doubles as a pet sitter and sends pictures of the animals and writes a letter. Tanner is intrigued. I know this takes time… taking the picture, printing it out, writing the letter, etc.

These are just a few of the things that happened today. Things like this have happened every day since we landed in the hospital.

My point is, these are extraordinary kindnesses. However big or small, they are extraordinary every one. They make this bearable for us. They buoy our spirits and make us smile. They remind us of the good things in the world when it seems a little bleak.

Tanner now has more than 300 friends on her Friends of Tanner myspace page. More than 300 people in less than two weeks… amazing. John and I find ourselves asking each other, “Do you know someone named…” and often the answer is “no.” Neither one of us know this person who has cared enough about a little girl with cancer, who they have never met, to post a word of hope. Kindness.

We are lifted, no carried by these acts of kindness. I’m hoping to be in a place to return the favor one day.

Love,
Beth

One little moment

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My post for today was going to say, “Steroids.  Mood Swings.  Enough said.”  That was it. 

But, after running away for a walk and trip to the grocery with my friend Kim while John handled dinner and bed for the kids, I returned home to find a picture that Tanner had drawn for Jake to try to explain leukemia to him.  John said she told Jake, “Tata has cancer, it’s called Leukemia and it makes me lose my hair.  Daddy, get me a piece of paper so I can draw it.”  She then wrote the word “loocemea” (I might spell it that way from now on!) and drew two pictures of herself.  She said, “This is Tata with no hair and frowning.”  Then she pointed to the other picture.  “This is Tata with hair.  See, I’m smiling.”  John said she was animated and happy telling him about it, and that then they talked about how the leukemia would go away and her hair would grow back, and she said, “Oh yeah, Jake, I forgot about that part!”

Of course, I bawled.  It would be the second time today.  The first time was out of frustration and anger at what these drugs and this evil disease is doing to my kid.  The second time was because I realized that she is actually processing what is happening to her and that she understands it and is able to articulate it.  That means she could be just steps away from wanting to kick it’s ass.

She and I read this awesome book today called “Chemo to the Rescue” (thanks, Ashley).  It was written by a mom and her 8-year-old daughter who has been diagnosed with leukemia when she was 5 and wanted kids to know that chemo helps them.  It was a great explanation of the disease done in a way kids could understand, without glossing over it with analogies.  It actually explained what is happening inside her body.  She was fascinated, and it allowed us to talk about some things we haven’t talked about.  It was a good moment in an otherwise trying day.

So, look out loocemea… Tanner Page is armed with knowledge and on the loose.

Love,
Beth

Low risk, low risk, low risk!!!

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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.
Beth

Tanner’s diagnosis

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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.

Love,
Beth

Tanner Update

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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

Tanner in hospital again… please pray

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vch_exterior_logoWe’re at Vanderbilt again with Tanner in critical care — this time an as yet unexplained problem with her platelets, red blood cells and white cells. Could be her liver… could be some other things I just can’t bring myself to write here. She is in a lot of pain, but highly medicated and managing. We should hopefully know more later tonight or tomorrow morning. Don’t need anything from anyone except your most fervent prayers, which I know you will lift up.

Seems inhuman that we are here again. We are all exhausted and trying to guard Tanner’s and our rest in case we are in for a long haul. We’ll let you know when we are up for visitors, but for now, we’ll send out email updates often.

Pray hard.

Beth