Night Owl

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.


Now I’m just mad

So, last night John mentioned to me that only 3,000 kids are diagnosed with leukemia each year in the U.S. I don’t know why I’ve not seen this number yet with the plethora of information I have pored through to learn everything I can about the disease that is trying to kill my daughter. But, somehow I haven’t.

3,000. How can this be? Do you know there are more than 75 million kids in the U.S.? I looked it up on the Internet. My child is one of 3,000 out of more than 75 million kids to get this disease. That’s a .004% chance that my child could be diagnosed with leukemia.

That makes me so outrageously mad. I really can’t explain why exactly, but maybe it just seems like a cruel joke to get something this rare. To have it rip everything apart this way.

Don’t get me wrong. I’m more thankful than you can imagine that more kids don’t get leukemia. I wouldn’t wish on anyone. But, as John and I both said in the surreal two days between the time a doctor first uttered the word “leukemia” and the time we knew it to be fact, leukemia is something you give money towards when you see the little bald kids on a telethon on TV or on a poster in the grocery store. It’s not something that happens to your kid.

Or, is it?


the bottomless pit

Good grief!!!  You have never seen a child eat until you have seen one on high dosage steroids!  It is a full-time job just keeping her fed.  Two-and-a-half rice and cheese tacos, tortellini, chex mix, oranges, chex mix, two bagels with cream cheese, chex mix, etc., etc., etc.  She ate cheese nips at least three different times in the middle of the night last night.  She wakes up at night and talks about the food she will eat the next morning and begins planning her next meal before she even finishes the one she is eating.  Food, food, food.

Each day we get further away from the chemo she gains a little energy.  She still lays down most of the time and sleeps a lot, but she has more moments when she seems like herself.  Unfortunately, tomorrow is her last day before chemo on Tuesday.  We’ll try to make the most of it.

What I really can’t wait for is for the end of these steroids.  They have robbed us of our child.  She is lethargic and depressed then obstinate and agitated.  She isn’t my bubbly child.  She has no enthusiasm for anything.  Her birthday is in two weeks.  She told me today she didn’t want to have a birthday party at all… she didn’t care.  I have booked her a birthday party at build-a-bear during her week break between this first stage of chemo (induction) and the next (consolidation).  By the day of her party, she will have not had steroids or chemo for two weeks.  I’m hoping she’ll feel really good and change her mind.  Her doctor will allow us to do it during that week because typically white blood counts will rise without the chemo.  Build-a-bear has graciously agreed to let us in before the store opens at 9 am so that she is not in a crowd of kids (another of the doctor’s stipulations).  I want this to be special for her.  I don’t want it to be yet another thing we lost to leukemia.

So, we have 14 more days of steroids and then, maybe, we’ll get her back.  She’ll have to take the steroids again later, but I think for only 5 days out of the month.  Pray for our patience during the next two weeks so we can get through this.

Thank you all for your continued support.  We are lucky beyond description to have such friends and family.   We love you all.


One little moment

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.


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,

Almost a normal day

Today seemed almost normal, in a way. Tanner had a lot more energy and her personality returned to her. She spent lots of time bossing Jake around telling him to bring her things — see, normal! But, not really normal… she still can’t really walk. She can go about 10-15 feet and then it’s just too much. Today, Jake gave her an old cane that was in our umbrella stand and said, “help Tanner walk better.” Seriously, he did. And she did. The cane is sitting by her bed as she sleeps right now. She used it all day. It really helped and gave her a sense of independence (she’s been holding someone’s hands until now). We’re really worried about her legs. She can’t walk partially because it is painful, but she also just seems to have a lot of weakness. We suspect it is a side effect of one of the chemo meds.

Tomorrow, we go back to Vandy for a spinal tap and chemo to the spinal column, a bone marrow biopsy to see how effective the chemo has been and her IV chemo. They expect to see less than 1% blast cells (down from 95% just a week ago). This just gives you an idea of how brutal this chemo is. She’ll be under for these procedures, so no pain there. I’m praying that she doesn’t have great discomfort afterwards from the bone marrow biopsy, but suspect she will.

So, the appetite increase they promised as a result of the steroids has finally arrived. Just in time, Tanner looks emaciated. She ate, and ate, and ate. Chicken and tater tots for breakfast. A cheese sandwich, oranges, banana, a slice of bread. Had ice cream sundaes at 9 am this morning (thanks Rosemary, for the ice cream and fixings). Why not? Then Tanner says, “Do we have any mini corn dogs?” So off to Sonic we go. I told Tanner at bed time we were having an eating party at 4 am. She can’t have anything to eat after 5 am and I don’t think she’ll make it until 1:30 pm when her surgery is without gnawing her arm off. She requested bread and gogurt. This is a weird new life, for sure.


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.