Category Archives: treatment

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

Great Day

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Well, we finally had a great day! I got to talk to my daughter today for hours. She was super for most of the day. For the first time since we have been home, she actually walked around the house without holding anyone’s hand or using her cane.

For hours, we each lay on a twin bed in her room giggling, talking, reading, crafting, making a Father’s Day card for John, and, of course, eating. It was like a slumber party during the day. She actually asked me to read to her several different times and declared “Chemo to the Rescue” her favorite book. She and I were up most of the night before with stomach problems and just general steroid-induced sleeplessness. I’ve missed her so much, I didn’t want the day to end. We’re hoping for another good day tomorrow before chemo on Tuesday.

We have 8 days left of this first stage of treatment. It probably would be daunting for Tanner to understand how much is left, but I’m going to privately celebrate any milestone I can. Not this Tuesday, but next, is our last day of “Induction.” Tanner’s chemo treatment will have four phases: Induction, Consolidation, Delayed Intensification and Maintenance. The first three phases are varying degrees of intense therapy and will last 6-9 months, depending upon how Tanner responds and what, if any, delays we experience due to infections, low blood counts, etc. The last phase, maintenance, lasts years and is much less intense. It will be just monthly chemo treatments and is when most kids’ hair begins to grow back and they can resume normal activities like school.

The end of this induction phase also marks our last day of this intense steroid treatment. The steroids return later, but never for 28 straight days. So many of her most annoying side effects are, I believe, due to the steroids right now. Abdominal cramps, her bloated face and stomach, her mood swings and crazy appetitie, sleeplessness. Even Tanner knows how many days of steroids are left and we are counting the days on the calendar.

Here’s to another good day tomorrow.

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

waylaid

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So, today started out okay.  We had our second clinic visit, which went pretty well.  Tanner had blood drawn our of her port and chemo put into it, and we got a prescription for some extra stomach medicine that, hopefully, might help with the abdominal cramps caused by the steroids and exacerbated by the crazy cocktail of drugs she is taking.

On the way home in the car, her stomach is killing her.  We stop at CVS to see if they will rush the prescription for prevacid (she also takes prilosec and zofran) so maybe it will help her.  They are kind and take mercy on a sick little girl and we give her the prevacid, along with oxycontin (painkiller) and neurontin (to help with nerve pain) as soon as we get home.  She feels better within 15 minutes and is laughing and talking while laying on the sofa. 

Her blood counts were down this week, which they expected, but it makes her so weak and tired.  By noon, she is almost asleep on the couch after gorging herself on a buffet of food items.  I carry her upstairs where she naps for 3 hours and I have to wake her up so she won’t be awake all night.

I shouldn’t have worried…  the chemo has gotten her.  She is, effectively, waylaid.

I take Jake out for a scooter ride around the neighborhood and when we return, she is as sick as I have seen her.  Limp… lying on her back with her arms over her head in surrender, her beautiful face swollen from the steroids, the palms of her hands covered in a rash that will eventually cause her hands to peel the way her feet did last week, face pale, lips cracked… waylaid.  The only sign of life is a frantic pulse point at the base of her throat that looks as if it’s trying to say, “I’m still here… working hard, but still here.”

My eyes well up and I have to turn to gather myself in case she wakes up and sees me standing over her crying at the horror of this.  I want to hate this chemo… I want to curse it and beat it with my fists, but I can’t.  The irony is that these drugs that look like they’re killing my child are actually saving her.

While I take Jake up to bed, John scoops Tanner up and puts her in her bed.  I leave Jake’s room and stop to check on Tanner.  She is awake.  I creep in and feel her head.  She seems warm and I check her temperature to be sure (a temperature over 100.4 sends us back to the hospital).  It is normal.  I put chapstick on her cracked lips and ask if there is anything I can do for her.  She asks me to pat her and I do.  Then, I temporarily lose my composure and say, “I hate leukemia… I really, really hate it.”  She nods slightly.  Remembering to try to be positive, I add, “But we’re gonna get it, you can do this.”  Unbelievably, she nods again.  Humbled, I kiss her on the forehead.

She’s still under there.

Beth

the bottomless pit

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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.

Beth

starting to feel better

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We finally got Tanner to leave the couch! I put her in her room today after lunch for a nap (she slept 3 hours) and then had a pretty uneventful afternoon. Then, Tanner, whose entire life right now seems to revolve around what food she is going to eat next, remembered that Dad said he might bring her home McDonalds. I told her maybe we could spread a blanket upstairs in the play room and have a picnic. So, she calls Dad and puts in an order for she and Jake and we had a picnic upstairs. She was propped up on pillows the whole time, but was very alert and laughed a lot watching Jake and Daddy play like wild men. It seemed very normal, which is rare. So, I’m hoping today she might have a little more energy. I think the chemo is going to put her down for two good days every time and then, slowly, she will feel a little better each day until it is time to get whammied again. She told me today she was afraid to see her friends because she was scared she might give them leukemia. It took me a while to convince her that can’t happen and I’m still not sure she believes me. She also said she was afraid kids would make fun of her because she has leukemia. In what universe is it okay for a five-year-old to have to think about these things? Here’s hoping to see a little more of my girl back tomorrow. Beth

Awesome News

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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.

Love,
Beth

Quick Update

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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,
Beth

Almost a normal day

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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.

Love,
Beth