Clinic Day #24

December 4, 2009

Holy neutraphils Batman!!! Went to clinic today hoping to be over 1000 and found out Tanner had 2000 neutraphils!!! FREEDOMMMMMMMMMM!

We came home after a dose of IV Vincristine and a lumbar puncture with methotrexate under sedation; I was exhausted, but Tanner was raring to go. She went to her best friend Corinne’s house for her family birthday celebration. They ate tacos and ice cream cake and PLAYED. Tanner was indescribably happy. The playdate drought is over, at least for now.

All of Tanner’s counts were great. She had a normal hemoglobin level and her platelets were actually very high. We haven’t seen numbers that high in a while. She started a five-day steroid pulse and oral chemo tonight, though, so the high counts probably won’t last. We will go back to clinic in two weeks (yes, the first time in more than 6 months we haven’t had to go for a weekly clinic visit) to check her counts and adjust her chemo, if necessary. This begins the game of trying to find just the right amount of 6MP and oral methotrexate to keep her counts steadily between 1,000 and 2,000 for Long Term Maintenance.

It felt weird to let her go to Corinne’s house… like she was naked and unprotected. We’ve gotten used to being so careful. It will be so nice to be able to get out and see a movie or even go to the mall at an off time (is there an off-time at the mall during this season?). We are still going to be cautious, though. The last thing we want is to be in the hospital for Christmas.

After an unsteady start, this week has become a good one with lots of things to celebrate. First, there was Santa. Now good counts and some much needed freedom. And, lastly, we have a contract on a house that we are so excited about.

If you’ve been reading Tanner Time all along, you might remember that we had a contract on a house in Brentwood when Tanner was diagnosed in June. The owners were kind enough to let us out of the contract due to the circumstances. Stability was key… and still is, frankly. But, we have a tiny postage stamp of a yard now and have really felt it on the many days when we couldn’t go out to the nearby cul-de-sac and school fields to play because we were afraid to run into other kids. We have been searching for a house with room to romp and found the perfect house with lots of yard and a basement (Tanner loves this) that is on a cul-de-sac. It will mean a lot in days to come to have so much space when we can’t get out.

The house is not in our school district, but Moore Elementary, where Tanner goes, has been kind enough to let her attend the remainder of this year and next year so Tanner can finish treatment before we switch schools. The new neighborhood is just down the road from where we live now, so we will still be close to our Moore’s Landing friends. All these factors were extremely important to us. I think it will be hard when Tanner returns to school. She is a pretty confident kid, but being bald and pale and having a disease other kids can’t even pronounce will test even the strongest self-esteem. She worries about being “different” and is scared other kids will make fun of her. The kids at Moore know about her and have been so supportive and loving. She feels safe there and we are grateful they have understood our situation enough to allow us to do this without making her switch schools immediately.

Tonight, as Tanner went to sleep, she asked me for something good to think about to keep the bad dreams away. I wasn’t stumped this time. I rattled off a whole bunch of things including playdates, our new house, the new dog we’ll get when we get there, going to see Princess and the Frog next week, decorating our Christmas tree, etc., etc., etc.

It’s good to be back.

Love,
Beth

Bye, Bye DI !!!

November 18, 2009

IMG_1286It’s here. Tomorrow is the last day of DI… the last day of the most intensive part of leukemia treatment… the last day before we enter LTM (Long Term Maintenance)… a day we have been working towards for six long, grueling months. I can’t believe it’s here.

We’re celebrating. I made t-shirts for Jake, John, Tanner and I and we are going to wear them to clinic tomorrow. I think we are also going to pass out something to the staff – I’m not sure what yet – maybe donuts? — to thank them for making this journey with us and for, literally, being our saviors.

John is picking up a cake on the way home from work tomorrow so we can celebrate with a special dinner. Depending on how her counts turn out tomorrow, we may invite some friends, but it’s not likely; we expect her counts to be low.

So, here’s how our friends and family can celebrate with us. Send a comment to Tanner congratulating her on the last day of DI. I want her to open up Tanner Time and Friends of Tanner and see how many people love her and realize what a big accomplishment this is.

We’ve really been celebrating all week. We’ve been visiting playgrounds and stopping by church to drop something off and getting to see the whole church staff (aka wonderful friends) and giving them hugs. Tanner got to spend the day with Aunt Beth today at her house (I think it must have magical properties the way our kids plead to go there) while Jake and I played some mean wii Star Wars. We’ve just been finding ways to remember how great it is to feel good and have the energy to have fun.

Yesterday was a great day. In fact, it was a ROGER DAY!!! Roger Day is a children’s recording artist who is big time at our house and he was so nice to stop by and bring Tanner his newest CD, Brain Freeze. It’s AWESOME!!! If you’ve been following our story long enough, you might remember that Roger came to our house back in July to have a small concert for a handful of kids and we had the best time. He is a great entertainer and a great person and he made my kids’ day.

Tanner and I in our new hats

Tanner and I in our new hats

We had another visitor yesterday as well. My friend Pat dropped by with hats and chicken noodle soup… the perfect combo. She had seen this adorable pink fuzzy hat for Tanner and brought it for Tanner and a hat for me, John and Jake, too. What a nice surprise. When she left we noticed a little gift bag on the front porch that contained an envelope full of cards from a 1st grade class at Tanner’s school. There were pictures of each child on the card and Tanner loved reading them and remembering all her school friends. Then, John came home with two new wii games sent by a long-distance friend who has recently relapsed with lymphoma. Mind boggling to think they thought of us when they have so much on their own plates.

It’s a lovely world where hats, chicken noodle soup and Roger Day all show up on the same day. Help us celebrating a life worth living tomorrow.

Love,
Beth

Big, Exciting News!!!

One, happy little girl

One, happy little girl

September 12, 2009 Two HUGE things have happened to us in the last few days. One is that Tanner got to have a salad. I know, this doesn’t seem like a huge thing… especially for a six-year-old… but I had promised Tanner that the next time her counts were high, I would thoroughly wash some lettuce and make her a salad. She was in salad and crouton heaven.

The other is that we won 6 tickets to the Taylor Swift concert tonight from the Leukemia and Lymphoma Society and the clinic said Tanner could go!!!! We raised the second highest amount of money for Tanner’s Light the Night team during a one week period and will sit in a suite with the other two winning teams. Tanner is SOOOOOOO excited!

When I first got the call about the tickets from Robin Embry, who is coordinating Tanner’s team, I thought, “Oh no, here is another cruel irony. We raise all this money in Tanner’s name and then she can’t go to the concert. There‘s no way we can sit in the midst of all those people, even if we are in a suite.” All afternoon Thursday, I was just sick about it. It just seemed so unfair. That night, I had Bunco at my house and was telling the girls about it. Celia Whitler, who is the host of Tanner Time, said she might have a connection to help us find the most germ-free environment to watch the show from and to call her husband Ron in the morning and see what they could do. Maybe we find the best place to sit. I began to think maybe we could make it happen.

The next morning, I was at it with a vengeance. I decided to chase this thing down until I hit a total dead end. I called the Leukemia and Lymphoma Society and talked with them and with my friend Ron. Everyone was trying to find a solution… was there an empty suite somewhere? Could she wear a mask and sit in the corner? Finally, later in the afternoon, I called the clinic at Vanderbilt to see what they would say about it. The nurse looked up Tanner’s chart and said, “Her counts are so high, I don’t see any reason she can’t go, and she doesn’t need a mask; it would just ruin it for her.”

Oh my Gosh!!!! Finally, a break! A providential aligning of the stars that combined high counts and an awesome opportunity to celebrate life! I called everyone that had been working on the problem with us to let them know we had success. I called two girlfriends of Tanner’s and invited them and their Mom’s to join us.

Last night, we pulled up some YouTube video of Taylor Swift in concert and said, “Wow, she puts on a cool concert; wouldn’t it be cool to go to that tomorrow night?” Tanner looked confused. “Wouldn’t it be cool to go to that with Leah and Gracie and their Mom’s tomorrow night?” “Are we?” she said, wide-eyed. “How?” After we explained it, she screamed in the way that only a six-year-old girl can, and we all did a happy dance.

This morning, Melissa from the Leukemia and Lymphoma Society came by and delivered the tickets. We are so excited! Tanner has never been to a concert before and she LOVES Taylor Swift and Kelly Pickler, who is opening for Taylor. She’ll have to take a big nap this afternoon, since the concert doesn’t even start until her bedtime and I doubt we’ll make it for the whole thing, but it will still be an awesome experience. After having to miss so many things over the past few months, this is a welcome opportunity to do something special and forget about her limitations for once.

Thanks to all who have donated to Team Tanner; not only have you helped fund research for the cure of blood cancers, but you have helped create a very special night for our little girl. Thanks also to the Leukemia and Lymphoma Society for the tickets and for being so gung-ho about helping Tanner be able to go. And, thanks to Franklin American Mortgage company, John’s employer, for making a call to the Sommet Center so we can park in the Arena Garage and avoid entering the building with all the crowds of people, which might be dangerous for Tanner.

People are so kind to rally around one little girl to make a special dream come true. And, good things… no wonderful things… can happen in the midst of great adversity.

Thanks, God. I owe you one.

Love,
Beth

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.

Love,
Beth

2 days and counting!

Great news! One less day of steroids than we thought, so tomorrow is our last day!!! You have no idea what this will mean to us. Tanner is really not sleeping at all at night anymore. Maybe 1 hour at a time, which means everyone at the Page house is very tired, including her. She is able to nap some during the day, but not for long periods of time, so I think she is chronically tired. Add to that the strain of the incredible amount of water retention this has caused, the stomach cramps and mood swings and we are ready, ready, ready for these to go! Believe it or not, my skinny little Tanner has huge cheeks, like she has mumps, and has a giant, distended belly. Those of you who have been pregnant before can attest to the fact that this is not a comfortable predicament.

Tuesday also marks the last day of Induction, our first phase of treatment. It is a milestone, but also a hard day at clinic. A bone marrow biopsy, spinal tap with chemo injection into the spinal fluid, and an injection of vincristine (another chemo drug) into her port. She’ll be sedated for all of this, which is good, but means she can’t eat past midnight the night before… uh-oh. You do NOT want to be at our house tomorrow night.

Had a great day yesterday. We continue to be able to creep more normalcy into our lives. Tanner invited her friend over for a slumbover. That’s where you do all the stuff for a sleepover — pajamas, bath, dinner, playing and watching a movie — but then go home when it is bedtime. Tanner lasted for about and hour and a half, but that hour and a half was so normal. They played upstairs in the playroom on the Smartcycle (thanks Will!), dressed in identical nightgowns, ate tacos and watched “Princess Protection Program.” It seemed just like it always was and John and I were grateful to see Tanner interested in playing. Hopefully, when the steroids wear off, we’ll see even more interest in normal things.

We continue to be really worried about Tanner’s legs, especially her right leg. She has started falling some; that right legs just buckles beneath her. We’re going to push for physical therapy this week.

John and I had some normalcy this week as well. I went our with my good friend Celia for a movie Friday night. Just some good girl time. And, Aunt Kim came over last night so John and I could go out for a walk together by ourselves. Got home early so we could get in bed. It was John’s night to stay with Tanner and she didn’t sleep much. My turn tonight…

Count down the last two days of steroids with us. Just 3 more doses! Yay!

Love,
Beth

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.

Love,
Beth

We’re Home

Well, we’re home! Came home yesterday afternoon. Tanner was in the worst mood all morning at the hospital, but as soon as we got into the wheel chair to go home, she became her normal self again. Hugged the nurses and thanked them for taking such good care of her, played with her new iTouch in the car on the way home and had a tear-inspiring homecoming reunion with Jake. I thought, “This is going to be so much better than I thought. She’s going to be just fine.

Then, she got tired and took a nap. And woke up screaming, in pain, cranky, etc. My heart sank. The rest of the day was a battle. It’s so hard to know what to do. The physical therapist and doctor say she needs to get up and walk so she doesn’t lose her strength, but she feels so bad. Convincing a 5-year-old to do something they don’t want to do because it is for their own good is futile. So, we feel a little lost. Think I will call a friend whose child has leukemia and see how she coped. Maybe you just grit your teeth and barrel through until the end of this awful steroid course (another 25 LONG days) and hope she is more reasonable after that. She will still take steroids for 5 days a month in the next phase, but not every day like this. These steroids seem to magnify the kids’ worst traits until they act that way all the time. It’s great fun!

One good effect of the steroids is the increase in appetite, but we haven’t come to that yet. She still doesn’t seem to want to eat but one meal a day. I just can’t bear the thought of her losing any more weight. Today, we finally managed to entice her with the idea of a bagel with strawberry cream cheese from Panera. So, off John, his mom and Jake go to Panera to bring it back before she loses her appetite again. Once those steroids start making her ravenous, I’m going to let her eat like a banshee — fatten her up for the next phase.

But, still, it’s nice to be home. No one woke us in the middle of the night to take her vitals, flush her IV or stop the infusion machine from beeping. What a blessing. She was still up quite a bit with pain and nausea, but rested better for sure.

One note: we are flush with gifts for Tanner. People have been so generous. Some she just hasn’t even felt good enough to open. So, again, if you want to do something send a donation in Tanner’s honor to www.lilysgarden.com. Knowing that we might be able to help save some other family from this horror is the best gift we can get.

Love,
Beth

Great News!!!

I just received a text message from Tanner’s dad that she is home!!!! She is much happier there. Until further notice that are not accepting visitors. She needs to rest and since her white blood cells are the primary target of the chemo, her immune system is being weakened. Great news indeed!

Going Home?

Unbelievably, we may be going home Saturday!!! Hurray! She is doing so well they see no reason to keep her. We will have to return Tuesday for a spinal tap and chemo injection into the spinal fluid, a bone marrow biopsy and her IV chemo (sounds like a day of fun, huh), but we can be at home until then. This will be so good for all of us. Tanner is a social butterfly, as you know, and does not do well in the hospital. She is depressed and the steroids are exacerbating that so she is insufferable right now. Getting home, being around Jake-the-miracle-cure, and not being hooked to that annoying IV pole will do wonders for her. So, please don’t send any gifts to the hospital — we probably won’t be there. And, please let us figure out what she is going to be capable of before you come visit. Call first, because she may not be able to see anyone. We’ll get some guidelines at the hospital tomorrow and just see how she adjusts.

I can’t wait to get her home and for us all not to be living in that “sick” environment, and to be able to see Jake — he’s been such a trooper being transferred from friend to Grandmother to other Grandmother.

Keep your fingers crossed nothing changes to keep us from going home.

Beth