Taking it Back

December 9, 2009

We’re working fast and furious to pick materials so we can hit the ground running on our new house renovations when we close next week. Buying this house has been a really great thing for all of us. It feels like we’re getting back something the cancer took from us back in June when Tanner was diagnosed. We may have lost the house we had a contract on back then, but we have found another that suits our needs even better and lets Tanner stay in her school as long as we want.

It’s also given us something to look forward to. Something we know is not going to be taken from us, or fall through because of low counts or because someone got sick and we couldn’t be around them. There are so few things I allow Tanner to look forward to these days – it’s just too painful for her to be disappointed again and again. Usually, we don’t tell her about something fun we’re going to do until right before we do it; that’s when we know its really happening. But, this house is a pretty sure thing and we are all happy to be dreaming about something that has nothing to do with cancer.

Tanner is feeling pretty good, considering the steroids. She goes in spurts where she seems to feel pretty good to times when she just doesn’t feel like doing anything but lie down. The past two days, I’ve seen the side effects from the Vincristine creeping in as well. Yesterday, her mouth started burning whenever she ate or drank anything. This morning, her jaw started aching and tonight, her upper leg is hurting so badly she is lying in bed right now, waiting until I can give her the next dose of painkiller in 20 minutes. I expect in the next day or two to see the awkwardness and difficulty running and climbing stairs to return. These side effects are like old acquaintances you wish would stay in your past – familiar, but not good for you. The treatment for this disease is cruel, even while giving us hope.

She finished her five-day pulse of steroids this morning; hopefully, she’ll start feeling better soon. By next week, we’ll start having to be a little more careful about getting out since the oral chemo she has been taking daily should start affecting her counts by then. But, tomorrow we are taking advantage of our freedom and having a girl’s day while Jake is at school. We are going to Panera after we drop him off to have her schoolwork time in a booth over bagels. Then, home to make a gingerbread house without little brother stealing all the candy.

I really hope Jake can continue going to school this month. He had such a good time on Tuesday and his Christmas program is coming up next week. We’ve been practicing Jingle Bells and he’s got it down cold so I hope he gets to have his moment to shine.

It feels like we are taking back our lives, little by little.

Love,
BethIMG_1307

When Dinner Out Becomes a Celebration

December 7, 2009

It has been more than six months since Tanner has eaten in a restaurant. We have eaten outside on the patio of Jonathan’s twice, but never inside. Today, she wanted to go to Opry Mills mall and eat at the Aquarium restaurant. It has a huge fish tank in the middle and a diver often swims around and feeds the fish.

It was a great idea, because they both needed new shoes and I was so sick of bringing home shoes for them to try on and then having to take them back because they didn’t fit.

Tanner and Jake dancing on the stage at Opry Mills

Tanner and Jake dancing on the stage at Opry Mills

So, although it felt odd to be able to say yes to something involving a public place, I gathered us up and off we went. We had the best time. It felt so amazing to be out in public with both kids… so normal… only now it doesn’t feel normal. It was pretty empty when we first got there and they were able to run around as much as they wanted. They seated us in a booth off by ourselves at the restaurant and the kids had a really good time looking at the fish. Jake especially loved it; he was fascinated, especially when the diver appeared. Poor Tanner got really hungry waiting for the food to come (did I mention it is steroid week?) and was actually crying by the time it got there. Steroid hunger is not to be underestimated. She shoveled the food in like a ravenous wolf despite the fact that it had just come out of the fryer. I asked her if it was burning her mouth and she said, “Yes,” between bites, but never slowed down.

We even had ice cream sundaes for dessert. Why not?
photo_2
Despite the fact that she wasn’t feeling very good, she still wanted to get shoes and pajamas. It felt so weird to be in a store with other people. I kept having to choke down panic and remind myself to just soak it in. Even Tanner seemed a little anxious a couple of times and said once, “Is it okay that there are people around?” I assured her that we were fine, but that we needed to get out of the mall before it got too crowded.

Shark Boy and Lava Girl?

Shark Boy and Lava Girl?

She fell asleep in the car and napped when we got home then had a lesson with her teacher, Mrs. O’Hara. After dinner, we had planned to decorate the tree together. She was very excited and kept asking when John would be home so we could get started. But, by about 10-15 minutes into decorating, the steroids got the best of her and she begged me to take her to bed. Sad for her to not have enjoyed something she usually loves so much.

Jake, on the other hand, enjoyed himself immensely. He was an ornament hanging fool. True, he usually hung about six ornaments on the same limb, but he was very enthusiastic. He sang Jingle Bells as he went and was so cute.

Overall, despite the steroids, it was a great day. I wish John had been able to be with us at the restaurant so we could all have been out together. The steroids definitely impact her and all of us, but we’re trying to power through and not let them stop us from enjoying this freedom while it lasts. We have no way of knowing whether the 100% dosing of the oral chemos she is taking is the right dose for her until we go back to clinic in a couple of weeks and see how it affects her counts. If they are down, we’ll go back to being secluded until they come back up. The doctor tells us that it usually takes 2-3 months to get the dosages adjusted to keep her counts between 1,000 and 2,000. At that point, we will gain a lot more freedom; she should be able to go back to school and rejoin life.

By tomorrow, I suspect the steroids will take most of the day from her. Jake is going to school for the first time in a month. Tanner and I will probably lay around a watch movies and do our toenails. That’s probably as much as she will feel like doing. Sounds good to me; I’m tired!

Love,
Beth

A Weekend Out

December 6, 2009

Everyone got out this weekend. John and I even got out twice without the kids! And, Tanner got to go to Target; the first time we’ve been to a store in months.

Saturday, our good friends Keith and Leslie came to babysit the kids while John and I went hardwood floor and carpet shopping and had lunch out together. They had a ball and by the time we came home, Jake was in his bed napping and Tanner was on the sofa with her feet in Leslie’s lap napping in front of the TV. That means they had a really good time! Poor Tanner didn’t feel good for most of the rest of the afternoon, though. The steroids have taken effect. She’s a little difficult to reason with and pretty emotional. She is also tired; she started asking to go to bed last night at 5:45 and was asleep before 6:30 without even eating dinner.

She had a playdate with Corinne today at our house… such a treat to play with other kids. Then, my best friend Kim came over to babysit so John and I could finish up some Christmas shopping. Tanner didn’t feel good before we left and cried for me to not go. But, Aunt Kim, always prepared, brought Christmas cookies to decorate and they had a really good time.

It’s a shame that as soon as she has gotten some freedom back, she had to start a five-day pulse of steroids. Poor thing, I put the Christmas decorations up today, and we usually all go outside to look at them and ooh and ahh when I am finished. Tanner didn’t even want to get out of the chair where she was watching TV under a blanket. She said, “No thank you” and rolled over to the TV again. Just blah. She just has 3 more days of the steroids, though, so hopefully it won’t get too bad.

Hope you all had a nice weekend and are feeling the magic of the season.

Love,
Beth

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

Christmas Has Arrived!

December 2, 2009

I’ve been having a hard time getting in the Christmas spirit. Our tree is up, but is not decorated. We still have pumpkins on the front porch. I haven’t bought even the first Christmas present.

But today, Christmas came to us. My friend, Pat, had sent me an email several days ago saying a surprise would be delivered to us one morning this week. This morning, I got a call from a man saying he had a special delivery and would be to our house shortly. I told Tanner there was a surprise on the way and she and Jake were glued to the front windows asking me every 2 minutes when the surprise would be there.

Within 10 minutes, a black pick-up truck pulled up to the house with a special driver… Santa Claus was behind the wheel!

I yelled to Tanner, “It’s Santa in the truck!” Tanner and Jake began screaming and we opened the door to watch him as he came up the walk in the drizzle and brought us our sopping newspaper out of the yard. I think I was every bit as excited as the kids.

We invited Santa in and he hugged Tanner and then picked her up and carried her to the couch where they began talking about what she wanted for Christmas. Jake was a little leary at first, but warmed up pretty quickly and I was able to take pictures of them both on Santa’s lap after Jake told him he wanted a motorcycle and Tanner told him she wanted an American Girl doll.

IMG_1310We spent about 10 or 15 minutes with Santa before he had to go tend to important seasonal business. He hugged Jake and Tanner and told him he loved them. Then, he turned and hugged me. I felt the Santa magic… really. As we embraced, I whispered in his ear, “You have no idea what this means to us. I never dreamed we would be able to take this picture or that she would be able to sit on your lap this year.” Santa pulled back and held me by the shoulders and said, “That’s why I came; because I knew you couldn’t come to me.”

I cried, of course. And, Tanner got embarrassed and told me to go away if I was going to cry! We stood on the porch waving and yelling, “Merry Christmas, Santa!” as he drove away.

Just days before, Tanner had asked me when we were going to sit on Santa’s lap. I hesitated, trying to find a gentle way to prepare her for the fact that we probably weren’t going to get to sit on Santa’s lap due to the crowds. I started by saying, “We’ll have to ask Dr. Mixan about that,” but I didn’t have to finish. She already knew. She paused a moment and then said, “I have an idea, Mom. You take Jake to sit on Santa’s lap and he can give Santa my list.” She wasn’t overly upset about it; and that’s what broke my heart. She didn’t even expect to be able to sit on Santa’s lap this year. It was like she knew already that this kind of thing just wasn’t going to happen for her.

IMG_1308I don’t have to open any of my presents this Christmas to know that this will be my favorite Christmas gift. Christmas came to our house. Not on a snowy night in a sled pulled by reindeer, but in a black pick-up truck in the rain.

I could assume that my friend Pat told Santa we needed a personal visit this year. But, I prefer to think that Santa already knew and just asked Pat to call us to let us know he was coming. Either way, it was magic.

Love,
Beth

Clinic Day #22, the Last Day of DI !!!

November 18, 2009

photoWhat a day! We celebrated extra large thanks to the kindness of so many people. We started by going to clinic in our Bye, Bye DI !!! t-shirts. The nurses and doctors loved it. We busted into the clinic in full celebration mode and it was great to start the celebration among our cancer compatriots. Everyone in clinic congratulated us and it was actually really fun to go today – lots of hugs all around.

Tanner’s counts, as expected, were very low all around. Her neutraphils (big infection fighting white cells) were at 380 (to give you an idea of how low this is, I had some blood work done last week and mine were at 6,000) so her immune system is every bit as compromised as we suspected it might be and we are very glad we’ve kept to ourselves lately. What we were surprised by, however, was her low hemoglobin level at 7.2. This is the lowest that Tanner’s level has been since diagnosis. I told the doctor before we got counts that there was no way she needed a transfusion because her energy level was crazy. With a hemoglobin level of 7.2, she should have gotten a transfusion, but because she hasn’t been showing symptoms, we decided to wait and see if she recovers on her own or if she starts showing fatigue, blueness or shortness of breath.

I didn’t even notice how low her platelet level was until we got home and she had a little place on her head where she scratched herself. It was bleeding just a little and I put some Neosporin on it. Fifteen minutes later, I noticed it was still bleeding and I thought, “Uh oh.” I checked her platelet level and sure enough she had gone from more than 300 last week to only 58 this week. Yikes! A bandaid solved the problem, but it’s a little weird.

It remains to be seen whether her counts have bottomed out or whether they will come down yet some more. We go back in on Wednesday for counts to see if we can celebrate Thanksgiving with John’s family or if we need to stick to ourselves at home.

This afternoon, we had a surprise visit from Tanner’s friend, Lily, and her mom, Larisa. Lily is 8-years-old and, like Tanner, has ALL. They brought a video and a congratulations card; they know what a milestone it is to get to this point.

Tanner and I sat at the kitchen table and read post after post from Friends of Tanner and Tanner Time. She was so happy to hear from you all. In a way, I think it was the first time she began to understand that this day was a big deal.

IMG_1291After some crazy dancing to our new Roger Day CD, we heard Daddy come home. He brought pizza and a cake and we sat around the table eating pizza and laughing about our day. Then, John got a text message that said, “special delivery on the front porch.” OH MY GOSH!!! It was a party in a box! It was a huge box, decorated on the outside with a huge balloon bouquet, a beautiful flower arrangement, cards, party hats and blowers, a party mix CD, and best of all, a piñata!!! It was from two families who have been such rocks for us. These are the girls who just show up when you need them and who are so thoughtful I know I will never be able to repay them.

So, then the party was on! We ate cake and whacked the heck out of the piñata and let them eat candy after just having huge pieces of chocolate cake. It was a day without description. A day that cancer could not take from us. A day we lived without regard to what comes next. The perfect day.

Thank you all so much. You made a little girl and her family very happy today.

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

The Struggle

November 16, 2009 We continued our quest for uncrowded playgrounds today… neighborhood playgrounds are almost never occupied, just in case you ever need to isolate your kid who still feels good enough to play! Today we went to Liberty Downs playground in Brentwood. We had a contract on a house in that neighborhood when Tanner was diagnosed, which we let go, of course. It’s one of my favorite neighborhoods, though. The whole thing feels like a beautiful park.

They have a nice playground next to a beautiful lake and a little stage where they hold neighborhood events. There is lots of space for running and some beautiful trees, so it’s one of our favorite spots. Today, though, it almost proved too much for Tanner.

To get there, you have to park at the top of a hill and go down the grassy slope to the lake and then down another steep hill to the playground. As soon as we got out of the car, Tanner cried out in pain – her left leg. She wanted me to carry her, but I encouraged her to walk, hoping it might work itself out. It was most likely nerve pain, combined with some pretty marked muscle loss from the most recent steroid bout. She limped down the hill with a grimace on her face, but seemed to be moving a little better at the bottom. She began running, which is once again a real struggle for her. She can do it; it just looks very awkward and like she is running against a current that keeps her from getting anywhere very fast. Her legs don’t seem to really cooperate with the will behind them and her head jerks and bobs with the effort of trying to get her body to do this simple thing that she would like to take for granted.

She fell twice while trying to kick the soccer ball. I had to lift her up into and out of a low fork in a tree she would have scaled easily before the leukemia. She struggled mightily, and with typical Tanner resolve, to get up the “rock wall” on the playground that Jake climbed up in seconds. She fell again, dancing on the stage and scraped her ankle. And, finally, when we left, she had the two big hills to face in order to get back to the car.

Normally, I would have given her a piggy back. I’m all for using play as therapy, but she was beat from an hour of hard play and it’s about 125 yards, mostly uphill. But, I had two soccer balls and some coats to carry. So, I put my hand under her upper arm to help support some of her weight up the first hill. She worked so hard. At the top, she stopped, hands on her knees, to rest. She looked back at the hill, panting, and said, “Corinne could just run right up that hill.”

Corinne is Tanner’s best friend and Tanner is right; she could have run right up. She is strong and athletic and full of energy. While I would pit Tanner’s energy against almost any kid, her physical strength has waned to the point that I wonder whether she will ever fully recover from the damage the drugs and the steroids are doing. Her upper legs are so thin, she looks like one of those starving kids in Africa; there’s no muscle there.

She has never fully gained her physical strength back after the first round of steroids back in June. She gained a lot back, mind you, and surprised me with what she was able to do. But, it was never normal. Now, this second round, combined with the 10-day stint in the hospital, has put her almost right back where she was before. I worry what the five-days-a-month of steroids that she will take for the next year and 10 months of Long Term Maintenance will do to her. Theoretically, she has the rest of her childhood to get strong again, but I still wonder what 2 ½ years of not being able to use her body to it’s fullest will do long-term. Not to mention the possibility that the long-term steroid use can cause avascular necrosis, or bone death, which can have a permanent debilitating effect (one of our leukemia friends is dealing with this now).

It’s scary and seems unfair, but I try to remember this: someone (I don’t remember who) told me that they knew someone who had leukemia when they were young and that it was a miracle this person survived at all, because leukemia at that time was a “death sentence.” It’s true. Even just 10 years ago, Tanner’s chances of beating this would have been notably different.

So, I try to ask myself, “If a doctor came to me when Tanner was diagnosed and said, ‘She will die within a month without treatment, but the treatment is very tough and can have some lasting side effects,’ what would we choose?” Of course, we would choose the opportunity for life. If it means she’ll never be a super athlete, it’s still better than the alternative, right?

I’m trying to learn to be more grateful for the treatment. For the chemo, the steroids, the plethora of medicine. It’s so easy to despise, but really, it’s a lifesaver… literally.

Love,
Beth

A Nice Weekend

Just a quick post to say we had a nice, normal, relaxing weekend. Aside from some occasional nausea, Tanner continues to feel really good even though she has been taking IV chemo for the past four days and continues her daily oral chemo through Thursday.

Thursday is her last day of chemo for Delayed Intensification! John and I cannot believe it. We’re going to have a little Bye, Bye DI party for her (just us, of course, since her counts will likely be very low) with a cake, etc. It is a huge landmark in this journey and one that marks the end of the really rigorous portion of leukemia treatment. We feel so lucky to have made it this far with so few delays. This portion of treatment is supposed to last 6-9 months and Tanner has made it in 6 months so we feel really fortunate.

We played at the playground (see Tanner’s post earlier today) this morning and met some other kids. Tanner asked initially for her hat to cover her head, but got busy playing and handed it to John to hold. She was hanging on a little bar that glided across a fixed crossbeam, a zip-line of sorts, with two other kids and having a great time. It was a little nerve-wracking since her port was accessed, but she made it very clear I was not to tell her to be careful in front of her new friends! Those kids never asked about Tanner’s hair. In fact, at one point, she asked them if they knew why she didn’t have any hair and the boy said, “You have cancer,” and that was the end of that. I love kids… they’re so accepting.

Great weekend, looking forward to an uneventful week. We’ll be pretty isolated since we have to assume her counts are really low, but we’ve been enjoying this good weather and taking advantage of it.

We’re lucky, all things considered, to have arrived at this point without any more difficulty than we have had.

Love,
Beth