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

Another Battle Lost

November 24, 2009

I am crying as I write this, crying for yet another child who has lost his life to cancer. I did not know him, but every time I hear about cancer taking a child so early, I can’t help but cry out of sadness for the child and his or her parents… and out of fear for my child. There are no words to describe the terror.

My Mom emailed me last week about a little 5-year-old boy she heard about who was losing his battle to neuroblastoma. He loved Christmas and his family was celebrating Christmas early while he was able. They put out a request on their blog that people send Christmas cards to him.

Yesterday, I told Tanner about Noah. I didn’t tell her he was dying, but that his family was trying to do something special for him, just like people do special things for her when she is having a hard time. She eagerly agreed to make a card for him and got right to work. She drew a Christmas ornament and wrote inside it, “Merry Christmas. Hi, my name is Tanner. I am six-years-old and I have cancer just like you. Love, Tanner.”

IMG_1303This morning when I woke up, she had gathered a small stuffed fox, a pumpkin eraser and a little fuzzy ball and put those items, along with the card, inside a large zip lock bag. Thirty minutes ago, I put the bag inside an envelope and addressed it to Noah, added stamps and dropped it into the mailbox. When I came in, out of curiosity, I decided to look him up on Caring Bridge to see if he had a site. He did not, but I googled him and found a host of new stories documenting how his family’s request for cards had gone viral and more than 1 million cards and gifts had come to their home. But, the family was asking people to please stop because they had celebrated Christmas on Nov. 8 and Noah had passed away… yesterday.

I can’t stop crying thinking how I now have to hide away the card and little gifts Tanner collected… little childhood treasures put together from the innocence of her heart… so I don’t have to explain to her that he died before he could receive them.

Noah Biorkmann received more than 1 million Christmas cards before he died yesterday

Noah Biorkmann received more than 1 million Christmas cards before he died yesterday

This disease is vile and heartless. It steals childhoods from innocent children and beautiful children from loving parents. It breaks my heart every day and I am sick of it.

Beth