The countdown is on!

10…9…8…   I didn’t get to witness the Orion spacecraft countdown, but I’m sure it was exciting because they pretty much all are.  At the end, you know something big is going to happen.  7….6….  Six, that is where Delaney is at right now on her own countdown.  We just got the word last week, God willing and if all goes well, she is down to only six more months of treatment!  Her official last day of treatment will be May 5th, 2015 talk about a good reason for a fiesta!

As for her part, Delaney has been doing great.  We had a fantastic Thanksgiving and she was as spunky as ever.  We put the bird in the oven and then went out and played some family 3 on 3 football.  Even her non-tomboy sisters got out there and played.  When they tired of that, we switched to soccer and played that until the bird was gobbling for us to eat it.  We went inside, gave thanks, stuffed ourselves, played games, watched football, took a nap, stuffed ourselves again, and then played more games.  It was the perfect day!

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The fun continued all weekend.  A very nice parent at Delaney’s school who owns 3 Ring Photography offered to shoot some family photos for us.  We happened to all get the case of the giggles so it turned out to be a very silly fun-filled hour.  We also managed to sneak in a movie and an art exhibit at the Denver Botanical Gardens before having to send Delaney’s oldest sister back to college on Sunday morning.

That afternoon, a fellow leukemia survivor invited Delaney and our family to come take a tour of the Denver Fire Department’s station 27.  Russell and his wife Katie were at the Leukemia & Lymphoma’s Light the Night Walk and heard that Delaney wanted to be a firefighter.  It turned out, Russell is an older, male version of Delaney.

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Not only does he have his own battle with leukemia, but he is a firefighter who loves legos!  Russell, and all of the firefighters on duty that day, made Delaney an honorary firefighter.  Along with her sisters, Delaney got to go up

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(and I mean wayyyyyy up) in the bucket on top of the firetruck.

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We got to hang out in the firehouse and eat lunch with the entire firehouse.  Delaney got to try out all the cool gadgets, put on the uniform, and even fire the hose.   She was in heaven!

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After the weekend highs, Monday came along and brought her chemo treatment and steroids with it.  It was another rough week.  She was home sick all week and still wasn’t really feeling well as of last night.  She did rally on Friday for the Make A Wish event at Children’s Hospital where the kids get to pick out gifts for their loved ones from Santa’s workshop.  It basically took it all out of her by the end so she didn’t get to meet the Denver Bronco cheerleaders were there, but a couple of them were nice enough to send her a personalized message.

While we excitedly start the countdown, that is pretty much our routine right now.  We hope to have three good weeks of non-steroid happy and healthy Delaney (even though she is still taking her oral chemo daily), and then one week when she gets more chemo injected into her port and has to take steroids for the week.  She goes from a feisty energetic kid for three weeks to getting her little bummie kicked for a week.  But… the week is almost over, and she only has six more months to go!!!

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Your Santa smells like beef and cheese!

Q.  How do you know you are visiting with Santa’s helper and not the real Santa?

A.  When you are a girl and Santa thinks you are a boy.

 

       That’s how Delaney knew anyway.  Santa took a break from the North Pole and visited my workplace last night.  I tried to loudly announce to him, “these are my DAUGHTERS Delaney and Ashley.”  Unfortunately, he still loudly said something to Ashley about her brother.  In his defense, Delaney was in all of her tomboy glory complete with a blue shirt, her patented emergency bow tie, and her ball cap.   If it bugged her, Delaney didn’t show it as we went from the jolly fat man to enjoying hot cocoa and cookies with her very own old man that happens to be jolly and fat. 

        Delaney has been feeling great lately.  She isn’t currently having to take steroids so that is a big help.  We are all falling into our nightly chemo routine.  She has to keep a two hour window where she can’t eat within two hours before or after taking the medicine.  If we can get her to be finished eating by 6, we are usually fine.  Any later than that, and  we have to wake up an angry bear just to force pills down her throat.  Besides that though, she is back in school and feeling good these days.

       Last weekend we got to tour the new Children’s Hospital where Delaney will get to finish her treatment over the next year and a half.  We went up to the blood cancers floor and saw a couple of familiar faces as her doctor and his medical assistant were at the desk putting tattoos on the kids.  After giving Delaney a tattoo on her hand, the medical assistant wanted to personally give us the tour.  She got to see all the cool stuff the new facility will offer (she’ll have her next chemo in her port on Christmas Eve at the old place, and then will begin going to the new place after that), and then we headed off the floor.  Before we left, we got the highlight of our day and got to take a picture (below) inside a giant snow globe.  Unfortunately, Delaney is eventually going to have plenty of unpleasant memories at the new hospital, it was nice that her first trip there was such a nice one.

        We Ho, Ho, HOpe you are all having a great holiday season and taking time to remember the reason for the season!

   

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Something different

      Although it was eight months ago, I still remember it like it was yesterday.  We were going over all the future phases of treatment with the doctor, and she warned us that “the last one, the maintenance phase, is a misnomer.  It sounds like it gets a lot easier, but it is just… different.”  Well now that Delaney is 1.5 weeks into this phase that will last a little over 1.5 years, we know what she meant by different.

        It’s different in a good way in that assuming her counts stay good, Delaney will go from weekly treatments in the clinic to monthly treatments. Different in a not so good way in that she is having to take chemo orally between treatments.  Depending on the day, she has to take anywhere from 1 to more than 10 pills a day.  Even worse than the chemo, the dreaded steroids are back.  I’m sure it isn’t the same for everyone, but steroids really do a number on Delaney.  She has to take them the first five days of the month and we definitely know when she is on them.  Yes, she eats everything in sight (she jokingly woke up her Mommy last week by gnawing on her arm), but it is more than that.  She gets these weird pains in her joints and also gets very emotional.  She just doesn’t feel well when she is on them.  As much as she loves going to school, she stayed home all last week while taking steroids.

       By the time the weekend came around, she was back to her normal studly self.  She played hoops with her team on Saturday and on Sunday, basically turned into Rocky Balboa.  It was a beautiful Colorado day, so after church we headed up to Red Rocks Amphitheater where we met some friends for a family workout.   If you aren’t familiar with Red Rocks it has 69 rows of benches and exactly a gajillion steps.  We jogged the steps, sprinted the rows, hopped with one foot of steps, then the other, then with both feet,did jumping jacks, push-ups, sit-ups, pull-ups, and then fell on our face… wait… that was just me.  Delaney on the other hand would not be stopped or even slowed down. 

      My friend had us do what he called the “Tough Mudder Trainer” where we started down at stage level and had to climb 20 stone walls to the top of the amphitheater. All the walls were taller than Delaney so I was worried about her falling backwards onto the concrete while trying to climb them.  My fatherly instinct kicked in and I helped her up the wall each time just to make sure we didn’t end up spending the rest of our afternoon in the ER.  She made it all the way to the top then ran all the way down the stairs to the bottom.  When we were about an hour into the workout, Delaney yelled, “I’m going to do the Tough Mudder one again.”  Before I could stop her or even catch her she climbed the first wall all by herself.  And I thought there was no stopping her before that!  Without any assistance from her old man, she tore up the 2nd wall, then the 3rd, then the the 4th, and so on.  At the 17th wall her sister came over and said, “Dad, we’ve got to go!”  At that point Delaney looked back at me and said, “Okay, you can help me with the rest of them.”  All of this from a little 7 year old girl that not even 24 hours earlier had to take 8 pills of chemo.  Simply amazing!  Now that is something different!

      Delaney ended the weekend by running an errand with her mom.  They went to the mall and were surprised to find that Santa was there.  Even more different than Santa at a mall, was Santa at a mall with no line.  So, Delaney went and had a little chat with Santa.  I don’t know exactly what she said, but I’m including a pic of a letter she wrote to him last night.  Sorry for the double post for those of you on her facebook page, but her letter said, “Dear Santa thank you for all the gifts that you’ve given me. How can I pay you back? From Delaney.”  Because I have been slacking on her blog updates, I’m not only including a pic of that but also a couple of pics from tonight (one with another of her lego masterpieces and the other proudly displaying a post bath mohawk— look at all that hair!!!).

 

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