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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Love Hope Strength

Last night was probably the closest the Staffords will ever come to being rock stars. Before I share that story though, let me tell you that I now have concrete proof that some people actually read this thing. Inconceivable! What is this “proof” you ask? Well my wife got a message from a very awesome woman named Tonja, who remembered me mentioning that my family is a big fan of a certain movie. That movie, The Princess Bride, was being played at the world famous Red Rocks amphitheater last night and Tonja wanted to know if we wanted to be her VIP guests (Staffords VIP??? Inconceivable!!!). Tonja also happens to be a part of an awesome charity called Love Hope Strength, and she was going to be on stage for a few minutes before the movie started so she could educate the crowd of 20,000+ people on what the charity does. Just so YOU know, Love Hope Strength helps save lives by matching up patients who need a blood marrow donation with people that are a genetic match and are willing to donate. Now that you are all edumecated, lets fast forward to us being rock stars!
Tonja greeted us with two bracelets. “This one will get you in and this one will get you backstage.” Backstage??? Inconceivable!!! She escorted us through the guarded back entrance where we walked the same halls as U2, The Police, Rush, Dave Mathews Band, The Grateful Dead, and many others did before us. She then took us literally under the stage and we walked up this blocked stairway where all the artists who perform at Red Rocks are invited to sign their name. While the kids from The School of Rock jammed for the crowd above us, I snapped a couple of quick pics (Switchfoot, The Police, Widespread Panic). Before my family ditched me, I then followed Tonja to our VIP seats center stage five rows back.
The real highlight came later between the band and the movie when our entire family went on stage with Tonja. There was Delaney sporting her “swirly” mustache,mustache bow tie, and Peach’s Neet Feet shoes. Tonja encouraged the crowd to take 5 minutes and get on the donor list. She shared that last time Love Hope Strength did this at Red Rocks, SIX LIVES WERE SAVED just from matches from the Red Rocks crowd. She then told the crowd about the special little girl standing in front of them. She explained how she loves mustaches and asked the entire crowd to make a mustache with their finger. At that point Delaney got to look up at about 20,000 smiling mustached faces. How cool was that??? In fact, I would say it was Inconceivable!
The only thing cooler than that was when we exited the stage and the three of us in the family who are at least 18 years of age went and made sure that we got added to the list so we could also possibly help save lives. If you want more info, go to http://www.lovehopestrength.org If you don’t know why I keep repeating inconceivable, go do yourself a favor and rent The Princess Bride. If you already know, I’ll leave you with two things:
1. Is this family pic taken beneath the stage of Red Rocks.
2. You know those generic name tags that say, “Hello, my name is _____.” Well a guy in the crowd was wearing one but wrote in, ” Inigo Montoya, you killed my father, prepare to die!”

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