So, so close, but…

So last week we got the reminder that it isn’t over until the fat doctor sings.  Okay, Delaney’s doctor isn’t fat, but we were reminded to not take the finish line for granted.  On Tuesday we noticed her lips were getting white around the edges.  This isn’t uncommon as thanks to all of the steroids they have to take, thrush is pretty common in cancer kids.  Although it was painful for Delaney, we weren’t terribly concerned.  By Wednesday, her entire bottom lip was one giant painful blister.  We were concerned because this could be indicative of low counts.  Our fears were confirmed when we took her into clinic and they confirmed that her counts were barely above 500 (in comparison, ours are usually at about 2500).  That meant she was very susceptible to catching anything that might be going around.  It also meant that unless her counts improved, her very last chemo might have to be delayed.

Back to that not so fat doctor, we are very grateful for him and for his approach on treatment.  He wants his patients to live as normal of lives as possible.  He sometimes ignores the “book” and strict protocol that says when Delaney’s counts are low, a fever of even 100 degrees gets her admitted into the hospital because when her counts are so low, she can go south quickly.  Instead he goes by how she is feeling and believes that sometimes it is better for the patient to rest at home in their own bed, than to be stuck in the hospital.

We were grateful for this when Friday morning we had to take her in with a fever of over 102.  Her counts were still low and they thought she possibly now had pneumonia.  After giving her IV fluids, antibiotics and observing her for a while, they sent her home.  By that afternoon, we got the news that she also had the flu.  That night, her fever was 103.5 and I started wondering if she wouldn’t be better off at the hospital.  After over two years of battling, she was literally less than three weeks from being done, but apparently she wasn’t in the clear yet.  While she rested, we prayed.

The next day, she was a back to her silly self. When she jumped up on the couch and started singing, “I’ve got flunesia” while shaking her little bum, we just laughted and knew she would be okay. Two and a half weeks and counting baby!!!

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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!!!

The Night has definitely been Lit!

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My heart overflows with joy. I’m going to be honest and just let you know that whatever I write here cannot do tonight justice. We just got back from the Leukemia & Lymphoma Society’s Light the Night Walk. And… IT WAS AMAZING!
We arrived at the beautiful Wash Park early. If you aren’t in Denver, I should probably tell you that three days ago we had a fierce hail storm and it has rained cats and dogs the past two nights. In perfect contrast, tonight was a beautiful Fall night that was just cool enough to let you know that Summer is officially over. It was perfect and made me once again grateful to be living in beautiful Colorado.
We decided to grab some food before everything really got going. As we finished eating, more and more friends and supporters kept showing up. The crazy part is that we probably only saw half the people that made it to show their support. Between brief greetings and thank you’s, somehow it was already 6:45 which was the time we were to go to the stage. We got a brief line-up for the night, and then it was on!
The speakers included one of the top cancer doctors who shared some of the exciting advancements that are being made in medicine today. The message was clear: When we say, “Someday we’ll find a cure,” someday is today.
Before we knew it, the crowd was directed to watch the large screen where a video was to be shown. The video began with a shot of my wife, Delaney, and I saying, “Cancer Can Kiss My Stache!” and then being silly. Delaney’s story was told beautifully and was weaved in with another woman’s story and the advancements being made as a result of the supporters of the Leukemia and Society. When the video was over, we were called up on stage where they told the crowd of probably more than 2500 that Delaney wanted to be a firefighter when she grew up. Then they presented her with a firefighter helmet complete with a mustache on it. Delaney was in heaven.
The top fundraisers were recognized and then we literally proceeded to light the night. Almost everyone in the crowd had a lantern that was either gold, red, or white and they were all turned off. Starting with gold in honor of people who were walking in memory of somebody who lost their battle with a blood cancer, then all the folks who were carrying a red lantern to designate their support of somebody affected by a blood cancer, lit their lantern. Then Delaney was called up to lead the lighting of the white lanterns which designated the survivors. It was really cute as Delaney did the countdown with the morning anchor from channel 9 news, Corey Rose. (I know the video isn’t the best quality, but it kind of shows the magnitude of tonight’s event as you can see just how many people are lighting their gold, red and white lanterns.)

After leading the countdown, we rushed from the stage to the golf cart that was decorated in Bronco’s colors. They did another countdown to begin the walk, and we rode off to lead the crowds. Due to my phone dying, my favorite photo will have to remain a mental snapshot. It was of us being one one side of the lake and looking all the way across to the other side and seeing thousands of people showing their support while lighting up a trail that stretched over a mile all the way to the other side of the lake. Simply awesome!
Thank you again to all that donated to the Leukemia and Lymphoma Society and to all of you amazing folks that showed up to walk with us tonight. We love you!!!

Gone fishing! (and zip lining… and horseback riding… and…)

We are coming off of a fantastic weekend! Delaney had the opportunity to go to The Round Up River Ranch Camp for a weekend and even got to bring her family. It is a Paul Newman Camp that combined with funding by the John Wayne Cancer Foundation offers a completely free family weekend for kids with cancer. Technically it only lasted a little over 40 hours, but it was packed with fun activities and laughter.
We got our cabin assignment upon arrival on Friday, and then went to dinner and a campfire for some songs, skits, and some smores. Afterwards, we went back to our cabin but instead of going to bed, the kids hung out with some very cool counselors and played games, told jokes, and were challenged with brain teasers. While they were having their fun, the adults got to have time to meet each other and enjoy some fellowship while playing some decades trivia. We finished up the fun and then hit the hay because we knew Saturday was going to be a full day.
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Having some fun with one of the cool volunteers, Kevin.

We started our day off by instilling some fear and trembling into the fishies of the camp’s stocked lake. The fish were right to be scared, just not of us. We got some food in us and then decided to hit the climbing wall and zip lining. I had been zip lining before and was trying to play it cool. Even having done it before, the familiar butterflies in the stomache returned before stepping off a perfectly good platform that was probably 40 feet up. If I was nervous, Delaney was terrified… but she did it! She also got to ride a horse, do some painting, boating (including getting a very big laugh as her dad managed to flip the canoe when he got on it), and even won a buck off dad when her arrow was closest to the target in archery (nothing like the teaching the kids gambling at a young age… don’t judge me).
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As fun as all the activities were, the real joy came from the people. We met so many nice people. From the volunteers that donated their time to serve the campers, to the other families that got to cut loose and not only enjoy their time with their family but also got to bond with other families facing similar struggles, but the kids themselves were what made it so great.
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Sure there were bald kids, kids on crutches and in wheelchairs, and a whole lot of medications, but this weekend they weren’t a bunch of kids with cancer, they just got to be kids. They played kickball, soccer, hula hoops, dodge ball, building blocks, croquet, got to go to the carnival that the staff and volunteers put on, danced after every meal, and just laughed and laughed through it all as they created memories that will last a lifetime.

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After her fun weekend, Delaney got right back in the swing of things. She got more chemo today and goes back Wednesday for the doctor to check out how her fractured ankle is doing. Because I’ve been doing such a poor job of updating lately, I don’t know that I mentioned that she currently has her 2nd ankle fracture this year. Unfortunately, this is just part of the fun that comes with steroids. The doctors were worried about necrosis of her bones caused by the steroids, but they think she’ll be fine. Hopefully she gets some good news on Wednesday, because soccer season has officially begun!

Back to school… bring on the 2nd grade!

      As Summer is winding down, it makes me wonder where the time has gone and it also makes me realize that I haven’t posted a Delaney update in a while.  She has had quite the Summer.  Last Summer she was too sick to go anywhere or do anything.  So when me and her sisters were going to spend a week at the beach with Grammy, Grandpa, and lots of cousins, Delaney got to stay at home with Mom because her ANC level was too low for travel.  Well this Summer, she has definitely made up for it.

       From her Make-A-Wish trip, to camping near the Great Sand Dunes, to getting to go Southern California for her cousins wedding  (where she got to show off her moves on the floor), to playing on a softball team for the very first time, or just hanging out with her buddies, she has been out going and doing.  Of course it hasn’t been all fun, but for the most part when she is feeling well enough (which fortunately is most of the time now), she has been out enjoying life.

        Of course, her treatments continue.  At her chemo visit a month ago, they decided to up her doses across the board.  There wasn’t anything wrong or not working, but as she grows her body needs more medicine.  You would think that by now we would be accustomed to this but for some reason this seemed to hit me in the pit of my stomach.  It was just the thought of more chemo in her port, more chemo in her spine, and the toughest part for Delaney, more steroids.  Her little body seemed to do okay with the increased chemo.  Her emotions from the steroids on the other hand…  

      Unfortunately, she just went back this past Friday for more more chemo and more steroids which means when she starts school tomorrow, she is right in the middle of a steroid cycle.  The big 2nd grade.  Delaney was in kindergarten when this whole (non) Adventure started and now she is about to delve into the school year where she officially becomes smarter than her old man.  The great news is that the light at the end of the tunnel is growing brighter because if all goes as planned, the end of the the school year is also the end of her treatment.  That’s right, in May of 2015, Delaney should be done with treatment and can officially say, “Cancer Can Kiss my Stache!”

Delaney (making a silly face) at the Cancer Can Kiss My Stache booth hosted by the Leukemia & Lymphoma Society.

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Day 1 of Consolidation is officially in the books!

     Truth be told, I’m kind of a sissy.  Not a brawl Brad Pitt in Fight Club kind of sissy (shhh… you do know the first rule of fight club, don’t you?), but more of a needles and blood kind of a sissy.  Actually, it isn’t even needles or blood, it is what needles poke and blood flows through: veins.  They creep me out for some reason.  When my wife is feeling especially witty, she’ll put her finger on one of my veins to block it because she knows it gives me the heeby-jeebies.

       So with all of that in mind, let me tell you about Delaney’s first day of the Consolidation Phase.  I think I might have mentioned that today they gave her chemo in her spine through a lumbar puncture, in her blood through her port, and then tonight we gave her a pill of chemo to take orally.   The spine was noteworthy mostly because today was the first day that she was kept conscious for the entire procedure.  Instead of putting her under, they gave her fentanyl and versed as one helps with the pain and the other makes her forget what she just went through.  All in all, the spinal chemo went pretty smooth (easy for me to say from the peanut gallery).

      They were going to access her port to inject her chemo in it prior to doing the spine.  However, before they inject it in her port, they draw blood out of it.  Well, they are supposed to draw blood out anyway.  They pulled back the syringe, but with no blood.  They had her hold her arm in the air, no blood.  Hold her breath, no blood. Stand on her head, no blood. Hmmm… they couldn’t put the chemo in without getting blood out.  They decided to proceed with the spinal chemo (which doesn’t require them to pull blood out— spinal fluids yes, but not blood) and then come back  for their blood. 

       During the brief intermission, I asked Stacey to translate all the mumbo jumbo to English and explain what was going on.  It turns out the inability to pull blood might have stemmed from a few things: 1. Those handsome vampires from Twilight were thirsty and beat the doctors to the “blood colored” punch. 2.  It could have been a clot or 3. The vein was getting “flimsy and when they were drawing on the syringe the vein would collapse.”  Why in the heck did I even ask???  “Please let it be the vampires!” I thought,  because mental pictures of veins collapsing had me wishing I was getting pounded in the fight club (Shhh…). Anyway, they eventually got the necessary blood, and gave her the chemo through the port.  Then tonight, we gave Delaney her first oral chemo, and she is now sleeping soundly. 

      She was as silly as ever today.  The nurses were cracking up as she feigned death from starvation.  When when they needed to give her a bandage and asked what color she wanted, they were met with a very loud “NOT PINK!” from Delaney (you would think her ever-present mustache would be a hint that she might be a tom-boy).  When she eventually got out of the doctor’s office, she was in a great mood the rest of the day.  In fact, she was feeling so well, that she even got to go outside and jump on the trampoline that the Easter Bunny brought her (and the Easter Bunny’s buddy was here helping him put together last night until almost midnight).

A couple of housekeeping items: 1. I feel like you (the blog reader) were her faithful first friends so I need to let you know about a new addition IF you are interested.  For those of you that are Facebook peeps, we created a page for Delaney at http://www.facebook.com/CancerCanKissMyStache   If you “like” that page you’ll get any quick pics or (much shorter) updates when you are on Facebook.  An example of this was today when we were waiting for all the procedures to start and I snapped a quick shot of Delaney relaxing with her Mommy (both looking as cute as can be).  I am not going to further fill up your in-box with a blog update of that, but it might actually be a welcome status update on Facebook that could give you a break between the 157 political messages we all have at any given time.  2.  That zazzle account (www.zazzle.com/4delaney):  Some have asked and probably a lot more are wondering, “Do you guys make any money on that merchandise?”  Yes.  I’ll explain how it works.  We do NOT set the prices.  I’ll be the first one to admit that a lot of the items seem overpriced to me.  Personally, I would never spend 20 bucks for a deck of cards (unless… they were marked and I could win the money back in a neighborhood poker game).  A certain portion of the sale of all items do go to us.  We do set that percentage.  The website has suggested guidelines at 15%, so that is what we went with.  We aren’t really looking at this as a huge money-maker (I think we are up to $11 right now), but that was never the intent.  My friend Kris, who originally had the t-shirt idea, lives in the S.F. Bay Area. They had a similar thing out there, in that there was a very sick little girl.  Kris shared how cool it was to see stickers, buttons, and shirts out in the community.  The kids who knew that child got to help and show their support for her at the same time. That part did sound good to me, if done within reason.  However, the last thing we would want is someone to go into debt trying to buy a $5 sticker.  We feel very blessed by how much has already been done for us.  Instead of buying something you don’t need, feel free to just smile, say hello, and say a prayer for Delaney (all of which can be done for FREEEEE!!!!!)