This leukemia stuff is a pain in the…

For the most part, Delaney is doing great. She’s happy, she is going to school, and she is feeling well enough to fight with her older sister (dad’s non-medical gauge of how well she is feeling). So with that said, nothing to worry about, right??? I don’t really know, but I certainly hope so.
Besides cold symptoms that she hasn’t been able to shake so they have been able to linger for about a month, she keeps having a weird foot pain. The “weird” part is that I have no idea whether it is related to all the drugs she is taking, or if it is related to her doing a silly Russian dance where she combines Baryshnikov with River Dance. The same with the cold… is it just a cold (that a lot of kids have right now), or is it something worse related to her leukemia. What I can’t seem to shake from the back of my mind is “Uh oh.. you are feeling safe again.” Every time we get comfortable with where she is in her treatment and how everything is going, we get thrown a curveball. The persistent fear is just all part of the cancer fun.
On a different note, Delaney asked us recently how long she has been in treatment. Next month will actually be one year, almost 15% of her young life. As much as she is over it, she knows she still has a long way to go. She has a very matter-of-fact approach and just takes it day by day (she just told me, “Dad, it is Sunday, I need to take my Septra AND 6MP). She doesn’t do the whole, “Woe is me” Eeyore thing. Quite the opposite, she finds the joy and fun in almost everything she does, and right now is just excited that her Broncos are going to the Super Bowl!
Thanks everyone!

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A Christmas poem

Twas the day before Christmas

and all through the house

not a Delaney was stirring

not even my spouse.

 

Instead of anxiously awaiting Santa

or playing with her sisters while building a fort

Delaney is back at the doctors

getting more chemo in her port.

 

Today also starts the next cycle of steroids

so lets get ready for the fun

tears, fits of anger, and eating

just about everything under the sun.

 

But as you all already know

Delaney is full of fight

So I’ll put this poem to bed 

by wishing you all a good night!

 

        Okay, I’ll let the lame poem rest.  I just wanted to give you a quick update on how Delaney is doing.  She is doing great!  She has been enjoying her Christmas break and feeling well.  She went into the clinic yesterday and her counts were down.  Unlike the prior stages, this is actually a good thing on this stage.  It means that today she can receive more chemo.  Receiving chemo on Christmas Eve may not sound like a good thing, but it is a lot better than the alternative of being too sick to NOT receive chemo.  

         I think the realization that we are hitting another cancer milestone (first Christmas) has taken its toll on my wife.  The reality is that Delaney has her good days and not so good days, but we still have a long way to go on her little (non) adventure.  However, we are looking forward to keeping our family Christmas traditions alive this season. After today’s treatment, our family will go to church and then come home and allow the kids to open one present each.  The next morning, we’ll wake up early find the coal Santa left for me, remind the kids again why we celebrate Christmas,they open their presents, and then I usually have to remind them about the kids in Africa every time they open a present from me (“What! You don’t like it??? Well the kids in Africa would love to play with kitty litter!”). Then we’ll prove once again how goofy our family is by heading to the movies dressed in our PJ’s.

        I know we sound like a broken record, but we can’t even tell you how much your words of encouragement mean to us.  I want to thank so many of you that reached out to my wife while she was having such a tough time these past couple of weeks just to let her know that you were thinking of her or praying for Delaney.  It is truly humbling when someone you haven’t even met tells you that they have been praying for your family. We wish you and yours a fantastic Christmas filled with love and laughter.

Here is a pic of our little mouse not stirring on the eve of Christmas Eve. Merry Christmas!

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About time you update us!

So I’ll be the first to admit it, I’ve been slacking in the updates category. Worst. Blogger. EVER. Anyhoo, instead of having you read a few different posts, I’ll save you the pain and combine the updates here.
Delaney has been doing great. About six weeks into the school year, she still has only missed two days of school and both of them were treatment days. She had another incident at school where some girls were asking her why she was in the girls bathroom. She handled it in a very mature manner. I handled it as a loving, Christian father and told her that if those girls tease her again she needs to just kick them in the nuts.
It’s not just kids that still mistake her for a boy. We were at the farmer’s market last weekend and an elderly lady was commenting on the fake tattoo she just had placed near her bicep. What does he have on his arm?” she asked. “SHE just got one of those temporary tattoos on HER arm,” I told her in my subtle way. “Oh what tattoo did he get?” Betty White asked again. “SHE got some sort of cheesy dragon on HER arm!” I yelled to her. “I just thought he wanted to show off his muscles” she giggled to herself. “Lady, if you refer to my daughter as a boy again, they are going to have to fit you for new dentures!” I warned her sternly. And that is how I ended up with a black eye last weekend.
Delaney’s treatment continues to go well. In fact, she had more chemo just yesterday. She was a little nauseous last night, but the medicine helped with that. I think I may have explained that this phase includes an increased dosage of chemo with each treatment. Our little stud seems unphased so far… I’m guessing it’s because of his muscles. 🙂
We actually had something very exciting happen last week. However, before I share what happened last week, let me flashback seven months. It happened the first week we were in the hospital after Delaney’s initial diagnosis. After about the 4th day, her sisters were allowed to come visit her in the hospital. One of the Childlife specialists gave them a tour of the cancer floor and held a kids only Q&A session. When I went to check on them, she was explaining how Delaney now qualified for the Make A Wish foundation. She must have noticed my eyes get as big as my head and my “I am about to faint” look on my face because she stopped in her tracks and immediately said, “Wait, wait, wait…. Just so you know, they changed their policy and it no longer is just for a terminal diagnosis.” As soon as my heart started beating again it became humorous as her sister Ashley was VERY concerned that Delaney would “waste her wish” on chicken nuggets!
Fast forward to last week when two very nice women representing Make A Wish came to visit us. The wife and I tried to keep quiet and not influence her wish. Delaney alternated between her silly self and her “I don’t want any special attention” self. After about two hours of giggling and probably very heavily influenced by hearing how much fun one of her best friends had on a Disney cruise, she officially wished to go on a Disney Cruise. Actually in her little goofball style, she wished to take a limo on a Disney cruise that would allow her to wear a tuxedo.
We haven’t heard from the official wish fairies yet, but we aren’t waiting on anyone to have fun. This weekend while Delaney’s mom got to have a much needed girl’s weekend with dear friends she grew up with, we cashed in on the very generous offer of the manager from the local Embassy Suites to stay with them for a night. With that said, thank you Bridgette and goodnight all… We have a yummy complimentary breakfast to wake up for!
Here is a pic of Delaney reminding you that September is Childhood Cancer Awareness Month.

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Delaney and Broncos Awesomeness

Let me get the boring stuff out of the way. Delaney was supposed to start her next phase of treatment today, but yesterday’s labs revealed that her counts are way too low to handle chemo right now so the Interim Maintenance II Phase will have to wait another week. But as Delaney would say, “yeah, yeah, yeah… BORRRING!”
Okay, now to the fun stuff. You know how when your kid is super excited about something and comes running in to tell you about 10 minutes worth of stuff, but does so without taking a breath? WellthatisexactlyhowIfeelrightnowsoyouwillhavetobarewithme!
There was a whole lot of awesomeness that came together so in hopes that I don’t leave anything or anyone out, I’ll start at the beginning.

I was a poor schoolgirl living on a prairie with Michael Landon. What??? Okay, maybe I am just drunk on excitement. It all started a couple of months ago when Delaney said, “Dad, wouldn’t it be fun if you could take me to a Bronco game for my birthday.”  I’ll quickly digress to point out that when you have four daughters and one of them wants to spend her birthday with you at a football game, you can die a happy man.  Anyhoo, sure enough, her birthday falls on a Sunday this year and the Broncos are playing the Redskins that day. I thought to myself, “why not write the Broncos organization and ask if maybe they could help with an autograph or something?” Autograph… Ha!

A very nice woman by the name of Kelly who works for the Broncos called me. She didn’t want to get our hopes up, but said that she can SOMETIMES get passes to go on the field before the game. However, we would need to be able to find tickets and that they would have to be for a different game than the one that would bring ex-Bronco and current Redskins Coach Mike Shannahan back to town. That is of course, if we wanted even a chance of getting a pass to go down on the field. Hmmm…
Enter our friend Tracy from church who offered to give us two tickets to last night’s game.  Sweet! Delaney and I could go enjoy the game. Then  our friend, and Bronco Superfan, Wayne offered us one of his tickets so that my wife Stacey could also go.  I say “Superfan” because every inch of Wayne’s basement is covered with some sort of Bronco’s memorabilia. So much so, that Wayne and his basement have been highlighted in four different magazines. If it is related to the Broncos, Wayne already either has it or has done it. He has done everything except get to go on the field before a game… Until last night because Kelly and the Broncos organization delivered!
As a coincidence, due to changes at my wife’s work, I actually took a job with a new mortgage company this week. They sent me to get one of those handsome photos so people who have my card can put it up on the walls of post offices, public restrooms, weight loss clinics, etc .  Please enjoy this gratuitous goofy shot while I search for any relevance to Delaney’s night… still searching…:

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While my photographer was working the miracles of Photoshop to get my pic down to three chins, I noticed his co-worker editing photos of Broncos players. It turns out Rob (www.robhawthorne.com) just happened to be one of the photographers for the Broncos.  Hmmmm…
So like kids waiting for Christmas, we were anxiously counting down the days until our Bronco game. When last night finally got here we zoomed over to the stadium and picked up our pregame field passes at the media will call.  We were all bursting with excitement as we headed down the tunnel that we knew on the other end was nothing short of spectacular. When Delaney arrived at the the field she flopped down on the turf so she could literally be ON the field:

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We weren’t there five minutes before Delaney was on the jumbo tron. We then walked over and waited for the players to make their entrance. They ran in and as part of their warm up, jogged right in front of Delaney who was able to give one of them a high five. We then got to watch the players warm up only a few yards away.  Does anyone recognize this guy?:

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To give you an idea how close the players were, look at this picture (It’s just a shame Delaney wasn’t excited or anything):

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The players weren’t the only ones we saw.  I looked up and Rob from the photo studio was walking by, “Hey why don’t you guys come on this side of the line so I can get a picture,” he suggested.  Just like that we moved from the safety of the sidelines to trying to make sure the linemen didn’t eat us.  Rob took some shots for us and then we went back to the sidelines to take in some more Bronco awesomeness. As the warm-up was winding down, Broncos return specialist Trindon Holliday ran directly over to Delaney and handed her his gloves. It happened so quick I was barely able to get this expert pic (okay, let’s just say Rob has nothing to worry about):

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However here is a pic of the gloves he gave her (Delaney loves the fact that they form the Superman emblem when put together):

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You might remember Holliday as the player who returned a punt 90 yards against the Ravens last year, but here is how Delaney will remember him: “Dad, I think Holliday is the nicest guy on the Broncos!”  We all stood there in disbelief and as Mom got a little emotional, we asked ourselves if that really just happened.
As our time on the sidelines was coming to an end, Rob came over and said goodbye and took some more shots for us. Only this time it wasn’t just the three of us, he flagged down a bunch of Bronco Cheerleaders and they surrounded Delaney for some pics. Then last but not least, she even got to take some pics with the Bronco’s mascot. It was truly a night of Broncos awesomeness and we are so grateful to all who played a part in making this a night none of us will ever forget!

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The little Delaney that could

So Delaney keeps chug-chug-chugging along. During Thursday’s all-day treatment she did her usual hazing of the medical staff:

If you are wearing pink, you aren’t coming in my room!

What? A nurse that is in training wants to know if she can watch them put me to sleep? That depends, can she sing Dynamite?

She carried on with her shenanigans for a few minutes, before Stacey and I had to leave the room so they could perform their procedure. We heard the medical staff and Taio sing Dynamite a couple of times and then heard a giggling Delaney yell, “Waitttt! I’m not even asleep yet!!!”

Anyway, as the day progressed, they moved Delaney back to an infusion room where she could get cozy for her chemo. We thought she would nap, but noooo! A couple of hours later, her sisters came to visit and brought her lunch. By the time they left, she could barely keep her eyes open. Surely, she would go right back to the bed and fall fast asleep. Nope (and stop calling me Shirley)! We thought that she would crash as soon as we got home, but there were bugs to catch and friends to play with. Eight hours of treatment, a spinal puncture, and three different types of chemo weren’t going to stop Delaney from having fun!

The next day the treatment finally caught up with her, and she felt crummy. In spite of battling nausea almost all day, we had to go back to the doctor’s office so the nurse practitioner could sign off on Stacey administering the chemo. We got to Mommy’s professional side as she hooked up the various syringes to her port and injected the chemo. I asked Delaney afterwards, “Isn’t it cool that Mommy can give you the treatment,?” To which she replied, “Yeah it is… but kind of creepy too!”

Today, she was already feeling better again. In fact, she was feeling so well that she was able to end the day by going over to watch a movie with her friend Jacob R. Of course, her big sis Emily wasn’t going to let her chug on out of there before sneaking in a little cuddle time of her own!

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Echo (Echo)

So before our (non) adventure began, this is the closest we would come to an echo in our house:

One of my kids (mumbling): abigchubbyhairydaddysayswhat

Me: What???

Kids: He he he.

Not very close to an echo, is it?  I agree.  Which is why I hope you (yes I am talking to the medical professional that I am married to) will forgive me when I made the awful mistake of mixing up an EKG with an Echo Cardiogram.  One is the procedure Delaney had yesterday to make sure her ticker is cool before the next round of treatment, and the other is apparently the secret police in Russia.

So here is how yesterday’s treatment went down back at Children’s Hospital of Colorado:

Woman administering echo (echo): Do you want the gel to be cold or warmed up?

Delaney: Cold.  Am I going to have to take off my bow tie?  Argghhh.

Echo (Echo) woman: I’m going to give it to you warmed up.  Okay, what you are seeing on the screen right now is your heart.  Isn’t that cool that you can see your heart?

Delaney: Actually, it’s kind of BORRRRRRRINNGGGG!!!!

Echo (Echo) woman: Well let me just do my measurements and you’ll be on your way.

Delaney: BORRRRINNGGG!!!

It was basically a cross between a pregnant woman’s ultrasound and a Care Bear’s Episode complete with literal rainbows of colors (Mmm… Skittles).  With all the cool colors coming from the screen I briefly wondered if was having a flashback from all the drugs I did in the 60’s.   Then I remembered that I wasn’t even born in the 60’s and haven’t done drugs.  The rainbows were a good thing according to the echo (echo) lady but they’ll give the eventual results to Delaney’s doctor.  I’m not going to wait to give you the results: I saw her ticker moving so I’m going to declare right here and now that she is alive.

Since I am giving you an update anyway, I’ll give you the update of what Delaney has coming up.  Tomorrow she will get her labs done to make sure she is good for Friday’s chemo treatment.  The only thing different that we are really hoping won’t be necessary with this visit is she might have to be sent to an Osteopathic Doctor (I might be messing up this one too).  She has been getting pain in her joints from the medicine and last time we went to our usual doctor they said, “We’ve been putting it off, but if she is complaining about joint pain next time, we’ll need to send her to this other doctor.”  Apparently the medicine they are giving her can damage her bones and they want to have it checked out.  We are optimistic that won’t be the case because she hasn’t really been complaining about it lately, but we’ll see.

The real fun starts in two weeks when she starts what is called the Delayed Intensification phase and I guess the word “intense” is in there for a reason.  The logic is that they try to hit the cancer extremely hard before she goes on to the maintenance phase.  In no certain order, the next two months starting on June 28th include:

-The steroids are coming back.  They’ll be a week on, week off, week on… this time.  So even though she is now finally back to her starting weight, she’ll probably get a little puffy again.

-The treatment will go from once every 10 days to at least twice a week.

-There is at least a 3 day in a row stint where we’ll need to give her the chemo at home.  Only this time it won’t be in the form of a pill, we will need to inject it in her port.  Once again, I’ll praise God for my wife who not only is Mommy-extraordinairre, but also happens to be a chemo-certified nurse.

-The chemo itself is going to change from the yellow one (obviously lay man terms here) that goes in over 10-15 minutes, to a red one (doxorubicin) that gets injected over two hours.

-Whatever hair she still has on her head on June 28th, probably won’t still be there at the completion of this phase.

-It is technically a two month treatment phase, but in the middle of it, it isn’t uncommon for the counts to be too low to continue without a break so there might be a week or so off so she can recover.

Basically, it sounds like it is going to be pretty brutal.  We all know Delaney is a little fighter and will attack it like she has the entire time: with a silly toothless smile only slightly hidden by whatever mustache she decides to sport.   However, I’m going to put out a call to all those prayer warriors and supporters among you.  You have all been AWESOME and I just ask that even though it is Summer and we all like to take a break with many things, please continue to lift up Delaney for the rest of Summer.  We are so appreciative of you all that words really cannot express it. Seriously.  As my feeble mind tries to think of an appropriate way to express our gratitude, the only way I can think of is not appropriate.  But since I’m not appropriate, here it goes anyway: bighairydumbbloggingdadofDelaneysaysthankyousomuchasyouwondertoyourselfifheispossiblymentallychallengedwhat.   What???  He he he.  THANK YOU!!!

A priest, a rabbi, and a midget walk into a bar…

… the bartender says, “What can I get you gentlemen to drink?” The priest says, “besides an occasional communion wine, I never drink!” So the bartender looks at the rabbi who immediately says, “I drink even less than the priest!” So the now frustrated bartender says to the midget, “Okay, you don’t have an excuse little man, what will YOU be drinking?” The midget replies, “Little man? Thanks, but I’m only a six year old girl!” The bartender says, “Sure you are! Then explain the bow tie and the mustache little girl!” The little girl responds, “Umm… I think mustaches are really cool and I feel like that I am wearing a tuxedo when I wear my bow tie.”

The bartender throws all three out.

Knock knock.

Interrupting to say.

Interrupting to say who?

Interrupting to say this is the Worst. Joke. EVER.

Okay back to the joke that is now a riddle. The bartender throws all three out just as a police officer is walking by. The officer looks at all three, and arrests the midget for being under the influence.

Q. None of them had a drop of alcohol at the bar. Why was the midget under the influence?

A. To get to the other side.

I’ll be here all week folks!

Tomorrow Delaney kind of has a doozy of a day. Her labs were good today, which means her usual chemo dosage will be increased. If you’ll recall from her past two treatments, they would access her port, push the chemo in, and we would be bada binging our way right out of there! Tomorrow she still gets that kind of chemo in her port, along with some new medicine in her port, along with some in her spine.

Which brings me back to the drunk midget. They actually give her a sticker that explains she has been sedated in case a police officer wants to know why are little mustached, bow tie wearing goofball is acting even funnier than she looks.

Tonight I was listening to her giggle as she was bringing the water hose onto the trampoline, I wondered if she even had any idea about tomorrow. She obviously knew she had a treatment because she had to go get labs today, but did she have any idea that tomorrow’s appointment would be any different than her last treatment? I quickly got my answer when she asked, “Daddy, when they put me to sleep, do I sleep very long?” And then further confirmation when her sister Ashley asked about doing something with her tomorrow. She very matter of factly stated that she wouldn’t be feeling well tomorrow. Unfortunately, she is right. Apparently behind that mustache and bow tie, there is a very smart cookie. The good news though is that with each additional step and dose of chemo, she is like that crazy chicken, one step closer to the other side.