Cha Cha Slide over Cancer!

      In case you are wondering if I know how bad my analogies and sayings are, I do.  In fact, I’ll be the first to admit that this one is possibly my worst yet.  It’s either I try to interject my “humor” into these posts, or I force you all to read them in your best Eeyore “whoa is me” voice.  I refuse to do that to you, not because I would actually feel bad for you, but I refuse to let cancer win by giving you a bunch of boring doom and gloom updates.  

      So I don’t know if you have been to a wedding, a roller rink, or a father daughter dance lately, but there is something that gives white folks the biggest delusion that they can dance since the inventions of the “white man’s overbite”, the robot, and Boone’s Farm combined.  It is called the Cha Cha Slide and there is a line in there that says, “it’s going to get funky-funky-funky!”  Well that’s where we are with Delaney’s treatment, it’s about “to get funky-funky-funky!”  Boo hiss!  I know… I told you this was bad.

-So Delaney has been feeling great this week.  She has been playing some cards, jumping on the trampoline, and even got out for a movie with her sisters and grandparents.  Because she has been feeling so good, we were a little surprised to find her ANC dropped below the all important 750 mark again.  It was 700 on Tuesday and a reading of under 750 usually means no treatment.  However, upon further review, her doctor said, “It’s close enough, let’s go for it!”  

-This is one of the many things we are learning about cancer and the treatment of it.  A LOT really depends on the doctors.  Delaney’s doctor believes in treating the patient and goes off how she is feeling instead of just following the book down to the letter.  We really appreciate this.  So far, not only has it saved us more than one middle of the night ER Visit, one weekend stay in the hospital, but it also has allowed for Delaney to have fun just being a kid.  Stacey called the doc’s office to ask if Delaney could possibly go see a movie.  She got the nurse, who said no.  She then talked to the nurse practitioner, who also said no.  She then talked to the doctor who asked how she has been feeling.  “She’s been great” Stacey told him.  To which the doctor replied, “Unfortunately, that is going to change quickly, let her get out now and have some fun while she is feeling well!”

– I’m sure there are people who have got to be asking, “Why even risk it?  It’s just a movie!”  Well, it isn’t just a movie.  It is the library, school, public restaurants,  parks, teams, and a whole lot more for 2.5 years!  That’s a long time to make her just wear a mask and live in a bubble.  She’s a crazy little kid, we want her (and all of our kids) to get out and enjoy life!

– Tomorrow’s treatment will be the most intense yet which is the perfect time for a quick perspective/gratitude check.  It is an all-day event in which they’ll give her the lumbar puncture, some fluids, then some new types of chemo, and then flush it all out.  It’s going to be about eight hours of suckiness (it’s a French term for poo poo I think).  However, at the end of the day, we’ll get to take her home where she’ll get to sleep in her own bed.  Actually, she probably won’t be feeling well, which means she’ll sleep in our bed, but you know what I mean.  

-After that, it’s going to get funky, funky, funky (sorry… the stupid tune is so catchy I just can’t help myself).  Beginning on Friday, Stacey will begin to give Delaney chemo at home every night for three nights.  It goes in cycles where she’ll have four on (the doc’s will give her the first one tomorrow) and then three off and then repeat.  Most kids would be given shots in the leg by their parents at this point.  However, Delaney is blessed to have a Mama who is a nurse that just happens to be chemo certified.  So they will keep her port accessed and every night Stacey will inject chemo into what has just got to be the cutest darn little patient she has ever had the privilege of treating.    

– In about two weeks from now, Delaney will be at about her lowest point.  Unfortunately, also in about two weeks, Delaney’s school begins. She probably won’t be able to start back with all of her friends, but will be there as soon as she is feeling better.  We’ll be having the home school teaching aide come out to start the year, but are hoping she can be back in school full-time no later than November.

– In true Delaney fashion, when we ask her if she wants a wig, she replies, “Yes, I want a Mohawk!”  I’m trying to convince her to get a rainbow clown wig so she can go around whacking the heathens with a “John 3:16” sign but she isn’t going for it.  Anyhoo, she’ll be sporting some sort of wig soon.  Right now she is more than content with a backwards baseball cap.  

-So are we sad knowing that our beautiful bald little daughter is going to be feeling very crummy really soon?  Absolutely.  It’s one of those things as a parent that makes you really feel helpless.  However, we are also reminded of some wise sayings: “Do not worry about tomorrow, for tomorrow will worry about itself,”  “TODAY is the day The Lord has made, I will rejoice and be glad in it!,” and last but also least, “It’s time to get funky, funky, funky!”

Advertisements

Praise God!

So at yesterday’s appointment, Delaney’s ANC dropped all the way to 100. Her platelets, hemoglobin, and just about everything else was tanking which ensured that she would not be receiving her treatment today. To make matters worse, she had a fever of over 100 degrees. They sent us home but said that with her ANC being so low, if we get two more temps of 100 or one temp of 101, we were going to be admitted to the hospital for at LEAST 48 hours.
Well she hit 101 last night and had a 100.3 this morning. “Come in immediately,” they told us at the doctor’s office, “and pack your bags because Delaney is going to be admitted!” We packed our bags and headed in right away. While they were taking her vitals, Stacey and I chatted with the Nurse Practitioner. “What are the chances of us not having to be admitted?” I asked. “With her ANC this low AND a fever… NO chance… Sorry” she informed us.
We headed to the exam room where they drew blood out of her port. About ten minutes later, the Nurse Practitioner and the nurse who drew her blood were literally racing each other into our room. “Miracles do happen because her ANC is 900!!! You guys are going to get to go home!!!!” Thank you Lord and thank all of you that have been praying for our little goofball! We hope all of you have a great weekend because I know we plan to… OUT of the hospital!

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!”

20130724-155510.jpg

Casa de Rufus

Super quick update that Delaney had a great day and is feeling MUCH better! She still has no immune system, but is smiling and back to her fun-loving self. Anyway, I mentioned her hair loss but she is really taking it like a champ. The past couple of months as it thinned it would start to ball up in a “rat’s nest.” Stacey affectionately nicknamed the imaginary little guy Rufus. Well now that Delaney’s hair is falling out in clumps, her oldest sister decided to make a house for Rufus. Here is a pic, but in case you can’t see all the details, Rufus (laying in his bed while wearing his bow tie), has his very own: mustache art, pic of his family, rug, pillow, chest-of-drawers, and curtain. He is one stylish dude!

20130719-174234.jpg

Womp womp… wah wah…

We’ve all met those people and probably read some of their blogs or Facebook posts. You know who I am talking about, the Debbie Downers of the world. What? You are happy because you just got a new puppy? Well, my cute little kitten Fluffy just choked on a hairball… Womp womp… Wah wah. It’s almost tough to blog or give updates these days as that is how I feel. Wow, your son just took first place in his swim competition??? Well my daughter is almost too sick to even get out of bed these days because she has cancer! Womp womp…
I guess part of the challenge is that because this blog has always been a reflection of Delaney, it is usually positive and upbeat. She has always been inspiring and almost a source of secret strength. Well… As she fights through this tough time she continues to inspire. And for strength… Well my strength comes from The Lord! So while trying to not become a Debbie Downer, I’ll try to give you the latest update.

-No, she really isn’t doing so hot these days. It hit me today that less than two weeks ago she commented that “she just couldn’t stop smiling!” Now we are lucky to get three smiles in a day. She just feels crummy.

– Speaking of feeling crummy, she got to go back for an unscheduled visit to the doctor again today. Her tummy was causing her a lot of pain and the doc said to bring her in immediately. Actually, he said to bring her to another doc for an X-Ray first and then bring her to his office. The good news is that it wasn’t pancreatitis, she didn’t have to be admitted, and we are already back home.

– The day after I got back California the wife and I were excited that Delaney was up for going outside for a couple of minutes. We put our blanket out on our lawn and set out to enjoy a beautiful Colorado day. I told my wife that I missed her and gave her a smooch. Delaney looked at her parents canoodling on the blanket, then looked up at her older sister and said, “that’s just not right!” We all giggled. What can you say, even when she is feeling crummy, she’s still got it!

-Her hair: technically, she’s still got it. For how much longer? We’ll see. She has been fortunate to keep her hair for almost five months. I have a very strong feeling she won’t be keeping it for six months (or even five months and one week for that matter). This morning Stacey went to give her a hug and pulled a whole clump off her shirt. The good news is that it seems the last five months have given her time to get used to the idea of her hair falling out. We’ll see how it goes, but for now she seems fine with it.

– Her all-important ANC was still at 200 tonight. This basically means she has NO immune system right now. Remember how if you spelled your name correctly on the SAT they gave you 400 points just for that (still not sure how I only scored 285 on mine)? Anyway, steroids are the same way in that they’ll give you a couple hundred of ANC points just for taking them. So her extremely low ANC is actually artificially high.

– She has an area of skin that looks like it is about to tear apart. If it tears, this is almost a sure infection. Per the doc, any infection or fever right now, gets Delaney a free three day pass in the hospital. No bueno.

– The wife’s sanity: I would stay it is still intact but she is still married to me so that puts the whole thing in question doesn’t it? The truth is we’ve been blessed with the mother-in-law coming out and that is always a HUGE help.

That’s the update. Hope all is well with all of you and as always, we are so thankful and blessed to have so many people praying for Delaney and our entire family. I’ve got to go flush our goldfish now… Womp womp… Wah wah.

FB Update from Stacey

Today I think is the true start to the crumminess that awaits us. Delaney has been napping and going to bed around 5 every night for the past couple days, but today brought me to tears. She doesn’t want to go outside, she doesn’t even want to change floors in the house. She is constantly hungry, eating two bites of something and then saying she’s done until a minute later asking for something new. I’m really poor at short order cooking. What really got me today was when she started reacting to something. Seeing how her Immune system is the lowest it’s ever been she could be reacting to anything. Her eyes got red, a rash on her belly, her chin was red and swollen, as well as her right foot. Strange! We gave her Benadryl and it went away. She just looks so sad, not smiling, not laughing. Just crummy. I am not looking forward to the next couple weeks and what it may bring. Please Lord give me strength in spite of this heartbreaking circumstance. Thank you to everyone that has sent us gifts, cards, prayers, and calls. You have made a difference and we are so thankful to have you in our lives.

Love,
Stacey

That was Stacey’s facebook status update yesterday and because she couldn’t find her login for this blog, she said I could share it here.  Just so your not having to read too many updates, I’ll also share on this same post.

Most guys feel like they are cursed with in-laws, somehow I have been blessed with some very generous ones.  My in-laws started planning a vacation for their entire family (including all grand kids, etc.), over a year ago.  To put it another way, they started reserving and paying for things eight months before Delaney was diagnosed with leukemia.  Of course with the diagnosis came an instant priority check, and a vacation didn’t even make the list.

As time passed and Delaney was doing well, we held out hope that maybe we could all go.  It wasn’t going to be just any vacation, it was going to be a week spent at the beach.  They had rented a house that was literally on a Southern California beach.  Considering the stress we were experiencing, it should have been exactly what the doctor ordered.  Unfortunately though, the doctor didn’t order it. In fact, he ordered just the opposite: don’t go.

Stacey was adamant that I still go and take the other three girls while she stayed home with Delaney.  When we left over a week ago, Delaney was feeling well.  A couple of days later, she was still doing so well we wondered if she couldn’t possibly fly out for a few days.   Thank God we decided to play it safe and listen to the doctor as every day she got a little worse and was a little more run down.  We had no way to know her ANC was so low before they tested it, but were so grateful that she stayed home as she would not have been able to get back on a plane while being so immuno-compromised.  As much as we felt that by splitting up the family for vacation was a sign that cancer was temporarily winning, we were thankful that Delaney was able to be in her own home.

Anyway, since Stacey’s post yesterday, Delaney seems slightly improved today.  She is still exhausted, run down, and not feeling well.  Although she took three naps today, in between them she at least wanted to sit outside with us for a couple of minutes.  She even rallied to do a couple of crafts with her oldest sister before just wanting to rest.  We are hoping she’ll begin rebounding now a little more each day going forward.  Even though we’ll need to take her in twice a week for check-ups, she gets a break from treatments for the rest of the month.

I just wanted to give a quick update that Delaney was doing a little better today and to thank you for your continued prayers.  I’ll give a special request to all the moms out there.  Tomorrow our vacations are over and we are heading back to work.  Please continue to not only lift up Delaney but also Stacey because as much as she likes her job, it is very, very tough for her to leave her baby at home knowing she isn’t feeling well.  Thank you again!

They warned us this might happen

Delaney has been up to her usual wonderful antics lately. Friends of ours gave her the bike that their son outgrew, being the young hipster she is she started hip hop class, and she even went to Ikea to get a new table for her Legos. Life is good, right? Right!
However, as usual in the cancer world, there is more than meets the eye. You might recall that the goal for the all important indicator of her lab counts (the ANC) is at least 750. Today’s count of 300 was her lowest by far. Because of where she is at in her treatment, they are moving forward with tomorrow’s treatment regardless of her low counts. If they don’t come up with the help of the steroids next week, they’ll take a break until they do. Her counts being where they are right now means that that we just need to be a lot more cognizant that she can get sick really easily right now. So simple things like crowded places (unfortunately even including the line at 7/11 for free slurpees), must be avoided. So life sucks right? Wrong!
We are continually reminded and grateful of just how well Delaney is doing with her treatment. We have a friend that has cancer throughout her body who will have to go for an entire month without treatment while they try to get her counts high enough. We know of three other kids with leukemia that have to get their chemo in the hospital over 24 hours and then can’t leave until it clears their body (one of them had an ANC as low as 7). Unfortunately we keep hearing of lives that were cut way too short because of this awful disease. However, we also keep hearing wonderful words of encouragement and learning of more and more people that are praying for Delaney. I know we have been blessed with some real prayer warriors following Delaney to which we really cannot say thank you enough. To those of you that can spare a few more words with the big guy, I don’t want to be greedy but if you think about it an want to include Neomi, Luca, Jace, Luca, and John that would be great. As for specifics for Delaney, we would just ask that she stays healthy, her counts go back up, and possibly that the docs could figure out whatever is going on with her eyes in the pic below. 🙂 thanks again!

20130711-190154.jpg