Chutes and Ladders

We haven’t played in a while, but Delaney and I used to play quite a bit of Chutes and Ladders.  I’m pretty sure if we played 100 games together, she won about 157 of them.  She didn’t seem to quite grasp the concept of getting to go up the ladder but having to go down the chute if you landed on it.  She would land on the bottom of a slide, start giggling, and then move her game piece all the way to the top of the chute.  Or at least she used to this.  She tried it one to many times so I decided to teach her a lesson by breaking her finger.  Okay, not really, just seeing if anyone actually reads this.  Anyway, leukemia is a lot like Chutes and Ladders.

In the game you start cruising along, get to move forward three spaces, and then break the cookie jar because you are a little glutton who should have just said no.  Instead of a cookie, you get to slide down about four rows and wonder aloud whether the game will ever end.  Well with leukemia, your child is cruising along doing well, puts her hand in a cookie jar, doesn’t realize that some kid with a runny nose beat her to the jar, and that her glutton dad ate all the cookies anyway, which unfortunately left no cookies but plenty of germs for the girl with the low white blood cell count.  Instead of sliding down four rows, she ends up back in the doctor’s office or ER getting poked and prodded.  Good times.

Unlike Chutes and Ladders, the Consolidation Phase actually is coming to an end.  We are less than 48 hours away from it being done and done (Two months down and 25 left to go).  Out with the old, and in with the Interim Maintenance (I) Phase.  Gone will be the three consecutive lumbar punctures and the daily oral chemo.  Instead of going every Friday, it will move to every ten days.  Even though it seems like we get to spend less time at the doctor’s office, we actually pick up an extra day.  They will have to make sure her cell counts are high enough for her to tolerate the type of  chemo she will be getting,  so she needs to get her labs checked the day before the treatment.  One  minor bonus of moving from every seven days to every ten days, is she hopefully gets her Fridays back.  When the rest of the world was screaming TGIF, Delaney was telling us that she didn’t like Fridays.  Cancer or no cancer, I refuse to let a child of mine NOT like Fridays!

Let me be serious and just state the obvious for a moment: cancer is nothing like chutes and ladders.  In fact, there is nothing funny at all about cancer, nor is there anything even slightly cute about it.  I really hope that nobody misinterprets my pathetic attempt at humor or a silly “Cancer can Kiss my Stache!” saying as me making light of cancer.  I have lost friends to cancer.  I have more than one friend who have cancer throughout their body as I write this.  It is very sad.  Nowhere near that extent, but as a father I found it heart breaking this past weekend when my beautiful six year old daughter told my wife while crying, “Mommy, nobody thinks that I am beautiful any more. ”  Unfortunately, there is a LOT more that I could share that would probably make the strongest among you cry.  That isn’t my goal here, but I sincerely wish cancer never existed.  For those of that happen to read this that are either personally dealing with cancer or possibly lost a loved one to it, please know that I am not making light of this horrible disease.  My (lack of) humor is how I deal with things and if a silly mustache on a shirt or a bracelet brings a sick child joy, I am all for it.  Thank you for hopefully understanding.  I think most of you already get this and are wondering why in the heck I am even saying this.  I just want to make it clear that I would never make light of this horrible disease or to the many, many people who have succumbed to it.  To the people that do already get this and maybe even my sense of humor (Mom, I’m looking at you here), I’ll just say, “Keep your grubby paws out of my cookie jar!!!”

Love

FIRST ENCOUNTER

~ although we like to tell people we met at church, we actually met at a meat market. Not a meat market as in “Al’s meats” mind you, but a bar so sleazy that you swore you would never go on a single date with anyone you met there.

~ the real name of the establishment was Chester Drawers, but everyone knew it as either “Check for sores” or “Drop your drawers!”

~SHE offered to buy ME a beer… and had me at, “Can I…”

COURTSHIP

~On our first date, Stacey had to become like a cross between a ninja and Chuck Norris to deflect my advancing Ralph Furley-like loose lips.

~When we finally did smooch, it had the oh so romantic setting of in the street while standing next to my primered car door.

~ I attempted (unsuccessfully) to get to 2nd base on my parents driveway.

~ In what was a friendly tennis game, she made the mistake of setting me up with an easy lob at the net. In an instant, I turned into Focker, and smashed one directly at her at a speed that John McEnroe himself would have been proud of.

~ Obviously I knocked some sense into her, because we were engaged just 4 months after we met.

~ the first time Stacey met my parents, she was served Mom’s famous lasagna. As sheer luck would have it, lasagna happened to be one of Stacey’s favorite meals. Ummm… Mom, your lasagna tastes a little different tonight, what did you put in it? Oh… Of course… Tofu. Yum!

~We had our bachelor/bachelorette parties in Vegas on the same weekend. We weren’t planning to see each other, but for some reason her slightly inebriated fiancé getting escorted (okay dragged) out of the casino by the nice muscular men caught her attention and we combined parties (note to anyone going to Vegas- the dealers don’t like to be told repeatedly to take the parrot off their shoulders and to “gently place” them elsewhere. — especially when only the slightly inebriated man can see said parrots.

MARRIED LIFE

~ we started out in the San Francisco Bay Area where Stacey had to cross the Bay Bridge to get to work every morning. Her car broke down once on the middle of the very heavily commuted bridge at about five on a dark and very foggy morning. When she called her knight in shining armor to come save her, she was met with a resounding zzzzzzzz….

~ many people have a “5 second rule,” when it comes to meat, I have a “well nothing is growing on it yet” rule.

~Stacey mentioned that she thought the best Mexican food came from “dive restaurants”. For some reason she wasn’t impressed when I took her out on what I thought would be a romantic date to a gas station.

~ I don’t mean to brag, but I am a really good gift giver. Some of the gems that has she has received on special occasions and holidays include a scale and “the gift” of intimacy.

~ nobody confused me with Albert Einstein, when we were running low on formula so I substituted heavy whipping cream in the baby’s bottle.

~ I once won a sales contest that paid for me and a guest to travel through the romantic countryside of Portugal. To this day, Stacey still has never been to Europe as I took one of my brothers on that trip.

~ On our 15th wedding anniversary, I started a special savings account to take her to Greece for our 20th anniversary. I recently changed my language preference on that account to Spanish in hopes that my balance might go from a couple of bucks to muchos pesos.

~ I have a feeling that I’ll be saying, “What??? You remember me saying Greece as in the country??? Well I have a photographic memory, and I am pretty sure I said that I would take you to the romantic City of Greeley, Colorado.”

I better stop before all the women reading this attempt to leave their own husbands to find themselves a peach like me. Why in the world am I writing this??? Because sixteen years ago today, I had the privilege and honor of marrying my very beautiful wife. If our relationship has survived all of those things, it’ll survive Delaney’s leukemia.
I am not going to lie, cancer is very tough on a marriage. For some reason I don’t think the secret potion on Cupid’s arrows consists of lots of stress, increased irritability, lack of sleep, the feeling of helplessness that you can’t even protect your own family, sadness, fear, and more stress. I remember something our Pastor said to us while we were praying together on Day One of her leukemia diagnosis: he said God had already blessed Delaney with two parents who not only love her, but also love each other very much. He was right.
The next day as we were waiting for Delaney to get out of surgery, we started talking to the woman that worked the desk of the post-operation waiting room. As our daughter was getting her port put in, she was telling us about a couple who were in the day before to get their child’s port removed. The mother of that child commented, “We survived.” The waiting room employee mistakenly thought she was referring to her child and said, “Oh yeah, he did great.” The child’s mother corrected her, “No, WE, as in my husband and I, WE survived.” And as they did, we will do also.
Later a friend, who is an elder at our old church in Texas, called to say that he and all of the elders were not only praying for Delaney, but also specifically for me and Stacey and that we would be drawn closer together because of what we were going through. Our conversation reminded me that cancer could be a very big problem in a lot of different ways, but it was nowhere even close to being as big as our God.
So today, on our 16th wedding anniversary, I just want to tell my wife who has stuck with me as I got thick and thicker, who if possible is more beautiful on the inside than she is on the outside, who is the brains of this outfit, who under that hair dye is as grey as a mule, who puts up with dumb jokes like that, who is such an amazing mother and my best friend and sometimes nemesis, that she is so much stronger than she realizes and that I love her even more today than I did on that day sixteen years ago when she took my breath away as she walked down the aisle.
Cancer will not be the end of us. My gas maybe, but not cancer. I love you more than you know and look forward to celebrating about 47 more wedding anniversaries with you. And I am sorry you have to wait so long, but it’ll all be worth it: you are going to just love Greeley.

Article from Emily’s College

You early readers might remember Delaney’s oldest sister, Emily.  A woman that writes for the newspaper at her college, Webster University in St. Louis, interviewed Emily for an article about Delaney.   I’m not sure the link will work on the blog, but I am going to attempt to attach it below.  For those of you that are also on her facebook page, I am sorry about the double post.  Just so I don’t have to give a triple post, I’ll also give a brief update here.

Today has basically brought changes almost every hour.  As soon as I posted the update this morning about her fever going away, it shot right back above 100.  Then a little later, it went away again and she was doing great.  She then took a long nap and just woke up crying and her fever (but no headache) was back.  Stacey just talked to the doctor and it sounds like if she isn’t better tomorrow, we’ll be right back in there so they can start her on a new antibiotic regimen.

Here is the link to the article.  Also check out the video that the reporter shot with Emily.  I can’t help but notice how drastically leukemia has already affected her appearance in just two months.  I always knew she was so beautiful, but I may have underestimated her strength!

http://websterjournal.com/2013/04/24/video-student-struggles-with-6-year-old-sister%E2%80%99s-leukemia-diagnosis/

Anyone awake? More prayers please.

Delaney’s fever is now above 102 so Stacey was just instructed to take her to the E.R. so they can take her labs again. It is a little before 2 AM MST, which is only about 14 hours since her labs were taken last. I am not sure how much labs can really change in that time, but the doctor wanted her taken to the Emergency Room. I won’t question them, I’ll only ask anyone who is awake to join me in praying for Delaney (and if you don’t mind, her oh so strong Mommy). Thank you!!!!

It’s like a training bra for your wrist!

I can tell that I haven’t done a good job of updating the blog when I get questions as to how Delaney’s circus performance went. Sorry about being a slacker (she wasn’t able to make the performance by the way).
All in all, she has been doing okay. The daily ups and downs of leukemia continue. Saturday was great. Sunday started out good, then at about lunchtime she wasn’t feeling well. Since Sunday, she has been getting headaches. This morning she woke up sobbing because she was in so much pain. The doc said to bring her on, so they are giving her fluids through her port right now (he said sometimes kids get headaches after 2-3 lumbar punctures in a row OR it could just be a cold).
On a much more exciting note, Delaney’s support bracelets came in yesterday. A special thank you to her classmate Macayla and her entire family for doing all of the work. What was really cool was Delaney got to pick the colors, design, etc. and they turned out great! While I am thanking folks, her Uncle Matt created a website (www.cancercankissmystache.com) to make it easy for people that want a bracelet to order one.
Please note that these are Support Bracelets and not Get Rich bracelets. We had to put a price on the website so we put $5, but if you can’t afford that or if you just know a special kid that would enjoy one, please just email prayersfordelaney@gmail.com and let me know and I will be happy to send one off! On that note, he also put a donation link on there. If that is something you are interested in, please let me know if there is a special person or place that I could send some to (Today I gave some to her Doc’s office for their other patients fighting cancer).
Considering the amount of school she is missing, we are going to try to make this educational for her by getting a map and having her stick a pin it for every place her “Cancer can Kiss My Stache” message is being sent to. It should be fun! Below is a pic of the bracelet or you can go to http://www.cancercankissmystache.com to see a better pic. Thank you everyone for your continued prayers and support!!!

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Prayers for a clown

There are many selfish prayers out there. Trust me, I should know, I’ve probably prayed all of them. Today’s prayer request could easily be classified as selfish as I am not praying for world peace (not even whirrled peas) or an end to hunger, today I am just requesting prayers for a clown.
Delaney has her last lumbar puncture of the consolidation phase today. It should be identical to last Friday’s chemo treatment, which is part of the concern. After last week’s treatment, she didn’t feel well and was completely wiped out the rest of the day. If the same thing happens today, she’ll probably miss the circus performance that her kindergarten class is putting on this afternoon. After practicing the songs every time we were in the car and actually making the dress rehearsal yesterday, Delaney is all set to be a mustached (shocker) clown today and we are really hoping she can make it.
I am guessing that you can still recall your own early performances, I know that I can. Me and Todd Jackson were a horse in Mrs. McGinnis’ 2nd grade play. Not horses, mind you, ONE horse. Todd was the front of the horse and I was… well… maybe things haven’t changed much so let’s just get back to Delaney!
Anyway, if she doesn’t feel well enough to perform, it won’t be the end of the world. If she isn’t up to it, we definitely aren’t going to further jeopardize her health by pushing her to go. However, if she is feeling well enough, we would love for her to have about twenty minutes of feeling like a normal kid again. Not necessarily a “brave little girl fighting cancer” kind of normal, but a silly little goofball just singing songs while giggling and having fun with her friends kind of normal.
Okay, as I have the news on in the background, I am changing my mind. I am praying for the people of Boston, praying for the victims, the men and women risking their lives, and everyone involved. I am continuing to pray for all those who have recently touched my life with their own battles against cancer.  On a purely selfish note, today, I will also be praying for our silly little clown.

A tale of a few very different packages

I hope this isn’t inappropriate or come off wrong in any way. My wife (aka. my common sense) tells me that if I have to ask, I probably shouldn’t say it, but she’s at work, so here goes. Let me first point out that I had two friends run the Boston Marathon yesterday. In fact, one of them even wrote “Cancer can kiss my Stache” and drew a mustache on her arm to honor Delaney (I put the pic on the Facebook page). Both runners I knew did great and more importantly, both are fine. Unfortunately, as we all know by now, that isn’t the case for everyone else that was there.

Why? Because a coward or some cowards left some packages with explosives intended to kill or maim as many people as possible. As of right now, they don’t know who did this or the reasons. I’m home with Delaney who isn’t feeling so hot today so I won’t be watching this tragedy over and over again in the news (not that I am better than that by any means, I just don’t think she needs to see it). If I could watch I would want to learn more about the three people dead including an 8 year old child and over 100 people injured. With each different camera angle or different eyewitness, we are reminded over and over again of the evil that was done via some packages in Boston yesterday.

At almost the same time the explosions were happening at the finish line, a mail carrier was delivering a package to Highlands Ranch, Colorado. All you had to do was see the picture of the big mustache in the middle and all the mustaches that decorated  the envelope to know that it was addressed to Delaney. Inside were 22 handmade cards from students in Rossmoor, California who will probably never meet Delaney (a lot of them are the same age of the little boy who lost his life yesterday in Boston). As opposed to the terrorism in Boston, there was no evil in this package. There was only love.

Martin Luther King Jr. said, “When evil men plot, good men must plan. When evil men burn and bomb, good men must build and bind. When evil men shout ugly words of hatred, good men must commit themselves to the glories of love.” I don’t know that I would call myself a “good” man, but these excerpts from some of the cards are my attempt to share the glories of love from a group of 7, 8, and 9 year olds that make up “The Stu Crew” of Mrs. Stuart’s Class:

~Dear Delaney, I think you are being a super trooper. You are the prettiest girl I’ve ever seen.

~Dear Delaney, I hope you get so much better you are way more braver than me and I’m 9 years old! You’re probably smarter than me. You’re so cute you should be a model!

~You are very funny! I am in the second grade. I love soccer too! My team is called the Blue Dolphins. You are very nice!

~ I think you are very very cute and pretty. You are a great hero. I think you are so so smart. Do you know I have red hair too!

~I think you are cute from head to toe. I went to the beach before and watched whales. Did you know I like tennis?

~ Dear Delaney, You are a real trooper. Leukemia will not beat you! You are a generous, cute, and pretty girl! You are a roll motel for people in hard time. My grandma’s best friend has a desese, but there will be a cure for her and espeshialy you! You are a great hero for many people! (including me) :). GET WELL SOON! Sincerily,Brooklyn Nicole.

Me too Brooklyn Nicole, me too!

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It’s NOT a Toomah!!!

      Delaney is back in school!  Hip hip hooray!!!   This is really great news because after I was doing my “This consolidation phase is so great!” dance last week, she took a little turn for the worse.  She did her chemo routine on Friday, but unlike the prior week when she felt so well afterwards, this time she felt really crummy afterwards.  She then came home and slept for three hours.  The doctors advised that was to be expected and the fluke was that she was feeling so well the prior week.  Her ANC count (tells us how well she can fight an infection among other things) dropped significantly (from about 1800 to 800). She was pretty run down all weekend, so today’s return to school became a little dicey.  However, she woke up feeling well (actually very silly), so back to school she went!

        As soon as I am done with this update, I am going to call my boss and tell him that I quit.  I enjoy my job, but I never knew exactly how much fun kindergartner teachers must have all day.  Have you ever seen the movie, “Kindergarten Cop” with Arnold Schwartzenegger?  Well we just lived it!  A couple of women from ChildLife came to Delaney’s school to talk to the class and here is how it went down:

 

ChildLife: Does anyone know why Delaney was in the hospital?

Student: She had a really bad cold.

 

ChildLife: Has anyone ever heard of chemotherapy?

Student: When I am in 4th grade, I am moving to Florida and we’ll have two swimming pools?

 

CL: Does anyone know what the medicine does for Delaney

Student:  Makes her chubby 😦

 

The ChildLife women also went over an explanation of white cells, red cells, and platelets.  They explained the importance of washing our hands, controlling germs, and staying home when we are sick. Any questions?

Student: My dad had a blood clot.

 

CL: Oh, I’m sorry.  We know what causes blood clots, but nobody really knows what causes cancer.

Student: God does.

 

 

CL: Okay, I think you guys are ready for a test, what do you think?

Student (who shot up his hand super fast): I can pass any swimming lesson test!

 

CL: Okay, that’s not really a question, are there any other questions?

Student: Why do flowers have roots?

 

CL: Great question, but are there any more questions about Delaney or her sickness?

Student: My brother threw up in our hot tub yesterday!

        Before any of the kids had a chance to bring up the birds and the bees, they called it a wrap. Anyway, Delaney got to stay for almost two hours today and her teacher said that after all the adults left, everything went right back to normal.  Please pray for her sanity.

 

 

Just wondering!

Here is a dialog that happens far to often in our house.

Any one of my four daughters: Dad, what was I like as a baby?

Me: I don’t know. Where’s your mother? Why do you ask me these dumb questions?

Daughter: I’m just wondering!

At this point, I always have to make a tough decision. I could be honest, and just let them know I have absolutely no idea what they were like as a baby. I could possibly say something along the lines of, “You were stinky and made a lot of weird bodily noises, you know… just like you are now.” I can barely remember what I had for breakfast an hour ago (hopefully some delicious bacon), never mind trying to remember what one of my kids was like years ago.

I’m not sure if this is a flaw that all parents share, but I can never picture my kids at prior ages or stages of life. When they were three years old, I didn’t have even a vague memory of what they were like at age one or two. I could probably blame my own parents, who at least had an excuse because I was the 2nd youngest of 8 kids. One time, I made the mistake of asking my Mom if she had any baby pictures of me. She rifled through a bunch of pictures of my siblings, went through the ads of that day’s paper, then some old magazines, and finally found “my” baby picture. I don’t mean to brag, but I must say that when I was a baby I had a really good tan and the most beautiful afro. Anyway, I usually just decide to answer my kids by making something up in these situations.

Me: Oh, when YOU were a baby your nose was in the back of your head, and you had a tail that any horse would envy!

Today kicks off week number two of Delaney’s “Consolidation Phase”. She goes in for chemo again (only in the spine today). I am not counting on it continuing to go so well, but so far the Consolidation Phase has really been going okay. I say that it may not continue to go so well because the doctors have explained that chemo has a residual affect. So basically the poison they shoot into her spine today gets added to the poison they gave her last week. The more it builds up, the higher the probability that she will start to feel crummy. I’m not smart enough to worry about things like probability, so for now let me just tell you a little bit about the consolidation phase.

Although technically this phase last four weeks, there are only three lumbar punctures. So, since this is already # 2, you could say she is almost half way through this phase (okay, not really because she’ll still have to take the oral chemo every day this month, but let’s think positive). She is doing great! No more crazy leg pains, no more troche (the drug she had to keep in her mouth for 20 minutes at a time), and no more steroids (at least for now anyways)!

Yesterday she had her first home-school class and Monday she gets to go back to her own kindergarten class! If she is feeling well enough tomorrow, she will get to go to a birthday party and then even join her soccer pals to take their team pictures. She is really back to her normal little goofball self and getting to be a kid again! I never thought I would say this, but “Yeah consolidation phase!” Which now has me just wondering. Is the day going to come when I am supposed to remember how these different phases of leukemia treatment were? I can already see it now:

Delaney: Dad, how was I in the induction phase?

Me: Oh, that was the really wicked phase. The side effects of the chemo were so bad that they moved your nose to the back of your head, and gave you a tail that any horse would envy!

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