4 weeks and 4 baldies

      Delaney is fresh off her first full week of school in the past 5 weeks!  After missing four weeks of school and having cold-like symptoms for over three months, her doctor did some additional scans on her.  He showed us the scan of her nasal cavity and being the doctor that I am NOT, I identified the problem right away, “Aha! That little black dot right there is probably the problem!”  Delaney’s doctor was kind enough to confirm my errant conclusion, “Yep, that’s it, but it isn’t because what you think.”  Apparently the whole scan should have been black.  Delaney’s scan showed one little black dot on one side, and no black at all on the other.  So what it meant was that her nasal cavity was 100% blocked on one side and about 95% on the other.  So besides this preventing her from being able to fight anything, there was a slight fear that it could go to the brain because of its proximity to the nasal cavity.  Long story short, Delaney is now getting IVIG (basically blood or more specifically a plasma product) transfusions once a month.  As much as it isn’t fun for her, it did help her get well enough to go back to school!

       On a different note, a little less than a week ago I signed up to do St. Baldrick’s again.  If you aren’t familiar with it, St. Baldrick’s is a fantastic charity that directly benefits childhood cancer.  They have raised millions and millions of dollars and given it back to the medical community in grants to research the cure and treatments of childhood cancers.  Participants shave their heads to help raise awareness and money for St. Baldrick’s.  So as of tomorrow, I’ll be sporting a buzz again… but that isn’t the exciting part.

        A couple of days after I signed up, a very nice guy that I work with (yet barely even know), said that he would also join Team Delaney: “Cancer Can Kiss my Stache!”  A couple of days after that, a guy that I have met once said that he would also join moving us up to 3 baldies.  My sister was then kind enough to sign up as a donor and a volunteer, but too much of a sissy to shave her head.  However, my wife got a call the other day from Luca’s mom, Molly.  If you don’t remember Luka, she was diagnosed with leukemia only a few days after Delaney (you can read the first post from when we met Luca by clicking here – and I’ll apologize for my first impression of Delaney’s doctor who turned out to be wonderful — I feel like such an idiot when I re-read that part) .  We learned the ropes of Children’s Hospital together while we learned about the terrible disease our daughters were just diagnosed with.  Anyway, Molly called because she saw our post on Facebook that I was doing St. Baldrick’s again, and said that her husband Pete was going to come join us!!!  So I have officially changed our St. Baldrick’s team name to Team Delaney AND Luca: “Cancer can Kiss my Stache!”

     That brings us to 4 Baldies tomorrow and more importantly over $1100 raised for St. Baldrick’s in their fight to make sure that no parents ever need to hear, “We’re sorry to tell you this, but your child has cancer.”

Thank you so much to all the people that have already donated to St. Baldrick’s.  If you would like to join them, you can do so by using this link:  http://www.stbaldricks.org/teams/CancerCanKissMyStache 

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Combs 4 sale!

So Emily and I decided to let Delaney decide what we did for St. Baldrick’s (if anything). Like I already expressed, we were prepared to cut no hair or all of it, we just didn’t want to scare her. As recent as yesterday, we were still planning on no hair.
However, today Delaney thought it would be silly if her Dad got a Mohawk (pity this fool that doesn’t look as good as Mr. T!). She didn’t want Em to do a Mohawk or shave her head, but thought “Locks of Love” was a great idea, so Emily donated about a foot of her hair so someone else that loses their hair can have a wig made out of her former long locks.
Delaney’s Jedi Knights raised over $2300 for St. Baldrick’s Charity. Here is part of the team including Our good friend Wil, Emily, me, and our head Jedi.

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Inspiration!

Delaney had quite the busy day before she was diagnosed with leukemia almost two weeks ago.  Three different doctor’s visits, too many blood draws, and a bunch of people poking her, were no match for Delaney’s silly self.  She had to go potty at one of our stops, so I took her into one of those family restrooms.  She went potty and then it was my turn (TMI, I know).  While going, I heard a very loud, “Really Dad, green underpants?!?!?”  Of course my immediate reply was, “Shhhhhh” which only made her turn it into loud “Mr. Green Underpants” song between giggles.  We exited the bathroom and she immediately told strangers that were walking by, “He is wearing green underpants!” That teasing continued over the next few days in the hospital and was only added to when I stretched while yawning, “Mr. Green Underpants with sweaty armpits!”  Which is obviously a lot more hysterical to a silly little six year old fighting cancer.

Never mind my perspiration (way to go from TMI, to WAY too much TMI!), as this post is about inspiration.  Apparently, our little silly goose is already inspiring lots of people.  Our family continues to be amazed and overwhelmed with all the love shared so I wanted to share just some of the support and inspiration we’ve felt over the past two weeks.  Please know that already it would be impossible for me to share ALL of it and I would get a million emails that said “Yo Tolstoy, can you make your posts shorter?” if I tried.  So even though just a very small fraction of things will be shared here, please know that they are ALL very much appreciated.  Oh, by the way, remember when this was the Worst. Blog. EVER because I talked about the Delaney song and the Ironman song, and then didn’t even put the songs in the post?  I THINK (really hope) I fixed that here.  So before I get started, here is Delaney Talks to Statues by Jimmy Buffett (you might recall that this was the song that sealed the deal on her name).

—Anyway, there have been so many tidbits, that I don’t know where to start, so I’ll begin with the most recent.  Her least favorite medicine is called Troche (my wife will be so proud if I actually got that correct).  She has to suck on it for 20 minutes while it dissolves in her mouth so after she pops it in her mouth, we’ll start the timer for her.  She then immediately runs over to her pen and paper to write, “Time?” Inevitably, the first one comes about 10 seconds in so we have to reply, “Only 19 minutes and 50 seconds left.” We then repeat that about every 20 seconds unless we can come up with some good distractions.  Well, last night, we had some pretty darn entertaining distractions.  Stacey had a couple of  friends drop by with a bottle of wine to do a quick sanity check on her and they all got into it.  Take every bad dance episode of the Gong Show and we had it going on at our house last night.  Between Delaney’s sister Emily, and our two friends, we had: the robot, the worm, the sprinkler, the lawnmower, and a bunch of other crazy moves that all of a sudden made me feel a lot better about my own skills on the dance floor.  More importantly, these ladies checking their pride and just getting silly, turned Delaney’s dreaded Troche experience, into a but gusting good time.

—Some of the sweetest things that stand out to me come from people that may have never even met Delaney or even ANY of our family.    I think I already shared on here about the boy that baked cookies to raise money for her.   What I think I shared on Facebook but not on here, is that a few days later he came back.  Apparently, just like the first time where he just had the idea and did all the work all by himself,  he did it again.  A few days later, he returned with even more money.

Another example that would fall into this category of people that I don’t think have ever had the pleasure of meeting Delaney but still doing extraordinary things, happened just yesterday.  In our mailbox was a letter from a very nice local hotel.  The General Manager heard about Delaney and wanted to drop us a line.  She too is a parent and even has her very own daughter named Delaney. Unfortunately, she also had her own journey with cancer when her Mom was diagnosed.  She too, felt the love and support of many and wanted to share with us so she sent us six gift certificates that can be used to stay at her hotel.  In her words, she sent six because cancer affects the whole family: One can be used for an out of town guest, there is one that maybe Stacey and I could use for some alone time (va va voom!), another maybe Emily could use when home from college, one for when Delaney is feeling better and wants a sleepover and a swim in their pool, another for when Ashley needs a staycation, and with the last one she simply pointed out that before we know it, Mackenzie will be a teenager… ’nuff said!

— One more quick one along the lines of people that have never met Delaney and realistically never will.  This is from my good friend Maria who is in China (Coincidentally, Maria, just grossed out Delaney’s entire kindergarten class before any of this happened.  They were doing a project about how that time of year was spent in other cultures and Maria shared how they eat fun things like fried bats and scorpions over there).  Anyway, here is the unedited email she sent me:

Quick note of love. My Chinese ayi (who makes $450 a month) just brought me an envelope with equivalent to $150 for Delaney. That is a full quarter of her salary! She is so awesome. She said in Chinese, “That little girl in the pictures is worth more money than I could ever give.” She lives paycheck by paycheck and sends half of her salary every month to her father who is in hospice care. I’m sorry, I didn’t take the money from her and said that we can do something special together to send. She said, “If they run out of money than you have to let me help them.” Wow. What an impact Delaney has on this world.

—Many stories of people braving their own pain and troubles with the resounding theme of, “If Delaney can do it, I can do it.”

—The generosity of so many family, friends, neighbors, co-workers, parents from school, the Kiwanis, a sorority at Emily’s college, strangers, friends of friends, friends of ours from grade school, high school, college, friends on Facebook, and future friends that we haven’t even met yet!  We’ve received dinners, cards, gift certificates, prayers (apparently walking into a bar isn’t the only thing a Priest, a Rabbi, and a Pastor have in common, because they have all also led prayer sessions for Delaney), emails, texts, comments, money, blankets, posters, stuffed animals, mustaches, toys, cows, Broncos apparel, more mustaches, hats, movies, gifts,  and even a (free) bundt cake!  I don’t know how we’ll ever be able to express our gratitude for all this love and incredible generosity.

I’m not sure if the Delaney Song is done playing yet, but here is the Iron Man song.  With Delaney having the port in her chest and Iron Man having the electromagnet in his, she gets that comparison a lot.  I quickly tried to refresh my memory on why Iron Man had it in his chest, and here was the part I really liked as it will also apply to Delaney too: “Eventually, he gets the medical condition fixed and the device removed.”  The song gets associated because it inspired me through my first ironman (an endurance event that has nothing to do with the super hero). However, because this will be a much longer endurance event, and this post is titled “inspiration”, I’m sharing it with you here (aren’t you glad I didn’t go with “Perspiration” so you don’t have to watch Richard Simmons sweat to the oldies?)

—Even a lot of the comments on this blog.  The comments about Delaney being the hero to so many of you, the parents of her classmates sharing how they just can’t wait to play with her again, and the fact that the prayers being lifted up for her have literally spanned the globe.  So many of you have shared how she has already affected your own lives in so many positive ways, and that is just awesome that even in terrible things like cancer, there is still so much good.

—This isn’t really inspirational, so much as it is a life lesson that I want to share so you hopefully don’t have to learn it the way I did: There have been people (unfortunately plural), who based off my first impression when meeting them before this (non) adventure, that maybe I didn’t think too highly of.  I am really ashamed to admit that some of those people have been some of the nicest people through this whole ordeal.   Going forward, I am going to attempt to give people the benefit of the doubt as it really is true, you never know what people are going through.

—-Today’s St. Baldrick’s event: Through the generous donations of so many people, “Delaney’s Jedi Knights” raised over $2,000 for this fantastic charity.  At 11 AM today, we will be attending the fun where I know some friends of ours (including new ones), will be shaving their heads in Delaney’s honor and to promote cancer awareness.  I don’t know that any of my family will be doing any shaving yet, as we are leaving that up to Delaney.  However, I am thinking that I am not going to let my nine year old Ashley shave her head, as right now I really want her to keep HER identity (I am mentioning this here so friends that see this hopefully will not ask her if she is shaving her head).

—–Finally, Delaney’s own generosity. With all the gifts that Delaney received, she received one that was maybe a little too girly for her.  So she took the pink princess set, added candy from her overflowing collection, and wanted to give it to that little girl Luca (and her sister Kaia) that she met in the hospital.  We took a large bag filled with toys and candy with us to Delaney’s chemo appointment on Friday, but they were already discharged.  It wasn’t too tough finding another little, suddenly very excited, girl to give it to.  There was Delaney going in to basically get poison injected into her own body, and she was thinking about how she can brighten the day of others.