Conversations, emotions, and winding it all down

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“It seems like just yesterday, when you called us to see if we could take Mackenzie for you.”  I was having a conversation with a good friend last night and he was referencing the day that my wife and I will never forget.  It was when we first got that call instructing us to immediately head to the Children’s Hospital where they where awaiting our arrival in the emergency room.  They continued by informing us that they thought our youngest daughter Delaney had leukemia.  As our hearts sunk, we needed to find someone to take care of our other kids.  We had no idea how long we would be in the hospital with Delaney, we just knew we needed to be with her.   It seems like just yesterday, but it was actually about 800 “yesterdays” ago.

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After over two years of treatment, this past Friday was Delaney’s very last IV chemo.  WOOHOO!!!  My wife brought a card to say thank and a cake as we were ready to partayyy.  Even as we were pulling up to the hospital, we got the call to schedule the surgery to remove the port from her chest.  It is official, Delaney is definitely winding down her (non) adventures with cancer.

Before we went to her appointment, I called my wife to check in on her.  “I’m an emotional mess!” she admitted.  We are beyond thrilled for her to be done.  But, I guess if we are honest, we are also nervous and even a little fearful. For the past two years, she has had an entire medical team watching out for her.  What if something happens to her after Tuesday?  When and what do we need to worry about after this?  I have no idea, but I can’t help but be reminded that “Do not fear” appears 365 times in the Bible… one for every day of the year.

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“Do you know our kids have prayed for Delaney every single night for the past two years?”   I heard this again last night.  We’ve heard different forms of this, my son or daughter, my mom, our family, or I have prayed for your daughter….  We appreciate every single prayer said for her and for us.  I hope someday Delaney will understand how many people she had praying for her.  So many of them, we have never even met and probably never will this side of Heaven.   Thank you.  By the way, at that same function (and by “function” I mean watch the fight and play some poker party) a guy was wearing a “Cancer Can Kiss my Stache!” shirt.  I don’t know if he even knows who Delaney is or her story, but I love it.  Same for all those folks that have been wearing a rubber bracelet with the same message for the past two years, thank you.  I know I’ve said it before, but we can’t even begin to thank so, SO many people for their kindness shown to our daughter and to us.

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At Friday’s appointment, we met with her doctor and he filled us in what it would look like from here.  One of the things he wanted to make us aware of is how long it will take her immune system to fully recover.  It sounds like we can expect about six months for her immune system to be back to 100%.  She will continue to take one of her antibiotic pills for the next three months to help with that.  On that note, he wanted to see if there was anything that could be done about her persistent cough so he ordered a CT scan of her sinuses. That was one more affirmation that she is almost done as we get to wait a week for the results of the scan.

Anyway, some folks have asked what happens from here.   Along with getting her last IV chemo on Friday, she  also started her last five days of oral chemo and steroids.  On May 5th, mere hours away, she’ll get to take her very last oral chemo and finish her steroids (I’ve got to be honest, we are not going to miss the steroids one bit)!  After that, she’ll go back in once a month to see her doctor and to get labs drawn.  After 12 months of that, assuming all is still good, she’ll go to every other month.  Then every three months, and so on.  Eventually she’ll only have to go once a year, and that will pretty much be for life.  Within the next couple of years, we will go to something called the Hope Clinic where they will further educate us on, and watch for, the long term side effects of her treatment.

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Tonight, my wife was brushing Delaney’s hair and they were being silly together.  Delaney even allowed her to pull her hair back in a ponytail, and she observed that her hair was now almost as long as when she was first diagnosed.  “Don’t cry mommy,” Delaney told her.

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As for Delaney, she is doing amazing even during this steroid week.  She followed up Friday’s chemo by playing in her soccer game Saturday and Sunday.  As excited as we are for her to take her very last chemo on Tuesday and get her port out on Thursday, she is probably even more excited to perform a hip hop routine with one of her best friends in her school’s talent show on Wednesday.  After all, she is just a (very cool) kid!

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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.

Meet (some of) the supporting cast

As it turns out, this is going to be a long (non) adventure. I apologize if I already told you, but WHEN (not if) all goes well, Delaney is looking at 2 years and 8 months of chemotherapy. A not so fun fact for you, if she was a boy a whole year would be added to that time. If all the guys are thinking, “Nuts!” They are correct. Apparently it is because the cancer will hide down there requiring boys a full extra year. Anyway, because it is such a long process and because Delaney isn’t an only child, I figured that I would introduce you to the rest of the family.
I am not sure there is anyone that Delaney adores more than her oldest sister. Emily, 18, is a stud volleyball player at her college. She is an Art Major and would like to teach someday (or at least hang out at Starbucks and pretend to be snooty while discussing Picasso or Van Goober or something).
Mackenzie, 12, is our actress and performer. She has a heart of gold (Em’s is probably only gold plated) and also enjoys swimming and helping to lead worship for the kids at our church. She is in 6th grade and currently rocking the straight A’s.
Ashley, 9, hmm… How do I describe Ashley? Well, yesterday we passed the anesthesiologist in the hall so I introduced him to Ashley. He put out his hand and Ashley reached up and rubbed his very bald head! That’s Ashley. If we lived in Boston instead of Denver, I would say she is wicked smaht. She plays soccer and loves all things pig (and when I say all things pig I mean grown pigs, piglets, bacon, ham…).
Mom Stacey wears many hats. Some of you know her as Nurse Stacey because she is a kick butt nurse. Others know her as friend Stacey and she is fun, loyal, and much better than any golden retriever that I am making her sound like here