Childhood Cancer: A year in review

One year ago today. There are parts of that day that I can remember like it was yesterday. More than anything, I remember feeling helpless as a father and as a husband. My wife had just received the call that we had been waiting for that would let us know our daughter Delaney’s lab results. A little swelling below the ear couldn’t be serious, right? I watched anxiously as she moved from the kitchen to the study to take the call away from the kids. I held my breath as my wife tried to keep her composure while listening to our primary doctor. With one last “okay, thank you” she hung up and then told me that we needed to immediately get Delaney to the emergency room where they had a room waiting for us. As our doctor said, “Now is the time to call on any support you might have as we think your daughter has a type of blood cancer called leukemia.” The world briefly stopped while my wife and I collapsed into each other. We just held each other and cried. I was quickly a scared man who was powerless to protect his own family.

~~~Here is a pic that was taken just a few months before her diagnosis:
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In the beginning, the not knowing was the worst. Will she be okay during the surgery to put a port into her chest? What about during her first chemotherapy treatment? What type of leukemia does she have? Are you sure she is even sick? What is the survival rate? What are the chances of our daughter… not surviving? When will we be able to leave the hospital? When, if ever, will our lives get back to “normal”? Are we going to be able to care for her at home? When will her hair start falling out? Will she be able to finish up kindergarten with her friends at school? How will we be able to continue working?

~~~Smiling during her very first dose of chemo
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It was tough. Eventually we got answers to most of our questions. It was still the uncertainty that ate at me. I remember putting on a brave face when having to face people for the first time because I knew that I was going to have to talk about it. When I returned to work, I purposely wore a hooded jacket. There were times when all I could do was sit at my desk and weep like a baby. I tried unsuccessfully to distract myself with my work. When it got too bad, I would put on my hood to block my face so others wouldn’t know. I know one of my co-workers knew but his father had his own battle with cancer so he could at least kind of empathize with me.

~~~It may have been tough, but this little stud is tougher!
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There were a couple of things that helped us overcome the tough times. The first was Delaney herself. When we sat there in shock listening to a doctor describe the different effects of the medicine they were going to give her or what procedures they were going to perform on her, her only question was, “When you are done can I wake up with a mustache?”

~~~Ahhh… the silly mustache. Who knew that it would inspire the “Cancer can kiss my stache!” movement?
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But more than that, was the overwhelming kindness, love, and support. It came (and still comes) from family, friends, co-workers, churches, entire schools, complete strangers, and just about every place imaginable. Just this past Sunday our doorbell rang. There stood the sweet neighbohood boy with his familiar bag of cookies and the money he made from selling them door to door. It has been a year and this boy still goes door to door to raise money to give to Delaney! Seriously if anyone knows of an award that we can nominate him for or some other way we could publicly recognize him, please let us know. My wife and I probably shed more tears from just being amazed over, and over, and over again at people’s kindness than we have with the actual cancer. Okay, maybe not… but it feels like it.

~~~Elated by the kindness of our friends at the Littleton Fire Department as she gets to ride in the fire truck
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As for Delaney, she just took it all in stride like the little trooper she is. Back to the doctor’s office? Okay. I’ve got to get treatment today? Do you think the nurses will sing “Dynamite” to me? My hair will start to fall out? Maybe I can get a cool Bronco’s hat! Sure she got sick of the pokes, the treatments, not being able to participate in so many fun things because her counts were too low or she wasn’t feeling well enough, and all the other junk that goes along with childhood cancer, but there were very, very few times she really let it get to her. I can probably count on one hand how many times she ever felt sorry for herself.

~~~Proving that bald really is beautiful!
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Of course, the one time that she really let it get to her broke my heart so much that I probably will never forget it. It was April 26th of last year (okay… I’ll admit that I only remember the date because it was our anniversary). Delaney had the moon face thanks to the steroids she was taking. Her once skinny little 40 lb. frame had gained 10 lbs. in just over a month. It looked like it was all in her cheeks, but by no means was it a cute “chubby cheek” type of thing. She didn’t feel well, and the steroids were running rampant on her emotions, and she just lost it. “Why mommy? Why? I just want to be beautiful and feel like the other little girls,” she cried. Besides trying to reassure her that she IS beautiful, what do you say?

~~~She may have had “moon face,” but she will always be beautiful!
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There were other things that may have bugged her, but really bugged my wife and me. The kids at school, not necessarily being mean, but just being kids, asking her why she is trying to use the girl’s bathroom. The little girl at church trying to argue with the teacher when he announced that another girl was joining the class. Of course, it doesn’t help that our daughter is such a little tomboy. I was asked not too long ago if it bugged us, why not dress her up in pink so people would know she is a girl? Most of you are parents, think about it for yourself. Do you want your kids to be themselves or pretend to be something they are not to please others? We want all of our kids to have the courage to be themselves. So we would never force our daughter, who answers the nurses question of “Do you have any allergies?” with “Yes. The color pink” to pretend to be something she is not. Would being decked out in a pink pretty dress with a big bow on her head help people recognize that she is a girl? Probably. And then Delaney is no longer her silly quarky blue loving, bow tie wearing, what little hair I have I am going to put into a mohawk, mustached self and cancer wins… and that will NEVER happen!

~~~Hmmm… maybe if she wore a nice Justin Beaver wig people could tell she is a girl. Doesn’t she look excited by this?
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At one point I was hoping to put our whole Non-Adventure into a book, but realistically that will probably never happen (although it would probably be the first book with negative sales). But in the longshot that some other parents might come across this who have their own child with a recent similar diagnosis, I’ll share two very valuable lessons that we have learned this past year. The first is to realize that your child is going to react to whatever you react to and in a very similar fashion. Fortunately, we learned this very quickly. On that early evening a year ago as we headed to the hospital we couldn’t stop our tears. So what did Delaney do? She cried. We were scared and so was she. We quickly realized that the opposite was also true. If we were brave and confident she was going to be okay, so was she. That first week in the hospital we had times that we were so overcomed with emotion and we would just walk out of the room so she wouldn’t see mommy or daddy crying. Realize that your child and their classmates or friends might associate the word “cancer” with death. We literally when into her classroom and told them, “Just because Johnny’s grandpa died of cancer, does not mean Delaney is going to die of cancer.” Along with explaining how there are different types of cancer, we also explained that, “Yes, she is sick. But, NO, you cannot catch it.” We didn’t want her classmates to be afraid to play with her because they were afraid to catch what she had. And thank God, they didn’t. Her class embraced her and continued to love her. They knew that she wouldn’t be able to be in class all the time, but when she was able to make it, she was just another crazy kid who they played with and had fun with. They also knew that when her hair started falling out, it was a sign that “the medicine was working.” The hospital staff shared that one with us and we thought it was good.

~~~Who are you calling crazzzzy????
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The second thing I would share with other parents who have a child facing a similar illness is a little more personal, but because of its importance, I’ll share it openly anyway. Cancer is very tough on a marriage. Whatever stress you had in your marriage prior to the diagnosis is still there, but now you have a whole lot more of it. Early on, after continually snapping at each other, my wife and I had a conversation where we said, “We are going to need to be more forgiving with each other than ever.” Is my wife perfect? No. Am I perfect? Yes! I am kidding, of course, but we should have set a daily reminder that forgiveness was now, more than ever,a necessity if we wanted our marriage to survive this. There were times, like most marriages, where we just wanted to throw in the towel. But then there was the realization of, “And how would that help?” Delaney is one of our four daughters. She isn’t the only one affected by cancer and my wife and I definitely are not the only ones. Our entire family has faced Delaney’s cancer together, and as a family we will continue to fight it together.

~~~A family that goofs together, stays together!
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So Delaney is now 365 days into her cancer treatment and has over 500 days remaining. WE have reached the “new normal” that one of the doctors told us about early on. We are slightly more, but still far from totally, comfortable on a daily basis. Delaney has missed 3 of the past 4 weeks of school because thanks to low counts, her body can’t fight a basic cold. She has these weird pains in her foot and there is a real fear that the steroids are causing necrosis, which essentially destroys the bones. At least week’s doctor’s visit due to foot pain, I was expecting to get an update from my wife. When it didn’t come… and still didn’t come… my mind went to, “What if they are saying they need to amputate?” Well, they didn’t need to amputate and as I was writing this my wife sent me a text that read, “They called with her infection test results. Low IGG level and 2 viruses.” I don’t even know what IGG is, but it might be how I feel about leukemia at this point… IGG!!!! Its Gotta Go!!!

~~~Maybe we would be protected if we could just stay in this snow globe!
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We know that God is still in control. These fears are of no value. We don’t let them control us by any means, but they are still there. We have been blessed by people all over the world praying for our daughter, and for us. Most of them will never see this, but I still want to thank them. The same with the kindness that has been shown over, and over, and over again. We will never be able to repay this, but we so appreciate every single bit of it. Thank you, thank you, THANK YOU from our entire family!

~~~Cancer messed with the wrong family!
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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/

Like a child

I used to get Hugh Jackman comparisons, now I get Danny McBride.  You can either google him or just take my word for it; it isn’t a compliment.  No, apparently, with my head shaved the whole world can see what my wife has known all along: I’ve got a fat head.  That fat head is my excuse for it taking me so long to finally learn something.

Jesus made a comment about it being tough to get into heaven unless we become like children.  What???  What in the heck was he talking about?  Through the help of three amazing kids, I think I might have figured it out.  Kids have an innocence and purity about them and seem to just possess a knack for doing for others with no ulterior motive.  Time and time again during this whole (non) adventure, the little rugrats have amazed me.  If you don’t mind, I am going to share three examples just from the past 48 hours.

The first comes from the other side of the world… China to be exact.  There a young Noah, like any kid, is excited to celebrate his birthday that is rapidly approaching.  I think when I was turning 8 I wished for a GI Joe doll and perhaps that maybe someday I could like that oh-so-handsome Danny McBride.  Not Noah, his only wish was to help Delaney.  In lieu of presents for himself, he is asking for donations so he can send Delaney something.  Although he already got to impress Delaney’s entire kindergarten class when they were studying how holidays are celebrated  internationally.   The fact that in China they get to eat cool things like seahorses and scorpions, got a collective “Ewwwww gross!” from the class, but he still wanted to do more.  And his is just the first example of the hearts that some of these kids have.

The second example is right here in our own backyard: more specifically, in Delaney’s class.  A young Macayla misses playing with her buddy Delaney and is excited for her to return to school next week.  She also realized that shortly after she gets back to school, it will be Summer break.  So what does she do?  She asks her parents if they can make bracelets so the kids can remember Delaney during the Summer too!  She must have been awfully convincing, because her folks put everything in motion for “Livestrong type” bracelets that Delaney even got to help design (she went with blue, black, and white bracelets that have her “Cancer can Kiss my Stache!” saying with a pic of a mustache). Wow!  Why?  Simply because one nice little girl wanted to help another nice little girl, who happens to be sick.

The third example comes from Delaney herself.  She is feeling great today, so we decided to sneak away for her first movie since the leukemia diagnosis.  It was one of those special daddy/daughter dates that we haven’t done since we went to see Star Wars together last year. I am of the old school (okay, corrupt is more accurate) way where I sneak candy into the movies.  My feeble mind tries to rationalize that it isn’t stealing because they are trying to charge me 40 bucks for a box of Red Vines and that should be highway robbery.  Delaney won’t have it.  She knows it is wrong and just won’t eat any of it.  Just like a child…hmmm.