So, so close, but…

So last week we got the reminder that it isn’t over until the fat doctor sings.  Okay, Delaney’s doctor isn’t fat, but we were reminded to not take the finish line for granted.  On Tuesday we noticed her lips were getting white around the edges.  This isn’t uncommon as thanks to all of the steroids they have to take, thrush is pretty common in cancer kids.  Although it was painful for Delaney, we weren’t terribly concerned.  By Wednesday, her entire bottom lip was one giant painful blister.  We were concerned because this could be indicative of low counts.  Our fears were confirmed when we took her into clinic and they confirmed that her counts were barely above 500 (in comparison, ours are usually at about 2500).  That meant she was very susceptible to catching anything that might be going around.  It also meant that unless her counts improved, her very last chemo might have to be delayed.

Back to that not so fat doctor, we are very grateful for him and for his approach on treatment.  He wants his patients to live as normal of lives as possible.  He sometimes ignores the “book” and strict protocol that says when Delaney’s counts are low, a fever of even 100 degrees gets her admitted into the hospital because when her counts are so low, she can go south quickly.  Instead he goes by how she is feeling and believes that sometimes it is better for the patient to rest at home in their own bed, than to be stuck in the hospital.

We were grateful for this when Friday morning we had to take her in with a fever of over 102.  Her counts were still low and they thought she possibly now had pneumonia.  After giving her IV fluids, antibiotics and observing her for a while, they sent her home.  By that afternoon, we got the news that she also had the flu.  That night, her fever was 103.5 and I started wondering if she wouldn’t be better off at the hospital.  After over two years of battling, she was literally less than three weeks from being done, but apparently she wasn’t in the clear yet.  While she rested, we prayed.

The next day, she was a back to her silly self. When she jumped up on the couch and started singing, “I’ve got flunesia” while shaking her little bum, we just laughted and knew she would be okay. Two and a half weeks and counting baby!!!

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The Night has definitely been Lit!

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My heart overflows with joy. I’m going to be honest and just let you know that whatever I write here cannot do tonight justice. We just got back from the Leukemia & Lymphoma Society’s Light the Night Walk. And… IT WAS AMAZING!
We arrived at the beautiful Wash Park early. If you aren’t in Denver, I should probably tell you that three days ago we had a fierce hail storm and it has rained cats and dogs the past two nights. In perfect contrast, tonight was a beautiful Fall night that was just cool enough to let you know that Summer is officially over. It was perfect and made me once again grateful to be living in beautiful Colorado.
We decided to grab some food before everything really got going. As we finished eating, more and more friends and supporters kept showing up. The crazy part is that we probably only saw half the people that made it to show their support. Between brief greetings and thank you’s, somehow it was already 6:45 which was the time we were to go to the stage. We got a brief line-up for the night, and then it was on!
The speakers included one of the top cancer doctors who shared some of the exciting advancements that are being made in medicine today. The message was clear: When we say, “Someday we’ll find a cure,” someday is today.
Before we knew it, the crowd was directed to watch the large screen where a video was to be shown. The video began with a shot of my wife, Delaney, and I saying, “Cancer Can Kiss My Stache!” and then being silly. Delaney’s story was told beautifully and was weaved in with another woman’s story and the advancements being made as a result of the supporters of the Leukemia and Society. When the video was over, we were called up on stage where they told the crowd of probably more than 2500 that Delaney wanted to be a firefighter when she grew up. Then they presented her with a firefighter helmet complete with a mustache on it. Delaney was in heaven.
The top fundraisers were recognized and then we literally proceeded to light the night. Almost everyone in the crowd had a lantern that was either gold, red, or white and they were all turned off. Starting with gold in honor of people who were walking in memory of somebody who lost their battle with a blood cancer, then all the folks who were carrying a red lantern to designate their support of somebody affected by a blood cancer, lit their lantern. Then Delaney was called up to lead the lighting of the white lanterns which designated the survivors. It was really cute as Delaney did the countdown with the morning anchor from channel 9 news, Corey Rose. (I know the video isn’t the best quality, but it kind of shows the magnitude of tonight’s event as you can see just how many people are lighting their gold, red and white lanterns.)

After leading the countdown, we rushed from the stage to the golf cart that was decorated in Bronco’s colors. They did another countdown to begin the walk, and we rode off to lead the crowds. Due to my phone dying, my favorite photo will have to remain a mental snapshot. It was of us being one one side of the lake and looking all the way across to the other side and seeing thousands of people showing their support while lighting up a trail that stretched over a mile all the way to the other side of the lake. Simply awesome!
Thank you again to all that donated to the Leukemia and Lymphoma Society and to all of you amazing folks that showed up to walk with us tonight. We love you!!!

Gone fishing! (and zip lining… and horseback riding… and…)

We are coming off of a fantastic weekend! Delaney had the opportunity to go to The Round Up River Ranch Camp for a weekend and even got to bring her family. It is a Paul Newman Camp that combined with funding by the John Wayne Cancer Foundation offers a completely free family weekend for kids with cancer. Technically it only lasted a little over 40 hours, but it was packed with fun activities and laughter.
We got our cabin assignment upon arrival on Friday, and then went to dinner and a campfire for some songs, skits, and some smores. Afterwards, we went back to our cabin but instead of going to bed, the kids hung out with some very cool counselors and played games, told jokes, and were challenged with brain teasers. While they were having their fun, the adults got to have time to meet each other and enjoy some fellowship while playing some decades trivia. We finished up the fun and then hit the hay because we knew Saturday was going to be a full day.
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Having some fun with one of the cool volunteers, Kevin.

We started our day off by instilling some fear and trembling into the fishies of the camp’s stocked lake. The fish were right to be scared, just not of us. We got some food in us and then decided to hit the climbing wall and zip lining. I had been zip lining before and was trying to play it cool. Even having done it before, the familiar butterflies in the stomache returned before stepping off a perfectly good platform that was probably 40 feet up. If I was nervous, Delaney was terrified… but she did it! She also got to ride a horse, do some painting, boating (including getting a very big laugh as her dad managed to flip the canoe when he got on it), and even won a buck off dad when her arrow was closest to the target in archery (nothing like the teaching the kids gambling at a young age… don’t judge me).
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As fun as all the activities were, the real joy came from the people. We met so many nice people. From the volunteers that donated their time to serve the campers, to the other families that got to cut loose and not only enjoy their time with their family but also got to bond with other families facing similar struggles, but the kids themselves were what made it so great.
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Sure there were bald kids, kids on crutches and in wheelchairs, and a whole lot of medications, but this weekend they weren’t a bunch of kids with cancer, they just got to be kids. They played kickball, soccer, hula hoops, dodge ball, building blocks, croquet, got to go to the carnival that the staff and volunteers put on, danced after every meal, and just laughed and laughed through it all as they created memories that will last a lifetime.

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After her fun weekend, Delaney got right back in the swing of things. She got more chemo today and goes back Wednesday for the doctor to check out how her fractured ankle is doing. Because I’ve been doing such a poor job of updating lately, I don’t know that I mentioned that she currently has her 2nd ankle fracture this year. Unfortunately, this is just part of the fun that comes with steroids. The doctors were worried about necrosis of her bones caused by the steroids, but they think she’ll be fine. Hopefully she gets some good news on Wednesday, because soccer season has officially begun!

Back to school… bring on the 2nd grade!

      As Summer is winding down, it makes me wonder where the time has gone and it also makes me realize that I haven’t posted a Delaney update in a while.  She has had quite the Summer.  Last Summer she was too sick to go anywhere or do anything.  So when me and her sisters were going to spend a week at the beach with Grammy, Grandpa, and lots of cousins, Delaney got to stay at home with Mom because her ANC level was too low for travel.  Well this Summer, she has definitely made up for it.

       From her Make-A-Wish trip, to camping near the Great Sand Dunes, to getting to go Southern California for her cousins wedding  (where she got to show off her moves on the floor), to playing on a softball team for the very first time, or just hanging out with her buddies, she has been out going and doing.  Of course it hasn’t been all fun, but for the most part when she is feeling well enough (which fortunately is most of the time now), she has been out enjoying life.

        Of course, her treatments continue.  At her chemo visit a month ago, they decided to up her doses across the board.  There wasn’t anything wrong or not working, but as she grows her body needs more medicine.  You would think that by now we would be accustomed to this but for some reason this seemed to hit me in the pit of my stomach.  It was just the thought of more chemo in her port, more chemo in her spine, and the toughest part for Delaney, more steroids.  Her little body seemed to do okay with the increased chemo.  Her emotions from the steroids on the other hand…  

      Unfortunately, she just went back this past Friday for more more chemo and more steroids which means when she starts school tomorrow, she is right in the middle of a steroid cycle.  The big 2nd grade.  Delaney was in kindergarten when this whole (non) Adventure started and now she is about to delve into the school year where she officially becomes smarter than her old man.  The great news is that the light at the end of the tunnel is growing brighter because if all goes as planned, the end of the the school year is also the end of her treatment.  That’s right, in May of 2015, Delaney should be done with treatment and can officially say, “Cancer Can Kiss my Stache!”

Delaney (making a silly face) at the Cancer Can Kiss My Stache booth hosted by the Leukemia & Lymphoma Society.

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Wish recapped!

Less than 24 hours prior to her big trip, Delaney had to go in for her transfusion where they realized she had a fever of almost 101 degrees. As we all know, a little fever isn’t going to stop Delaney from a trip of a lifetime. She showed that by jumping up and down at 5 the next morning while yelling, “the lim-bo is here, the lim-bo is here!” Delaney was back to her normal silly self, the limo had arrived to take us to the airport, and we were ready to begin her Make a Wish trip.
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Before making her official wish a Disney Cruise she went back and forth between that and Disney World. My wife and I were concerned about her being physically able to do multiple days of the Disney parks. We were glad she ended up choosing the cruise, but wanted her to be able to experience at least a day of Disney World so we got Make A Wish’s permission to take her to Disney World on our own. That was the plan, we just had no idea how awesome the whole trip would turn out to be.
The trip started with giggles and they continued throughout. Delaney and her sisters were giggling with the excitement of being in the limo, Delaney was giggling at her photo-bombing skills, and there was a point on the plane where I almost hushed her because she was laughing so loudly. I stopped myself before doing so as I realized that the hearty laughter of this little girl fighting cancer was bringing joy to anyone within ear shot… which was pretty much the entire plane.
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We arrived in Florida and headed to Disney’s Art of Animation hotel which was perfect for Delaney. Our little tomboy isn’t into all the Disney princesses, but she loves the movie, “Cars”. She was thrilled to get to sleep in a Tow Mater bed that folded down from the wall and take pictures with the various characters from the movie. We meandered over to Downtown Disney and ate at a restaurant with dinosaurs before exhaustion caught up with Delaney and we needed to get her back to the hotel to spend some time with Tow Mater.
The next day had us up and early and off to experience the wonders of Disney. We were surprised to find that our little girl who had never been on a roller coaster or scary ride, now had the new favorite rides of The Tower of Terror and Aerosmith’s Rockin’ Roller Coaster. Yikes! Both very scary but tons of fun! We weren’t sure how she was going to do on the Tower of Terror until there was a part of the ride that drops you from what seems like a mile up. While I was busy soiling myself, I looked over to see if Delaney was okay and heard her yell at the top of her lungs, “THIS IS AWWWWESOMMMMME!!!”
My wife had to go over to Guest Relations to convert two of our tickets to Park Hopper passes and got to talking to the very nice folks that worked there. The topic of why we were out there came up, and one of them asked if we had already bought tickets for the next day. We hadn’t because we weren’t sure if she was going to be feeling well enough. He said, “Well, if she is, I hooked you guys up with a discount in case you decide to come back.” Me being my “Ebenezer/ Penny Pinching/ Not Wanting to Mortgage my House” self thought that even with a discount we weren’t going to be able to afford another day but was very grateful for the gesture AND the fact that he gave Delaney a Mickey wizard hat and a picture autographed by all of the Disney princesses. We were amazed at their generosity!
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Speaking of generosity, the “discount” he hooked us up with was significant enough where even old Ebenezer couldn’t argue with another fun day at the park. Delaney was exhausted to the point of me having to carry her on my shoulders from ride to ride it may have been from just having a blast. And to think, all of this fun was even before her officially began!
On Sunday we got on the Disney Express bus to take us to our cruise ship, the Disney Dream. As we were approaching we could see the ship in the distance. It was enormous!
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We were able to get right on the ship and start exploring. Three pools, a water slide, walk up any time ice cream, every Disney character, and even a detective agency just for kids… does it get any better than that? Delaney wasted no time getting all classy by wearing her new Mickey bow tie to dinner the first night. She was happy to show it off as well as her dance moves as she got up and cut the rug with a waiter at our very first dinner.
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We woke up the next morning in the Bahamas where a dolphin adventure awaited. Part of Make a Wish’s goal is to allow the child with the illness to be able to have so much fun that they at least temporarily forget their illness. That was definitely achieved as Delaney and her sisters got in the water with the dolphin, got to dance with it, give it hugs and kisses, and laughing as it kept going back to their Mom for a kiss. That was a day that we’ll never forget.
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That night Delaney broke out the big guns: Make A Wish included her wish to wear a tuxedo on the cruise and Delaney couldn’t wait to put it on. With her brand new tuxedo AND top hat, Delaney was getting compliments of “You’re the best dressed person on the entire ship!” She was loving it!
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The next day included snorkeling, petting sting rays, a water slide on Disney’s private island, and a private party with Mickey Mouse.
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We also met with the Make a Wish representative on the ship who was able to hook up Delaney with her own time to go on the ship’s water slide.
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I wasn’t sure if Delaney would like seeing the different costumed characters, but she loved it! In fact, for her, one of the highlights of the trip was when she saw Donald Duck who was also wearing his tuxedo. He grabbed Delaney’s top hat and it on for a pic.

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I feel like I am failing miserably in doing Make a Wish justice with this blog post and I know we’ll never be able to thank all of the generous people who helped make this trip of a lifetime possible, so I’ll just say thank you and end this with some fun Delaney photos from our trip.
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Photo-bombing her sisters (again)
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Arrr matey- Twin pirates with Dad
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Stingrays!
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Just hangin’ with Pluto
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Looking snazzy with big sis Emily

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Just because it isn’t formal night doesn’t mean I can’t wear a bow tie!
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I Love Make A Wish!!!!

Cows (and cool kids) for joy!!!

Delaney has been quite the rockstar the past couple of weeks. Well… a star anyway. She got to be the student of the week for her classroom. She got to make a poster about her family, favorite things, and what super power she would want to have (I’ll tell you so you can get some sleep tonight: shapeshifting). My wife and I love how whenever she gets these opportunities to talk about herself, she’ll tell people about her three sisters, her dog, and even her two guinea pigs, but never about cancer or being sick. As part of the Student of the Week fun all of her classmates wrote notes to her and the teacher put them in a little book for her.</

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Here is a sampling:

Dear Delaney,

You are funny. You are nice. You are fun.

From, Dakota.

Dear Delaney,

You are a great frend.

You are sweep to peple and I love your posetr.

From Hans.

Dear Delaney,

You are Kool and I tenk you aer spesrol.

(this one had the star colored in and the words “smell this”—what are these little hoodlums into anyway???)

Dear Delaney,

You are a very good friend. You are very nice. Your poster and book, casts, and Trindan Halliday gloves were very cool! Your awesome Delaney! (with a pic of a cow saying “moo”).</
I like this one too with 5 cows added and the words, “Cows for joy!”
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There were actually lots of cows and lots of love from these little first graders.

Speaking of cool kids, one of Delaney’s very best friends came to Friday’s chemo appointment. They were so excited as her little buddy Sawyer got to experience it with her. They weighed Delaney then weighed Sawyer. Measured Delaney then measured Sawyer. Gave Delaney chemo, then gave Sawyer chemo. Okay not really, but you get the idea. As I watched the two of them laughing and goofing and having so much fun at her appointment to get chemotherapy, it made me realize that life is what you make it. Why NOT have fun? As my buddy Willy Shakespeare says all the time, “There is nothing good or bad but thinking makes it so.” Once again Delaney is helping me learn the valuable lesson of perspective. Cows for joy!!!
Here is a pic of the little goofballs:
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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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