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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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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Enough!

Enough! That’s how my good friend from college had to feel when yet another family member of a loved one was diagnosed with cancer. Actually, knowing Kris, her exact words were probably,“Dammit!” What can I say, she has a potty mouth and she isn’t afraid to express what is on her heart. However, she didn’t stop at putting a bar of soap in her mouth, instead she got busy and decided she was going to do something about it.
Not too long after that I got a phone call. “I want to start a team to raise money and awareness for childhood cancer and I need a team name, what do you think of ‘Delaney kicks cancer’s butt’?” (except I already told you she has a potty mouth… so it obviously wasn’t “butt”). “Hmmm…” I thought to myself, “I’d like to be able to tell Delaney what you are doing in her honor… maybe we could work on a more kid friendly name.” And that was the night we came up Delaney’s very own, “Cancer can kiss my stache!”
Now that Kris had a cool team name, she started recruiting friends to join Team in Training with her to raise money and awareness for the Leukemia & Lymphoma Society. Fast forward to today, Kris and her friends have raised almost $5,000!!!! In fact, at the time of this writing, they are just $150 shy of that aggressive goal Besides raising money, they started running… a LOT. While most of you are reading this on Sunday morning, they are running 13.1 miles! What better way to cheer them on from afar by clicking on their team link and donating a few bucks to help put them over $5,000 before they even finish this morning’s final run (here is the link for those of you that might be able to help: http://pages.teamintraining.org/sf/nikesf13/delaney#Welcome-to-our-Teams-Homepage). Regardless of whether or not they hit their “stretch goal” or not, they have already raised over $4800… and it all started with someone getting fed up with cancer and deciding to do something about it. To Kris and your teammates that are running right now, on behalf of Delaney and all of these little warriors fighting cancer, we thank you.
Speaking of enough, Delaney has had enough of the interim maintenance phase. She had her last chemo treatment in this phase on Friday. She of course, handled it like the little stud that she is and did great. It had her feeling a little under the weather Friday night, but by Saturday she was feeling well enough to play in not one, but two soccer games. On November 1st she will start the maintenance phase which she will be on until May 2015. As one of the doctor’s told us early in the process, the “maintenance phase” is almost a misnomer because it sounds like things are going to get easier. Although she won’t have to go to the doctor’s office as often, she will still have lumbar punctures, oral chemo, chemo in her port, and steroids to deal with. Just thinking of her still having to deal with all of this the next two times we do resolutions makes me want to say enough!
She has almost had enough, of soccer. Okay, not really, she still loves it but is getting very excited to start basketball. This past week she got her jersey (which she loves the fact that it is a tank top and allows her to show off her guns) and a new basketball. Before you know it, she’ll be ready to try out for the Harlem Globetrotters.
Delaney has also had enough of being bald. It was actually very sweet, her twelve year old sister came home from the mall with a hair stimulating product that she had bought for Delaney. You’ve never seen a kid so excited to take a shower! I don’t know if it really works, but Delaney’s hair is definitely coming back. What is more exciting is that she is slowly getting more comfortable with it. Saturday she got all crazy and put gel in her hair. She doesn’t have much, but the little bit of stubble she has was up in spikes. The only thing that was more spunky than her hair was her fighter’s attitude, as she has definitely had enough and more than ever wants to tell cancer that it can kiss her stache!

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Delaney is actually 6’5″, with the afro 6’9″

Excuse my Fletch quote, but guess who has hair growing on top of her noggin? It’s so darn cute when she gets out of a bath or shower and lets us give her “afro” a good rubbing. It’s not really an afro, but she has almost as much peach fuzz on her head as an 8th grade boy has on his upper lip. Pretty exciting stuff!

Overall she has been doing great. She is in her 2nd week of the interim maintenance phase. Last Friday’s treatment was a little different for a couple of reasons. On a personal note, it was the first treatment that I wasn’t able to be at. There is probably a part of the childhood cancer experience that most people don’t think about: work obligations. Let’s be honest, if your kid has cancer, they are going to be at the doctor’s office or hospital a lot. As a parent you want to be there to hold their hand or otherwise love on them. Your employer wants to be supportive, but also wants to make sure the needs of the business are met. As it is somewhat related, another cancer parent tagged me on a humorous Facebook article today titled, “22 Signs you’re a cancer parent pro.” This was # 17- “You wonder when you’ll get your paycheck — wait a minute, you don’t work at the hospital, or anywhere anymore (who’d want to hire you, anyway?).” The bottom line for me is that I am at a new job, so I was working while my daughter was being sedated , having her spine punctured, and then was injected with chemo.

The other noteworthy item was how Delaney did after the treatment. We’re used to her not feeling so hot afterwards (we basically expect it at this point). Last Friday was different however, in that her temperature shot up. So after spending the entire morning at the doctor’s office, she got to go home, only to have to go right back that afternoon. However, being the resilient little stud that she is, she was demanding to go join her soccer team in their game the following day and she has been feeling well every day since then.

Speaking of her afro, her teacher alerted us that another kid accidentally knocked her hat off at school today. She was upset but there were only 4 kids around her at the time and none of them teased her or anything. As a parent, we almost wish she would just own her beautiful baldness, but she is only six. No worries though as if her locks keep growing like they have been, she’ll have the late Chick Hearn announcing her in no time.

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First day of school

It started at about 2 in the morning. The wife was wide awake with worry. Is Delaney ready to go back to school? What if her counts are too low and we just don’t know it? Should we have made some sort of check-list for her teacher? What about the school nurse? She only knows four kids in her class, maybe we should have the child life folks come out from the hospital again to help educate the other kids. Basically, she was squeezing at least a week’s worth of panic into the few hours before the first day of school began. She had been listening to the staff at Delaney’s doctors office and just didn’t think Delaney would be feeling well enough to actually attend school on the first day. In her mind, she was unprepared.

Sure enough, the kids woke up and everyone was feeling great. The house had that “first day of school” feeling when everyone is still excited about learning (or at least seeing their friends). Everyone humored Mom by allowing her to take plenty of pics. As for the whole wig question, Delaney decided to go Au naturale with just a ball cap covering her bald noggin.

When we got to school, cool little Delaney just had one rule: don’t embarrass me. At the risk of getting one of her knuckle sandwiches, we couldn’t resist being those parents that at least checked in on their little one. Sure enough, she found her classroom, hung up her mustached Hello Kitty backpack, and found her seat just fine. I didn’t know who I was more proud of: Delaney or her Mom who seemed to be holding it together so well. I then looked at her Mom and realized she wasn’t holding anything together. She wasn’t getting emotional because she was sad though. Unlike every other year where we just take it for granted that our kids would be healthy enough to go to school, she was just crying out of gratitude that her baby, in middle of what should be one of the toughest months of treatment, was feeling well enough to go to school. Luckily for her, she was outside of Delaney’s classroom (and scope of vision) when she lost it or Delaney might have had to give her a knuckle sandwich.

Here is a pic of Delaney all decked out for her first day of school.

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A wig shopping we will go!

I guess it was time. As much as Delaney was proving the old adage of, “Bald is beautiful,” with the school year quickly approaching we thought we should consider getting her a wig. So yesterday, my wife Stacey and Delaney set off to find the perfect wig. As it turned out, they also found more than their share of laughs.
Our little tomboy Delaney entered the store and almost immediately found this boy wig:

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Mom told her that she would look like a boy, to which she replied, “I know!” Mom wasn’t about to let that happen. They headed over to the girl section and after trying this one on, Stacey was thinking it should have been named the old lady section:

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Stacey kept looking. About a minute later she heard a giggling Delaney say, “Look I am Justin Beaver!” Stacey was cracking up so much that she was barely able to convince Delaney to take this photo (my personal favorite):

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They got back to the serious business of finding a girly wig, and from these pics you can tell Delaney was falling more and more in love with them:

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And

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Luckily, before Delaney decided to chuck the whole thing and just follow her dad’s lead of walking around in a Chewbaca “costume” all day, her sister Ashley came to the rescue. She noticed that there were some wigs that were made to wear with hats, which led to this winner, winner, chicken dinner:

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The wig shop owner trimmed it a little bit and they were all set!
With that out of the way, it leaves me to worry about two things: Delaney and other kids. Delaney is a rule follower. If the rules say, “No hats inside,” Delaney removes her hat inside. So as her hair thinned at the end of the school year, I noticed that when we entered the school building, she would take off her hat. I let her know that she could keep her hat on, but she replied, “No, you can only wear it during recess.” I started to explain that SHE could wear her hat in the classroom, but realized that if she was okay with it, I was okay with it. My fear is that if she does the same thing this year, the other kids will make fun of her (she looks like a smaller, cuter version of Friar Tuck when she is wearing the wig without a hat). Which brings me to my other concern: other kids.
There are a lot of great things about where we live, including the free Concert in the Park series. The adults usually listen to some good tunes while the kids play in the field alongside the concert venue. We made one concert this year and at the end of the show went to find our kids. I watched as Delaney and her friends were kind of lined up facing a group of older kids that were standing about two feet away. My buddy who was watching the kids commented that he couldn’t tell if the older kids were bugging the young ones (including his son). The older kids left, we grabbed our kids, and headed home.
Whatever the older kids said or did didn’t seem to bother Delaney, but I was curious so I asked what they were saying to her. “Oh they kept telling me to take my hat off so they could see if I was a boy or a girl,” she informed me. I was immediately both angry at the kids and sad for Delaney.
Do I have any guarantees something like this wont happen again?Nope. Or what is probably more likely, is that she will lose her hat while playing at recess or in a soccer game. We’re going to just do our best to prepare her for these things, and knowing Delaney when they do happen, she’ll probably just shrug and smile. We also realize that actually worrying about these things would be a complete waste of energy. One of the lessons that we have learned through this whole (non) adventure is that 99.97% of people of all ages are kind and genuinely care about others. The other big lesson we have learned and re-learned is that God is in control. However, with that being said, if Delaney does lose her hat due to the actions of one of the .03% mean kids, I am not making any promises that I won’t break the 11th commandment: Thou shalt not spank kids that do not belong to you.

Casa de Rufus

Super quick update that Delaney had a great day and is feeling MUCH better! She still has no immune system, but is smiling and back to her fun-loving self. Anyway, I mentioned her hair loss but she is really taking it like a champ. The past couple of months as it thinned it would start to ball up in a “rat’s nest.” Stacey affectionately nicknamed the imaginary little guy Rufus. Well now that Delaney’s hair is falling out in clumps, her oldest sister decided to make a house for Rufus. Here is a pic, but in case you can’t see all the details, Rufus (laying in his bed while wearing his bow tie), has his very own: mustache art, pic of his family, rug, pillow, chest-of-drawers, and curtain. He is one stylish dude!

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