Saddle Sores and Smiles

Paris.

Locations and experiences far and wide on the table.

Hawaii.

Pick a place, any place.

A dude ranch.  For anyone who really knows Harper, that choice came as no surprise.  Days upon days of horseback riding.  It's exactly what our little cowgirl would pick.

And so, earlier this year, our destination was set - we just didn't know exactly when or where.

As Harper's treatment plan came into focus last week, which for so many weeks had been uncertain, changing direction, and then back again, the time arrived for a decision. Either move quickly and pray the arrangements could be made in time, or postpone her wish until after transplant, which could mean a year or more.  We went with now versus later.

We had the confirmed treatment plan on Tuesday.  We left for Texas on Thursday.

After a rough first travel day, we finally made it to The Dixie Dude Ranch in Bandera, Texas.

What followed was exactly what Harper was looking for.

Horse, horses and more horses.

Trail rides in the morning.  Trail rides in the afternoon.

Homestyle country cooking. Animals (cats, dogs, pigs).

Cowboys in Texas Hill Country.  Hats, boots, dust and sun.  What more could a little cowgirl want?

We had a great time.  There was zero cell service so we actually had an opportunity to disconnect from the world and enjoy time as a family.  For awhile we even forgot the long road ahead.

One evening, as storm moved in the distance (it didn't do much but spit by us) we even got a special treat.  We watched from the front of our cabin as a full rainbow appeared in the east. It then added the faint second curve of a double rainbow.

We take it as a good omen in our battle ahead.

Tomorrow, at 10:30 am, Harper goes in for yet another surgery to remove the relapsed tumor.  But until then we will bask in the glow from several incredible days in the sun.

We all got our wish - saddle sores and smiles.

PS - Thank God for Gold Bond.

Try Again

Sometimes you just need a redo. Today is one of those days. Frustration and disappointment, while not fun, certainly is a valuable life lesson, and the girls got a lesson in it today.

We left home for Harper's wish trip today, and to say the girls were excited would be a considerable understatement. We had expected to drive to the airport, but our itinerary included a special surprise.





We got to ride to the airport in a stretch limo! It was the first time in a limo for the girls, so they were thrilled. They tried the TV, ate the mints and pilfered the cold bottled water. The only thing it didn't have was a moon roof - so Harper couldn't stand up in it and wave to neighbors as we left.

So far, so good. But then we transferred from the luxury travel of a limo to the steerage class that is modern air travel.

I'm a Delta junkie - I admit it. But our flights were booked on United. I have to admit, overall, I am glad most of my travel happens on Delta.

There were issues checking in and with our bags, but it got done. Minor computer issue compared to the gentleman at the next counter who was going to LA but his bag was tagged to end up in Denver...

We made it through security without a hitch. Cadence had a woozy moment as we passed by the machines they use to test the hand-swabs looking for explosives. She asked feebly if they do finger sticks to test blood. I assured her that they don't use the same methods to ID you as they do in The Hunger Games. Her face slowly refilled with blood.

We boarded our little bitty Embraer 145, 30 minutes later than scheduled. The previous flight was late getting in from Newark. But, we still had some cushion on our connection, that is until we then sat on the Tarmac for 30 additional minutes due to an air traffic control order from Houston. We would be cutting it very close.

The flight was relatively uneventful, and the girls seemed to be mesmerized by the lights as we landed in Houston after dark. Of course we only landed after circling the city a few times... Our cushion was fading fast.

With a last minute booking comes seats in the very back of the plane. Once (finally) off, we started our trek through the Houston airport - a maze we traversed at a sprint.

We barely missed the train between concourses, and the 105 seconds we waited for the next one was our downfall.

We reached our connecting gate and was greeted by the gate agent telling us the door was closed and we would need to go to the service center. The plane was still sitting there - they hadn't closed the door to the plane yet. In fact, I watched them gather the "paperwork" and take it to the pilots. Apparently they didn't want to reprint... Have to admit, I had a few choice words, and a few slipped out. They couldn't have cared in the least. They said they "tried" to get approval to hold the flight, but "Chicago" wouldn't let them. Sounds to me like bitter old Continental employees who don't like answering to United bosses in "Chicago" personally.

We made it to the help center just in time - as soon as we were in line, they closed the line, and all the other people who showed up after us were (rather rudely I might add) told to go to a different help center - in another part of the concourse.

Still flustered, aggravated, and still out of breath, we stood in line and contemplated or next move. I called United on the phone as we stood in line and quickly learned the only remaining flight to San Antonio out of Houston was sold out. So, chances of 5 people getting on standby were nil to none.

But, when all seems lost, or completely unfair and frustrating, sometimes good things can still happen.

The lady who helped us at the service counter confirmed what I already knew - no chance of getting out tonight. And to add to it, our bags made it on our second flight - so they were already headed to San Antonio - doing us no good in Houston. The drive to the dude ranch, through San Antonio to get our bags would be 4 to 5 hours. Not a good choice.

And then we were told that, despite a delay causing us to miss our connection, they would only offer a "discounted" hotel room. Really? Really.

I threw up my hands, figuratively, but stayed calm, and even mentioned to her that she must deal with a lot of frustrated people. I did let slip that we were on a wish trip, and she of course noticed Harper's bald head.

Having finished giving us our boarding passes for our rebooked flight the next morning, the agent said she would walk us out. Strange comment...

Turns out, while she didn't want to say it in front of other customers still milling around and being assisted, she wanted to help us some more. She asked us to wait, and she went to speak to a supervisor. She came back and ultimately issued us a voucher for a hotel room and 10 meal vouchers. After that she asked for Harper's name, because she wanted to pray for her. There are good people out there, even in dis-functional organizations.

So, we are in our hotel room. Everyone but me is already asleep (it didn't take long). We're not where we thought we'd be tonight, but we're together. We had some unexpected challenges, but we also had a little bit of adventure and some kindness shown to us.

All in all, it could have been worse. But tomorrow, at 4:30am, we'll go at it again. We'll count today as a practice run.

Tomorrow we will try again.

Regardless of how it goes, we'll be together, and be having an adventure as a family.

A Wish And A Prayer

After several weeks of not much activity, tomorrow it all changes.

For the past several weeks we've been in a holding pattern. We've been doing scans and tests. Doctors have been meeting, discussing, considering and meeting again.

Some say - we should do surgery. Others say - we should do radiation. And we are literally dizzy from all the opinions and changes in opinions.

But, after much debate, we now have a plan. And once a plan is in motion, it goes - fast.

Tomorrow we will (after just 3 days notice) be headed out for Harper's wish trip. Make-A-Wish will be sending us to Texas to spend several days at a dude ranch. We will return Tuesday.

We expect surgery the day after we get back, where they will go in and remove the tumor that grew back. Following 2 weeks of recovery time, we then expect Harper to start her high dose chemo with stem cell rescue (stem cell transplant).

It will go quick, and then it will drag on for months. We expect she'll be hospitalized for 8-12 weeks for the transplant.

So tomorrow we head out for her wish, the last "fun" Harper will have in months. And we pray that it is not her last.

And that's all we have.

A wish and a prayer.

Guido Update

It rained all night. Several times I woke up and wondered how Guido was doing. 

When I got up, I collected a couple dry shirts, some Red Bull and bottles of water, and a light rain coat. Not knowing how the night had gone, and having not seen any waterproof apparel the day before, I thought Guido might be able to use some.

It was still raining when I headed out from my office, so I slogged through with my own raincoat on, carrying the bag if items and the extra rain jacket.

I walked my way to where Guido had laid on the ground the day before. And he was gone.

I walked around the entire Belvedere area, looking in areas protected from the rain, with no Guido.

After 10 minutes or so, I gave up. Maybe his friend returned for him. Maybe the police came by and took him somewhere, or called an ambulance to take him back to the hospital. Or maybe after I left, he stood himself up and walked away. No way to know.

But, I hope he stayed dry. And I hope he feels better.  And I hope that someday I'll be able to help him again - even it is just an energy drink.

I'll go back tomorrow and check one more time. But wherever Guido is, I hope he's a little happier and a little better off after our short interaction.

Guido

Throughout our journey with Harper, we have tried, where we can, to keep life as "normal" as possible.  I know I've talked about normal before, and how it has changed, multiple times, as we have gone along.

While I'm at work I try to detach, momentarily, from Harper's situation.  It helps me to take a breather from the stress, even if it is to just focus on different stress. (If it wasn't stressful, why would they pay me to do it, right?)

Today, on a walk down the street between meetings I took a detour to the Belvedere - a plaza area above I-64.  I wanted to take a look at the river, maybe take a picture or two, and generate some additional steps for a step competition (100 Day Dash) that Humana is doing for employees.  I figured I'd be up and back in a few minutes, and I would move on with my day.

When I reached the farthest point, by the Clark Statue, I heard someone calling out.  I looked over, and a I saw a homeless man laying prone on the ground next to some benches.  He was motioning me over.

I considered it briefly, thinking perhaps I should just keep walking.  None of my business.  But, for some reason, I didn't.  Instead I walked over to him, and bent down to talk to him.

I don't recall everything about his appearance, but his hair was long and black with strings of grey  He was caucasian, but his skin was quite dark and leathery - like he'd spent a lot of time in the sun.  Across his knuckles were tattooed the words "FUCK YOU."

He first asked me if I had a light.  No, I replied.  No lighter.  He then told me that he couldn't get up.  His worn jeans were riding up his legs in the position he was laying, and I could see his legs were skinny.  He said he'd just gotten out of the hospital (I could see a white hospital ID bracelet on his right arm) but they had done nothing for him.

I asked him if there was anything I could do for him, expecting him to ask for cigarettes, or money.  Instead he asked if I could get him a cold drink.  Yes, I admit my mind went to him asking me to get him beer, but when asked what he preferred, he asked for a Monster Energey drink.

I was surprised, and so I agreed to get him an energy drink.  Despite needing to get back to the office, I instead walked back down to Main Street and went down to the lower level in the PNC tower.  There is a small store down there and a cafeteria called "Cravings." 

First I went into Cravings and ordered a sausage, egg and cheese breakfast sandwich.  While walking I had thought that perhaps he could use more than just a cold drink, so I had decided to get him something to eat too, even though he hadn't asked. I picked up his energy drink and then headed back.

When I returned, he was in the same exact position.  He accepted the food and drink and thanked me.  I took the opportunity to ask him a few questions.

He told me that the hospital had told him he has a brain tumor, liver issues, and kidney stones.  They had given him prescriptions for medicine, but he can't afford it.  A "friend" had brought him up to where he is, but he doesn't know where he went.  Someone had given him a wheelchair at one point, but someone took it.  He mentioned he'd lived a hard life, and that he didn't think he would make it much longer.

I asked if there is anything else I could do to help.  I offerred to help him up on one of the benches, and he initially agreed, but then after a moment of trying to push up on his hands, he said he should just stay where he was.

I didn't know what else to do, so I asked him if he would still be in the same place tomorrow.  He said he didn't know.  So I committed that I would try to come back tomorrow and check on him.  If his friend came back and he was gone, that was ok, but I would try to check on him.

Finally, I asked him his name.  He said people call him Guido.  I told him people call me Brian.

I walked away with mixed feelings.  Sure, I'd done something nice, but had I done everything I could? 

Sometimes I get so caught up in my own life, which has its fair share of challenges, that I don't see others around me.  Sometimes I can get so focused on what I need that I can't focus on what others obviously need.

Today was a wake up call.  I am one hell of a lucky guy.  I have a beautiful family, a good job, live in a nice home with incredible neighbors.  We have nice things and want for very little.  Guido's life is very different.

I have no idea what tomorrow will bring.  If Guido will be there, or what I will be able to do for him then.  But I have to admit that my initial interaction with him made me think about how lucky I am, and how its not that hard to do something to help.

What Will You Do?

Awareness.  In the world of childhood cancer, Awareness is the buzz word in September, as it is Childhood Cancer Awareness Month.  #gogold #curechildhoodcancer and hashtags like those fill my twitter timeline and my facebook newsfeed.  My profile picture is a call to go gold.  My posts are often pictures or memes that draw attention to the too often forgotten warriors battling this horrid disease.  We need more awareness.

But in my personal world, there is no lack of awareness.  Instead there is hyper-awareness.  Rarely a moment passes where I do not think, in the front of my mind, or the back, about childhood cancer.  It is a reality of a parent of a child with cancer.

I find myself, sitting in a meeting, awakening from a momentary daze.  In my mind is an image of a CT scan, or a bag of blood being transfused, or a bald head poking out of a pile of blankets in a hospital bed.  It varies, but inevitably I find myself looking at someone, a coworker, not processing a word being said.  I try to hide my momentary lapse, quickly listening to the last half of a sentence and attempting to guess what they might have said while I was away.

I can't escape it.  Awareness follows me.  I go to work.  I talk to people about what should be (and otherwise would be) meaningful topics, attempting to escape the reality.  But inevitably, eventually, the awareness returns.  I wonder about her blood counts.  I contemplate the choices to be made. Occasionally, in a moment of weakness, I even picture a small casket, or what it might feel like to have someone so precious leave this world in my arms, with me helpless to do anything about it.

Then I shake my head, attempting to throw such a morbid and unthinkable thought from my head.

So yes, we need more awareness.  We need more people awakening to find themselves picturing a small bald head and beautiful eyes staring at them.  We need more people contemplating "what if" about their own child.

But awareness alone is useless.  Awareness alone is wasted emotional energy.  If awareness comes and is allowed to pass, it is futile.  

What is needed is action.  Awareness does not provide a hat for a bald head in the winter.  Action does. Awareness does not give a family, out of money but not out of the woods, a place to sleep while their child is in a hospital is a far away city.  Action does.  Awareness does not fund critical research to provide new options for treatment (current options being decades old).  Action does.

Awareness is wonderful, and I thank all those who help to spread awareness - but I beg you - do not just be aware.  Take action.  Run or walk in an athletic event.  Purchase a t-shirt.  Donate $10, $100, $1,000 - whatever you can afford - to a non-profit like Pablove, St. Baldrick's, The Jeff Gordon Children's Foundation or (in Louisville) Gilda's Club.  Volunteer at a children's hospital.  Cook a meal for an impacted family.

Speak not with words.  Speak with action.  And bring awareness not just for knowledge, but to drive others to DO SOMETHING.

Whatever it is, however big, however small - Take Action.  

Make September Childhood Cancer ACTION Month.  

What will you do?