The W Adventures

Acadia - Day 3

2016-06-13T08:27:00.001-04:00

With Day 3 starting with rain, we had a slow start. We hung out at the camper and indulged Finley in her bizarre fixation since arriving - laundry.

In defense of Finley's strange fascination (since we do laundry at home and she's never indicated an interest...), the laundry building is directly across from our campsite - and she's 8, so novelty is the name of the game)

After finishing one load, we decided to finally head out and see what we could do despite the rain.

Thus far we'd kept to the east side of the island, so we determined we'd head over to the west side. We drove to a lobster restaurant we'd heard and read good things about.

Thurston's Lobster Pound did not disappoint. The girls each chose to have a steamer and Melissa and I had lobster rolls. These are the girls' "chosen" lunch specimens, pulled directly from the tank and weighed before steaming.

While we sat waiting for our food, something surprising happened - the sun came out! The weather here seems to change quickly, going from sun to clouds to rain to sun again in quick succession.

The sun lit up Bass Harbor and made it even more picturesque.

Our food was no less exciting than the view!

I must say that while the steamers were excellent (I may have stolen a bite or two while assisting in their disassembly) our lobster rolls were a lot easier to eat.

After finishing our lobster (and some pie, of course - blueberry and strawberry rhubarb) we walked down the shore a bit, taking in the beautiful view and a highly decorated fishing building.

A short drive away, right on the other side of the harbor is the Bass Harbor Lighthouse. The main walkway takes you down to the lighthouse itself, allowing a close up view, which was stunning.

But, after visiting the lighthouse close up, we observed some visitors taking a second, non-advertised path into the woods near the parking area. We followed it, and it up took us down some wooden steps and then stone steps toward the sea. (Here's a view from the bottom of the stairs and steps)

At the bottom of the short climb, it became clear why people were taking this walk.

The path brought us down to the boulders on the shore, giving us the opportunity to climb out and get a different view of the lighthouse.

As you can see, I took a few. 😀

The girls also enjoyed climbing on the boulders and checking out the life in the tidal waters trapped in some of the crevices.

Finley didn't want to leave the boulders. She was having a blast climbing around and exploring. But, alas, we drug her back up the steps and to the truck, so we could get in a hike before the next band of expected rain arrived. It was already clouding up again.

We drove on to Flying Mountain - a short hike to the summit of a mountain, just inside the edge of Acadia, that overlooks the Somes Sound.

For this hike I strapped the GoPro to Finley's head (and then to Cadence's 7 minutes later when Finley complained it was too heavy), but my Mac doesn't currently have enough memory available to process the footage, so I'll have to publish that hiking video later. Until then, I'll just have to share a few photographs.

The hike up was pretty much straight up and we arrived at the summit and a few overlooks near it in a matter of minutes.

While we were there we took a couple of family shots, using the timer on the Nikon. The first one resulted in me rushing around and falling down, landing seated on Cadence's foot.

For the second one, I didn't fall down, but instead steadied myself by sticking my left leg out, which wasn't great either.

I think I like the picture where I'm on the ground better.

The path continued from the summit and back down the other side of the mountain, bringing us to sea level, with easy access to a small cove on the sound, which we also stopped and explored.

Apparently Cadence, while still wearing the GoPro, spent a lot of time looking at sea snails during our visit to this cove. I'm looking forward to seeing that footage on the GoPro...

While we were in this cove, the rain started to roll back in, so we got back on the trail and finished out the hike on a fire road that led us back to the parking area. The fire road led us through a thick patch of fir and pine trees, which, in the rain especially, smelled heavenly.

With the rain rolling back, we decided on getting some early dinner. A friend from work had recommended a little pizza place called Pepper's, and it was on our drive back to the campground.

They had delicious pizza and bottled soda. Melissa and I enjoyed Blueberry soda, while Finley had Root Beer and Cadence had Black Cherry.

The rain was still threatening, but elusive, so after pizza, we took in some quick mini golf.

After that, it was back to the camper (and our lovely furnace that helped take the chill out of the air) for showers (yes, we have a hot water heater and shower in the camper too - like a hotel suite on wheels) and a movie (uh huh - flat screen tv and DVD player). Everyone was out pretty early.

Acadia - Day 2

2016-06-11T21:20:00.001-04:00

We had big plans for our second full day in Acadia National Park. We wanted to take in a hike and finally put the kayaks in the water.

We started off the day headed into Acadia, traveling around Park Loop Road. Park Loop Road does something all together unexpected - it makes a loop around the park. Go figure.

Fortunately, Park Loop Road is well maintained (I'm guessing it doesn't get salted in the winter) and RT 3 (the main road that goes through Bar Harbor) is a mess - so even though the directions we had to our trail head called for going on RT 3, we opted to take in the sights on the slower speed Park Loop.

After several miles of driving, and questioning if we'd missed our parking area and trail head, we finally found our starting point. We were headed up Gorham Mountain - approximately 500 feet up promising beautiful views.

The path up the mountain was pretty smooth at first, and we even got the chance to stop and use the timer on the Nikon to take a family picture.

Then there was a fork in the road. We could continue our climb steadily, or we could take the path along the cliffs. Everyone but Melissa wanted the cliffs. The cliffs it was.

Despite her instinctive urge to turn around at every step, Melissa did great going up some of the steep parts of the trail.

The girls also proved themselves good climbers.

Especially Cadence, who wanted to look for even more challenging ways up the mountain. She may become a daredevil - the term "base jumping" came up in conversation... Here she is climbing ahead of us.

It was a fun hike up, with an interesting path.

We finally made it to the top, and enjoyed the beautiful views from the summit.

The pictures really don't do it justice. Even the panoramic.

The girls even sat and had a rest.

We descended on the other side of the mountain, and could see people climbing the "Bee Hive" trail.

When we got down farther we came to the fork in the path that takes you to the Bee Hive. At first Cadence was willing to
consider hiking it with me. But then, after watching a little while (while we had a snack) she changed her mind.

We came off the mountain right across from Sand Beach - a rare Maine beach with natural sand. We walked down and enjoyed the view of the water from a different (less ascended) angle.

We even had a little fun in the sand.

These 2 guys braved the water while we were there - but with air temps hovering around 60, we passed. (They didn't stay in long...)

While I like most of the pictures I took today (especially after playing with them a bit in Lightroom), this is one of my favorites. I can't decide if I like the color or black and white, so here are both versions.

After the stop on the beach, we still had to hike back down the coast to our truck, which was about another mile. Not everyone was enthusiastic about having to walk some more.

We eventually made it back, and I got few more shots along the way, including this one.

Thunder Hole was on the way back as well. While the tide wasn't high enough for it to book as advertised, we still stopped and checked it out. Maybe we'll come back to see it again before we leave.

Once we were back to truck, we planned to have sandwiches for lunch. We'd packed a cooler with supplies. Well, I'd packed a cooler, which meant I'd forgotten bread and condiments. So, lunch consisted of meat and cheese. Low carb and gluten free! (I've since been relived of lunch packing duties, so my plans are working out perfectly!)

With rain in the forecast, we decided to forgo the kayaks for another day, and instead drove up to the summit of Cadillac Mountain. The views were spectacular, there was a bit of haze and while chilly, you could feel the rain coming.

After that, we came back the campground and crashed for a bit. Just about everyone napped. Then followed Skyline for dinner (out of a can - no Skylines in these parts!) and ice cream for dessert. There's a place we can bike to.

Tomorrow we expect rain. So, first thing we're going to let Finley do something she's been begging to do since we got here - LAUNDRY! (Believe it or not - she has been begging to point of extreme irritation)

Acadia - Day 1

2016-06-10T20:02:00.001-04:00

Well, we finally made it. Thursday at about 4pm we rolled into our campground and picked out our campsite.

The campground we chose is Bar Harbor Campground. This campground doesn't take reservations and is cash only. But it is literally right on the ocean and only a few minutes from Bar Harbor and the Acadia National Park entrance.

This is the (albeit cloudy this morning) view from our campground.

Friday morning we got up around 8, had a little breakfast, and then headed to the Acadia National Park visitors center.

After getting our week long park pass (a reasonable $25 for a personal vehicle) we got the bikes out and decided to check out the Carriage Roads - a series of roads and bridges built by John D. Rockefeller Jr. These paths do not permit motorized vehicles and wind around a good portion of the park.

We decided to circle Witch Hole, a decent sized and picturesque pond. It was a little over 4 miles around, most of it either going up hill or down. There was very little flat path. I can tell my legs will hurt tomorrow...

While on the path, we stopped and explored one of the stone bridges (we think it was Duck Brook Bridge). It was a beautiful bridge with several waterfalls flowing under it.

The girls even posed for pictures.

It was absolutely beautiful scenery.

The girls even got into "framing up the shot."

We had a late lunch at a Thai restaurant in Bar Harbor, where the girls characteristically surprised the wait staff with their love of sushi.

We came back to the campsite and took a break. We're all pretty tired after the nearly 3 days worth of driving to get from our house to here.

We finished the evening with some hot dogs over the fire, with Fin, after several near meltdowns from the smoke following her, found a solution...

Tomorrow we plan to try the kayaks on Acadia waters!

A LONG DAY (with unexpected hugs)

2016-06-08T22:24:00.001-04:00

Wow. Today was a long day. 14+ hours of driving a 50ft rig across 3 states (around 700 miles) on our way to Maine.

Didn't take a lot of photos today, since my hands were on the wheel for the vast majority of that time. But, here's one from a rest area around Mansfield, OH -

We only lost one kayak strap all day (saw it in a construction zone and had to drive 5+ miles before we could get off the road and strap it back down) and no kayaks lost.

We decided on Interstate 86 instead of Interstate 90 to cross New York. It was a beautiful drive with really no traffic to speak of. I imagine it was much prettier and less congested than 90 (and no tolls).

We stopped for dinner in Owego, NY. We decided on something healthy after sitting all day... Just kidding - it was McDonalds.

While sitting there eating, I was unexpectedly approached by a younger guy (I'm guessing senior in high school or freshman in college) who asked me for a hug. After a second I realized it was probably related to my shirt.

I agreed and I hugged a dude I didn't know. One of his friends came up behind him and he wanted one too. Another stranger hug was given. Harper-based inspiration strikes again. (Melissa and I both own this shirt and obviously in memory of Harper's hugs)

On our way to our selected hotel in Albany, we ended up on I-90 for a short while. I expected to pay the toll, which I also expected to be a pretty penny due to the extra axles from the camper (despite it only being 5 or 6 miles of toll road). To our surprise, when we exited the toll road, the lady in the booth told us we didn't have a toll to pay... No idea why but we'll take it!

We found our selected hotel (a Towne Place Suites) only to find there was no chance our rig would fit in their parking lot. So, we went searching... After another failed attempt at a Hilton Garden Inn, we found a Courtyard that had just enough open space to park our rig. I went inside and learned they had one room available. A lot more than I'd hoped to pay, but it's clean and we have a decent sized room, and we were able to park the camper for the night. I'd call that a victory.

Tomorrow is slated for another early start and more driving east. We'll have to decide if we are headed up through Vermont and New Hampshire or through Boston. I'm sure it will be exciting either way. But I wonder which path will get me more hugs? That's obviously the route we want to take.

Location:Washington Ave,Albany,United States

Another Adventure Begins

2016-06-07T22:32:00.001-04:00

It's been quite some time since I posted to this blog. During Harper's cancer journey, I used this blog to share updates and emotions. The emotions from then are no less raw today than they were almost 18 months ago.

But today is Harper's 11th Birthday, and it seems fitting that, unintentionally I might add, today our family embarks on a new and hopefully enjoyable journey. I think Harper is with us as we set out.

This journey may not be as warm as our time in Hawaii last year, but I hope it is just as scenic. We're off on another camping trip, this time to Acadia National Park and Bar Harbor, Maine. We'll spend (hopefully no more than) 2 days driving there (expecting 18-20 hours one way from north of Dayton), 7 days on Mount Desert Island, and then 2 days driving back.

And in true Wehneman fashion, we have drama right out of the gate. Yes, of course the girls were fighting in the back seat before we even started the truck, but that's not the drama I'm referring to.

Last week I had the truck gone over in order to prep for this long road trip. Towing 11,000 pounds (plus kayaks on top) 20 hours one way frightens me a little, especially in a 11 year old truck. But, she's a diesel, and lacking $60k just sitting around to buy a new one, we decided the best approach was some preventive maintenance.

So, there I was last week, shelling out more than 1/60th of a new truck for an oil change, transmission service, brake line flush, power steering fluid change, coolant flush, pinion seal replacement and a brake bulb (to round out the job). On top of that I had them replace a leaking valve stem on one of the tires. Towing goes slow with a flat...

So, we thought we were as good as we could be. Except apparently maintenance on one tire makes another tire jealous... So, another valve stem decided it wanted some attention...

And so, at 15 minutes before closing, just north of Cincinnati (on our way to the farm today to get the camper before starting our LONG road trip to Maine) we ended up here -

At first, the guy looked at me, looked at the truck, and balked a bit because of the load we were carrying (both in the back and on top). But, in the end, after discussing with the shop guy, they pulled us in and made the repair.

The family took it in stride, even the dogs (who are soooo looking forward to their little vacation with Uncle Alan at the farm these next 12 days - hehe - I guess that should be dreading - they're already nervous about being left behind)

So, 4.5 hours after departing out from home, and after multiple stops, both for tire repair and for relieving pressure on Finley's apparently hamster-sized bladder, we finally made it to the farm.

Tomorrow we set out on the long drive. We plan to get in as many hours as we can stand tomorrow, followed by the remainder the following day (spending the night in some yet to be determined hotel).

Wish us luck! Let's hope our mechanical challenges for this trip are DONE!

To a Mother Missing a Daughter on Mother's Day

2015-05-10T08:15:00.001-04:00

Over the past 11+ years I have watched the love of my life grow from my beautiful bride into an incredible mother. I have watched her give birth to three beautiful little girls whom she has loved and nurtured. She has devoted the past decade of her life to their health and joy and future. And I am grateful.

In May we celebrate mothers. Mothers like my wife who are the rock on which these little lives have been built. We give trinkets and gifts to try to show appreciation for the ongoing daily gifts that they give to us with their love and support. And the things we offer - flowers, candies, breakfast in bed - are never, ever sufficient.

This first and arguably biggest gift mothers give us is life. They carry a child within their body for 9 months, allowing the baby to develop at the expense and wear and tear of the mother’s body. And once the baby is here, the gifts continue to flow. Nursing, rocking, soothing, changing, teaching and loving happens from day 1 and in many ways never stops.

And when childhood cancer enters the picture - the mother doubles down. She doesn’t give up because it is too hard. She digs deep, gives up on her personal goals and ambitions, and sits, stands, lays, hugs, laughs, cries and fights along side her child. She gives of herself all she has, and then gives some more. Every test. Every procedure. Every needle poke she experiences and hurts with her child.

And when all options are gone; when all hope for recovery is lost; when the cancer and the therapies threaten to take that first precious gift of life; when the Lord welcomes home His angel, the mother is left to grieve in a way I, even as the father, cannot fathom or comprehend. My words and hugs and support are sincere, but inadequate.

And yet from the ashes the phoenix does rise. From death and destruction grows new life. From adversity comes triumph.

Melissa, I know the road has been harder than anything we could have envisioned when we started. I know you are hurt and that pain will never leave. I know that Harper’s absence from our daily lives will be poignant and painful until we each go on to meet her again.

But to everything Harper did she brought joy. To every person she met, she gave love. In every moment of her cancer journey, she had hope. And I carry with me, as I know you do also, a happiness from having known and loved and cherished her for the time she was with us.

And I truly believe that Harper’s hope, love and joy were gifts she got from you.

Thank you for being the beautiful woman, bride and mother that you are. On this difficult Mother’s Day, the first without her, I want you to know that she is still here in the hope, love and joy we embrace in our own lives, and the hope, love and joy that we can and will continue to share with others in her memory.

I love you.

Happy Mother’s Day.

My Mind Wanders

2015-02-12T21:57:00.001-05:00

At times of quiet, my mind wanders. It wanders places I wish it would not. It wanders to memories - visual remembrances I wish I could avoid - I wish I could escape.

Harper, lying motionless in a hospital bed. The click and clack, whooshing of a ventilator. A nurse nearby. Melissa asleep in a chair. A rustle - motion. I get up. I rush 4 feet to her side. I grab her hand, which was reaching for the tube placed firmly in her mouth and down her throat into her lungs. Her eyes open, briefly. I tell her I'm here. I tell her she'll be ok. Calm down. Everything's ok. Hold my hand.

My mind wanders.

Doctors and nurses around. 12 people in her ICU room. We don't know if it will work. Do you want us to try? I look at Melissa. We silently communicate. I nod yes. I verbalize, with ignorant tears in my eyes, "do it." We gather ourselves. We kiss her. We say we'll be right back. We leave the room, not knowing we will never to be in her living presence again.

My mind wanders.

We are in the "meditation room." The nurse comes in. "They are doing CPR." We collapse. We cry. Friends arrive. We pray.

My mind wanders.

I close my eyes and walk into the room. 12 people, or more, surround her bed. A flurry of motion. Up and down. Chest compressions. CPR being administered. Pain. Pressure. I can't watch. I grab Harper's nurse. I have to leave. I run.

My mind wanders.

My lips, against her cool forehead. Her eyes closed. Her nose, packed with gauze. She is already gone, though she lingers, holding me.

My mind wanders.

I sit, typing. Tears wet my cheek. I pause. I search for the words. They escape me.

And my mind wanders.

It's Just Going to Hurt

2015-01-19T21:52:00.000-05:00

In the 3 weeks that have passed since Harper gained her wings, I have struggled to know what to write.

When things were happening with Harper over the past 18 months, writing on this blog was therapy for me. It was an outlet. A way to communicate not just facts, but emotions I was experiencing - and releasing them and sharing them helped.

But now I don't know what to write. The world is moving so much slower now. And things that happen seem so much less worthy of words and emotions to express them.

I have started countless blog posts in my head, only to have them flatten and fall apart as I try to put the structure around them. The ideas seem viable at the moment they occur to me, but quickly fade and lose their color and my ambition recedes.

Life has moved on. The sun has risen. The sun has set. Cadence and Finley have gone to school. I've gone to work.

We've laughed at times. We've cried at others. We've seen Harper in books, sunshine and sunsets, and rainbows.

We've even played - ice skating as a family - a family of four. There was smiling and laughing and falling.

And through it all, it has hurt. No matter what, it has hurt.

Sometimes it hurts more than other times. Sometimes I can distract myself with tasks, or music, or friends or alcohol.

But sometimes, when it's quiet, and I'm still - I can't prevent my mind from wandering to the painful images - and the numbing cover comes off - and it hurts.

I know it will get better - slowly. I've been told that, I've told myself that and I've told others that. I want it to get better - but then again, I don't.

Hurting means I haven't forgotten. Hurting means I still love her. Hurting means I miss her.

But I cover it back up. Pat it down, shake my head, and go on about my daily life.

Smile at this person. Greet that person. Yeah, I'm doing ok. I'm here.

But it still hurts. And its going to hurt for a long, long time.

I don't think I'm ever going to get over it - just learn to keep it covered and only take that cover off when I have the strength to endure the raw pain.

I wish I had more uplifting things to say. I wish I had encouragement for all those who shared in Harper's life and are feeling this same pain - but I don't.

It's just going to hurt.

Day +7 : Moving Forward

2015-01-06T14:23:00.000-05:00

Those born on February 29th live with having their birthday only once every 4 years. Harper lived (although briefly) with an opposite existence - she had three birthdays.

One was her physical birth, June 7th, 2005. The second was the day she received her first stem cell transplant. And her third was the day she received her second stem cell transplant.

In the stem cell transplant world, the day of transplantation (which is seriously just a simple infusion) is considered Day 0. All other activity around the transplant is tracked according to how many days before or days after the transplant it occurs.

But a week ago, Harper gained another final and special birthday - the day she gained her heavenly birth, without pain; without anxiety; without cancer.

Day 0.

I don't imagine that heavenly existence is measured in the same way we measure time here on earth; but if it were, today would be Day +7.

One week ago today, Harper left us. The pain is still fresh, still harsh, still sharp. But if cliche's are based in truth (which I believe they are), time will heal our wounds. And while Harper has no wounds to heal, those of us left behind certainly do.

Seven days has yielded little healing so far, but it is starting. I can now walk past Harper's room without tearing up. Walking up the stairs and getting past her door was something I dreaded on Day 0. But we're still far from being able to go through her room and determine what we will do with her things.

The weekend of hugs and tears, remembering her and sharing her memory with those touched by her beauty has helped, and helped me realize you stop crying as your body becomes dehydrated. Spending time with family and friends, either talking fondly about her, or simply sitting quietly together has helped. Today (earlier than I expected) we were brave enough to listen to "Brave" in the car as we were driving.

Soon school will return for Cadence and Finley. I will return to work. Melissa is planning to disassemble and reassemble our house. We will evolve once again to something resembling normal.

Time will slowly erode the sharpness of the pain, but like mountains, it will take eons to smooth completely. Ultimately, it will take joining Harper for the pain to be permanently erased.

7 days down. In another week, it will be 14. While we can't move on, we are moving forward.

Choose Joy

2015-01-04T17:35:00.001-05:00

This is the Remembrance I wrote and read at Harper's Celebration of Life Service:

In June of 2005 we were blessed with the second of what would become a trio of beautiful daughters. From the start, Harper has been a feisty, strong willed child. Her spirit is something with which we sometimes battled when our views of the world differed, but is also something that we cherish. Her spirit and spunk is something she cannot and will not hide - it is part of her and a key to her personality. A defining characteristic.

We did not know in 2005 what this tiny bundle would be destined to become, but as time passed we came to know that Harper would be something special. Only after her diagnosis in May 2013, in the face of incredible adversity, did the true strength and power of her persona begin to show itself.

Harper became a light in the dark for those around her. After coming to grips with her diagnosis and the hand she was dealt, she began to dispel shadows around her with a glow of positivity, hope and joy. Her smile became infectious, and even sitting in a chair, with poison dripping into her veins, making her sick beyond comprehension, her playful attitude lifted the spirits of not only those caring for her but those who simply had the pleasure of being in her presence.

I will not focus on the battle which she fought, but on the victory she claimed. After 10 months of chemotherapy and radiation she emerged NED or No Evidence of Disease. We planned and hosted a party in her honor where friends and family came to celebrate her victory. We played, and danced, and laughed and cried. It was a beautiful day.

That day of jubilation is the day I choose to keep in my mind. It is the picture of Harper that I will continue to cherish. It is the image I hold dear and force my mind to when sadness attacks. It is my rock - my happy place.

As we now know, that day did not last. That day was a peak from which things would fall.

Again, I will not focus on the battle, but instead on the way with which Harper chose to fight it.

Harper chose joy. At the darkest moments, she could still smile. And she would. Her big, gorgeous hazel eyes radiated love. Her laugh could make a room smile. And it did.

Many have worn, throughout this experience, bracelets emblazoned with the words “Hope for Harper.” A constant reminder of the battle she was fighting and that despite the odds and the adversity, we embraced and willed hope. And Harper personified that hope. And she still does.

I choose not to allow myself to yet transition to referring to Harper in the past tense. When I speak of what she has done, I can look back and marvel at the history, but I refuse to acknowledge that there is no future. Harper is still here, in each of us who was touched by her spirit.

Harper physically left us - a conscious choice I believe she made, betrayed in her eyes as she opened them and looked at Melissa and I mere hours before the end. But she did not lose hope, and she did not lose joy.

She took those qualities, with which she enriched the world, and carried them on to Heaven. She is right now blessing the angels and those departed before her with her love, her light, her hope, her joy. She is still Harper - still bringing hope and light and joy to those there and to us here as well.

She is playing with her friend Lydia, whom she met in clinic. Despite our statements and decisions that we would not allow her to become close to other cancer patients - the likely outcome too difficult to fathom - Harper chose joy and shared it with Lydia, someone who had a similar life experience and with whom she could relate. Lydia proceeded Harper, but they are together now.

I know she is riding horses, and smiling and laughing, without pain, without fear and choosing joy. We are heartbroken at her leaving us, but she is now happy, without the weight of human existence to hamper her spirit.

Harper always chose joy, and so, inspired by her, I do so also. Me and my family choose joy. We ask that you also choose joy. The hole in our hearts is real, and cannot be diminished - we have lost a light in our lives that cannot and will not be replaced. But we choose joy because we know that Harper would choose it too.

Choose to embrace the time you are given. Love those around you without hesitation. Forgive and live life without regret.

Take from Harper what she freely gave to anyone she met - Hope and Joy.

Today we share once more from the lessons Harper taught us during the precious time she spent with us - and ask you take with you a bracelet that does not say Hope for Harper - for she needs it not - but instead says “Hope FROM Harper” and “Choose Joy”

Harper has improved our lives, enriched our spirits, and I ask that you each, in whatever way you can, embrace the little piece of Harper that she gave to you. Take Hope from Harper.

And Choose Joy.

Never

2014-12-30T17:35:00.001-05:00

This is the post I never wanted to write. Not that I ever wanted to write most of them.

My heart is broken and my words are absent.

Harper is gone. A bright and shining light has departed this world, leaving us in darkness and illuminating heaven instead.

Words I never thought I could write.

Never.

A Little Good News

2014-12-28T09:28:00.000-05:00

Morning rounds are always a bit stressful. A meeting of the minds (with staff from oncology and PICU) about Harper's status and what comes next. We often get updates on the results of tests and labs as well as an indication of what they want to do for the day.

Sometimes the news is good. Sometimes not so good. Today, just about everything was positive.

Yesterday (Saturday), during the day, her blood pressure and respiration were both all over the place. She spiked high BPs and then bottomed dangerously low at other times. Her breathing was everything from stable to erratic. They changed vent settings. They adjusted meds that help control her blood pressure. They gave fluids (because she was hemodynamically dehydrated), blood, platelets and albumin. They adjusted her A-line (arterial line through which they can take arterial blood for tests and monitor her BP constantly). It was a stressful day. At any one time we had as many as 3 doctors and 4 nurses in our room watching her and adjusting things to make her more stable and comfortable.

In contrast, overnight her status was pretty stable. Her BP was pretty consistent and her breathing was normalized and regular. We got to sleep a little and she was more comfortable.

This morning we got the most recent results of the adenovirus counts in her blood stream. Her last test had the count at 15 million copies of the virus in her blood. As of Friday (we got Friday's results Sunday AM) they counted only 330,000 copies. That is a MASSIVE drop in viral load, and an incredibly good sign that her body and the antiviral drugs are doing their jobs in clearing this infection.

Her white counts continue to climb, despite the discontinuation of her Neupogen and Leukine. Her white count is 13.7 and her ANC is over 11,000. It appears the graft of her stem cell transplant has taken a strong hold, which is very promising. Also, given the heights to which her whites have climbed, we are hopeful that the time period for an inflammatory response has passed, and we don't have to worry as much about a big step back if her white cells "over-react" to the adenovirus infection.

Also this morning we learned that they are intending to leave her blood pressure controlling meds alone today, allowing her a day to be stable and not jump around all over the place. This should further allow her to rest, and should set us up for better starting point for potentially starting to ween her off some of the meds in the coming days, as we attempt to get her off the vent and move her back out of the PICU.

They did an Echocardiogram yesterday as well. The results show a little fluid around her heart, but not enough to logically account for all her cardiac issues yesterday. Nor is it enough for them to want to "do" anything about it.

They also did an abdominal ultrasound yesterday - looking for signs of VOD (Veno-Occlusive Disease) which is a potential negative outcome from the chemo therapy. VOD is a very serious condition that carries with it a pretty high mortality rate. Fortunately, Harper doesn't show signs of serious VOD on the ultrasound (which would be reversal of bloodflow in the liver). However, other signs such as liver function tests as well as swelling that can be palpated (felt by hand) in her abdomen do indicate some mild VOD. Fortunately the level of VOD she likely has (it would take a liver biopsy to confirm if she really has it - not something we're going to do) is reversible and just requires some supportive care.

In order to help, supportively, with the mild VOD, as well as give better ability to give oral meds (which are requires as pre-med and post-med for the antiviral drug), they will also attempt to put in an NJ tube (again - if you recall, she had one before and lost it because of vomiting). This will allow them to leave her NG sump (vacuum that sucks the contents out of her stomach) in place and working when they give oral meds (like the probenecid prior to and after the cidofovir and the actigall to help her liver). I'm also happy they will be doing this under a level of sedation, because doing it again later while she's more conscious brings with it a serious chance of anxiety and stress for Harper.

Overall, after several stressful days in the PICU, it feels like we've turned a corner. We may finally be out of the woods when it comes to major risks. Obviously things can still go wrong (and I'm confident some of them will) but they feel manageable at the moment.

Continued prayers, kind thoughts and good juju sent her way are all appreciated. With a little luck, we could be looking at single-digit days until she is off the vent and (hopefully) out of the PICU and back to the oncology floor. We won't hold our breath, but we like the direction things are headed.

Merry Christmas

2014-12-25T10:07:00.001-05:00

No presents. No tinsel. No gathering round the tree.

No carols. No feasting. No squeals of delight opening gifts.

This has not been a traditional Christmas for us. Hell, it's hardly felt like Christmas at all.

Instead we have beeping monitors, IV tubing and the ongoing whooshing of a ventilator. Instead of family and friends coming to visit, we have doctors, nurses, respiratory therapists, and X-ray technicians. No giggles on Christmas morning, but no shortage of monitor alarms.

But Christmas is not about presents. It's not about lights and food and carols. It's about the love of family and friends.

Despite our physical distance I have never felt more loved during a Christmas holiday that I have this year. Despite Melissa and I camping out in a small ICU room, despite Harper's inability to communicate more than a yes or no headnod, despite everything that makes this the most unlikely Christmas, we know we are loved and can feel it from all sides.

It's not something I can easily explain, except to say that I am so thankful for an eldest daughter who shows strength and wisdom beyond her years helping her youngest sister try to understand why mom and dad aren't there on Christmas morning. I am so thankful for a youngest daughter who misses us and wants us home. I am so thankful for a middle daughter, who charges forward, sometimes drawing will and force from thin air it seems, and continues to fight for her life and her future. I am so thankful for a wife who has put her life on hold for as long as it takes to care for and support Harper, and still shows me love despite all my shortcomings.

You could argue that this all sucks, that I've drawn a shitty hand that I've no choice but to play. I often find my mind going there as well. But in reality, I am a lucky man. I have a wife that loves me, children who are the biggest blessing I could never have even imagined, and friends and family who have stuck by us, loved and supported us, and are showing no signs of slowing down.

No, this is not your typical Christmas for me and my family - but it is still an amazing Christmas of realizing and reminder of the love I find myself surrounded by - that I do not deserve.

And so I say, in a most unconventional way, it is a Merry Christmas.

A Step In The Right Direction?

2014-12-22T19:15:00.001-05:00

One of our worst fears for the second transplant has come to pass - Harper is now in the Pediatric Intensive Care Unit (PICU). Our experience with the PICU at Kosair has always been great care accompanied by an excruciating ordeal for us, as the intensive care leaves little opportunity for rest for us as the parents/family.

What's odd is that one of the main reasons she is here is because she needs rest - something she has not been able to do for the past 3 days. She has had a steady decline of her cognitive function with combative tendencies and extreme confusion. On top of that, her breathing has become more and more strained. Her abdomen has been swelling, which is a normal reaction to the adenovirus infection she's been fighting.

The confusion and combative nature could be related to several things. The amount of virus in her blood (which is very high) could have crossed over into her brain. She could have received too much of the multiple drugs she's been on for pain, anxiety, nausea, etc. She could be simply exhausted. Or she could have bled in her brain due to the fact that her clotting factors in her blood have been completely out of whack, causing her blood to not clot. Or it could be a combination of some, all or none of the above.

Since arriving at the PICU she has had a CT scan which has shown nothing abnormal, so hopefully no bleeds in her brain. That's a good thing, but I wouldn't rule out them doing an MRI to be sure.

Once we arrived at the PICU, after days of fighting, squirming, and extreme discomfort, Harper stopped fighting. The PICU team quickly intubated her, and she is now breathing off a ventilator with sedatives, paralytics and amnesia meds - but that's why we came. We wanted to calm her down and let her rest. Even if it is chemically-induced rest.

We don't know how long we'll be here. We don't know what will happen. But for now she's resting - which is a step in the right direction, even if it doesn't feel like it.

It Will Get Better

2014-12-16T22:07:00.003-05:00

It will get better.

These are words I find myself saying more often than I'd like.

"The pen is mightier than the sword" opined Edward Bulwer-Lytton, but I am confident he never had to strike that same sword against an iron rod for weeks on end, dulling it to a gentle curve. Situations, it seems, has a tendency to turn sharpened steel into a lead pipe.

It will get better.

We are 14 days into this hospitalization, the hospitalization we hoped would go smoother than the last. Who were we kidding? The last stay lasted half as long as we expected. This one may last longer than we feared for the first. We may have set our hopes too high.

It will get better.

These drugs haven't given Harper her deep tan (as if she needs one - she browns after 15 minutes in the sun), but they've done their damage. Her mouth is a wreck, her strength sapped. The C. Diff is back with a vengeance, in some ways rougher than last time. Her blood pressure was up, now it's down, and her pulse is racing. And now adenovirus. On top of the normal cocktails of infection preventing medicines, we've now added Cidofovir, which among its many attributes can impair kidney function - which we will attempt to prevent with probenecid.

It will get better.

Her platelets are striving for zero, despite regular transfusions, and those platelets can't work correctly because she doesn't have enough Vitamin K (that happens when you don't/can't eat), so we are supplementing that too. Her electrolytes are out of balance as well, likely impacting her BP and pulse irregularities.

It will get better.

Because her platelets are low (and not working), she's bleeding in her stomach - which amassed enough this morning that it made her nauseous enough to throw up. Yes, she threw up blood - multiple times. And during one of those times, she also threw up her NJ tube. She then pulled it the rest of the way out on her own. Given her current status, they will not replace it - so all those meds that can't be given intravenously she must now swallow - with mouth, throat and lips that are blistered.

It will get better.

Spirits are at their lowest in some time. Not since initial diagnosis have things looked so bleak.

And the words of encouragement, the words that have meant so much, for so long, are beginning to lose their edge. Oh, there are many things you could say, like it being darkest before the dawn - but someone beaten and bloody, sitting in the darkness is likely not rallied by those words.

Edgar Allen Poe said "Never to suffer would never to have been blessed" but I am pretty confident that after 19 months of treatment, Harper is far from feeling blesses.

No, there is but one thing I have to say - and it is a belief, while shaken by current events, while rattled by pain and suffering and blood, while rounded smooth by repeated strikes, is still strong and a notion I will not abandon.

It will get better.

I'm sorry

2014-12-14T11:50:00.000-05:00

I've used this platform (my blog) to complain some about being a "single dad" while Melissa and Harper have been in the hospital undergoing stem cell transplants. I've publicly lamented my situation because I'm not accustomed to being solely responsible for the entire operation of our household and supporting the comings, goings and activities of 2/3rd of our children along with trying to work full time.

Last night, with Cadence and Finley safely sleeping over at a friend's house, I went down to Kosair to give Melissa a few hours break. After last night, I have reconsidered some of my previous rantings and would like to issue the following statement:

Melissa - I'm sorry.

I'm sorry for sometimes secretly questioning the amount of work you put in at home on an everyday basis. After the past couple of months I have a new appreciation for what it takes to make a household function and how hard you work.

I'm sorry for the travel my job sometimes requires, leaving you home to tend to everything alone. While I maintain there is much work involved when I travel, including what I would normally accomplish in my job as well as the objective of the travel itself, I realize that what little I actually do at home is then compounded on top of what you already do.

I'm sorry that you have born the brunt of the effort in helping Harper through this terrible ordeal. After last night, with me staying with Harper for a single night while you got some much needed sleep, I can better appreciate the hardship you are enduring. Living life in a 12x12 room; interruptions every 2 hours (minimum) 24/7; dealing with seeing your own daughter in constant anguish; not knowing if the pain of this process will ultimately bring the healing we pray for - I am in awe of your patience and of your strength.

A woman's love comes in many forms, and the forms you are displaying now are a testament to your character and reinforces my love for and dedication to you. I could not ask for a better wife, and I pray your daughters someday come to truly appreciate the gift that you are as their mother.

I am not the man you always need me to be, but you are always the woman you shouldn't have to be.

We will get through this. Not because anyone (including me) says it will be so - but because of you.

I am so lucky. I am so very grateful for you. For the items above, for other things I likely don't even realize or remember and for the hardship you are enduring - I'm sorry.

An Open Letter to Parents of Kids Without Cancer

2014-12-09T19:55:00.003-05:00

An Open Letter to Parents of Kids Without Cancer:

I remember where you are. I remember going to work. I remember coming home to the craziness (or what I thought was craziness) of a home with three young children; a wife who was a stay-at-home-mom who handed me a baby and said “I’m done. You take her.” I remember.

I remember infants that will only sleep when laying on your chest in a recliner. I remember infants that would later only fall asleep listening to Toby Keith on a CD player that didn’t have a repeat function, waking as soon as the CD ended. I remember diapers, and diapers, and diapers, and explosive poop all up the back of a onesie.

I remember planning my week around kids’ activities. I remember tee ball and horseback riding and swim team. I remember bedtime stories, followed by more bedtime stories, followed by countless visits by a young one into our room and the follow-up escort back to their bed. I remember falling asleep on the floor next to a toddler bed, waiting for the child to fall asleep so I could go to my bed.

I remember a regular life. I remember normal. I remember a time before hospitalizations, clinic visits, CT scans, ultrasounds, chemotherapy and radiation. I remember a time before knowing how to read a CBC. I remember a time before central line care. I remember a time before Neupogen injections, IV and feeding tube pumps on an IV pole in a child’s bedroom; before hospital grade HVAC filters and air purifiers running constantly. I remember a time before weeks upon weeks of falling asleep alone with my wife far away on an uncomfortable vinyl convertible chair/bed just feet from a hospital bed and alarming IV pumps. I remember a time when the site of bald child would shock me.

I remember telling a child I was too tired to read a book. I remember telling a child I didn’t have time to play a game. I remember telling a child no more hugs tonight. I remember telling a child no more snuggles.

I would give almost anything to go back and read that book, play that game, give that hug or enjoy that snuggle without the omnipresence of cancer reminding me that these times may be limited.

You’re tired. You’re frustrated. Your life may not be going as expected. But you still have the precious resource of time.

Make time. Make time for a book, a game, a hug or a snuggle. Not only will they quickly grow out of these things, but tomorrow you may find your time is quickly running out.

Sincerely,

A Parent of A Kid with Cancer

Forever

2014-12-06T15:47:00.000-05:00

Its been over a month since I last posted here. It does't seem like its been that long, but dates don't lie.

Harper got out of the hospital weeks earlier than expected, rebounding from the first round of high dose chemo and stem cell transplant faster than anyone would have guessed. In fact, we were expecting her to take longer to recover than most kids.

She got to come home and be here for Thanksgiving. When she first arrived home, her appetite was almost non-existent, but as time went on and Thanksgiving arrived her appetite staged a comeback, and she ate two cornish hens that Thursday.

We had a nice comfortable weekend which was far too short and was followed by Harper going back into the hospital. We have hopes that this combination of drugs will be less harsh than the first with as speedy a recovery as the last time.

After a couple of days of rest, Harper will get another infusion of her own stem cells, which will begin the process of rebuilding her once again decimated bone marrow.

Just a few moments ago the last drops of chemotherapy were pumped into Harper's veins. My hope, my prayer, my dream is that those last drops are the very last drops.

We've been here before. We've been at the end of treatment. We've held hopes high that we were done. And we've later found our way here again.

If we're lucky (which Harper will quickly point out she's not been very lucky so far) we're done. If we're lucky, the chemotherapy she received today will be her last. Not just of this treatment course, but forever.

There Are No Words

2014-11-01T12:22:00.000-04:00

I have come to realize that the English language is sometimes wholly inadequate when it comes to expressing the deepest emotions. There simply are no words to invoke that can truly convey the greatest joy or darkest pain.

Today is a day where appropriate words are needed and none can be found. Today is a day I wish to express hurt and anguish and torture and yet I am unable. Today is a dark day. The darkest of days.

Lydia is gone.

I am trying desperately to see good, to see positive, to see light. She is no longer in pain. She no longer has to bear a burden too big for her shoulders - a burden she bore with grace and cheer - a burden no child should have to take on.

But I am blind - blinded by pain. Tears fall. My heart breaks. My soul is crushed.

The world is darker now than any time I can recall.

As harsh as all of these words are to describe what has occurred and what it has done to me, they are not acceptable. They do not even begin to touch the depth of the emotions.

And in this darkest hour, for I refuse to acknowledge or entertain a darker one, I reject the similarities between the journeys of Lydia and Harper. I must push down the pain, the hurt, the howling heart, wipe my face, and carry on. For in this crushed state I cannot allow this pain to spread to my girls. I must be strong to shield them from this truth. Yes, they will come to know it. Yes, it will harm them too. But not today.

Today I will cover it, and proceed with optimism, to preserve their tender hearts a little longer. Today I will hold back the tears and fight the urge to assume the fetal position and weep. For them, I will not relent to share this news until I am strong enough to hold them up when they fall under the crushing weight. For Harper it will not be until SHE is strong enough, and that may be quite a long time. Harper must maintain her fighting spirit, and we must not allow an attack upon her strength.

And so, after a momentary breakdown, overlapping the drafting of these insufficient words, I go on.

Lydia - you are loved, and your absence will be felt, for me, forever. There are no words.

A Deeper Explanation

2014-10-31T10:28:00.001-04:00

I often use this blog to either express humor or emotion and Melissa's Caring Bridge site generally shares the day-to-day, less emotional and matter-of-fact facts about what is going on with Harper.

But today, I want to just share a bit more detail on what Harper is currently going through, so people have an appreciation of her experience. Some of this may duplicate things I've shared before, on different posts at different times, but I'm trying to put it all in one spot.

Harper is undergoing what is called a Tandem Autologous Stem Cell Transplant. That's a long name, I know - but it basically means that she is getting 2 stem cell transplants, both times receiving her own stem cells. The decision was made to do a "tandem" transplant in order to be as aggressive as we can be against her particularly aggressive cancer (as it showed signs of getting even MORE aggressive based on the most recent pathology).

In July 2013 Harper underwent a stem cell "harvest." A temporary central line was placed, in her neck. She was given high doses of Neupogen to stimulate her bone marrow to produce "extra" stem cells which were then present in her circulating blood. Her blood was then taken out through the temporary central line, filtered through a centrifuge, the stem cells (and some platelets) removed, and then the blood was returned to her through the same temporary central line. All in all they collected enough stem cells for her to go through transplant 7 or 8 times. Since harvest, her stem cells have been sitting in cold storage awaiting the time they are needed.

In order to do a stem cell transplant, the body has to be "conditioned." This works out to mean that high dose chemotherapy (or radiation - or potentially both, I suppose) must be administered to kill off the existing bone marrow. The drugs used can be some of the same drugs that are used in "regular" chemotherapy, or different. In Harper's case, the first set of drugs included both types. She first received thiotepa (which she had never gotten) and then received cyclophosphamide (which she had received previously). The thiotepa is generally reserved (especially in the doses used for Harper) for transplant situations because the drug completely kills the bone marrow. If you didn't administer stem cells, the patient's bone marrow would take a long time to recover, if it recovered at all.

The thiotepa is only produced in Italy and is incredibly expensive. It also has a pretty harsh set of side effects. The drug "burns" healthy tissue and is eliminated from the body through excretions like sweat and tears. This is important because if the excretion containing the drug sits on the skin (or any tissue) is can cause significant burning. In order to protect from this, they administer water baths multiple times per day. Still, they can't protect her completely, and so after receiving this drug Harper has burns over a lot of her body, especially in areas where she has skin folds, like under her arm or between her legs. She also has some on her face where tears or saliva would have been when she cried or drooled in her sleep.

The burns from the thiotepa extend to more than just her skin, but also are present where any secretion might be - including her mouth, throat and the entirety of her gastrointestinal tract. This manifests in mucositis - or sores in her mouth, throat and GI tract. The pain from this is pretty excruciating, requiring strong opioid pain medication given through a Patient Controlled Analgesia (PCA) pump. Just like after surgery, she is receiving constant pain meds with the option to "hit the button" when the pain is not controlled. (Harper doesn't like pain meds and resists pushing the button - so we have to do it for her, especially when she is moaning in her sleep)

Once the bone marrow has been killed off, and the chemo has a chance to start leaving her system, then the stem cells are infused. It's a pretty simple process. They are thawed and then administered directly into her blood stream through her Central Line. The only real "issue" is the preservative used when freezing them - DMSO - can cause a reaction, so they monitor her very closely after administration. The DMSO is them excreted through her breath - filling her room with the distinct aroma of creamed corn for several days.

Once the stem cells are in her body - we just wait. The stem cells are supposed to find their way into her bones and begin to repopulate her bone marrow. In the mean time blood cells that are produced by the bone marrow are then in short supply. These include red blood cells, white blood cells and platelets. The red blood cells and platelets can be supplemented through transfusions, but the white blood cells cannot. So, while we wait, Harper essentially has no immune system. Until her white counts recover, she is not allowed to leave her room, visitors are pretty strongly discouraged, and the nurses and doctors use precautions like gowns and sometimes masks (depending on the situation) to protect Harper from anything they might have or might have picked up while caring for another patient or patient's family.

The pain associated with the mucositis also prevents eating and swallowing. In preparation, the day after her stem cell infusion, but before the mucositis really set in, they inserted an NJ tube (naso-jejunal). This tube goes through her nose, down her throat, through her stomach and into her small intestines. This allows her to receive nutrition and oral medications without having to swallow. It also reduces the likelihood of vomiting from these oral meds and food (though it doesn't eliminate the vomiting completely. Harper hates it, didn't want it put in, and had to be completely sedated in order to have it inserted.

Once the stem cells "graft" (the term used for repopulating the bone marrow) her counts will slowly rebound as the bone marrow grows. Her counts will see-saw for awhile, going up, then down again. Once she reaches an ANC of 500 consistently (several day) and assuming no other complications she will be allowed to go home, with severe limitations on what she can do, where she can go and who she can see. She will be seen daily at the hospital for weeks to monitor her recovery.

For most stem cell transplants, the recovery would go from there. However, because of the tandem, after a few weeks at home (we're hoping will overlap with Christmas so she can home for the holiday) she will be re-admitted to the hospital and the entire process will happen again. The second time they will use a different set of drugs, but they will come with their own complications, will kill of the newly grown bone marrow, and we will have to wait for the second infusions of stem cells to repopulate and rebuild in order for her to finally come home to stay.

All of this is intended to give her the BEST chance of eliminating ALL the cancer cells in her body. It is excruciating, and it is so very hard to separate the family for such an extended time, but it gives her best chance at long-term survival.

If you made it all the way through to this point, you hopefully have a better appreciation for what Harper is experiencing and what the next few months hold. If all goes smoothly, Harper will be home and recovering by February.

PSA

2014-10-26T22:17:00.001-04:00

Melissa wrote an incredibly powerful Public Service Announcement a few days ago that you can find here.

I'm not sure I have the energy to write anything quite as thought provoking or raw and honest tonight. So, I will take a different tact. My thoughts are meant in no way to be in conflict with or undermining of Melissa's comments, but instead are in jest; a coping mechanism if you will indulge me.

A Public Service Announcement - To My Children

The Laundry Fairy is currently on sabbatical with an undetermined return date. Until such time as The Laundry Fairy is able to return to her duties, a substitute fairy will be standing in.

Please be aware that the following may occur:

1. The laundry may pile up - While the substitute fairy will try his hardest to keep up, there may be occasions that laundry may not be finished as quickly as you are accustomed. This may mean you may be required to wear more than your favorite three shirts and 2 pairs of socks.

2. The laundry may not be folded neatly - The substitute fairy has not had the level of practice nor has been blessed with the magical ability to fold clothing in the neat, clean and straight lines as you have experienced with The Laundry Fairy. As such, your clothes may not fit in your drawers quite as well. You may even have to resort to refolding your clothing when the substitute fairy has folded them in a manner not to your liking.

3. Putting the clothes away - The substitute fairy is working multiple jobs while The Laundry Fairy is away, so you may be asked to put your own clothes away in your drawers. While we understand this is an incredible inconvenience, they are, after all, your clothes. See related item #2 above.

4. Bleach - Owing to inexperience your whites may not be quite as bright or, alternatively, may smell like bleach, depending on if the substitute fairy has used too much or too little bleach. In light of these expected errors, we ask that you try not to spill as much stuff on your white clothing and, in alignment with our longstanding policy on the subject, we remind you that your shirt is not a napkin.

The above is not an all inclusive list of potential inconveniences, but represents the issue we expect to experience first. As other issues are identified, you will be alerted, likely by being told you will have to do something yourself or that your perfect outfit may have to be altered.

Also, please be aware that The Dishes Fairy, The Cleaning Fairy and The Taxi Fairy have accompanied The Laundry Fairy, and as such substitutes for these fairies are also being sought. We expect that substitutes for these fairies will also pose challenges and you may be asked (read instructed) to do things you are unaccustomed to. Our best advice to help you get through this difficult time is - get over it.

Thank you,

Fairy Management

A Chink in the Armor

2014-10-23T19:51:00.001-04:00

This has been a long week. A very long week. Much longer than I had realized or allowed myself to acknowledge.

My emotional armor is well polished, fits well and is comfortable. My sword, hardened steel, sharpened by months of honing, cuts down adversarial thoughts before they can get near me. My helmet, gleaming in the sunlight, repels even the harshest blows. I am well protected against the expected enemies of fear, despair and worry. You might think, to look upon me, that nothing can penetrate. Nothing could get to me.

But even the most glorious warrior has an inevitable weakness. Icarus got too close to the sun. Achilles had his infamous heel. Sampson had his sensitive hair.

Me? My weakness is unexpected, unexplained and incredible kindness.

With Cadence at her 4H archery practice, Fin and I were getting ready to read a book when the doorbell rang. Fin called out that she didn't know who it was, so I went to shoo away the likely political candidate's rep.

What I found was a very nicely dressed young couple, who somehow knew my name. And they knew about Harper. She told me she works for a local jewelry store, and someone had come into her store today, and told her the story of our brave little girl.

She also knew it was a special day, and she wanted to give Harper a gift. A very nice bracelet. I accepted it graciously, and thanked her so much for her generosity. (I've gotten good at the art of a smooth acceptance of generosity) The couple shook my hand, and departed, taking up no more of my time.

I walked back inside, still fully protected in my armor. Not a chink had shown. And then I read the card. I hope that the giver does not mind that I share her words:

Happy "Birthday" Harper!
Until today, I did not know who you were, but now I am touched by your story. It's no surprise that words about remarkable people travel far. Beautiful people don't just happen, they are created with immeasurable grace. Congratulations on how far and how much success you've achieved. May you keep being brave and above all believe.
I wish you and your beautiful family all the love and laughter in life.

God Bless You Harper!
-V

My armor fell from me as if it had melted. My sword vaporized. My helmet hit the ground and shattered. And I wept uncontrollably.

Someone I've never met felt so compelled by the mere story of Harper to seek us out and give her a beautiful card and generous gift. She showed love and kindness to someone whom she did not know. And with that gesture, she breached all my defenses, and truly humbled me.

I work hard to put on an air of confidence and strength. It takes an incredible amount of effort to keep up appearances, and I am drained. It is important, I believe, for Harper and her sisters to have normalcy preserved (as much as we can) and my armor is useful. At work, the armor allows me escape as well.

But occasionally, as occurred tonight, the armor fails in its duties - a chink is found - and the enormity of this life, this situation, this family under attack is realized.

Thank you to everyone who has been so supportive and generous to us through this prolonged and renewed crisis. Maybe you only saw my armor. Maybe the protection has held. Maybe that day I had more strength and maintained the barrier. Maybe you knew the weakness and chose not to expose it.

But it is there, and perhaps the armor is not as thick as it appears. Maybe the sword is heavier than I let on as I wield it. Maybe the helmet does not offer the protection you'd guess based on its shine.

Maybe, just maybe, there is a chink in the armor.

Happy Birthday Harper

2014-10-23T14:02:00.000-04:00

Today is a big day. Today is Harper's Birthday.

Of course many people are probably currently scratching their heads. "Wait a minute. I thought Harper was born in June. How could today, October 23rd, be her birthday?"

Well, anyone contemplating that conundrum - rest easy. Your recollection would be right. Harper did, in fact, enter this world and join us in June of 2005. However, being born in June doesn't preclude today being her birthday as well. It sounds a bit like a Lewis Carroll situation, where perhaps Harper is pulling an Alice, and romping around in Wonderland, chasing a white rabbit.

The significance of today does not, however, hing upon smoking caterpillars, vanishing grinning cats, guillotine-obsessed queens with a fetish for hearts, or mad men dressed in velvet top-hats. Today's significance hinges on a short 60 minute infusion.

Today, after a week of bone marrow killing chemotherapy, Harper's now dying immune system is being rescued and "reborn" - receiving an infusion of her own stem cells. This is a day we began planning for the day she was diagnosed, and we hoped and prayed this day would never come. And here it is.

And while the actual experience of getting a 60 minute infusion is nothing in comparison to the months of chemo and weeks of radiation, it is in fact, a major milestone. After everything Harper has endured, with strength and grace that defies her physical young age, today is her rebirth. She is once again entering this world anew, the same person, but changed.

Most kids would likely drool over the possibility of two birthdays. Two days of celebrating. Two days of gifts, showering of affection. Two days of cake, ice cream, or whatever they desire. But the price is high, and not something I would willingly offer to anyone who had a choice.

But, we put aside the sad circumstances that has led to this day. We ignore the discomfort and often excruciating physical and emotional pain for both Harper and us as we have endured the past 17 months. We raise our heads from the downward and defeated gaze we would otherwise assume if we would just give in to it all.

And we say - Happy Birthday Harper. May God bless us with many, many more of them. And if it means buying cake, balloons, and presents multiple times a year to celebrate the great gift of this precious little girl, I'm in.

PS - If all goes as planned, Harper will end up with THREE birthdays (due to a tandem transplant plan which will mean she will do this all again in a few weeks). That will mean three days a year of celebrating. And it will be all that much sweeter.

Saddle Sores and Smiles

2014-09-23T23:26:00.000-04:00

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

2014-09-19T00:30:00.001-04:00

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.