Acadia - Day 1

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)

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

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

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

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

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

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

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

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

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

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?

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

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

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

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

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

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.