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.

A Deeper Explanation

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

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

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

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

Paris.

Locations and experiences far and wide on the table.

Hawaii.

Pick a place, any place.

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

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

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

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

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

What followed was exactly what Harper was looking for.

Horse, horses and more horses.

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

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

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

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

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

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

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

We all got our wish - saddle sores and smiles.

PS - Thank God for Gold Bond.

Try Again

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

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





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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tomorrow we will try again.

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

A Wish And A Prayer

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

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

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

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

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

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

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

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

And that's all we have.

A wish and a prayer.

Guido Update

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

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

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

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

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

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

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

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

Guido

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What Will You Do?

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

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

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

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

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

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

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

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

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

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

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

Make September Childhood Cancer ACTION Month.  

What will you do?

A Personal Anthem

I am convinced that I would not be the person I am today if it weren't for music being a ever-present and powerful force in my life.   Music is an outlet, an outward expression, and even an input from others that is unique and cannot be replicated in any other form of communication.  It is honest, open, often raw, and yet still soothing and open to interpretation by the listener.  It allows an artist to express deep feeling, and the audience to take from it what is impactful and moving to them - each in their own way.  It's beautiful.

Many who are familiar with Harper's story and her journey likely know that music has been a powerful influence.  There is not a time that goes by that we are in the car that Harper (or one of her sisters) does not request music - and not just a radio station, but specific songs, played off of Melissa's iphone.  They have a playlist of songs that they like; that speaks to them.  They take turns requesting songs, and Melissa plays DJ in the front seat.

In the middle of Harper's first round with cancer, we caught her singing along to one such song...

I was driving, and took the video from the front seat.  Yes, I cried.  A lot.  As we watched her sing along to Brave, by Sara Bareilles, we could heart her inner strength come out.  She was bald, full of chemo, struggling for her life.  And yet, we knew she was fighting - it came out in her voice.

She won that first round with cancer.  And we celebrated, with a huge party, inviting her supporters to say a huge THANK YOU for the love and generous support they had provided through Harper's journey, and celebrating her victory.

Dean Heckel and Holly Nelson Jackson sang at Harper's party.  As a special request, we had asked for them to sing Brave.  They invited Harper up, and this is what happened.

 

This time it wasn't just me crying.  There wasn't a dry eye in the house.

 

About a month later, she got the chance to sing with Dean and Holly again, at Huber's Winery.

 

 



 

Brave, undoubtedly, became Harper's anthem.  It represented the incredible strength she showed, fighting and beating Stage 4 Wilms. 

 

After a short few months, Harper has relapsed.  And today, after just one round of chemo, she's lying in the hospital, unable to eat without throwing up and battling a fever.  At this point, we still don't know for sure what is causing all of her current issues.  And her beautiful hair, which was coming back super-soft, is falling out again by the handful. 

 

 

Now, more than ever, as Harper is battling to beat cancer once again, it is as important as ever for her to be brave.  The future is scary and uncertain. 

 

Harper - I want to see you be Brave

 

An anthem for Harper - and the rest of us.

 

***

 

Don't forget to take a look at the new Hope For Harper shirt - order by Aug 23rd.  Proceeds to benefit Harper's care. (click on the shirts below)