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.