A Killer On The Loose

Every 6 hours, a killer takes another life. Four times every day, this ruthless and heartless maniac steals the life of an innocent child. Yet, no alarm sounds. No all points bulletin is issued. No man-hunt is mounted. No warrant for arrest.

If an individual person was perpetrating these heinous crimes, there would be a response. Police would swarm. Government officials would demand action. The public would cry out for justice.

But we plod on in our daily lives and there is silence - a quiet apathy to the ravaging damage to families; to parents; to children.

Every 6 hours, a child dies from cancer. During your long day at work, likely 2 kids succumb and are unable to fight on. While you sleep tonight, another family has a precious gift taken from them, and the world is robbed of what miracles they might have contributed to humanity.

And yet, we have a system that could, with proper focus and intent, produce justice; could bring about an end to the travesty occurring in the lives of so many children. But it sits idle, focusing elsewhere.

I generally believe in a free market - but the "market" of drug development is crippled by the financials of childhood cancer. While so many die and could use new therapies, new drugs, new treatments - the numbers just don't add up.

New drugs cost hundreds of millions of dollars (on average $800 million) to bring to market - and drug manufacturers are generally run by smart business people. If there are only a few hundred or even a few thousand people a year who will end up "buying" their product, they know that they will likely not recoup their huge investment. So, bright minds in the medical research industry focus on diseases of the the masses, ignoring the few.

Only 4% of all government-funded cancer research focuses on childhood cancer. That means we put 96% of all of our cancer research funding into extending lives of people who have had much more chance to live. It sounds callous, but we are spending a majority of our money researching treatments for the old, and allowing the young to die.

The products that Harper is receiving for her Wilms treatment were introduced in 1959, 1963, 1967, and 1983. That means her newest therapy was introduced 30 years ago. How far have other cancer therapies progressed in the last 30 years?

This demon haunts the rooms of the most innocent, and we sit back and let it happen, without outcry that reflects the enormity of the injustice.

There's a killer on the loose. Someone, somewhere needs to come up with a way to stop it.

Getting Tired

We all say it. "I'm tired." Whether we mean physical fatigue or mental exhaustion, it is a common complaint among human beings.

Tired comes with age. It also comes with physical or emotional stress, and often a combination. Lack of proper sleep can also prompt us to tell others of our malaise.

But we're currently learning about another type of tired - one I personally wasn't familiar with before. It's not emotional tiredness, which we certainly are. It's a physical tiredness, but not the kind you might initially think of.

Harper was diagnosed on May 15. Not long after, she started chemo. On that day, and for many days following, we have pumped fluids filled with drugs into her bloodstream. Drugs that are technically poisons, causing cell death - but strangely that's what we're hoping for.

Initially, Harper reacted rather miraculously to the chemo. Or rather, she didn't react, physically, like was anticipated. Most people lose their hair (check) and experience extreme nausea (no check). Harper didn't really experience nausea. We medicated with Zofran before and after the chemo (a wonder drug, by the way) and she really never got too sick. At least not like we feared. The nurses and doctors were amazed at her strength.

Then we took a chemo hiatus (after 4 rounds) and Harper had her kidney out. Her hair started to grow back. After the initial pain and discomfort from the surgery, Harper was looking good. Then we started back to chemo.

Since re-initiating chemo, we are starting to see signs of less and less resiliency with Harper. Her blood counts (especially her white cells) react far more violently to the chemo. In fact, her 6th round of chemo was delayed a week, waiting for her whites to come back up on their own. In the end we did some Neupogen to get them back up. We expect to use a lot more Neupogen going forward.

She also has been much more nauseous, vomiting often. Her appetite is waning again, and I'm not surprised given how upset her stomach has obviously been. And the nausea is prolonged - lasting days and days after chemo - not resolving quickly like before.

All in all, her body seems to be indicating - "I'm tired." Dealing with the infused poison is becoming a major battle, and Harper's little body is showing signs of battle fatigue.

We are 4 rounds from the end of the chemo course laid out. If we're lucky, that will be it. Just 12 more weeks (assuming no additional delays) and then her body can rest. And she's certainly due a vacation. She deserves it.

Until then, we carry on. 3-4 clinic visits a week, checking counts, getting chemo, conducting CT scans, administering breathing treatments... No wonder - with all that - we're all tired.

She is still here

This is my first post in more than a month. When I started to write at the beginning of Harper's cancer journey, it was therapy for me. It was an outlet for emotions that I could not easily show or express in front of her. It also acted as a communication method for some of those in our lives who began following the story and support us.

It seems such a long time ago now, but this all started a mere 5 months ago. During that time we've experienced multiple surgeries, 6 rounds of chemo, multiple CT scans, echos and ultrasounds, and literally countless blood tests.

Harper has withdrawn and returned to us (emotionally) several times. She has lost her hair, been kept from school and been robbed the innocence of just being a "normal" kid. Everywhere we go, she is different. When we're in public, she often wears hats to hide her head. Generally only with friends she is comfortable with does she bare her scalp. (Though her confidence and comfort with her physical appearance has improved).

The chemo that she once surprisingly seemed to be immune to (side effects) are now taking their toll. My personal guess is that the removal of her kidney has reduced her body's ability to remove the drugs as quickly as they did before, and now the chemo is doing what we expected all along. She is much more nauseous now, though the drugs are the same.

All of this can be tiresome, troubling, and disheartening - until I think of one simple thought - She's still here.

When were initially told the diagnosis, we wept. Not just cried - wept. Physically shaking, tears flowing, holding each other (Melissa and I) left alone in a room, away from Harper. We looked in each other's eyes, and wordlessly both acknowledged what we had feared since admission - we could lose her. But, she's still here.

The pathology is good. Almost total necrosis. The drugs are working. The poison we allow them to pump into her veins, that causes her hair to fall out, that (now) makes her nauseous, that drains her of energy and spirit, and could be permanently damaging her in ways we may not understand for years - it's working.

Others are not so lucky. We have watched, on Facebook especially, other children with cancer fight, and lose. We have watched others fight as valiantly and as courageously as Harper, and go on to a better place.

But she is still here.

We still have much road ahead. Even once the current treatment plan is done, and even if we are "cleared" around New Years (as is our current hope) we will wonder, worry, and stress over the next scan, and the next, and the next, never being completely confident that it won't come back.

But, for now, she is still here. And we have hope. Hope that despite the odds (which have never been great) that Harper will win. Hope that she will emerge victorious against the physical demon that is cancer. Hope for Harper.

She is still here.

And so are we.

Tired, troubled and disheartened at times, but lifted up and revived by our family, our friends, and Harper herself. But we are here, for her.

And if we're lucky, we will say for years to come - She is still here.

Amazing

Harper continues to surprise us, though I suppose if I were smart, I'd stop being surprised. As has been her pattern, she handled the most recent chemo round (her first since her kidney removal surgery) better than could be expected. She's had a little nausea here and there, and she did vomit once in the hospital before coming home, but by and large, she seems relatively un-phased.

We've learned not to underestimate her willpower, and her desire, it would seem, to live a "normal" life. Close friends of ours and their daughters joined us today (Sunday). They were up for anything, and so, it seems, was Harper.

We started with sushi (Harper's suggestion). It was really hibachi with sushi added in, but as wild as it seems, it's one of Harper's favorite foods (second to Skyline, of course).

After our bellies were full, we explored the Falls of the Ohio park, including walking around down on the fossil beds. With the river down and the spillway closed, there was a lot of space to roam, and Harper kept up, if not led the pack. She event climbed up and down piles of rocks. It was hard to tell she'd had had chemo just 48 hour prior.





Next we ventured to the other side of the Ohio to the Mcalpin Locks, where we waited and watched a river barge maneuver through the locks headed downriver. Having not seen it before, it was interesting, but in actuality, there's not much to actually "see".

We then rewarded ourselves for our hard barge-watching with ice cream from Polly's Freeze. Yum. Not good for the waste line, but definitely good for the soul. Sad that they will be closing for the season next weekend, but it just makes their reopening in the spring that much sweeter.

Through it all, Harper pushed through, rarely complaining. She enjoyed herself. She enjoyed playing with her sisters and her friends.

I am continually surprised by her - her strength - her calm - her general positivity. I don't know if I could be the person she is if I were in her shoes. She truly is amazing, and I thank God for allowing us to keep her - hopefully a long while longer.

Good News

Today was a day for follow-up doctor appointments. Almost completely good news.

We met with both the oncologist and the surgeon.

The surgeon is happy with her progress. She got out of the hospital following surgery faster than expected, and has recovered faster than most who undergo the surgery she experienced. Just a few more days (3 weeks from surgery to be exact) and she'll release her to continue chemo.

The oncologist had the best news, with a small dose of scary news. First, the good news.

She confirmed the tumor tissue removed during surgery shows 99+% necrosis. This means the chemo is WORKING. This is absolutely awesome to hear. She is very happy (as are we) with Harper's progress. She wants to start back up on chemo, as soon as the surgeon releases her. So, likely later next week.

The small dose of scary news is that we are starting to talk about using some radiation. Specifically, radiation of the area where the kidney was removed - to help ensure we get all of the tumor tissue in that area. Fortunately, no talk about radiation of the liver.

The liver lesions are also showing a big reduction in size. While I don't recall the exact dimensional sizes we discussed during the appointment, I would estimate that between the 2nd and 3rd CT scans we saw a 40% reduction in liver tumor size. This makes me very happy.

We also confirmed that her lungs are clear. Only 2 small spots were noted, and the radiologists think its probably scar tissue. We'll continue to watch them in future scans to see if they change at all.

All in all, things are looking very positive. We continue to read about others battling this and other cancers that are not seeing the success we are. We feel very lucky. While anything can still happen - right now things are going in the right direction.

Thank you to all who have supported us - financially, emotionally, and prayerfully. We're almost halfway through the treatment plan. Please keep it up and (hopefully) we'll be talking about clear scans in 18-20 weeks.

Not Yet

Today, in the midst of our healing marathon with Harper, I took time out to attend the funeral of my (step) grandfather.

Bill "Cap" Flick was truly one of the kindest men I ever had the occasion to meet. He married my grandmother 8 years ago, just months before Harper was born. They were the cutest couple, her in her 70s and him in his 80s, both widowers, and quite obviously in love.

He entered my life just as Harper did. And now, he has exited. He had a long full life, living just 1 day shy of his 92nd birthday. But, as is happening to more and more of us, as we live longer and longer lives, dementia/Alzheimer's claimed him.

A disease of unexplainable origin claimed Cap from us. And another threatens Harper.

I fought, today, to keep my emotions in check at the funeral service and burial. But as I drove back home, to Louisville, I couldn't keep the ideas of a funeral and Harper separated.

Cap was a kind man, who loved life, loved to laugh, and was beloved by so many. You could substitute Harper's name in that sentence and it would be no less true.

I know that I cannot change what will come to be in the coming months and years. God's Will will be done with Harper, and she is in his hands through this battle. But I can't help but raise a defiant voice, even if its just in my mind as I pray, to say "Not Yet."

It's not time yet. Harper has not had the opportunity to live a long, happy life; to love another as a companion and soul mate; to travel, or stay home (whichever she chooses); to find and develop her passion (be it horses (likely) or something else); to grow old.

Harper is doing so well with her treatment. She has shown incredible strength. The tumor pathology showed almost complete positive reaction to the chemo. Her amazingly quick surgical recovery has strengthened our hope for a complete victory.

But the nagging comparison between Cap and Harper remains in my mind, and pushes thoughts and visions of a funeral for Harper into my mind, against my will. I have to push them back out and say Not Yet.

We each will pass from this earth when it is our time; when God calls us home. We each will deal with the pain, many times over, of losing a close loved one. Some will be sooner than expected or wished. But for Harper, Not Yet.

There are times, when pity sneaks in, and I question my resolve, and my belief in certain recovery - more often then I care to admit. But deep down, past the fear, the doubt, the uncertainty, the worry and the pain, I hear clearly - Not Yet. And that statement drives me forward.

I truly believe it is not Harper's time. I believe God has more in store for this precious little girl.

There will be a day when Harper is laid to rest. There will be a time when loved ones will mourn in her passing, and celebrate her finished life. There will be a time when God calls her home, as he will with us all.

But Dear Lord, just Not Yet.

Phase 2

We're on Day 4 post surgery, and things are going well. Harper is getting up and walking around. They are slowly lowering her BP med dosage (having already reduced it to one med from two) and her pain meds are being lowered as well.

She has only had liquids to eat so far, but things are improving there too. The surgical team, when rounding this AM, indicated we could start her on soft foods. I'm thrilled, because even though she isn't begging for food yet, I don't want her albumin levels to get low like last time. Eating will help prevent that, I hope.

Once she's eating, and her GI tract starts to normalize, then I suspect we'll start talking about when we can go home. The surgeon said, before the surgery, she expected us to be here a week - and my guess is we'll be very close to that.

This surgery was HUGE on her road to beating the cancer. The kidney they removed was almost undoubtedly the "source" of the cancer, and was also the largest grouping of cancer cells in one place in her body. But we still have a long road of additional chemo ahead (lasting AT LEAST until Christmas). We're only halfway there (at best).

As we recover from the surgical procedure, we are thinking about what is next. We are focusing on planning for what happens after we get home. We are starting to think about phase 2.

To help offer some solace to her and to ourselves we've all along focused on the fact that you can easily survive and lead a very normal life with just 1 kidney. The surgeon, during our consult prior to surgery, said "For most things that are important, God gives you two." Harper quickly pointed out that he doesn't give you two hearts or two brains, which the surgeon conceded. That little girl is just too smart.

Then, after the surgery, we sat down with the nephrologist. We hadn't seen him since her last hospitalization, and he indicated that the hospital's medical records system was giving him trouble trying to pull up the detail from our previous hospitalization (thank you EPIC), so we had to refresh his memory. After that, he also reminded us that people live very normal lives with one kidney, and, in fact, that the remaining kidney will actually increase in size (very slowly) to help compensate and pick up the slack.

Then, he nicely told us the things to avoid... The things that posed a greater danger to her than to others. We started with drugs. Specifically, that there is one chemo drug we're using (cyclophosphamide) which is nephrotoxic. I don't think we'll stop using it (her current cocktail is showing good results) but we'll have to watch it much closer.

Then came "activities." Swimming is fine, but no diving. Soccer is okay, but no rugby. Running tack is ok, but no high hurdles. Riding a bike, with normal head protection, is ok - but no motocross - and no ATVs (handlebars are a big problem in accidents). Horseback riding is fine, but no jumping big obstacles. Basically, normal activities are fine - but things that have a higher risk of impact to her remaining kidney (which could leave her with NO kidneys) should be avoided.

Harper is like a cat with only 2 lives. And they just removed one of them. We have to be really careful to protect the remaining one. And that will mean saying no to some things that I'd much rather say yes to. Not today, of course, as we continue to help her back and forth to the bathroom. But there will be things that come that we will say yes to her sisters, and no to her. It's going to be hard.

When all of this has passed... When Harper is "cured", her hair is back, she's back in school, and life is back to "normal" (even a new normal) - there will forever be reminders of this experience. Long lasting impacts, some of which we can't even fathom yet. But I'm looking forward to getting there.

But for today, we focus on eating. Lets get some soft foods in her. Lets get that GI tract going. Lets get up and walk around. Let's get her home.

Let's stop sitting around (if we don't need to).

Let's get going on phase 2.

Sometimes You Just Need Your Mommy

The day finally arrived. The doctors finally agreed it was time. The scans showed improvement - chemo had done its (initial) job. Harper's lungs are almost cleared, her liver tumors improved (smaller) and her kidney tumor reduced. It was time to take the kidney.

We had been waiting for that news for months. Originally, we thought we might be able to get the kidney removed after 2 rounds of chemo - 6 weeks in. Scans at that point showed improvement in the lungs and kidney, but no definitive improvement in the liver - and the liver was in the way.

To get at the affected kidney, they have to move the intestines and liver to the side. That's not easy to do when the liver is swollen with tumors. A complication. And with the tumors showing a positive reaction to the chemo, not a complicating risk the surgeons were willing to take just yet.

So, we did another 2 rounds (6 weeks) of chemo, and scanned again. This time - we were a go.

Now, we were excited, as we'd been hoping for the surgery. We'd been waiting to take out the "source" of the cancer. But, now we had major surgery staring us in the face. We asked for it - now we got it.

The morning came. We were walking calmly out the door at just after 7 when the hospital called wondering where we were. Our arrival time is at 8, right? Nope. Turns out they changed it to 7 - didn't tell us.

So, a normal drive in turned into an 85 mph adventure that my mother-in-law would probably like to forget. (Sorry about that!)

We arrived. We checked in. We went up to the surgical floor. Harper changed into her robe. They pumped her full of meds. She fell quickly to sleep. We did not. They wheeled her out of our view. We were no longer in control.

We waited. The OR actually called my cell every hour during the surgery. Small comfort, as they really didn't tell us much, but a nice gesture all the same.

Finally, she was done. It went well. They took the kidney (as planned). They left the adrenal gland (a plus). No unexpected complications. She didn't need blood. All good news.

Then to ICU. Harper's not a quick wake-er-up-er (no one in the family is) so it took longer than they expected for her to come out of the anesthesia. But, she finally did - and she was in pain.

Hours passed of attempting to manage the pain. All the while, her blood pressure was up. The last time we were in the ICU, it was because her blood pressure was WAY up. Not as bad this time, but still worrisome considering her new wounds.

Was it pain? Anxiety? Body reacting to all the stimulus and the lack of a major organ that helps regulate blood pressure? Who knows?

They monkeyed with her pain meds. They increased her Dilaudid dosage twice - which is in her PCA pump (patient-controlled-analgesia - the magic button). They've added fentanyl and Ativan as well, attempting to keep her calm and further control her pain.

After being in the ICU for more than 5 hours, I believe we've finally gotten the pain monster under control. She is resting relatively comfortably, with Melissa holding her hand.

Melissa has not been allowed to leave her side. Melissa is not allowed to let go of her hand. As soon as they wheeled her into her ICU room, she was asking for Mommy. I was rebuffed multiple times, until Mommy was at her side, and then I was allowed only as an addition, not ever as a replacement.

I was allowed (by Harper) to leave and go home and check on her sisters. Mommy was barely allowed to go use the restroom. I'm currently sitting in a chair, reclining, typing and watching the monitor that shows her vitals. Melissa is uncomfortably sitting in a chair next to her bed, holding her hand and attempting to lay her head on the bed to get a little rest.

It's ok, though. This little girl has been through a lot. Today she allowed a bunch of people she doesn't know to cut a hole in her from her sternum to her pelvis, root around in her insides and take a major organ out of her. She's due to spill some tears. She deserves to be a little cranky. And it's understandable she wants her Mommy.

Sometimes you need pain meds. Sometimes you need anxiety meds. Sometimes you need blood pressure meds.

And sometimes, you just need your Mommy.

We Are Not Special

The past 2 months have been a roller coaster ride. Ups, down, sideways, and never in the direction we expect. But one thing has emerged as a common theme, and it's not on the surface. We are not special in our fight against cancer.

Sure, my daughter has cancer. Yes, her prognosis is not assured to be positive. So, perhaps I have a right to be a little pitiful. Maybe it's my place to take some sympathy. Maybe...

But our situation is not unique. We are not the only family to be faced with a terrible diagnosis. We are not alone in our challenge of a dear loved member of our family being attacked by a disease we did not invite, infected for a reason we don't understand, with a future that is unsure. We are not special.

What's interesting to me is that countless times since this journey began I've been approached by people who, sometimes directly, sometimes with trepidation, share their personal story on cancer. Their mother had breast cancer and is a survivor. Their father was a relapse Hodgkin's lymphoma patient who lost their battle. Brothers, sisters, children. It goes on and on.

Yes, my child has cancer. No, her prognosis is not bright. And yes, I regret every statement I've made jokingly about having 3 kids so we have a spare. But we are not alone.

We have all, in some way, whether it appears large or small, whether it feels large or small, been affected by cancer in some way. Someone you know has had cancer. Maybe they beat it. Maybe they didn't. Either way, your life has been changed, altered, affected by cells that just don't know to stop.

I don't know why God allows cancer to be in our presence. I don't know why cancer is allowed to challenge the happiness of our lives. But I know that it is all too common. I know that it is all too painful. And I know, that we are not special.

And, truthfully, I wish we were.

Almost

This morning Harper and I went to run a few errands.  All I had to say to her was that I wanted her to go to the store with me.  She didn't complain or gripe - it was like she wanted to go.  It was almost like she was just a normal kid, and was open to anything.

First stop was Office Depot. We had a minor emergency at one point, as she was in the ladies restroom, and the toilet paper holder fell off the wall.  She cried out for me. Fortunately, the store was pretty empty and it's a "1-holer" (and she hadn't locked the door!) - I ran in, fixed the toilet paper holder, and darted back out.  It was a minor miracle it was that easy, and she recovered almost as if nothing had happened.

Our intent of visiting Office Depot was to get a cheap USB keyboard and mouse, so that I could hook up the old laptop (with a busted screen) so that the girls can use it for games and homework.  We have a small flat-screen monitor, so we just needed a keyboard and mouse so we can leave the laptop lid closed and use it like we would a desktop.  Scored a wireless keyboard and mouse set for $20. 

Then we went to Target to look at a few things.  We checked out the carpet cleaners (ours is falling apart) and small desks (so they can put the new laptop setup on it) to no avail.  But, on our way out of the store, we ran into Holly, Harper's Girl Scout troop leader.  She hugged Holly and Zoe (Holly's daughter and Harper's friend) and we chatted for a little while.  Harper still showed some shyness, but she talked a little, and stood there patiently, smiling a bit, but still staring at the ground.  I could almost imagine Harper running off for a moment with her friend to play.

We then ran quickly over to Home Depot to check out their carpet shampooers.  We happened upon the kids activity, and then spent about 30 minutes building and painting a wooden truck.  The lady running the sign-in desk asked Harper if she went to Camp Quality this summer.  I was surprised at first, but then she explained that she volunteers at Camp Quality every summer.  I explained that Harper was "too early" in her diagnosis this summer to go, though really I think the registration had ended by the time Harper was even diagnosed.  She was very nice, hooked us up with a kit, and talked to us several times as we built it.  We ran into Cadence's best friend, Jasmine, and her dad there too. 

After leaving Home Depot, we then called home, and Melissa suggested we meet for lunch at Chick-fil-A.  Harper and I killed time in the pet store next door, looking at fish, hamsters, mice and birds.  She was in love with the little family of mice, which it looked like the babies had been born within the last few days.  She observed as people bought fish.  We also visited the cat rescue cage a couple times before wandering to Radio Shack next door, where we just perused the aisles and looked at the science kits they have.  She almost asked for one, but then decided not to.  I probably would have bought one if she'd asked.

Once Melissa arrived, Harper decided she didn't want Chick-fil-A, so she and I ate at Five Guys, while Melissa, Cadence and Finley ate at Chick-fil-A.  Harper ordered a cheese dog, but after eating the melted cheese off of it, decided it wasn't as good as she'd remembered and said she wished we had gone to Chick-fil-A.  While we were there, most people didn't stare, but one interesting gentleman walked up to us and asked "What happened to her hair." to which I responded "It fell out."  He continued to follow us around the place for a few minutes, talking about how he has friends in the shriners, and how he lost a lung to cancer (pack of Camels conspicuously in his shirt pocket, by the way).  After a couple of comments about getting a new government, he got his food, and departed.  Harper really didn't respond to him the whole time, almost like he wasn't there.

We're home again now, and the three girls have been, a little noisily, playing Minecraft together in their room.  They just went downstairs, and I hear the ice-shaver running.  They must be making snow cones.  It's almost like we're back to normal. 

Almost.

Graduation

Well, July is coming to a close, and our journey continues into August. School will start tomorrow. For Finley and Cadence, it will be back to life as usual (or as usual as it can be) and Harper will be learning all about home-bound school.

Its been 2 & 1/2 months since the diagnosis. It is absolutely amazing to me that that much time has gone by. I'm not sure we're having fun, but it's flying. The school year was just winding down when she first went into the hospital.

Harper continues her chemo. This round (and the next) are weekly treatments. Fortunately, the first week is the only inpatient stay, with week 2 & 3 (of a 3-week round) just an outpatient visit to the clinic, where they push in the vincristine (which is pretty much like her daily flushes). We'll be back inpatient the week after next.

It's a little tough knowing Harper will basically start falling behind tomorrow. She won't be getting the same instruction as all her classmates. I mean, I'm sure she'll be able to catch up later, but she's never shown as much enthusiasm for learning and school as Cadence, and I worry for her. I worry that staying home she won't learn as quickly.

I'm afraid there'll be too many distractions. I'm afraid it will be too easy for her to put off her work, or find something else to do. I know Melissa will be on her - with the TV and Harper's iPad off limits until she does her school work, but there will be bad days. There will be days, probably following chemo, or for a pretty long stretch after surgery, where we'll lay off her, and she'll slip farther and farther behind.

But then I think about what she is learning. I think about the skills, strengths and attitude that her other classmates aren't learning. I don't wish those lessons on them - but I can't help but ponder the advantages that she may have because of her experience.

She knows what it is to fear for her life, and rise above it, learning to enjoy it, despite the fear. She knows what it's like to submit to something that she knows will be unpleasant - that will hurt, and still do it willingly, because the benefit outweighs the pain. She knows that there are some things that, while we hate them, are worth doing because of the greater end goal - even if that end goal is not certain.

She knows things now that any parent would wish to prevent their child from ever knowing, and yet... And yet she is stronger for it. I've seen in her the growth of emotional strength beyond that which many adults could muster. Not constant, mind you, but there, and growing.

I've seen determination, and even confidence when faced with standing out in a crowd, because of her bald head - and yet she knows she is pretty - on the outside and especially on the inside. And she knows it not because we told her. She knows it because she told herself. I see it.

When this is over, and if she wins... No. No, I keep saying that wrong. I keep showing a weakness she herself doesn't show.

When this is over, and she wins - when she beats this terrible disease - when she beats the odds, she will go on in life a wiser, stronger, more intelligent and cunning young lady than any of her peers. Her prospects will be better than any of her friends, because she will have the skills, strengths, and learned lessons few others will be able to boast - and they will help her on her journey to something great.

I don't know what that great something will be. But I know she will be it. I know she will.

And a few days of 3rd grade missed will be nothing.

Back to school for most - but for Harper, she never really left it - she just moved up to an advanced class on life. And I see an amazing graduation in her future.

On The Outside

From the outside, Harper looks so different. Not just from before all this started - but even since we left the hospital. Her hair is gone now (obviously), but her face has lost its grimace - and its been replaced by an almost constant smile. It's like someone just turned the world upside down from just a few weeks ago. Another round of chemo is underway. Essentially, the part we think of as chemo (IV drips, monitoring, at the hospital or in the clinic) is really already done. Harper spent most of the last 2 days in the hospital, getting prepped for chemo, receiving chemo, and then getting fluids after. She only had to spend 1 night in the hospital, which we were prepared for 2. Bonus! Next week, on Thursday, she'll get another dose of vincristine - just a simple "push" which is then just flushed after with saline. No fluids. No time in the clinic or the hospital, other than the actual pushing of the plunger on the syringe. This "round" of chemo is much easier on Harper than the previous few. The last few have been 6 hours of infused fluids and chemo drugs each day for 4 days in a row. This is 1 big day, followed by 2 other tiny days, a week apart. Honestly, much preferred. Now, we wait. We wait for the next round of CT scans. They'll probably be the week after next. Then the "tumor board" will review her case again - and we'll get more insight. We'll find out if her tumors are continuing to shrink. We'll get the low down on the tumors in her liver, which were not shrinking before. We'll get a better idea on surgery to remove the kidney. I'm worried on the tumors continuing to improve. Based upon Harper's demeanor, and how far her mood has come, we hope that the overall condition is continuing to improve as well - but we don't know. She's been eating like a hungry, hungry hippo - but is that reason her abdomen looks bigger? Is she getting a little belly on her from extra calories? Or is it something else. Time will tell. We went for a walk around the neighborhood tonight. She made it all the way around. She then stayed outside with us, as we pulled crabgrass out of the yard. She whined at the end, but only because she wanted to go inside and take bath. Just days ago, she fought us on the idea of a bath - now she's asking for one. The turnaround continues - and we hope it is not just happening on the outside.

Take The Next Hill

The war grinds on. We fight each battle for another small patch of land. The engagements can be brutal, but our objective remains clear - Complete Victory.

Next week is another big week. It seems they're all big weeks these days. In fact, each day is a big day. Each hill is steep. Considering where we've been, and the deep darkness we've come from, each day of sunshine feels brighter. The summer heat is warmer. The grass greener.

Next week will be round 4 of chemo. We'll be going back to the drug mix we started with in round 1, which requires a long infusion of a bladder protectant medication before, during and after the chemo. So, likely we'll be admitted. Maybe for just a day. Maybe longer. It's an adventure, right?

Harper says she doesn't really remember much from the 13 day hospitalization that started it all. Not a shocker, really, since her coping mechanism was to shut down emotionally. She slept. She kept her eyes closed. She laid in bed, losing her strength, not eating. She ignored the sounds of mortars falling toward her, desperate to be anywhere else - even if that meant being nowhere.

Today is so very different from then. Today she's active. Not the kid she was before, but she moves. She eats almost constantly (thank you Megace). She smiles, laughs, listens, holds conversations. She'll even talk about the cancer, and the surgery coming up to remove her kidney. Oh, how far we've come. Oh, how many hills we've taken. After initially giving so much to the enemy, we've slogged back, claiming land that is rightfully ours.

After this next chemo round, we'll be scheduling another CT scan to ascertain the status of her tumors. A reconnaissance flight, to spy on the enemy. If they have shrunk, then we'll be moving towards surgery. If they haven't, then we'll be considering options. I have no idea what those are, and I hope we don't have to consider them. I'm hoping we'll see the enemy's supply lines drying up, their resources dwindling - starving, dying off, running low on ammunition.

My big concern is the tumors in the liver. Last scan they hadn't shrunk like the tumor on her kidney or in the lungs. But they had "liquified" in their centers - hopefully a sign of tumor death. If so, hopefully we'll see improvement this time. Hopefully we'll see them retreating.

Her blood counts are good going into next week. Reds, whites and platelets. Her tanks are full. Her arsenal stocked.

So as the sun sets, and the warmer summer heat subsides outside tonight, we plan a relaxing, enjoyable weekend, before we're back to the battle again next week. A bit of leave, so to speak. A 3-day pass as it were. We're tiring a bit, but we know the war is far from over.

Next week, we'll be back on the line, fixed bayonets, taking the next hill.

Little Things

Things happen. Life happens. Cancer happens. It sucks, I don't understand why it happens, but it does.

God won't give you anything you can't handle - or so some saying goes - or something similar. What do people know? We're just mortal, imperfect, often incorrect beings. How can we say for sure?

Big things happen. Diagnosis. Surgery. Chemo. Blood transfusions. CT scans that put us on pins and needles waiting to hear the results. Lots of big things. More big things than should be shoved into a single, short period of time.

But little things happen. A plate or bowl - emptied. A joke - laughed at. A smile - hidden, but there. An outlook - slowly brightening. A tooth - loose and then out. Anticipation of visitation from a fairy.

And then things happen close to home. A neighbor is in a horrible accident. His legs and feet crushed. His life and limbs spared miraculously, but pain ahead in recovery.

And things happen far away - to people you don't know. A little girl, who battled cancer for 6 years, touching millions with her makeup artistry and awareness spread through a celebrity - taken. A girl who would have been Harper's age when she was diagnosed. A girl who had a cancer of the adrenal glands - located eerily close to the kidney - where Harper's comes from. A girl who fought with an incredible optimism - that was unfortunately for naught except for her legacy of hope that remains.

And what can we do? Nothing. Despite any desire to hide, steal away, cover up and refuse to acknowledge - things happen. And they keep happening. Good. Bad. Things do not stop. They do not slow. Only with ever increasing speed do they seem to occur.

But - when we can, we stop. We stop and enjoy. Enjoy the steady breathing of a child asleep next to you. Enjoy the smile quickly smirked and then gone. Enjoy the weight on the scale - higher than last time. Enjoy the comment that, you know what, I don't feel like I'm going to die anymore. Enjoy the tooth hidden happily under a pillow.

Maybe we can or can't handle the Big things. We won't really know until they're over. Until then, I'm going to try my damnedest to keep reminding myself to try to enjoy the little things. Because sometimes the little things are all you've got.

The Picture In My Head

A couple of years ago, my company switched from Lotus Notes to Microsoft Outlook. One of the things that came along with that was the availability if little "pictures" of people that come up when you're looking at an email or message from them.

Some people love it, and adopted it early. They put their pictures out there for all the world to see. Some people put out their pics, but used ones from so far away that you can't really tell what they look like. Others use logos of their favorite sports teams, or families, or pets. Still others are still fighting the trend, and refusing to put a picture of themselves out there.

It is helpful to me to see people's faces. We work so much more virtually now, it really is nice to put a face with a name.

What I've realized is that the Outlook pictures are really just an extension of something that (I think) is normal that we humans do all the time. We have a little picture of people we deal with, are related to, or think about filed away in our brains. When topics or thoughts turn to involve certain people, a little picture pops up in your mind. Maybe a fun time you had with them before - maybe a not fun time when you've argued or something tragic happened. But a picture. Probably you don't even realize its happening - it's just how your mind works.

I realized today that these pictures in your mental filing cabinet get updated. Kids grow up. Your parents age. No one stays the same - nor do relationship statuses, which also impact these pictures. I don't know how or why they get updated, but I now know they do.

I've realized all this because it hit me that the mental picture I have for Harper has changed. Not sure when it changed.

When I think about Harper now, I see a mostly bald little quiet girl. Shes sitting on the couch, picking at her fingers. I think the previous picture was of a slightly crazy-haired little girl who was verging on ADD, bouncing around, or losing it (it happens) when something didn't go right. NOT the child we have today.

Now that I type it out, it doesn't seem so dramatic, but it hit me hard that my little girl has changed, and so has my perception of her. I'm fearful of this. It makes me uncomfortable. Am I simply recognizing the change in reality? Or am I in some way "giving up" on her ever returning to the child she once was? Am I, in some small way, giving the cancer some ground, letting it into my mind in this way? What if she doesn't beat it? Will this be the picture I remember?

Or is it just part of is crazy journey we're on? Harper is growing and maturing every day - partly from normal "growing up" and partly this life-detour. Regardless of what I want, Harper will never been the same child - she will be changed forever.

If we have our way, we'll get off this detour and back on the main road. She will beat this, and be back to a "normal" little girl - as normal as she ever was. But I know, for sure, that she will not emerge unscathed. She will be forever changed by this experience. She will never be able to go back - only forward, carrying this life experience. Hopefully, carrying the strength gained through this trauma.

And when she is done with chemo, and her hair is growing back out, and she goes back to school, and this all becomes a memory - I look forward to updating the picture in my head.

Fireworks

Last night we didn't stay up late. Despite the holiday today, we were due in the Outpatient Medical Observation Unit (OMO) at 8:30am for chemo. Today is day 4 of 4 of round 3 of chemo for Harper's Wilm's tumors.

Harper doesn't sleep alone anymore. She has shared a room with her sisters for years, but now she shares a bed, usually with me, occasionally Melissa and once in a while Grandma. She doesn't want to be alone - be it in a room watching TV or in a bed sleeping.

Harper was out, and the neighbors started setting off some small fireworks. Fortunately, Harper didn't wake up. While her anxiety has improved dramatically from when we started this journey (she hasn't needed a dose of Ativan for quite awhile) she still doesn't like scary shows or loud sounds. Fireworks qualify.

The fireworks didn't last long, and I thought to myself that it was very unlikely we'll get to enjoy any fireworks this 4th of July holiday - not with Harper the way she is right now. Maybe next year...

The Holiday morning dawned, and it has been raining on and off all day. With some luck, I thought, the local (neighborhood) displays will be smaller or delayed. Especially with the holiday on a Thursday, I'm guessing folks would wait if its raining and go for the weekend.

We made it to the OMO and settled in for a 6 hour day.

I've continually worried about Harper, and her lack of happiness as this experience has unfolded. She went from a very happy, loving, and relatively carefree child to a somber, quiet, grimacing one. It was a radical change, and one we've had a tough time adjusting to. I've wondered what is going on in her mind, and tried to formulate ideas of things to push her towards joy - things she might enjoy, or used to make her happy. Little has broken through dramatically. Even getting a horse, while making her happy, didn't drag her out of her funk. Nothing seemed to light her up - spark her fuse.

I don't know what about THIS visit to the OMO was different. We've been here what feels like countless times. We've gotten chemo, blood transfusions and stem cell apheresis here, and always somber. Always quiet. Usually sleep.

Today, after things were hooked up and flowing, Harper got out her iPad. She started drawing on it, with a Kaleidoscope app. She suddenly transformed. She smiled. She drew. She giggled. She even laughed. She showed us her drawings - grinning and describing what she saw in the pictures. She oohed, and aaahed as the colors changed, flowers emerged. It was incredible.

The nurses looked in. They'd seen her a lot, but never happy. Never joyful. Never laughing. They were shocked. They were elated.

Me? I saw fireworks. The prettiest, biggest, loudest fireworks I could imagine. In my mind, even for just awhile, a show was going on. Crashes of elation, booms of cheer and crackles of good spirits. I was in awe, my mouth hanging open. We laughed with her, soaking up the experience.

She's napping now, worn out by the excitement. Tired from the fun. She may not wake up and repeat it for awhile. Who knows? We may go back to searching for a spark again - I hope not. I hope it's a turning point.

On this 4th of July, we may not wonder at the site of exploding fireworks in the sky - but we've already wondered, and been renewed and refreshed by fireworks in her eyes.

Some Progress

This morning we came into the OMO to have Harper's temporary pheresis catheter taken out of her neck. Turns out the harvest yesterday got 20 times what we needed. Yep - she's a literal stem cell factory!

While waiting for someone from pediatric surgery to become available to do the line removal, Dr Cheerva (our oncologist) came in to talk to us.

The oncology group has a "tumor board" which meets regularly and uses a group discussion format to discuss the status and best care approach for solid tumor patients. They spent a significant amount of time discussing Harper yesterday.

The readout from her most recent scan is that her pulmonary lesions (lungs) have shrunken dramatically. Before they were apparently so diffuse they were hard to count. Now they can be counted (though she didn't tell us the count) and they appear to be going away. Her main tumor on her kidney is also shrinking. They can apparently see a more "normal" kidney shape now.

The one thing that struck me, though, is that her liver tumors have actually gotten bigger. On the surface - That's scary, as it could mean the chemo has NOT been working there. But, she indicated that the tumors are less heterogenous - meaning that they don't look the same all the way through. They actually look more like cysts now, with fluid in the middle. The thought (that we're going with) is that the tutors are actually dying, and that the fluid in the middle is a sign of necrosis. So, they are not shrinking in sequence with the others, but they were bigger, and this could be normal tumor death.

So, with the liver tumors not shrunken, the surgeons think the surgery to remove her kidney could be difficult, and they want to wait. So, we're going to do 2 more rounds of chemo and then re-assess before we do the surgery.

So, some good news (the chemo is definitely working on the lung and kidneys) and some mixed news (the chemo is probably working on the liver).

Next week we'll be back in for another round of chemo. Then, the subsequent drop in counts, Neupogen shots and blood. But, looks like we won't have an inpatient stay for a month and a half (if we can continue to stave off any infection).

We're making some progress. Praying for more.

Thank You, Pat Metheny

The stem cell harvest we hope is never needed is underway. Harper is resting relatively comfortably, considering she has a stiff straw sticking out of her neck, listening to music on Melissa's phone.

The machine is whirring in the corner. We explained it like a big paint shaker (it has a centrifuge inside it) and she was okay with it. There are lines of blood and fluid everywhere. It looks pretty medieval if you think about it.





We're about 2 hours in. She can stay on the machine no longer than 6 hours at a time. So, whatever they can harvest in 6 hours is all we can get today.

After the harvest is done, she'll get platelets. Her platelets, even after getting some yesterday prior to the insertion surgery, are still low. Plus, the platelets and stem cells are about the same density, so they sit within the same "layer" in the centrifuge. Ends up they get pulled off with the stem cells. So, part way through the harvest they will start platelets to replace them.

The nurse we have today is one of only a few that can do the harvest, and she's been doing harvests for more than 20 years. She's very capable, and has a nursing student observing with her today. Only downside is she's pretty comfortable talking about all the kids that have died (and the fact that when she started 30 years ago in pediatric oncology - they all died). A little unsettling for us, of course, but we know the odds.

She can't get up and do anything while on the machine - she has to lay pretty still. She can't even get up to go to the bathroom. So far she hasn't needed to - hoping she can hold it until we're done, to avoid a bedpan.

If all goes well, and we get the "results" of the collection in time, and they have enough today, we'll stay to have the catheter removed. The way it's been described, they'll un-suture it (its sutured into her skin in several places) and they'll pull it right out at the bedside here in the OMO. The surgeon talked about someone needing to hold pressure on the site for 15 minutes after, to help ensure the vein clots. He said he's never had to go in and suture the vein. That statement was partly comforting, and party concerning - because it means it does happen... And her platelets are so low (even after getting some) I worry. But we'll see.

We're preparing too to go home with the catheter and come back tomorrow. It's possible they won't get enough, and we'll have to do another round. Or, we might not get the count back in time, and even if they have enough, might need to come back to get the catheter out.

If we have enough, we can stop the Nuepogen shots for now. I not, then likely she'll need another shot at home.

But, for now, she just sits and lets the machine suck blood out and then put it back. All the while, listening to Pat Metheny. How many kids her age listen to Pat Metheny? Probably not as many as should.

Here's To A Harvest We Hope Goes To Waste

Much of the past week has been dedicated to prep for an event we hope is all for naught. A stem cell harvest.

Most people are at least familiar with the idea of a bone marrow transplant. Well, a stem cell transplant is something similar, and is a follow-up to the decimation of the blood cell producing bone marrow after high and extended doses of chemo therapeutics.

The actual "harvest" is done through a pheresis procedure, where blood is removed from the body, put through a centrifuge, the stem cells removed and the remaining blood reintroduced into the body. We've not been through this yet (obviously) but it sounds a lot like dialysis to me.

Once harvested, the stem cells are frozen and stored, for future use.

In order to get enough stem cells to do a transplant, we have to artificially increase the body's production of these cells through the use of a stimulating growth product called Neupogen. Neupogen is given as a subcutaneous injection and is basically the absolute worst part (in Harper's opinion) of the entire therapy.

We've given her a dose of 5mg/kg for the past 5 days and will give her another dose tonight. With so much stimulation, the excess stem cells basically overflow into the bloodstream, where they will be picked up by the harvest.

Another fun part of this little exercise is the insertion of the additional large catheter through which the blood will flow for this harvest. Her broviac central line is apparently not big enough, so today, under general anesthesia at Kosair, they inserted a temporary catheter in her neck. Not a pretty sight.





This catheter will stay in until the harvest is complete. Fortunately, the catheter can be removed at "bedside" which means no surgery to remove. Unfortunately that means she will be awake. Not really looking forward to that...

She was a real trooper, though, for the insertion. So, perhaps we'll be surprised. At least now she seems a little more used to the sight of blood than she was when we started, but I'm guessing the idea of them working on her NECK while awake, and the fear of associated pain, will make for an interesting removal.

All of this for something we HOPE we don't need. See, the stem cell transplant is not in her current treatment plan. But, if she doesn't respond to the standard chemo (all signs so far are that she is) or she has a relapse (after treatment is complete and she's listed as No Evidence of Disease (NED - which will be a VERY good day, indeed)) then they can escalate the treatment to the high dose chemo with stem cell rescue.

And we hope we never get there. We hope the current chemo, with surgical removal of her kidney, and potentially some radiation, will do it, and she'll be clear. We hope the stem cells sit in the Kosair freezer and are someday discarded.

We're going to bring in the crops tomorrow, but we hope this harvest goes completely to waste.

It's hard

I haven't posted in some time. Partly because its been busier since we've been home, going back and forth. But, mostly because I've been tired, and finding it harder to put the words down. In any event, I suppose I should bring you up to speed.

Last time I posted, we were in the middle of chemo round 2. That chemo round is finished, with few to any real side effects. Amazingly, she seems symptomatically unphased by the chemo, excepting for her fatigue. I find it incredible that she's able to handle them pumping her full of what amounts to medicinal poison.

Since then she's been outwardly on a very slow upswing. Oh sure, there are up days and down days, but overall, she's been doing a little better. After recovering from the chemo, her energy has improved.

Tuesday she went out to the barn with her sisters. Don't tell the doctors, but she did get on a pony and was led around. She's still not really strong enough (we think) for her to control it on her own, but she was able to do something that she thought she couldn't. Wed afternoon, after putting her central line under an aqua guard and wrapping her in kitchen plastic wrap, she even waded in a neighbor's pool for a few minutes. We called it swimming.

Wednesday wmorning e were back to hospital, for a CT scan. We also found out her neutrophil count was zero and she needed blood. So. After spending all day at the hospital and clinic for blood and a CT scan, we had to go home and spend a few hours convincing Harper to let us give her a dose of Neupogen.

Monday we're planning to start her Stem Cell Harvest, so we actually are giving her a Neupogen shot each day. It's joyous (said in a sarcastic tone). On top of that, she will go in for surgery Monday AM to insert an additional large IV catheter for the harvest. They will use it and her central line to take blood out, filter out and collect the stem cells, and then put the blood back. We'll do that daily until they get enough to freeze. In the end, they want at least enought to do 3 transplants. We're hoping they get it all on Monday, but we're not holding our breath.

As before, she really doesn't like the shots. They scare her, and I know they hurt. I completely understand why she fights us. But she also knows why we're doing it. If only that made it easier.

So, we'll continue. Tomorrow she'll get a breathing treatment as a preventative measure against pneumonia. Sunday a nurse will come out to check her levels. Monday we'll start the harvest. Thursday we'll talk with the doctors about the results of the scan.

Another round of chemo and surgery are somewhere in the immediate future too.

Day by day we're getting there. Day by day, she is fighting.

It's hard.

Priorities

We have spent a lot of the last week in and out of 2 places. Kosair and the riding barn.

Last Thursday, we had anticipated outpatient chemo to begin. What happened instead was a "23-hour" admit for an unexpected rash and a nasty case of thrush. Thankfully, the rash is all but healed (and her file now reflects a sulfa allergy) and the thrush is gone. Good thing too - I can really only imagine how nasty that made her mouth feel...

We could have gone ahead with the chemo over the weekend, but considering Friday was her 8th birthday (and the pony surprise in store) we opted for a "hospital-free" weekend and chemo starting the following Monday.

While delaying chemo may sound bad at first blush, allowing her system to heal from the thrush infection and systemic reaction to the sulfa before hitting her with major chemo drugs makes some sense. On top of that, we started Megace (aka - Wonderdrug).

Megace is magic. We've gone from zero appetite to a reasonable appetite since we started it last Thursday. She was literally fighting us to take 3 bites an hour before - now she's asking for food and snacks. She gained 0.3 kg between Thursday and Monday. That might not seem like a ton, but considering she last 3 kg (at least) after leaving the hospital the first time, the weight GAIN is a miracle. We're hoping it continues.

The second place we've been a lot since late last week has been the riding barn. Thursday night was, of course, the big introduction of Harper (and her sisters) to the pony. At first she was named Hope. Then Princess Hope. And now (and I think this one will stick) Daisy. Regardless of her name, this little pony has really grabbed us (including me).

We've been out daily (except Monday) since she arrived. I've made 2 trips to Tractor Supply and 1 to Rural King, And each time I come home with some sort of treat for her.

We had 2 groups of family come down over the weekend, and both groups made the trek out to meet Daisy.

Our desire, of course, is that Harper see Daisy as a motivator - an inspiration to get better and stronger. Its been slow, and at times a struggle, but I think we're getting there.

Her big issue, I think, is she's convinced herself she's not strong enough to do anything with Daisy. To a certain extent, she IS frail and weak, and so, there ARE limited things she can do with Daisy. She focuses instead on what she can't do, then gets upset and wants to go home.

But, she's getting there. Today, at her chemo session, she asked us if we think she's strong enough to ride. Had to answer "no" of course, but we tried to tell her she would be strong enough soon, if she keeps eating. Despite having to give her a no to riding, it shows us where her head is - what she's thinking about, and that's riding - a good thing.

I've also attempted, this week, to both be there for her at her chemo AND get into the office. Its worked relatively badly, and I've felt like I'm doing both poorly.

I struggle, because I have a team at work who need me, and honestly, I need them. To a certain extent, work is a necessary distraction from the reality of home - and I need that at some points. But Harper, Melissa, Cadence and Finley need me too. And while I'm the "bread winner" and you have to work to eat (unless you're independently wealthy), I have realized that trying to do BOTH, especially while we're getting the chemo on a daily basis, just isn't working.

So, I'm going to forgo work for a few days, and focus on getting Harper (and the rest of the family) through chemo this week. Next week will bring another set of challenges, I'm sure, but this week I'm focusing on this week.

In the end, lots,of things, personal, work, family, etc - all vie for your attention. The challenge is determining your priorities. I've been reminded of mine.

Give Us Hope

Getting admitted instead of receiving outpatient chemo as planned was a pretty big let-down yesterday. Then there was the GFR "discussion." Today HAD to be better, right?

Fortunately, it was. A long day, but turned out to be a good one. I'm hoping one that starts a string of better and better days. Sure, there will be down days, but we could use some upward momentum.

Today is Harper's birthday. This special little girls has been with us for 8 years as of today. It has gone by SO FAST.

We'd been asking Harper for days what she wanted for her birthday. She's received so may gifts since her diagnosis, honestly there was little left to get her. She kept shrugging her shoulders. She didn't have any idea.

The morning started, and we asked her again. More shrugs. But we had something up our sleeves. Her trainer had called the day before, and something had come up that would turn out to make for one hell of a birthday for Harper.

Now, we didn't really know, when the day began, when/if we would get to go home. Her rash was improving. Her thrush was clearing. But, it was hard to say what the doctors would want to do.

Early on, we let them know it was her birthday. I think, in the end, that helped them make their decision. They contemplated just starting us on the second round of chemo (4 days long) inpatient and keeping us over the weekend. But when the doctor came in to see us around 9:30, he suggested we go home, enjoy her birthday, and then come back and start the chemo outpatient at the clinic on Monday. We agreed, and we began to plan to head home.

Before we could go, the majority of the staff that has cared for Harper at Kosairs showed up in the room. They had the music therapist there with his guitar, some gifts and a cake. They sang Happy Birthday to Harper, watched her open her gifts, and enjoyed some of the few precious smiles Harper has blessed us with in the past month. They were so sweet.

We made it home, and Harper was suddenly upset. We had to dig, but she finally let it out that she had expected a surprise birthday party when she arrived home... Ugh. I hadn't even thought about it. We didn't know when we would be home - hadn't even really tried to do anything like that. Whoops.

We promised, her, though, that there would be something better.

As the afternoon progressed, we got word that our "surprise" was shaping up nicely. We needed to be there about 8.

I made an errand run, to pick up a few last minute ancillary items, and after dinner, we packed everyone in the car for a ride.

Now, if we'd taken the normal route, we would have given away the surprise. Or, at least they would have figured out where we were going, if not the surprise itself.

So, we took an alternate route. Took longer, but the girls didn't realize we were going to their riding lesson barn until the last minute.

We walked in. The girls were forced to turn around, and then, at the right moment, given permission to look.

This is what they saw:





Everyone, please meet Princess Hope. She is a 1 year old pony, and she now belongs to Harper.

Harper started to cry once she saw Hope, but quickly got that under control and wanted to love on her.





Princess Hope did excellently, and makes me think she's going to be an awesome pony. She is so young, but she was still and calm, even with 3 excited little girls walking around her, touching her and even (Finley) walking under her.





They had at first just called her "Hope" but told Harper she could call her anything she wanted. She wanted to make it Princess Hope. So, Princess Hope it is.





All 3 girls were so excited. Unfortunately, it will be a little while before they can ride her. She's so young, and she hasn't been trained. But, Carly will be working on that, and I have feeling it won't be too long.

They fed her some treats (one of the things I picked up on my errand), brushed her, and changed out her lead rope to a pink one (another item from my errand).





Then Harper got tired, and headed for the car.

A BIG thank you to Carly and Sandy Dolan for making this happen. They found the person who literally gave us the pony, and will be keeping, caring for and training the pony while Harper builds her strength to get back riding.

As I've said multiple times, our biggest concern has really been Harper's own drive and fight. She's feisty, and always has been, but she's lost some of her spunk as this journey has started.

We're praying THIS will spark a flame and ignite her fire. Horses are her love. They are her passion. Now she has her very own.

(Princess) Give Us Hope.

Refusing Care

There was a time where I thought people who refused medical care were crazy. Well, maybe not completely crazy, but I thought it was rare. But, the more I am exposed to hospital care on the patient side, the more I understand...

I just basically told a nurse I am refusing a test for Harper. I've threatened to refuse treatment before, when the nursing staff was waking Harper up at all hours of the night, but what they were doing, though timed poorly and without regard to the patient experience, was at least explainable.

This time, the nurse stopped me as I walked to the nutrition room to tell me the nurse practitioner ordered a GFR test, and they were going to do it tomorrow morning. At first it didn't strike me, but as I thought about it, it didn't make sense.

Earlier in the day, before the rash, they were perfectly willing/able to give her her chemo without having an updated GFR (she had one the last time we were in). Now, for some reason, she needs this test? Sorry, not buying that one at face value. If it was needed before the next dose of chemo, as it was attempted to be explained to me, then why could we do it outpatient without the test?

I also have a general problem with tests/procedures/etc being ordered without consulting us. If there is something that needs done, then there should be a way to explain it. I will likely understand whatever it is. And honestly, before I am or my insurance is going to pay for something, I want to understand why we're doing it. I don't care what the "routine" is.

If you're caring for us, don't go ordering tests, medications or anything without giving us a heads-up, or I could go tell you to stuff it. Or scan you're own whatever. If you think we need something, lets have a conversation.

Otherwise, when transport comes to pick her up, we'll be refusing care.

Bactrim, Yeast and a Rash, Oh My

Chemo round #2 is officially on temporary hold. We got up, went to the clinic and were all set and ready to spend the day in the clinic or the OMO to get fluids and the next cocktail of chemo. Close, but no cigar.

Turns out we have thrush and a rash.

Thrush is an overgrowth of a yeast microbe, candida, in the mouth. Her tongue is white. Its actually pretty gross.

Thrush is not a surprise in a patient receiving chemo. At one point her neutrophils were at 0, and she was taking oral antibiotics. A recipe for thrush, really. Unchecked by other normal flora (killed off by the antibiotics) and her normal immune response (white cells) you probably could predict it.

So, thrush is really no big deal. Not sure if they would have given the chemo with the thrush, but its possible they would have. The worrisome thing is the rash.

She has a rash that started yesterday on her legs, then spread to her arms and finally, today, her face and chest. The big concern of the doctor and nurse practitioner in the clinic was the possibility that the thrush was spreading via her bloodstream, causing the rash.

So, what to do? Oh, wait - there's a children's hospital right across the street! Yep - we were admitted.

So far, things have gone ok. At first she was in "isolation" - not knowing what is causing the rash, the nurses were wearing gowns, gloves and masks anytime they touched or interacted with her.

So, what's causing the rash? Could be several things. Could be a systemic infection. Could be a contact dermatitis. Could be a reaction to a medication. Just not sure yet.

But, since she's not running a fever, we believe they've ruled out the systemic infection. That's a great thing. That would have meant a prolonged admission.

Best guess right now is that it is a reaction to the Bactrim she's been on. They've given it to her three days a week (Monday, Tuesday and Wednesday) to help prevent pneumocystis infection in the lungs. She's had so few antibiotics in her life (so healthy before all this) it's certainly possible she had a delayed reaction to the sulfa in the Bactrim. That will make 2 allergies on her profile now. She had a rash after morphine as well.

If things go well (though our history doesn't give me a lot of confidence they will) we may be able to go home late today or tomorrow. At least that's what we've been led to believe is possible. That would be nice, since tomorrow is Harper's 8th birthday.

Until we learn more, we sit here. Where is that yellow brick road, Toto? There's no place like home.

How Are You Doing?

The most common question I hear these days is obvious. "How is Harper doing?" It's a tough question to answer. Why? Well, because the honest answer is long and in many ways a little discouraging. "She's getting stronger" is one of my responses. It's true. She is getting stronger. Very little each day, but she's getting there.

I have to remind myself of this fact, though. I have to think back to her time in the hospital the first round. The Harper that sat with eyes closed all day, barely acknowledging the world, using a bed pan because she was too weak, or in too much pain (or both) to get out of bed.

Today, she agreed to visit her riding lesson barn, and see Beauty, the pony she rides.



That's a big difference. And when Melissa sent me that picture while I was at work today, I teared up a bit. She loves that pony.

So, while she's come a long way, she has a long way to go to be herself.

The second most common question I get (also a bit obvious) is "How are you doing?" or the alternative version of "How are you and Melissa doing?" or holding up, or some variant.
Wow, that one is even harder to answer candidly and honestly. I usually say "ok" or "hanging in there" or the occasional "fine."

Truth is, I'm afraid to truly ask myself and honestly answer that question. I really don't know, and I likely won't for awhile. Our worlds revolve around Harper, her care, and her well being. Then come Cadence and Finley. And of course, gotta eat, so gotta work. Somewhere at the back of the pack, through the dust, I can see us.

Should I be "good"? Or even "ok"? My daughter has cancer, with a not so rosy outlook. Sure, there is a high cure rate, but the odds are stacked in favor of the Stage 1 & 2 patients - not the advanced stages. Not the kind Harper has.

My world continues to spin. I focus outside for periods, lucid periods, mind you, when I can function almost imperceptibly different from before. But, inevitably, I'm back in the twister, with "normal" torn apart around me.

Wish it were a dream. It's not. Wish I would wake up. I won't.

Have I given up? No. Am I downtrodden? More than a bit.

So, next time you ask, and I say "getting there" or some other less than honest answer, know that I'm asking myself the same question, and not getting a straight answer either.

How am I doing? Wish I knew.

Who Says Laughter Is The Best Medicine?

Everyone has heard it said - "Laughter is the best medicine." And while it is arguable that it is better than many of our modern medical advances, it certainly doesn't hurt. Laughter raises the spirits, likely as important (if not more) than physiological treatment. If your heart isn't in it, then your battle is that much harder to win.

It's one of the things we worry most about. Under the "coping" cover Harper has put on, is her heart in it? Is she fighting for herself? Hard to tell. Her (mental) cover is pretty thick. It has to be to keep out the stuff that is happening to her.

But today, we saw a few smiles. Sure, they were intermixed with grimaces. And yes, there were more grimaces than smiles. But they were there.

This morning, she asked to go to Panera for breakfast. I would have asked her if Cadence put her up to it (Panera is one of Cadence's favorite places to eat) if she was laughing more and could take a joke. But if she asks for a specific food, and we can accommodate, we're in.

She ate part of a spinach and artichoke soufflé, and shared Melissa's salad. We got a small smile.




From there we were off to our big outing for the day - Churchill Downs. We didn't tell her where we were going, for fear she would fight us. We've asked her a number of times if she wants to go out and visit the horses at the barn where she rides, and she consistently says no. We think she fears it will make her sad since she can't ride right now.

We started in an indoor box that a friend generously gave us tickets for. There were 8 seats, and 3 of us. Lots of room. And Harper had some sweet tea, a few nachos and part of a pretzel while we watched the first 5 races. We're still feeding her every chance we get. She laid her head on Melissa's lap and watched the jumbotron. I, meanwhile, bet and lost money - which is what I always do at the track. I'm supporting the local economy...

We walked down to the paddock at one point and she and a friend of hers who we met there (daughter of the friend who gave us the tickets) watched the horses and jockeys mount up for a race. She seemed to enjoy seeing the horses.

Then, the second surprise. A friend of a nurse at our pediatrician's office got us back-track. We went and saw a few horses on the backside of Churchill.

Harper seemed to really enjoy it (as much as she enjoys anything right now) and actively touched, pet and fed the horses pepper mints. We got some more nice shots.





















Who says laughter is the best medicine? Today, the best medicine was horses.

Harper, I Will Follow You Anywhere

My previous post was a little more emotional, so I'll focus this one more on providing an update on Harper and how she's doing overall.

In general, we're seeing slow improvement daily. Not everything gets better all at once, but there seems to be a small victory or milestone just about every day.

For example, she is eating. She is even requesting food, at times. We are making daily trips to the grocery (or so it feels) to buy the things she asks for, but that's a small price to pay if she'll eat it. Yesterday is was mini chocolate donuts and ravioli (Chef Boyardee).



Taking medicine has been a battle since the beginning, but we've also made great progress there as well. She is cooperating a lot more, taking the meds when we ask, and not fighting nearly as much. Since the oral antibiotics are not very tasty, I understand why she doesn't like those, so I try to cut her some slack on pushing back on those, but even there she is doing better.

Her activity level is slowly climbing. She gets out and walks the neighborhood just about every day. It's no power walk, to be sure, but she does it. She can make it about halfway around the neighborhood loop before she needs us to get her home. Yesterday a neighbor offered a couch, and then drove her and Melissa back to our house.

A home health nurse came out yesterday to draw blood for another CBC. The doctors want to see if her white counts stay up a few days after a Neupogen dose. Unfortunately, they were down, so we had to give another's dose here at home.

This was the first time we had given the Neupogen at home, and it was a little tough. Of all the things she hates, shots are near the top of the list. But, after we shed some tears, discussed (again) how the medicine could not go in her central line and were reminded, multiple times how much she hates it, she was brave and let me give her the shot.

The show of bravery is so encouraging. There were times in the hospital when she would just melt and withdraw mentally so it seemed she wasn't even there. Now, at home, we're seeing the same anxiety, but times when she can control it and, to a degree, master it. THAT reinforces she's fighting.

And seeing her fight helps energize and inspire me to keep up the fight for her as well. She's the General on this campaign, and we are mere infantry soldiers. She's in command, and honestly we take our orders from her.

Lead away my dear. Take charge. Lead the fight. And Harper, I will follow you anywhere.

What I Miss Most

It's a dramatic understatement to say our lives have changed in the last 3 weeks. They look very little like they did back as late as May 9th.

So many things have changed, and we have only just begun.

We hardly leave the house.

We surround ourselves with hand sanitizer.

We sent the cat on "vacation" at my mother's house.

We buy any food that Harper even remotely indicates she might eat. Our pantry is about to overflow, as she only eats a bite of each thing.

We have dug out the clothes we had put away because Harper had outgrown them (she's lost enough weight that her newer shorts fall off of her).

We watch a lot more Phineas & Ferb and My Little Pony than before. Entire seasons, over and over again.

We've spent more on medical costs than the previous 4 years combined.

The house lacks laughter. Our house used to be a buzz of activity. Sometimes (more often than not, actually) that activity was demolition - but it was happy demolition. There was joy. There was giggling. There was laughter. That is all but gone, and I really look forward to it coming back.

Laughter. Yes, that's what I miss the most.

The Bad Guy

Every story needs a villain. Every hero needs a counterpart. Well, it would seem that, at least for the time being, I have joined the dark side and am now classified as "evil" in Harper's mind.

Thursday we went into the Hemotology/Oncology Clinic (doctor's office) for our first visit. As part of that, she had blood drawn from her line (twice), her BP, height, weight and temp were taken, and she was examined by multiple doctors and residents. No big deal so far.

Her neutrophil counts had been so low (zero) just 2 days before, and we are scheduled to be admitted next week for another round of chemo. But, they won't give the next round of chemo if her neutrophils are low. And they also wont give the chemo if she's recently had the Neupogen. In order to keep on schedule (and prevent infection) they wanted to give her another Neupogen dose.

Well, if you've been reading along, you know Harper's not a fan of needles, so shots are not on her list of things she likes. Normally, this would not have been a bad things for me personally, as the nurses usually give it, and she can get mad at them just fine - and they're used to it.

But, since we will be giving the Neupogen at home, and I'll likely be the one giving it, the nurse suggested I give her the injection. Not hard, really, and I knew she wouldn't like it, but she wasn't going to like it no matter who gave it. I gave injections and drew blood in the Army as a medic, and I gave thousands of flu shots as a pharmacist.

I gave her the shot, no big deal, at first.

But since I gave her the shot, she really wants nothing to do with me. She drew a picture yesterday showing how her mom and her friend were good and nice, but she marked a picture of me "evil" and drew a thumbs down for me, where everyone else got a thumbs up. I'm thrilled she's drawing, and doing something other than watch TV, but evil?

So, apparently, now, with my connection to and willingness to give her shots, I'm now a bad guy. But you know what? I'm really ok with that.

The Neupogen keeps her white counts up. Sure, it costs almost $3,000 a box, but if it keeps her out of the hospital and without infections, I'm all in.

If needed, I'll even be the bad guy.

Red, Red Wine (or Blood)

So, I wasn't planning on red wine tonight, but I was thinking about a white. Actually, put one in the fridge. But, once again, things have not gone quite as planned.

We went to Dr Corba's office this morning (our primary care pediatrician) to get a blood draw. The oncology office wants a blood count every so often to monitor her hemoglobin, platelets and neutrophils (white blood cells). This was the first time we'd done one outside of the hospital, and Harper's anxiety was in full force. Anything even remotely medical related right now sets her off. When the nurse practitioner came into the room, she started putting on gloves, and Harper went into a tailspin. We finally got her calmed down and they drew the blood.

Later in the day, as I was getting ready to take Cadence and Finley to riding lessons, the oncology office called and told me that her red blood cell counts were low enough that they wanted her to come in for a transfusion. Ok, girls, change of plans. Grandma will take you to riding - Mom and I need to take Harper for some blood.

And so we sit, fortunately this time in the outpatient observation area (across the street from Kosair in Norton) waiting for the blood cross-match and type (in case her blood type changed... Seems silly to me, but if its safety related, I guess I won't complain too much) and for the delivery of the blood.

Lucky (ha ha) for us, her neutrophils are ZERO so she's going to also get a dose of Nuepogen to stimulate her white blood cell production. It's given subcutaneously, so our assurances to Harper that there shouldn't be any needles involved would appear to be false... Should be a great deal of fun. I am envisioning us sitting on top of her to get that done.

But, back to the blood. I've never been a blood donor. I was always too chicken of the needles. Of course, this experience has put blood donation in a different light for me, seeing that Harper and I are the same blood type and she's going to need a lot of transfusions over the course of her treatment. I'm going to schedule a blood donation myself. We investigated "direct donation" where you earmark your blood for a specific patient (as she and I are the same blood type) but have decided against it since if there is any reason they can't use it for Harper, it can't benefit anyone else.

We've been overwhelmed, at times, with the considerable volume of offers to help us as we have started this journey. People have raised money for her medical bills (which will be substantial by the way), brought us food, etc. Its been humbling. But now, as they are about to give Harper her 3rd transfusion, another bit of help comes to mind. Give blood. Or better yet, give platelets, as they are only good for 5 days.

Help keep Harper stocked up on her red. We can take care of the wine.

A New Normal

A common phrase I picked up on during our time at the hospital was "her normal." The nurses would say something like, "call when you notice she's not her normal." I wasn't exactly sure what that meant. I mean, I thought I did, but I was a little off.

See, there was the old normal Harper - the one we all knew. Energetic, playful, laughing. But, that normal is apparently buried deep within her right now. A new normal has emerged in its place.

This new normal is moody, sad, constantly in pain from something. The new normal hates noise, doesn't like to eat the things the old normal Harper liked, and sits, zoned out on the couch. The new normal is pessimistic, thinking that things will never get better, and constantly in fear of the next thing we're going to put her through or make her do.

I love Harper, but I don't really care for this new normal. In fact, I keep hoping this ISN'T the new normal, and is instead some sort of interim normal, and something better is just below the surface, waiting for just the right encouragement to come out.

That encouragement is where I'm struggling. Do I coax with kind, soothing words? Or do I challenge her thinking, remind her how strong she is inside and challenge her to break out? Or a combination, depending on the situation?

She does continue to improve. Today she walked down the street twice. She also asked me to take her to Panera (just the two of us) for lunch, which I did. She walked in on her own, and we moved seats 3 times before leaving (at her request because she was cold in every spot). She ate, and on her own.

But at other times, she was the all too recently familiar, anxious child who just wanted to cower when we asked her to take medicine or wanted to run (well, walk right now) away to her room when her sisters were the least bit loud.

A bit hot and cold. I guess right now we're not having good days and bad days. We're having good hours and bad hours. Actually, it changes by the minute.

I'm still hoping our new normal has yet to fully form, and that it is closer to the spunky little girl with fire in her belly that I knew before all this started.

Fight, Harper, fight. We're all here to fight with you. Lets make fighting our new normal.