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.