Don’t Read This Post

June 17, 2015.Reading time 6 minutes.

Disclaimer

Don’t read this post if you prefer only happy thoughts today. There are plenty of other posts better suited for that on this blog and others.

This post is sad.

This post is heartbreaking and uncomfortable.

This post relays some of the realities of burying a child. It hurt to write and will likely be hard to read.

Once you read this post you will know – and you can’t unknow what you know.

If you want to stick your head in the sand and pretend that we are doing enough to cure childhood cancer, this isn’t the post for you.

You’ve been aggressively and sufficiently warned. You might want to stop reading now. I won’t think any less of you, I promise. I admit that I turned my head away up until a few years ago – but now I know and I will forever know.

* * * * * * * * * *

Two things happened on a Tuesday last month – one planned and one a surprise.

We had a piece of unfortunate business to attend to. Many of you have been through the death of a loved one and were responsible for the pragmatics of laying them to rest. This was our first time. We had been putting it off, but if we want a grave marker for Kylie, it had to be designed.

So on that Tuesday, we went to the funeral home where Kylie was buried. Nothing about being there was easy. Even though it is owned by dear friends and I’ve been there for countless funerals, it screams of the day we buried Kylie. I remember planning the service, the line of people at visitation, saying goodbye to her, holding my crying girls, and the sinking feeling of permanence. Worst of all was the shock of sitting in the back of a car when the casket came out carried by my seven nephews. I don’t know why that moment was so poignant. Maybe it was the sheer surprise of the door opening or because I wasn’t doing anything. I had no role at all. Like during her treatment, I was relegated to being a spectator. Whatever it was, those young men emerging with that box will forever be etched in my mind.

On this Tuesday, we sat around a table and talked. Earlier I had asked Robin to think about what she wanted on the marker. She had never mentioned it and didn’t show up with notes. But when asked, she rattled off what she wanted and it was perfect:

Soon after we finished that piece of business came the surprise. It came in the form of eight copies in a manila envelope. Eight copies. Eight copies that reaffirm what I know every day. Eight copies that make me feel helpless, weak, and insufficient. Eight copies that bring me to tears as I read entries such as MARRIED: NEVER…

Never means never.

I hadn’t thought about getting these documents. I suppose I need them. I’m not sure what for – she didn’t have a trust fund to dispense or a will to execute. She was just Kylie, 12 year-old Kylie, and now she is gone. I feel her gone-ness every minute of every day.

* * * * * * * * * *

This is how it is when you lose a child. The thing we had to do was difficult, but sometimes easy things like accepting an envelope devolve into an emotional crisis and break you into a puddle of tears.

We had driven separately and I cried the entire way home. I think seeing the death certificate brought back feelings of failure as a father… that I didn’t do enough to protect her. It felt so real and concrete, carved in stone.

I managed to keep the envelope away from Robin’s sight and stowed it into the safe with our other family records. Birth certificates, passports, insurance policies, marriage licenses, and now our first death certificate. Oddly, according to the state of Georgia she died of respiratory failure, not the insatiable beast of cancer. Maybe that is how the government rationalizes the fact that since 1980, only three new drugs have been approved specifically for use in the treatment of childhood cancer.

Wait! What? Did you hear that?

While hundreds of drugs have been approved for adults in the same time span, children are dying and getting next to nothing. In this age of genetic discovery, children are receiving a pittance… table scraps.

And so, Kylie is gone. I have eight copies of her death certificate to prove it and unless we step up and do something, other parents will get the same envelope.

I feel about as helpless to affect government spending as I did watching her body capitulate to cancer.

But you read this. And now you know. You may choose to ignore, but you can’t unknow. Maybe that’s a step. And if you tell someone, then they will know too.

Playing Doctor

June 10, 2015.Reading time 4 minutes.

When you were a kid, did you ever play the doctor game? Just a few friends together in a quiet room. It is one of the few games boys and girls could play together. Before your mind goes a-wandering, I’m talking about the electric board game that buzzes when you touch the sides. Operation – “the whacky doctors game, batteries not included.” I used to love that game. I don’t think I ever owned it, but a neighborhood pal did.

We aren’t allowed to have it in this home. When she was little, the concept freaked one of my daughters out so badly that she wouldn’t have slept had it resided under the same roof as her.

Although I have no medical training whatsoever, I would like to operate someday. I wouldn’t bluff my way into an operating room ala Frankie in Catch Me if You Can. I’m thinking more like a right place, right time scenario where I have to do an emergency tracheotomy while being given instructions by a tense doctor over the phone. Or does that only happen on television?

Seventeen years ago, I thought my surgery had arrived. Labor came quickly for daughter # 2. I pushed our little mini-van to its limit getting to the hospital and barely made it. She was born eighteen minutes from the time I wheeled momma through the door. Rats! Well, maybe that would have been a poor choice of first operations. Those stakes were very high and that patient was pretty surly – made even angrier by the fact that an unnamed person didn’t get her to the hospital in time for an epidural.

I totally could have done it, though.

I now have an app on my phone from the Red Cross to guide me. It’s a decision tree that asks questions to diagnose basic maladies. If you answer “yes” to more than one it almost always tells you to call 911. When I read the questions to someone, I don’t panic and my voice remains very calm and assuring – which makes feel like I’m pretty much a doctor.

A second opportunity presented itself recently. My brother-in-law started having pain in his abdomen. Rather than come to me, he went the traditional medicine route and was told he needed his gallbladder removed. Disappointing. After scouring the internet for the actual location of the organ, I decided this was my chance.

He seemed very dismissive of my offer at first. In fact, he barely paid attention. I chalked this up to pain. He just couldn’t think clearly. When the date of the surgery came, the so-called “professionals” had a little trouble and couldn’t perform the operation arthroscopically. So they had to cut him open, which led to complications and a ten day stint in the hospital.

Serves him right. I could have done it. I even ordered a new Ginsu knife and everything. While a full recovery was not guaranteed, the billing rate was substantially less than the one he got and he would have been able to stay at home. Besides, just think of the joy he would have brought me.

So if healthcare costs have got you down and you are looking for a cheap, extremely dubious alternative, look me up. Unlike most docs, I will be waiting for you instead of making you wait.