An Old Blog, A New Year, A New Cause

This is a fairly evocative picture.  It's one that most of you are probably familiar with, even by reputation, if not necessarily this particular picture.  This is Jayne, 2 years and 7 days ago, after getting his first bath with his newest accessory.  The two tubes sticking out his chest were so that the chemotherapy could be administered without needing to puncture a vein each time.  These tubes go directly into cardio-vascular system by way of the neck.  They were used to give him blood, plasma, antibiotics, medication, and to put him under.  The clear patch at the top of the bandage is where the tubing actually enters Jayne's skin and into the vein.

Look at it for a second.  Examine, if you will, the pad that is there to keep the tube looped just in case the baby, who relies on this gateway to his heart, finds the urge too much to resist to yank this apparatus out of his chest.  Notice, if your eyes permit you, the plastic caps placed upon the red and white nozzles.  Those are there because, if any bacteria were to get in the tube, it would instantly have access to his blood stream.  Take note of the fact that he, the boy they call Jayne, is more interested in that monkey than anything else going on.

There's a hole in that baby.  And it helped to save his life.

Jayne is a healthy, little toddler now who sometimes seems like he is a descendant of the Tasmanian Devil.  He has a scar and some skin discolored skin patched as reminders of his stint in the cli(ni)k.  He knows that he sometimes goes to Phoenix and has blood taken, for which he is a lot braver than some of his grandparents might be.  He knows that he hasn't been to too many public places and that he has minimal contact with kids his own age, though that is gradually being rectified. 

In November, he got strep throat and it scared us to death.  You see, even though Jayne is healthy and cancer free, his immune system is still a scarred veteran of the war is endured with cancer and chemo alike.  He is more susceptible to infection than a 'normal' toddler and things such as the flu or strep could very easily escalate.  That week was the first time that we had had to give him medicine since being out of the hospital.  And it brought back very jarring memories of seeing our little boy laying in a barred hospital bed, hooked up to machines.  As a result of that, in January, Jayne was hooked up to yet another machine for several hours and given a transfusion that would help to boost his immune system.  His broviac tubes long since gone, our little guy had to be given an IV and needed to be kept relatively calm while the procedure played out.  Fortunately, Jayne was a trooper about it and didn't rip the needle out of his arm but I wonder if he was the exception, rather than the rule.  Still, it had to be done, to ensure that Jayne would be able to stay healthy, to have a somewhat normal existence in the wider world.

$9000.

That's how much it costs to safeguard a leukemia survivor of 2 years old.

$9000.

It seems a bit ludicrous, doesn't it.  And, on top of that, our insurance company has yet to cover it.  That is in regards to a large mathematical error that they committed when calculating our premium and it has taken them 2 months to figure out.  This isn't the first instance of errors negatively affecting our lives, either.

Four months of 2017, I have been fighting with the federal healthcare marketplace and our insurance company regarding the non-coverage of our daughter, Chloe.  I finally won the appeal in December but the paperwork still seems to be pending.  As a result, we have been denied claims for her doctor's visits, her immunization, and an emergency clinic visit when she was sick in October.

Did I also mention that Chloe might have a fairly serious heart murmur as well?  Yeah, they aren't covering any of her echo-cardiograms, her x-rays, or her cardiologist visit in Flagstaff.  I've spent hours on the phone trying to find out how someone could deny coverage to a newborn baby that hasn't done a damn thing to anyone.  I've emailed, I've scoured for documentation, I've made records, and I've pleaded with faceless voices who are only doing their jobs.  As a result of all of these... hiccups, we are now being told that we are in some pretty severe debt.

Shay and I have been slowly grinding away at this debt, which was much higher, for the past 9 months.  But Jayne needs to go to his check ups and Chloe still has a second cardiologist visit to go to.  We have resolved that we can't let the financial landslide keep us from taking care of our children.  Some people would probably think that we have some fairly spotty luck and I would agree. 

We live in a country that doesn't think it important to take care of sick children.  I know that socialized medicine is hot button issue and no wants to give ground on it.  I understand the issues brought for and against and I doubt it will be solved within the next decade as how that's going to happen, especially with the complicit sabotage of the existing, not-at-all-perfect system.  But scroll back up and look at the picture.  That baby's life cost, according to our current healthcare system, about .014% of an F-22 Raptor jet. 

There was always that cliche saying that "Children are our future."  Isn't it about time that we start investing in our future, as a civilized, modern society?  There is nothing more heartbreaking than a sick child, except maybe the parents of that child after they have passed away.  I have previously expressed just how it felt for me, personally, having to go through Jayne's ordeal.  I can't imagine the black hole that would be the loss of a child.  To watch someone, whose first word you heard, whose first step you were there to witness, slowly deteriorate into a shadow of that happy, little human being and to have be there when their last breath has expired.  I can't imagine bearing an undersized coffin to an undersized hole in the ground.  To lower it six feet down and then cover it with dirt.  And to still be expected to function properly after that. 

Accidents will always happen.  Death is inescapable.  Compassion, though, is what it is to be human.  There are a lot of issues that are hotbeds of argument and ugliness but this should not be one of them.  A family should not be expected to choose between medical bills and solvency.  A family should not be constantly harassed by debt collectors for ensuring the health of their children.  I'm not sure how to get that notion off the ground, but if Elon Musk can send a car to Mars, I'm sure I can figure this out.

Chloe, play us out.