"The most wasted of all days is one without laughter." ~e e cummings

Sunday, May 7, 2017

an Answer

On Thursday afternoon, the House Republicans voted to dismantle our health care system. That very morning, we received the diagnosis we had been searching for, but narrowly avoiding, for the past year.

The diagnosis came just hours before 217 (predominantly) old, white men spitefully decided that being powerful was more important than being compassionate...and just days after Rep. Mo Brooks of Alabama defended charging more for preexisting conditions (and allowing insurance companies to deny coverage to people with them). He said that this allows insurers to reward “people who lead good lives,” insinuating, of course, that people with complex medical histories brought that trouble upon themselves.

I would like to invite Mr. Brooks to meet my 10-year old.

To the representative, he may be unworthy of compassion and care...fit to punish for his poor life choice of having received this diagnosis...but to me, Evan is like no one I've ever met. He is smart and sensitive. He is willful and can be defiantly independent. He has a tender heart and a moral compass that is straight and true. He loves to build with Lego and create fortresses on Minecraft. He is a newly-crowned Kickball King and still wants to be tucked in to bed at night. He has a passion for Facts and compassion for the young and the furry. He has plans of joining the military when he gets older but who also sees himself as a father; "Who wouldn't want kids?!" he's asked, incredulously.

On Thursday, we learned that Evan has Crohn's disease.

Crohn's is an inflammatory disease of the gastrointestinal system. Though it can go into remission and sufferers can have symptom-free periods, it's a chronic condition that cannot be cured, only managed.

He'll have it forever. For the rest of his life, Evan will need to take medicine, have frequent blood draws, and undergo regular scopes and MRIs to monitor his condition.

There are positives:

First and foremost, it's an Answer. An answer to the weight loss and the anemia, an answer to the "phantom fevers" that Evan seemingly could bring about by his own volition...he has a history of spiking fevers leading up to or at the conclusion of just about every holiday, trip, or special event. These were probably a result of the Crohn's inflammation, which can flare up under stress. It may even account for some of his food allergies. It's not the answer I was hoping for (Not gonna lie, "Oops! Our measurements have ALL been wrong ALL year! Evan is growing beautifully and his hemoglobin levels are excellent!" would have been nice.), but it's an Answer with a Plan.

Evan's Crohn's was caught early. (We are so unbelievably grateful for our persistent pediatrician and our pediatric gastroenterologist, who refused to take a wait and see approach when they saw that Evan's growth was restricted even after removing all suspected allergens from his diet. Crohn's can be a sneaky beast to catch, wreaking quiet havoc until extensive damage is done and it can no longer hide.) Because it was caught at such a young age, Evan should be able to make up for the weight he's lost and reach his full growth potential.

Also, the area of inflammation is relatively small, so we are able to start Evan's immunotherapy with an oral medication taken daily. If, after a year of blood draws and scopes, his inflammation is under control and he is able to gain weight, this will be our course of action until anything changes. If his inflammation rages up again or he continues to lose weight, we will alter course. He will then receive his immunotherapy through IV infusions every 8 weeks.

But first, oral steroids, to quiet his entire system so the immunotherapy drugs have a chance to work.

One of the many times I cried during Sam's and my consult with our PedsGI doc Thursday morning was when he mentioned "oral medication."

"Like a pill?!" I cried. "But he doesn't know how to swallow a pill! He still drinks his Children's Tylenol out of a tiny plastic cup!" (My mind still hadn't wrapped around the idea that this would be our New Normal. A pill or six a day. Every day. Forever.)

The doctor smiled warmly, reassuringly. "He'll learn," he said. "He can do this."

The doctor, yet again, was right.

That first night, Friday night, was rough. He needs a pretty high dose of steroids, so he has three pills to swallow, twice a day. He couldn't quite get the first one down so it melted on his tongue and stuck to the roof of his mouth. It was horribly bitter. There were tears, but there was determination.

"This time, give 'em both to me at once," he said. We did, and they went down easily.

Saturday morning, he took all three at once like a boss. Like he's been doing it forever.

Forever. That damn word.

We've been really open with him about what's going on. I've hidden my tears (nearly successfully, I think), but we've told him the truth. "Will I have this forever?" he asked. "Forever," I said. He cast his eyes downward and his chin quivered. I quickly went on: "But you won't feel bad forever. In fact, once we start these medicines, you'll probably feel better than you have ever felt before."

And we talked about how he's not alone. Lots of people in our life have chronic issues for which they take medicine regularly...forever. It's not their fault...their bodies just need a little extra help to work properly. "Aren't we lucky that we know what your body needs? Aren't we lucky that the doctors know just how to help?"

I said that last part for myself as much as for him.

We're so lucky.

F*ing Crohn's. But we're so lucky to know. He's going to be okay.

So long as the GOP doesn't ruin health care for us and everyone else.

Lesson Learned:
These last few days have been a whirlwind. I'm pretty sure I have experienced every stage of grief over a 24 hour period...in between making dinners, playing Pet Store, answering emails, scheduling field trips, prepping for a yard sale, and PTO meetings, of course. Life goes on. And so will we.

This kid amazes me on the regular...but through all the shit he's been through this past year...the endless doctor's appointments, the countless needle sticks, the scopes, the MRI (the barium contrast!), the diagnosis, the pills...he just handles it, and I've never been more proud of him.

It hasn't all been easy and there have been times that I have wanted to just put my head in the sand and ignore everything. But he keeps pushing through. I have every confidence that he's going to be able to handle everything Crohn's throws his way. He'll use the same defiant determination that has, at times, been the bane of our relationship and show Crohn's who's the boss of him. And he'll do it every day, Forever.


  1. Some days suck harder than others. At least you have a diagnosis, that is one good thing. The fact that it is on the back of a stack of bloody awful things doesn't help much. Give him a cuddle from us.

  2. The problem with the current healthcare system for lower income people is not the monthly premiums (even with many people not even able to afford $50 a month) but it is with the high deductibles.

    We are forcing low income people to pay monthly for a product that they cannot afford to use or face penalties at the end of the year on their taxes. $5,731 is the average bronze plan deductible for individuals who purchase an Obamacare health insurance plan from HealthCare.gov. So that amount has to come out of pocket BEFORE the insurance will kick in and help these people. Go ask a single parent who only makes $20,000 a year how they can afford $5,731 in deductibles? And then 30% of the cost after that! Even the lower deductibles at $3,000 are unaffordable for these people.

    So with the current system, the government if paying $100's for an individuals insurance a month to the insurance companies and that individual is also paying an amount they cannot afford all for insurance they cannot afford to use because of the deductibles.

    Also, I have mitochondrial disease and I thought my medical costs were high before the Affordable Care Act. But now my yearly costs are over 4 times what I was paying before. What the ACA is doing for people like me who suffer from illness but still try to work is that we are being forced to stop working just so we can get disability because we cannot afford our insurance anymore.

    Do you get your insurance through an employer or do you have to buy your insurance on the open market? If it is through an employer I would suggest driving to a lower income area and talk to healthy people that are being forced to buy insurance on the marketplace and also find someone who has had an illness for years and ask them if they or better or worse off with the current system.

    Also people need to understand the term pre-existing conditions in relation to insurance. I have been dealing with mitochondrial disease for years, but I do not have a pre-existing condition. You only have pre-existing condition if you do not have insurance and are looking to buy it. If your son currently is insured, then his illness is not a pre-existing condition... it is just an illness.