The Opioid Epidemic

I was sitting in a community meeting when the speaker asked the audience, "Does anyone know anyone who is addicted to opioids?" I thought "no". "Does anyone know anyone who has had an overdose?" I thought, "no" again. I listened intently as experts and community leaders talked about this remarkable epidemic affecting our community.  It was an incredible discussion and not in a good way. It was troubling indeed.

I couldn't believe this was happening. I sat speechless, moved and awe struck by the conversation, the facts, and data.   I've seen the news with the striking photos of slumped over, grey looking individuals in the middle of an overdose.  Some parents driving babies and toddlers in minivans overdosing in parking lots of strip malls. It's a horrifying visual with so many children in the middle of the epidemic, affects to be felt for the rest of their childhood.

I couldn't sleep after that meeting.  I thought of all the ideas that needed rapid deployment. You can't wait in this type of crisis.  Things are needed now, small or large, but not slow.

Then I remembered.  Then I remembered how I knew what an overdose looked like. I walked in to the neurology floor to visit my two year old son.  I had just had his brother only a few months before Alex was to have surgery.  I walked in to his room where my husband was sitting.  Setting the baby carrier on the floor, I walked over to his bed. He was a pale white, almost a greyish color.  Alex's lips were starting to show a pale blue color and then they were turning a deeper blue. Alex occasionally jerked like he was catching himself from a fall you imagine in your sleep.  I pressed the call button.  "Please come in here and take a look at Alex.  It looks like his lips are turning blue."  A nurse came rushing in, quickly observed what was happening. The nurse advised, "I know what is happening". Within minutes or seconds, I'm not sure but it felt like seconds, she returned with Naloxone in an IV bag. She explained that sometimes patients have reactions to narcotics.  Alex returned to himself, and opened his eyes and looked at us. I had shoved that memory to the back to my mind but it came back.  It came back when I realized that I did see an overdose or a reaction.  I did see the powerful effects of such a powerful drug, and one that reverses those effects if given quickly enough. It left an impression, and was scary to watch.  I couldn't imagine this scenario in a parking lot, or a car, or someone's house. My poor son but he was okay, and so we moved on. The memory came back for a few days as I remembered it all again.  I had a few days where I had trouble sleeping as I thought about that day, and thought about the experiences our communities and citizens, and first responders must be having today and tomorrow and the day after.

My memory of that day has gone to the back of my mind again but what a powerful lesson. As parents or a family member, you're always the primary caregiver in the room with your child or loved one.  Sure the machines would have notified the professionals of the emerging issue but not as fast as an observant parent or caregiver.  It's also a lesson about medicine and its power.  It's our duty to ensure we understand what's happening, what the effects are and what it looks like when something goes wrong.  Every medicine is a powerful decision, and with that power needs to come with observance and careful monitoring and care and concern no matter what is being consumed. We are all caretakers of each other. The lesson will stay forever even after the memory fades.

That surgery is still the hardest surgery I have ever had done to another human being. It was a hard time. It's a memory and a lesson that I hope not to revisit ever again.

It Takes Two

It takes two to see Hunter Syndrome in a whole new light.

I wrote this blog because I googled the following: " how common is it for two people in a family to have cancer at the same time".  I didn't like the choices that came back because they were about heredity and genetics but I really want to know if there is data for our situation - "how many people live with more than one person having cancer at the same time in their family?".  To me this is what it feels like to have two children with a rare disease at the same time, in the same family.

It takes two to see Hunter Syndrome in a whole new light.  On MPS Awareness Day, I realized how unique our family situation is with regard to Hunter Syndrome.  We're not the only family who has multiple children with Hunter Syndrome, but there are many, many families who have just one child with Hunter Syndrome.  We also have one child in a clinical trial and one not in the trial.  That narrows down the population of families who have this scenario to a much, much smaller percentage, perhaps even single digits or less.

Having two individuals with Hunter Syndrome has really given us a perspective of the variability of the disease, even in families with the same phenotype, and the individuality of the disease.  In short, we have one heartbreaking perspective and one hopeful perspective, one that requires us to work hard, hope harder, and love harder, and another that eases our concerns, comforts us, scares us that we might lose something so good.  These disparities tug and pull at us but cause us to scream for joy, and at the same time be terrified.  I am not even sure this is something that even the Hunter Syndrome community of parents and effected children and adults can even understand.

I often see others obsess and worry over their child and compare and contrast progress of one child against the population as a whole or those who we know have Hunter Syndrome.  We have this comparison to make in our own family.  We have two.  When you find yourself struggling with one, ask yourself what it would be like to have two or more children with a life limiting disease.

Take the worry, appointments, therapies, education requirements, hope for treatments that save, fundraising, providing for your family and other things the average rare disease parents worry about and multiply that by two.  I don't even think this is a topic that Google handles well or even has enough documented stats.  I recently asked Google how common it is to have two family members battling cancer at the same time with no really good answer except inheritance and the hereditary nature of some diseases. It's logical to have multiple children in families effected by a disease when it's inherited but have you lived it? Living it, and reading it are two very different things.

How is it even possible that we're still standing as parents?  We are still standing because we have two - literally the cause of our strife is literally holding us up, keeping us standing.  We are still standing because of the differences.  We have living proof of possibility, and proof that you can affect everything in small, stabilizing and even disruptive ways.  You can even affect something you don't think you can.  We are having a profound affect on both of our sons' lives. We are still standing because we draw from everything, we learn from other diseases, we know that pulling from the experiences of others helps pull us up or pull us in the right direction.

Amy