Thursday, January 17, 2013

Pleasure and Pain

I've been thinking about how to write this entry for weeks and I still don't have the answer, so I'm just going to start...  Right now I am in Spain with Brady, my husband, and my mother.  We have been here since Christmas eve.

A little back story--In 1998, I participated in an international exchange program to The Netherlands.  I became great friends with my roommate there--a Spanish girl named Neus.  I ended up spending Christmas with Neus and her family in Valencia in '98 and then stayed with them in Spain for the summer following our school year.  The time I spent here as a young woman will always be cherished as one of the most amazing experiences of my life.  Neus has come to visit me in The States many times since then and we have maintained our friendship through the years.  I never dreamed it would take me 14 years to make it back...

Neus and I in 1998

From the time Brady was an infant, I had the hope of VX-770.  We knew that if we could keep Brady's lungs healthy until the drug reached the market, he might be able to enjoy a long, healthy, relatively normal life.  As many of you know, it is a strange position to be in--knowing there is something right around the corner that will turn your world upside-down.  We were super aggressive with preventative treatments and especially careful about exposure to germs/bacteria.  The idea was that ONE DAY, we wouldn't have to live that way.  ONE DAY we would be free.  ONE DAY we would take a fabulous family vacation to celebrate Kalydeco, Brady's health, and our new lives.

On February 10, 2012 Brady took his first dose of Kalydeco.  The drug took effect almost immediately and we watched with wonder and awe as our son's health improved before our eyes.   His one year anniversary on "Blue Lightening" is just around the corner.  Over the last 11+ months, we have slowly and cautiously removed many of Brady's breathing and lung clearance treatments.   The physical effects of the drug have exceeded my expectations--which were extremely high.  As the months passed and our dreams became reality, we started planning our celebratory vacation to Spain, and now we are here.  We decided, with Brady's Dr., to leave his VEST machine at home and bring only the Acapella for airway clearance.  The industrial size Mobilaire 50 psi compressor that powered through so many treatments was also left to collect dust in Idaho, and instead we brought our tiny Omron Microaire Nebulizer for the single vial of Pulmozyme that Brady inhales daily now.  In terms of CF--we fit everything we needed to care for Brady for over a month in a single small backpack (with room to spare!).  The backpack may have been small, but it held over $30K of Kalydeco inside (Brock didn't put it down for a single second!).  You know that feeling you get when you leave home and you are just SURE you have forgotten something??  I still can't believe that we were able to travel so light, and that we haven't missed a thing!

See, this trip feels sort of like our "victory lap."  Brady IS doing amazing and we ARE enjoying our new lives.  But everything is not quite what I had expected.  I was so focused on how Brady's health would change, that I simply didn't put much thought into the psychological mine field that would continue to ravage my brain post-Kalydeco.  It just doesn't feel good or right to circle the track with our precious bottle of medicine in hand while Dalton's mother suffers the heartache of losing her child to the same disease--while Missy battles to improve her health enough to undergo a lung transplant--and while new babies are born and diagnosed with CF every day.  Damn it.  I know it is important to share Brady's story because it gives families HOPE.  I know it is important because families worked for decades to support the CFF and their work and donations gave rise to the research that resulted in Kalydeco.  I know it is important because it is an event worthy of celebration...but I am keenly aware that the war is not over and that the majority of patients and families are still waiting for their miracle.   I am constantly torn between feeling so lucky and happy about Brady's health and feeling like an insensitive prick to the others who are still battling. 

So, I'm going to do what I feel like I have to do--keep sharing, and keep working.  I received an email from the Director of Clinical Research Resources at the CFF a few days ago.  The CFF is forming 5 strategic planning committees composed of board members, Foundation staff, patients and family members, CF Care Center staff, industry participants, and outside experts to help realize certain goals over the course of the next 5 years. Anyway, they invited me to be on one of their teams--the "Adherence Action Team," and I will be flying to Bethesda for 3 face-to-face meetings this spring and working with the team via phone conferencing, email, and team website also! I am honored to represent patient families in this effort.  Of course, Great Strides time is also coming up again and it is more important than ever to keep those donations rolling in to finance medical research for CF patients.  I know that the wait for the combo is going to be too long, but I am extremely hopeful that many more patients and families will be taking their victory lap soon.  I'm so excited to read about more "Kalydeco miracles" as patients in the UK begin treatment with Kalydeco (and coming soon to Scotland--CONGRATULATIONS!).  

I am going to conclude this entry with some of our vacation pics.  I know it isn't fair, but downplaying the miracle of Kalydeco wouldn't be right either.  It is time for our family to make up for some of the freedom that CF took away from us.  It is time to celebrate! 

Plaza de Espana--Sevilla

Seafood Paella

Soccer game at Camp Nou--Barcelona vs. Espanyol

Brady at the Beach--Benicassim

Brady and Neus--She was a volunteer organizer for a kid's race in Valencia, so Brady ran!

Checking out the shark tunnel at Oceanografic--the largest aquarium in Europe!