We Don’t Deserve This

After Chip was diagnosed this past October, as I’ve shared before, we were both shocked, sad, scared, you name it, and I would be lying if I didn’t admit we both questioned why this was happening to us?  I mean, Chip is this really wonderful person and damn near perfect husband and father; he didn’t deserve this.  On the flip side, Chip felt I didn’t deserve this.  And above all, we both knew our kids certainly didn’t.  Not that we wished this upon any other family, but what did we do to deserve this?

Now we both find ourselves feeling that exact same way again. 

The now infamous Ginny Johnson, through our lotsahelpinghands community site, launched a fundraising effort a couple of weeks ago to help raise funds to cover our clinical trial-related and ongoing medical expenses.  The initial ask was for $22,000.  Fourteen days later, the drive concluded with a total of $56,822 having been raised!  Seriously???  That’s just crazy amazing, people.

photo thanks to sarah!

Chip and I were driving home from Philadelphia one day last week, and I had the site pulled up on my iPhone, rattling off the names of recent donors.  As we were driving home from this city where Chip, who is only one of 200+ people to ever take this unnamed and unapproved drug we are placing all of our hopes and dreams in, we literally found ourselves completely overwhelmed by everyone’s generosity and kept saying how lucky we were!  Now just how messed up is that??  We questioned whether we had been so generous and supportive of others in the past.  Chip so perfectly said he certainly hoped so, but we both knew we had not.  Gulp.  What did we do to deserve all of this??  We both quickly added “become a better person” to our respective to-do lists.

The list of donors is just so incredibly varied and full of names of family friends and high school friends from both Conway, NH, and Marks, MS, college friends, the MS Mafia and NH contingent in D.C., teachers from Joe’s daycare, parents of Joe’s friends, people we used to work with, people we currently work with, Senate Moms from our coffee group, Republicans, Democrats, the delegation I traveled to China with in 2006(!), Chip’s Tuesday night support group, friends of your friends, my very favorite nurse in the maternity ward when Crosby was born, people we don’t even know!  Thanks to Ilona and Maarten, we even have card-carrying members of Team Kennett in the Netherlands.  We are literally spanning the globe.  Had Team Kennett existed back in the day, perhaps we could have even prevented The War of Northern Aggression from ever occurring.  I kid.  Not only was it therapeutic to rid our minds of this financial stress we were starting to come under, but it also was just downright fun watching names pop up.  It was a trip down memory lane for us both.

Some gave a little and some gave a lot, but the dollar amount didn’t matter.  What mattered was that the reach was just so far and wide, and we have to assume that if you were willing to read Ginny’s e-mail, take your debit card out of your wallet and donate even $10-$20, then you were most likely also saying a prayer, sending positive energy, feeling good vibes or at least thinking of US.  Wow.  That is so incredibly humbling and invigorating.

There is a huge part of us that is uncomfortable and embarrassed to receive financial contributions from our friends and family; however, we have amazing health insurance and great jobs, and I stay on top of our finances and am constantly trying to figure out cost-saving alternatives for us (such as receiving prescriptions via mail order at a reduced price), and our medical expenses still far exceed what we can afford to pay each month.  So more than anything, we are extremely grateful for the support.  It just allows us to focus on this fight instead of stressing out over how we are going to be able to pay our bills and afford this trial each month.  We have both made jokes about how we wonder if anyone would notice if Chip was suddenly driving a new car, since his 10-year-old P.O.S. car is on its last leg … or perhaps we could use part of the funds to finance my boob job following nursing two kids, as that would be great for Chip’s morale. But we clearly jest.  Please, please know we respect your generosity so very much that we promise to use the funds exactly as intended and will do our best to make it stretch as far and long as possible.

And in addition to all of that, you are still providing us with fresh produce for juicing and meals several days a week.  Oh, and really nice bottles of pinot noir.  I swear I did not put Ginny up to that one, but I am not complaining that she added that to our recommended dietary guidelines.

Funny side note:  Joe went outside to play this weekend, walked over to the cooler, opened it up and came back into the kitchen to let me know there wasn’t any food in there yet, but not to worry because he thought it would be in there later.  Ha!  The little man is going to grow up thinking dinner just magically appears in the cooler on the back deck.  I admit I am pretty enamored with our magic cooler myself.

Social media and blogs have changed the way people communicate about their own tribulations, and I see all of these stories of people I don’t even know pop up in my News Feed–Team Andrew, Carter’s Journey, etc.  I can’t help but wonder, are their friends and family being as equally supportive of them?  Are they lucky enough to work with incredibly supportive bosses and colleagues?  Are people helping take care of their kids?  Are people feeding them?  Are their friends and family driving and flying in from all over the place to help them for a couple of days or possibly weeks at a time?  Oh, how we certainly hope so.

Despite it all, Chip and I remain grateful, supported and loved.  Please never mistake our positivity for denial, because we both know all too well what we are up against, but we just have so much going for us. Chip’s age, our will and determination, winning attitudes, each of you, access to the best medical resources and specialty oncologists in the world all within driving distance, you name it.  There is always a first person to experience a medical breakthrough, and if anybody can do this against this rare form of lung cancer, I truly believe it can be us.  We sure as hell are committed to giving it everything we have.  I KNOW Chip deserves that.

– Sheila

hellos from crosby and joe!