posted on CarePages Aug 16, 2011

You haven’t heard from me in a while. I have abdicated update responsibility to Erin while I struggled to find inspiration and recovered from a series of body blows. As a multi-generational Augusta native, pride in the Masters is a given. One wonderful thing about the U.S. Open, though, is that the drama unfolds on Father’s Day. This Father’s Day is when Rory McIlroy shook off a dreadful Masters collapse and won with as much class as he lost with in Augusta.

As soon as we were lulled into a sense of normalcy and appreciation for the apparent opportunity to enjoy summer for the first time in five years, just a few hours after Father’s Day came to a close, a lightning bolt singled out our home, our place of refuge from the world of cancer, and destroyed it without mercy. This was a home that Erin and I had enjoyed for 11 years – a time period longer than either of us had resided in any home in our entire lives. Three children had been whisked away to that mountain soon after birth. Madison was on Lake Glenville at two weeks of age. We had announced Erin’s pregnancy to our mothers there a few months earlier. Selfishly driven by a desire to perfect that place within its boundaries, I had distracted myself for 18 months with an extensive, evolving, and, candidly, expensive renovation of the entire structure. My affection for this place was so occupying that Erin began to call it my mistress. The project was completed just ten days prior to the home’s complete destruction. I was very proud of the product. I was devastated by the loss.

Over the last eleven years I befriended our plumber, Dave Bryant, who like many is keenly aware of Patrick’s circumstance and cares for him genuinely. One day I told Dave as we diagnosed some issue with our well that the work on this home was my therapy much like Patrick’s Lego projects are for him. When we got the news that the house had burned I called Dave, who reminded me of my comment, and wisely noted: “apparently God thinks you need some more therapy. “ Suffice it to say I am back in treatment and will build an even better home!

I love Sunday morning of the British Open. I always look forward to waking up and reaching for the remote without ever getting out of bed. This year my plan was painfully interrupted when Erin came to tell me that our 12 year old Boykin Spaniel, Banks, was dead. I transitioned from coffee in bed to a deep emotional low and began the task of digging her grave as Madison and Anna gathered rocks and Patrick played blissfully at the pool. Later he took the news with predictable stoicism. Banks was a very sweet, beautiful, smart, spry, seemingly healthy dog. I had another Boykin, Canoe, when Erin and I met. He was prominent in our wedding pictures. He, too, died young. But Banks was our first child raised together, and her untimely death hurt. Erin and I are already toughened up a bit, but what in the world was happening? Our home? Our family dog? Is this God’s way of callous formation for Madison and Anna? Teaching opportunities?

I began to joke with my friends that major golf tournaments don’t agree with me and that I feared for the weekend of the PGA.

Patrick handled chemo week well. No vomiting. Not really any nausea. So far, knock on wood, strangely, no hair loss. But his counts took a predictable beating. He needed platelets last week and his ANC was miniscule. He began to develop a stye that got worse while we were in the mountains. Erin took him to two doctors who dismissed the problem as a stye that was worse than usual because of the host’s lack of neutrophils. So we pressed on with our mountain time while Patrick’s eye began to look like Rocky Balboa’s.

On Sunday, PGA Sunday that is, we prepared to leave the mountains to reenter Atlanta, school, tumor kill, then we were delayed when Fiction, our cat, chose the mountain forest over the kennel. The only hope was to wait out her hunger, but we did not have time for that and Erin’s father and aunt were staying at the lake house so we believed that everything would be OK. I could not help but flash back to the day we searched for Canoe so we could head to the mountains, but we would never see him again. Fortunately, she showed up later and all is well on the pet front.

But as we approached the metro area Sunday Patrick took a turn for the worse. His eye began to bleed bloody tears. The girls were shocked. Patrick was scared. Erin and I were in game mode. We went straight to the emergency department of CHOA. Patrick insisted on being admitted (much like we have seen from Brennan when he knew best what was going on with his body). Shortly thereafter a trickle became a significant flow of blood from the eye. He received blood and platelets and eventually stabilized. IV antibiotics were started because of his low ANC, borderline fever, and obviously inflamed eye. He has improved to the point of being able to be discharged. The eye issue remains somewhat of a mystery explained only by its coincidence with a major golf tournament. He has been NPO all day waiting for an MRI of the orbit, but that was recently cancelled because of equipment unavailability.
We really don’t know what we are doing next to kill Neuroblastoma cells, but we do know that he is probably donor platelet dependent and without many options. We are working on scheduling a MIBG scan to see where we are. I predict a trip to Philadelphia soon. Stay tuned. SRC