Skating on Thin Ice

It's Sunday evening and I'm writing from Matthew's bedside. He's received two days of chemo so far. Tonight is the third and last course. He'll then have two days off treatment before receiving his stem cell transplant on Wednesday. He's feeling tired, has a slight fever, and is having some stomach discomfort, but otherwise seems to be handling the chemo pretty easily. Today he felt well enough to have visitors, although he's clearly feeling pretty knocked out.

It's been relatively quiet since we arrived at the hospital, but we're still reliving memories of Friday, a day so intense, so surreal, as not to be believed. We woke up that morning with understandable anxiety knowing that Matthew was headed back to the hospital for major treatment, but we had no idea what lay in store. Challenge #1 was finding Jon's car dead in the driveway. We abandoned our plan of taking two cars to Hopkins, enlisted Lisa S.'s help to get Jon's car towed to the garage, loaded up my van with the considerable amount of luggage, food, room furnishings, etc., we'd packed, and headed off to the hospital.

Challenge #2: All week long, we'd been awaiting a decision from our health insurance company, Unicare, to approve Matthew's treatment. At the same time, to avoid any possible delay in treatment, Jon had begun talking with the hospital to come up a private pay agreement in the event the insurance decision did not come through on time. The hospital took an extremely tough position and would not agree to reasonable terms. Jon's law firm (the good guys in this story) generously stepped forward to serve as our guarantor and negotiate an agreement on our behalf. Thursday night, things reached a climax, as Unicare (the other good guys in this story) approved the initial transplant, while the hospital's legal department (the bad guys in this story) refused to accept the approval and continued to press for extraordinary financial concessions. On Friday morning, as we were driving to the hospital, the drama continued to play out as the hospital's legal counsel vowed to bar Matthew from admission unless we agreed to their outrageous terms.

Challenge #3: Halfway to Baltimore, with Jon in the midst of intense strategy discussions with his firm and the insurance company, my van (an Odyssey - interesting literary significance) started to overheat, forcing us to pull over to the side of I-95. We inched down the shoulder of the highway heading for the nearest exit. Miraculously just off the exit, we found a small auto repair shop where the mechanic diagnosed the problem (the thermostat) and promised to fix it by end of day. We tried calling various people (including the state and county police) to come rescue us, eventually reaching Sabra G. So, there we were, after all we've been through in the past year, with two cars broken down on the same day, in an auto repair lot in Elkridge, MD, en route to the hospital for a bone marrow transplant, wondering if Hopkins would even admit us - with so many calamities happening at once and, as one friend articulated, the sense that the breakdown in our outer world was reflecting the chaos of our inner world - when Matthew let out a cry of delight. He had spotted a patch of ice just outside the car (it had sleeted the night before) and then, in the next moment, he was outside on the ice doing pirouettes and Michael Jackson moonwalk moves and mugging irresistible faces. He was skating on thin ice - but he sure was enjoying himself.

Although we felt like emotional wrecks, things actually began to look up from that point. Sabra rescued us from Elkridge and we transferred all our gear into her car. We arrived at the hospital (and, to our relief, were not stopped at the door), where our doctors greeted us warmly. Later in the afternoon, Unicare called to tell us they were so outraged by Hopkins' behavior that they were making an executive override decision to approve ALL of Matthew's treatment. Matthew was admitted to the hospital and started to receive chemotherapy later that evening. Jon stayed with Matthew; Sabra drove me home via Elkridge, where I picked up our repaired van, and drove home to pick up Danny. The rest of the weekend has been fairly uneventful and Matthew is doing ok.

The question is, what next?