February 4th - 18th, 2006

A parent’s worst nightmare is picking up the phone  and hearing one of two voices, a policeman or a doctor. Neither one can be good and in our case, the person on the other end of the phone was an emergency room doctor from Spears Hospital, located in New Hampshire. He called to inform us that our son Michael was brought into the emergency room with a snowboarding injury. His continued to tell us that Michael may have shattered a vertebrae in his back and they are airlifting him from their hospital to Massachusetts General Hospital, located in Boston, MA. My wife Kim and I, gathered the family in the car and started driving the 5+ hours to Boston, never realizing what we were about to walk into when we arrived at the hospital. The words paralyzed and paraplegic were so far from our vocabulary, that I expected Michael to be fitted with a back brace or cast and released from the hospital for the long ride home. When we arrived at the hospital, we were herded thru the busy emergency room, into a family counseling room.

            Having spent many hours in hospital emergency rooms, due to my four active children, I was very familiar with the procedure of visiting an injured child. One of the procedures was never having to sit in a “counseling” room, so when we walked thru those doors, I had a bad feeling. Within minutes a trauma unit doctor entered and introduced himself. Within his first 10 words, he uttered something we will never forget, “Your son will never walk again” and as cold as ice, he watched as our family and Michael’s close friend, stood silent in disbelief and then uncontrollable anguish and sadness.  We all thought this was a bad dream and the alarm clock was sure to ring any minute now. But the clock never rang.  Three doctors entered the room, all proclaiming the same diagnosis. Each doctor tried to explain the injury, but at this point, our heads were spinning. I tried reaching for any glimpse of hope regarding the injury and possible past recoveries, but was shot down every step of the way. While we were trying to stay optimistic and hopeful, they continued on their bleak outlook and no hope attitude, something that still bothers me to this day.

            Michael, his brother Eric and Michael’s friend CJ, went to Loon Mountain, New Hampshire for a day of snowboarding. Michael’s first run of the day resulted in him over shooting a large jump and landing on his back, shattering his 10^th vertebrae.  When we first saw Michael, we were relieved he was alive. In addition to his back, he also fractured several ribs and suffered a broken collarbone. When we walked into Michael’s room, thru all the pain, discomfort, wires and tubes, he turned his head and cracked his trademark smile and uttered his favorite words “what up”. It broke the ice and tension that everyone was feeling, but he wanted to make sure that we knew he was all right and not to worry. The first 36 hours for Michael, he was heavily sedated with morphine to ease the pain. During that time, hundreds of frantic phone calls were made and received, informing our family and friends of the accident.  My sister in-law and brother in-law, Joann and Cas, immediately jumped in their car and took the 6 hour ride to Boston, arriving Sunday morning. This was to be the beginning of 12 straight weeks with Michael having his aunt and uncle at his side every day, showing him that he was not in this fight alone and that we all loved him very much. Michael’s aunt, Denise, cut short her vacation and flew on the next flight out of the Caribbean’s to be by Michael’s side. Within the first 48 hours, Kim’s aunt Betty and cousin Lori also had taken the trip from their home and now our family had taken over the large waiting room at the end of Michael’s floor. During the middle of the night, Michael’s uncle, Sahin, arrived at the hospital and went to Michael’s room, we he stayed with Michael thru the night, not realizing that visiting hours were over and we were all down the hall in the family waiting room sleeping.

             A decision was made not to rush the necessary surgery required to stabilize Michael’s spine, since it was late Saturday night and the “A” team of doctors were not on site. We wanted the best group of doctors for Michael, so we decided to wait until the next morning, Sunday, when the hospital could round up the necessary specialist.  The surgery lasted 6 hours, in which they inserted several rods and pins into his vertebrae, and also fussed a piece of bone, extracted from his hip, between his 9^th & 11^th vertebrae, in an effort to mend the damaged spinal column.  Even though the surgery was a success, this would not guarantee to reverse Michael’s inability to move his legs. This was just to repair the broken bones and to realign the spinal column. The good news was that when the doctors had the spinal column exposed, they did not detect any tears, leaving hope that the cord was compressed and swelling had occurred resulting in the paralysis. The news boosted our hopes for a possible recovery, how ever so slight. It was the only thing we could hold onto at the time.

As the frantic calls continued, my son Kyle approached me with some information that was relayed to him from the parents of his friend, Jackie. I called Jackie’s mom, Sue, and was given some very interesting information. They had a friend who also had a family member suffer a spinal cord injury. She recommended I call Fran Brown, the exucutive director of the Alan T. Brown Spinal Cord  foundation. Fran was wonderful in pointing us in the right direction and supplying us with phone numbers of people to call. From the phone calls to follow, I was to learn of a clinical trial, based out of Craig Hospital in Denver, called ProCord, an FDA approved spinal cord injury experimental procedure. Sue mentioned that this procedure had to be administered within 14 days of the accident, so time was of the essence. I immediately went to the library at Massachusetts general and searched the Internet. Once I found their website, the information regarding the procedures and the theory behind it was outlined.

For someone who has trouble reading the label of Excedrin PM, I knew this was way over my head, especially in the mental shape I was in. Having a sister-in-law who has 25 years of nursing experience is sure a blessing in disguise when it comes to deciphering medical mumbo jumbo, as we used Joann’s vast knowledge to guide us through the medical lingo and confusing terms. The decision to try to get Michael accepted into this study was unanimous, as we figured this was the best possible chance for him to improve his odds of recovering from this injury. Once the decision was made, it was then a race against time, as several preliminary tests and procedures had to be performed before the operation could occur, all within 14 days. At first, this did not seem to be a problem, as we were only into day 3 and the consensus was that we had plenty of time. No need to worry, right? Wrong. Every day after that proved to be a roller coaster ride, as we planned and orchrastraed   Michael’s every move. Several tests and procedures had to be performed and the results had to be sent to Craig Hospital in Denver for approval and evaluation. Kim’s sister Denise, was tenacious in following up with each and every lab and doctor who had their hands in this streamlined operation. We could not afford one speed bump in the road, if we were to make the 14-day deadline and all parties had to do their job in a timely manner.

Michael’s discharge from MGH was under way, as he left via ambulance on Thursday, February 9^th for the 5-hour ride to New Jersey. It was previously decided that we would send Michael to Kessler Rehabilitation Center, located in West Orange NJ. This facility was rated #3 in the country in taking care of spinal cord injuries and was also a participating facility for the ProCord study, so it was a perfect fit. Plus, if this facility was good enough for Superman (Christopher Reeve), we were positive they could handle our own Superman, Mikey Ryan. More tests and MRI’s were ordered when Michael arrived in Kessler and in the following days.

The roller coaster ride we were riding was about to take another turn. Since this was a FDA based clinical trial, there has to be a controlled group involved. These would be patients that were accepted into the program, but who would not have the surgery performed. They would follow up with the same intensive rehabilitation exercise program and be recorded accordingly. In other words, Michael’s participation in the program was about to be decided by the drawing of an envelope, a lottery system.  Each participating facility, was shipped a stack of sealed, numbered envelopes, each containing a note, indicating “Control” or “Participate”. There was a 2-1 ratio of participation vs. controlled. After Michael’s preliminary tests were returned to Kessler, and he was deemed eligible to participate, it was now time to draw the “envelope”.  As you can imagine, the anticipation was overwhelming. Before going into the room, we were trying to come to grips with either outcome. If he was to participate, it will be a blessing in disguise. If he is picked as a control patient, it’s God’s will and there must be a reason for his exclusion and we move forward, as devastating as that would have been. As the envelope was removed from the safe, all eyes were glued to it’s opening. Steve K, who is the Procord Study coordinator, opened the envelope and calmly said “Participate”. It was as we hit the real lottery. All the eyes that were a moment ago glued to the envelope were now filled with tears.  We were now riding on the upside of the rollercoaster, quickly approaching the top of the hill.

Once the announcement was made, everyone scrambled and it looked like a Chinese fire drill. Arrangements were being made immediately for Michael to leave Kessler and be taken to the University Hospital in Newark, NJ. The plan was for Michael to receive the ProCord treatment at the UMDNJ of Newark, under the supervision of Dr. Heary, the director of the spinal cord research department. Michael left Kessler on Wednesday, Feb. 15^th in anticipation of under going the preliminary surgery of having his skin and blood cells harvested. The Procord procedure calls for your own blood and tissues to be used during the operation. As Michael settled in his temporary room, all was a go for him to be wheeled into the operating room for the harvest, however, a last minute temperature check discovered that Michael had spike a temperature of 101.2, resulting in the surgery to be postponed. Realizing that the deadline for the second surgery to occur, the implantation of the cells, was on Saturday, we knew this could jeopardize the whole study. As part of the study protocol, the harvesting of the cells cannot happen within a 24-hour period of a high temperature. Knowing that the harvested cells had to be flown to Atlanta, incubate for 36 hours and then be flown back again, left no room for any further delays. If Michael’s temperature did not recede before midnight, and stay under 101.2 for the following 24 hours, the procedure would be cancelled. As you can imagine, the roller coaster was now plummeting fast.

Kim and I left the hospital that night at 10pm, hoping for the best but thinking the worst. When we left, Michael’s temperature jumped again to 101.9, and the possibility of it falling to below 101.2 before midnight seemed bleak. When we returned early the next morning, we were prepared for the bad news, thinking to ourselves, there is a reason for him not to have the surgery. We wanted to stay positive. We approached the nurse and asked for Michael’s temperature chart readings and we were shocked when we were told his temperature fell below 101 at midnight and has been down ever since. Now we needed to hope it stays down for the next 24 hours, a requirement for the skin & blood harvest. Through out the entire day, Michael’s temperature remains a constant 100 and all seemed to be looking positive for the midnight surgery. But has the night fell, his temperature rose and hovered near the 101 mark. The anticipation of every reading was overwhelming. Finally the last reading of the day, before he was to be wheeled into the operating room, his temperature fell to a wonderful 100-degree mark. The operation was given the green light as Michael was wheeled into the operating room exactly midnight. Behind the scenes, not only were the surgeons doing their thing, but also a Lear jet was waiting on the runway at Teterboro airport in anticipation of receiving the tissue and blood harvest. A medical courier was anxiously waiting outside the operating room to fulfill his part of the mission. As 2:00 am rolled around, the tissue and blood culture was in route to the airport and Michael was waiting in the recovery room. The operation went flawlessly, the only draw back being a seven-inch scar under Michael’s bicep. He thinks its looks cool, go figure. As we attend to Michael, we realize that this ordeal is only half over. The blood and skin culture need to make it to Atlanta, cultivate in a medical laboratory for 36 hours and then be flown back to NJ and administered into Michael’s spine before midnight of February 18^th, Saturday. One can only begin to imagine all the different scenarios that could cause a delay in this whole procedure. What happens if there is bad weather? The courier gets a flat or decides to stop for coffee? What happens if they loose the harvest (They loose my luggage all the time at the airport)? What happens if the pilot calls out sick? Even though the possibilities were endless, it was out of our hands now. We had to stay positive and hope that the cultivated blood tissue would be returned by 9:00pm Saturday night.

As we left the hospital 4am, we realized the days started turning into nights and the nights into days. The emotional and physical rollercoaster of this whole ordeal was starting to take its toll. Another operation? What happens if something goes wrong? Are we doing the right thing? All these emotions were racing through my mind as we drove home to get a few hours of sleep. As we return early the next day, Michael seemed to be in a good mood, but was apprehensive about undergoing a third surgery in 24 hours. Through out the day, we wanted to get updates on the status of the harvested blood and tissue, and to be assured all was proceeding without any complications. The only information we could get was that the package arrived safely and was delivered to the lab, where they already started the incubation process. Knowing that any delay in the process would jeopardize the study, it was very difficult waiting these next 24 hours. The old saying “No news is Good news” was the slogan of the day, we waited patiently.

Michael’s surgery was scheduled for 6:00pm, at which time, Dr. Heary began the delicate task of removing all the previous hardware that was installed in Michael’s back during the first surgery. This was necessary, in order to expose the spinal column. Once the spinal column is exposed, the doctor will inject Michael’s spine with 6 pre-filled and measured needles, each containing the incubated solution of Michael’s blood cells. As the doctors proceeded with the hardware removal, the “package” was in mid-flight and headed for Teterboro airport, located in northern NJ, 10 miles from the hospital. We received word that the airplane had landed and the package is in route to the hospital. At the same time, we were also informed that Michael was doing fine, waiting for his package to arrive. All fingers were crossed in the waiting room, as this was the moment we were working towards for the past 2 weeks. The clock was still ticking, as the solution needed to be injected into Michael before midnight, or else the 14-day protocol would be violated and the study would be cancelled.  Knowing that the first surgery took 6 hours and this one was started at 6:00pm, the midnight deadline was a real concern.

As we did in Boston, we again took over the waiting room. Michael’s aunts, Joann and Denise and Uncle Cas, waited with us during the entire procedure. As 11:00pm approached, we were finally given word that the surgery was a success, and that Michael was given the injection with no complications. A sigh of relief was felt by all, as we pressured the doctors to allow us to see Michael. As you can imagine, midnight on Saturday, was not a popular choice for booking surgeries, so when we entered the OR waiting room, Michael was the only patient in the 16 bed waiting room. For someone who just went through another surgery, one of three in the past 2 weeks, he looked terrific, considering he spent the last 6 hours on his stomach, with his back exposed. We were expecting much more swelling in his facial area, as this is what happened during his first surgery. But he had minimal swelling and was semi groggy, obviously anxious to go to bed and get some sleep. We stayed in the hospital for a couple of more hours, just to be sure Michael was resting comfortably in his room.

 When we left the hospital that night, there was a tremendous weight lifted from our shoulders, as we were relieved that the procedure we spent the last two weeks trying to get done, actually was performed. The logistical nightmare that had to be overcome, involved so many people, every step of the way. It would have never been possible if it weren’t for the help of so many people involved. But we were glad that we were able to give Michael every possible chance for recovery. Having spent the last two weeks searching the Internet for spinal cord injury information, it had become apparent that Michael will be facing a difficult road ahead of him. Any opportunity we have to ease his difficult journey, we feel obligated to at least offer this to him. Unfortunately, Michael’s procedure does not come with a guarantee. There is no 100% in the medical community. Since this was a fairly new clinical trial, the results were still being gathered and were not being released until 12 months after the last patient in the study was enrolled. Expectations from the study was only to improve Michael’s condition from an ASIA A Complete, to an ASIA B or C, which would restore some movement or sensation in his legs. Now the waiting game will begin, as Michael returns to Kessler to begin his physical therapy sessions.