This has been a brutal, heartbreaking, journey. 26 months. Thank God we were never alone. We could have never made it alone. Your cards, emails, gifts, love and prayers ..God's angels among us .so much help, so much encouragement we could have never made it through alone. Our family, our friends, our colleagues and supervisors, even people we don't know, never met all over the world such an outpouring of love. So appreciated, so needed. Brian was so overwhelmed with you that he thought he was disappointing all of you because he was dying. He was so young, so innocent, so selfless.
Brian's room at the hospital was hardly ever a dull or sad place. Yes, there were very disappointing, unspeakably painful, gut-wrenching moments. But we had decided to give the disease only what it could take from Brian and give it nothing for free, no fear, no depression, no loss of faith. I kept paraphrasing Gandolf from the Fellowship of the Ring; "We can not choose the times we live in only what we do with the time we are given." OK, crawl in a hole during chemo .but, live it up when it's over.
So, what did we do with our time apart from medical tests and chemotherapy? We could fill an entire day with a movie like the Pink Panther, Chris Farley, Jackie Chan. Sometimes, in the middle of the night, we hung out in the vending machine room and discussed the various sandwiches as they rotated in the machine, the order in which we would rank them for visual appeal, taste, quality of ingredients, and which drink would go best with which sandwich. I remember we took hours developing something we called "Brian's Punch", a concoction of orange juice and either Sprite or Squirt. We finally decided that 1/3 OJ and 2/3 Squirt was the best formula. We also decided that the drinks must be cold to begin with because melted ice would compromise their favors and change the mixture proportions. We joked about the side effects of chemotherapy and worked and played around them. Over some 88 chemotherapies, we developed the most effective anti-nausea meds staying away from steroids, that caused a personality change in him. Steroids caused him to experience a deep, embarrassing depression, but I told the doctors and nurses not to use them because under their effect, he was transformed into Elvis. We either used the hospital's computer or our own laptop to keep Brian connected to his friends on the Internet. And, of course, we had "Cardtime." He lay on his back with his eyes closed, resting, and we read the cards, letters, and Emails you sent him. Of course, there were some cards that he insisted on reading himself before allowing us to see their contents. (I think it was a lingering form of adolescent censorship.) It wasn't a happy place, in the sense we normally think of happiness, but it was far from depressing. When there was work to do, we did it. When the work was done, we played.
As a baby, Brian was an enthusiastic nurser. Later, we blamed Dawn for his passion for Italian food, explaining that it was because she had a spaghetti dinner just before delivering him that he confused mother's milk with marinera sauce. We also told him that it was the sauce that caused his hair to be so red. But, he loved his red hair, one of the few physical attributes he loved about himself especially when the ladies cooed in admiration and envy.
He enjoyed sleeping all day and playing most of every night. While it was very frustrating for his mom, it was delightful for me. I actually enjoyed getting up at 4am to hold him, singing any number of arrangements of "HE'S GOT THE WHOLE WORLD IN HIS HAND." Brian loved the attention, providing smiles of encouragement for ever-more ridiculous treatments of the old spiritual. Some nights, the two insomniacs sat on the kitchen floor with just the stove light on and had cookies and milk. I guess this was an early form of male bonding.
During his first year of life, his mother reluctantly returned to work, permitting his care to rest in the loving hands of his Grammy. Brian's nursing schedule remained unbroken however, enjoying daily lunches at his mother's breast in a secluded space at her school. Dawn would eat with one hand and hold Brian in the other.
Brian was a true romantic. He loved stories about good overcoming evil and since he always wanted to be the good guy, it was my job to be the evil one until the arrival of his baby brother. This relationship between the two boys was perfect from the beginning. Brian, the leader, Knight in shinning armor, and Jamin, his squire and part time villain. It was easy for Brian to defeat his brother, the diapers slowed him down and he had a considerably shorter arm reach. It wasn't until Jamin began to grow into a scraping toddler, and for his age, a formidable game player, that Brian pulled me aside to ask the timeless question of all older siblings "Can we take him back to the hospital now?"
People outside our family and friends think of Brian as shy. It's true, he was never the first one in the pool. Well, once he was. I can remember challenging him to see who could change and be in the Park Hills Country Club pool first. (He behind one curtain and me behind the next.) I thought I was way out in front, but when I pulled back his curtain he was gone and on the white, painted, wooden plank lay his clothes and his bathing suit. I grabbed his clothes and ran out the door just in time to hear one mother say to the other, "Mildred, did you see what I just saw." As I reached the edge of the water, there was Brian, standing in the center of the pool in his all-together with his hands raised in victory.
Two months ago, when he was hospitalized for an anal fistula in the door, making their daily rounds, came Dr. Shaw with his entourage, four residents, one fellow, Brian's nurse, her aid, and the head nurse of the unit. Dr. Shaw apologized for asking Brian to turn over on his stomach to reveal and evaluate his sore bottom. I was sitting beside him and could see Brian's face. They thought he was crying from embarrassment, I could see he was struggling to keep from laughing. Dr. Shaw continued, " It can't be easy showing your bottom to a room full of doctors and staff." And then, Dr. Shaw paused. "But of course," He said, "it depends on how you think of it. You could be mooning our entire daytime staff."
By the time he was in chemotherapy, Brian hated his body. It was difficult for him to get it to do what he wanted it to do. When he saw the MRI of the soft tissue tumor that had grown out of his swollen, cancerous pelvic bone he said he believed his body was trying to kill him. "You can cut me in half," he said, "just let me live."
Brian loved music, especially Miles Davis and later John Coltrane .he identified with the frustration and pain in Coltrane's music and made "A Love Supreme" his anthem. He loved good movies and video games. He loved Marlin Brando in the Godfather and we rented several more Brando films including On the Waterfront with the musical score written by Leonard Bernstein. Brian couldn't wait to get his chemotherapy over so he could move to the University Park campus at Penn State to get his hands on their video and computer equipment.
If Brian was shy in the company of males, he was petrified to speak to girls. He complained that it seemed so easy for all the other boys, but he just couldn't collect himself to say much of anything to the fairer gender. It seemed like every gesture backfired with embarrassment. A few times, he mustered his courage to express the bewildering feelings he had for girls. During one Valentine's Day, he flatly refused to give any girl a valentine in person but agreed to slip only one into the locker of Julie Houseman when she wasn't looking.
Later in high school he discovered that girls can be great friends and began to open up to them and enjoy several strong boy/girl relationships. In fact, Brian was able to attend his senior prom with long time friend Melissa Hunter (who wore the dress of the year.) They had a great time and kept in contact with each other until near the end of his life. With the help of her mother Dottie, Melissa was able to visit Brian in January at Children's Hospital. (Many of you know that Brian is extremely near sided, so when friends came to visit, he wouldn't always put on his glasses. He would lay on his back and talk, snooze, or sleep depending on the visitor, conversation, etc ) Suddenly, in through the door came Melissa and her mother for a visit before she flew off to Hawaii to dance for the Pro Bowl half-time show. After scrambling to cover himself with a sheet, the first thing out of Brian's mouth was, "Dad, hand me my glasses." It was a great visit, even though he was heavily sedated, he sat up and talked for three hours.
It is my honor to be Brian's dad. I considered it a blessing to have helped Brian through to the end of his life. During over 100 or so trips to Pittsburgh, countless nights in the hospital, over 26 months we listened to hours and hours of music, watched Mario Betali on the food channel, discussed all manner of issues, and I was privileged to watch my boy grow into a courageous, noble, human being, a real man.
In his last days, it was his body that failed him; it was never his spirit or his will to fight. The doctors simply refused to continue to treat him even though he insisted on trying experimental drugs. He had very little bone marrow left to keep him alive, his blood pressure was getting lower and lower, his kidneys were failing. I confess that I had resigned myself to throwing in the towel and, to use a phrase Brian hated, "keep him comfortable" for whatever time was remaining. But, Brian and his mother wanted no part of anything resembling a status quo. Mothers are like that. They never give up on their children. There is something in the nature of the bond that never gives up hope and fights like hell for all their children. And Brian has the most determined, absolutely devoted, unretreating, ever- hopeful mother, who never gave up, never. Brian wasn't coming home to die. He was coming home to try alternative medicines. To the end, to his last breath, Brian fought to live. He said that he would never quit fighting until it was over and he kept his word.
Well, my brave son, I'm here to tell you it is still not over. We, your family and friends, will take up your flag. We will face down this cancer and work toward the day when no young man or woman will face death as a result of Ewing's Sarcoma. It is not over. We will raise awareness in the pediatric medical community to diagnose adolescent bone cancers earlier; we will support research that will unlock the cellular code of tumors to destroy every last cancer cell. It is not over, Brian.
We will bring hope and encouragement to your follow bone cancer fighters, Scott, Sarah, Jacob, Danika, Blake, Joshua, Susan, Abdula, Tulous, Jeffrey, David, and the staff of 8 North who, with great compassion and determination, help their daily struggle. It is not over. Brian, big guy, we will make meaning out of your suffering and your death. We will confront this monster with our love for you and all of the other cancer patients who are forced to look into its darkness. This is not the end, my boy.
This is not an indifferent crowd in these seats; they are your friends and family. They have prayed for you, cried for you, loved you, and they are not ready to quit either. Ignited by your unyielding fight, inspired by your unwavering faith, we will join hearts and hands to bring an end to this pernicious and evil disease of young adults. And when we do, there will be no more adolescent bone cancer, no more suffering, no more chemotherapy, no more amputations. We will have found meaning and purpose from your death and benefit the lives of young people living and yet to be born. Brian, you are not only our child, but the child or brother of everyone here. Your courage, determination, and faith lives on in us because of your example. The medicines on the horizon are hopeful. It is only our indifference that we have to fear. With the help of God and your angels here among us, we will convert this tragedy into victory and look back at this moment as the beginning of your legacy, not the end of your life. So, rest easy Brian, we'll take it from here.