Samuel Jacob Johnson

January 19, 2000 – November 5, 2003 

About Sam’s Cancer

Samuel was diagnosed with medulloblastoma in September 2000, when he was 8 months old. He had surgery, multiple chemotherapy trials and radiation over the course of three years.   He endured constant treatments, testing and procedures, and all their accompanying side effects, that would drive any adult to the brink without tears or complaint.  During his treatment, he experienced two long tumor-free periods that seemed to defy the odds.    The first two times the tumor returned, it was in the same place as the original tumor.  It had never traveled or spread, which is unusual for medulloblastoma.   However, in July 2003, after nearly 3 years of containment, the cancer  returned in a new location and, in spite of  two experimental drug trials, began to spread rapidly throughout Sam’s brain and into his spine.  Sam was able to start preschool and enjoy his wish of going to Disney World in September 2003 with no symptoms.  In mid-October, Sam had a nasty bout with pneumonia that lasted for over two weeks.  At the same time, he began to show problems with balance and leg weakness.  By Halloween, he stopped moving his legs, and on November 2^nd, he seemed to be starting to having some pain.  An MRI on November 4^th confirmed that Sam’s cancer was terminal.  He was referred to hospice and given several prescriptions to address the increasingly terrible pain and other symptoms he was expected to experience in the coming weeks as he faded away.  Well, Sam would have none of that.  In his usual willful, determined, defy-the-odds way, Sam died just after 6:00 am on November 5^th, quickly and quietly, at home with his family.

 

About Sam – The Important Stuff

Sam was a beautiful boy with twinkling dark brown eyes, wild spiky hair, and a smile that could light up any room and steal anybody’s heart.    Sam had multiple developmental delays because of his disease, but God blessed him with the spirit and determination to always move forward and carry on with joy and courage, even until his last breath.  Sam either never knew or never cared, or maybe both, that he was handicapped.   He amazed doctors and therapists with his strength and ability to grow and develop from a frail, helpless infant to a vibrant, active preschool student.   He always made his needs, wants and feelings known, and learned how to enjoy every day of his life.  If he wanted something, it was practically impossible to keep him from getting it.  Sam loved music more than anyone, in spite of a hearing impairment that developed when he was one year old.  Whenever he listened to his favorite songs, he would smile, wave his arms and legs and clap his hands.  Sometimes, he would grace his “audience” by singing along with his sweet voice.  He was a big fan of The Wiggles, Veggie Tales, Bear in the Big Blue House and Elmo, and could watch TV for hours if you played his favorite videos.  If someone wanted to watch something else, Sam would either yell until they turned it off, or reach for the power button on the TV and handle it himself.   He loved eating, but was very specific about what he liked – Krispy Kreme donuts, Double Stuff Oreos, bananas, mac and cheese, grilled cheese, peanut butter and milk.  His favorite toys were all musical ones, of course, with the number one choice being a drum that lit up and played several different sounds.  He was definitely his Mama's boy, telling anyone who tried to take him from her “Bye-bye!” as soon as they came in the door.   He loved holding onto, and often pulling, people’s hair – especially Mama’s.  He loved going out – to restaurants, the park, the mall, the grocery store, church – anywhere with sights and sounds.

Sam has two wonderful sisters – Rachel and Carly.  They were his playmates, best friends, and little mamas.  They loved to make him smile or laugh, and always took care of him. They always looked past everything going on with Sam and loved him completely. They still do.  They wanted to take care of him and help him. They changed his diapers, cleaned him up if he got sick, fed him, bathed him, dressed him, and even helped with his IV catheter and feeding tube. They got involved in his therapy - watching what each therapist worked on with him, then doing it themselves. They would watch what Sam wanted to watch on TV, even if it meant missing a favorite show, just to see him smile. If either of them woke up before me, the first thing they would do is go into Sam's room and get in bed with him. If there was one cookie left, Sam got it. They would play patty cake or peek-a-boo for an hour straight if Sam wanted them to.  They will both tell you that he is the best little brother in the world and that now he is God's best angel.

Sam’s family and friends feel that the world is much emptier now that he is gone, but they know they were greatly blessed to have had him in their lives.  They would not trade their too brief time with him for 100 years with anyone else.

RULES FOR LIVING ACCORDING TO SAMUEL J.

BE HAPPY
Sam lived each day of his life with joy and purpose. It didn’t matter how sick he felt, where he was, or what limitations he faced, he found a way to smile and enjoy what he did have every single day. When he smiled, he smiled from head to toe!

MAKE THE MOST OF WHAT YOU HAVE
Sam never felt sorry for himself or coveted anything that he lacked. He could not stand up and dance on his own, but watching others dance brought him joy rather than envy. He also had his own way of sitting and “dancing” that pleased him just as well. When his body started to fail him in the end, he accepted it without complaint and found new ways to enjoy his life.

LOVE SOMEONE
Sam’s mama is lucky enough to have been the main object of his affection.  Anyone who knew Sam saw how that love gave him joy, comfort and peace in his life.

BE HONEST AND TRUE TO YOURSELF
Sam never left anyone wondering where he stood about anything. His ways of communicating could be as subtle as a look in his eyes or as dramatic as sweeping his dinner plate onto the floor. He never left any doubt, though, about what he was thinking. The world’s pressures never led him to put on the masks so many of us feel pressure to put on to be accepted. He always did things his way – no compromising!

HAVE COURAGE
Fear wasn’t something Sam ever entertained. To him it would have seemed a pointless waste of energy. He faced every trial head on, calmly and patiently, without worry or anxiety.

BE STRONG
Sam kept going, no matter what.  He never gave up. People often said that his family saw him through all of his struggles, but the reality is that he saw them through. His perseverance lifted everyone else up and kept them going. The weakness and emptiness his family and friends feel without him is evidence of that.

NEVER GIVE UP
Sam always found a way to get what he wanted or needed. He always kept going, moving forward, no matter what obstacles came his way.   It seemed that he faced the end of every day feeling like he had accomplished everything he wanted to do.

LIVE
Sam never wasted time – everything he did had a purpose. He never let cancer defeat him or change who he was. Even when his physical body was diminished, his true self - his spirit and soul - prevailed to the end. He refused to allow cancer to steal that from him – he simply went Home- quickly and quietly- on his terms. No wasted time.