Painting the Town Gold
Sam Merkel’s journey with cancer began after a few months of him noticing his knee was hurting. Sam had just graduated from Edwardsville High School and was looking forward to starting college in the fall of 2013.   Sam had an appointment with an orthopedic doctor to get have his knee checked out after the 4th of July weekend.   Unfortunately, he never made it to that appointment.
On the 4th of July, 2013, Sam fell twice because his leg gave out.  The second time it happened he heard a pop and he fell to his knees. Sam and his parents went to Urgent Care where they did many x rays. When the doctor looked over the x rays he knew it wasn’t good.  A mass showed up above his left knee and that is where his bone broke. Sam and his family were sent to St Louis Children’s Hospital.
Sam was checked out by many doctors and was admitted. He was in a lot of pain. They put a cast on his leg from his ankle up to his groin.  He had a very hard night.  The next day they did an MRI, CAT Scan, PET Scan, and Chest-X rays. His worst fears where confirmed.  Sam had Osteosarcoma, Pediatric Bone Cancer.
Sam underwent 4 months of in-patient chemotherapy followed by reconstructive surgery on his leg.  The doctors replaced 8 inches of his femur and knee with a prosthesis.  He then had another 4 months of chemotherapy and a lot of physical therapy.  Sam finished his treatments in April 2014.  He spent nine long months in the hospital with very little breaks to be at home.
Sam had just started to live a normal life when he had excruciating pain in his knee.  After a trip to the E.R. he found out that he had a staph infection in his leg.  His blood pressure dropped dangerously low and he wound up in the PICU.  After several days on strong IV antibiotics the Orthopedic Oncologist had to open up Sam’s leg again and remove his prosthetic.  He cleaned the infection out of his leg and sewed him back up.  He had to continue to take antibiotics until January of 2015 and start physical therapy again.
Sam was able to enjoy the Summer of 2014 and enrolled in college which had been put off for a year.  He started college in the Fall and was enjoying life as a normal 19 year old.  One day in October, 2014. He called his doctor from school because he was experiencing facial numbness. His doctor asked him to come to the hospital.  When he arrived at St Louis Children’s Hospital he received an MRI.  It was confirmed that the cancer was back.  The MRI showed a lesion in his skull.  The doctors at St. Louis Children’s had never see a patient have Osteosarcoma spread to the skull so they thought it was going to be another type of cancer.  Sam had a craniotomy in November of 2014. The doctors did not receive the results they were hoping for. The tumor wasn’t able to be removed.  They were able to biopsy it. The pathology reports confirmed that the new tumor was also Osteosarcoma.  It had metastasized to his skull.  Sam underwent Gamma Knife Radiation at Siteman Cancer Center and received more chemotherapy. When it was time for Sam to have his scheduled scans he was let down one more time.  Sam’s cancer had metastasized yet another time to his lungs.
Sam’s chemotherapy wasn’t working and he was running out of options.  Sam wrote a bucket list of things he was wanting to do.  He was realistic.  He knew that he most likely he didn’t have much time.  He was able to take a fun trip.
When he returned home he found out that he was lucky enough to be entered into a trial at Siteman Cancer Center.  It was one spot out of 80.  People from all over the United States with Sarcoma were hoping to get into this trial. It was an Immuno therapy trial.  The latest advancements in Cancer therapy.  This was a very different treatment.  Sam received this treatment outpatient every 3 weeks.  It had showed promising results in Melanoma and Breast Cancer patients. He and his family felt very blessed and hopeful.  Sam tolerated the Immuno therapy well.  He didn’t loose his hair, he was only a bit nauseous for a couple of days and was a little tired.  But for the most part he was able to go on with life.  He attended school, ate his favorite meals, and hung out with his friends.   With this treatment a person received scans and lung biopsy every 3 months.  Sams first scans had showed his tumors had grown but the doctors said that this was normal.  The tumors often grew before they shrunk.  Sam was patiently waiting for the next scans.  He prayed that the Immuno therapy was working.
While Sam was receiving the Immuno therapy he noticed a bump on his knee in September.  It would bleed profusely.  He would try to keep band-aids on it but they would fall off and then he would have blood dripping down his leg. It was such a nuisance.  He asked if it could be removed.  So they sent him back to the Ortho-Oncologist, Dr. McDonald.  Dr. McDonald had never seen anything like it but agreed to remove it.
The day of the surgery the doctor said it was removed and sent to pathology. He wasn’t concerned.
The following week when Sam went for his follow up appointment 4 doctors walked into the room.  Sam knew there was something wrong. The doctor said he was sorry to have to tell him that the skin lesion was Osteosarcoma.  Sam started crying uncontrollably.  At that time he knew deep in his heart that the treatment probably wasn’t working if the cancer was still growing.  Sam had to be taken out in a wheelchair because he was so upset.
Sam continued to try and do all the things he loved.  He went to school, worked at the movie theater, played air-soft, volunteered with Painting the Town Gold, went out with his friends, and ate all of his favorite food.  No one would have been able to tell that he had cancer. He pushed himself.
In October Sam received his 3 month scans again.  The lung tumors had grown more and he was removed from the trial.  He knew it was the end.  Sam was sent back to St. Louis Children’s Hospital and was put in touch with the palliative care team.  Sam continued to push himself.  He was still going to school and work.  He kept getting sicker.  He was losing weight, sleeping more, and coughing, and was out of breath.  By the middle of November Sam reluctantly dropped his classes and quit his job.  He was so sad.  He just wanted to be healthy and normal.  Sam had to receive oxygen and breathing treatments.  Eventually more pain medicine.  He was struggling through the holidays.  He tried to have a good time with everyone. Their last family Christmas get together was on December 27th.  Sam passed away December 29th after being taken to St. Louis Children’s Hospital for pain management.
Sam’s family is devastated that they had to watch Sam go through so much and then lose his life.   We all miss him.  He was a sweet kid.  He loved to laugh and have a good time.  He had a huge smile.  We all learned so much from Sam.  How to live our lives more fully, to love more and complain less.  To enjoy all the little things that life has to offer.
Sam’s family is trying to move on without him.  They know Sam would want this.  He enjoyed life too much.  He wouldn’t want anyone to be sad. Sam’s family said there isn’t a day that goes by that they don’t think of him.  they are dedicated to being involved with Childhood Cancer Awareness.  They want better treatments and someday a cure for Childhood Cancer.   No one should have to go through what Sam did for 2 1/2 years!  He would want us to help other kids.