September is Pediatric Cancer Awareness Month. At PCFLV, we are committed to spreading the GOLD all year long. However, in September, we truly make it our mission. 30 Days, 30 Stories celebrates the children we know and love and the brave battles they fight and have fought, with their families by their sides. In celebrating these beautiful children and their stories, we hope to inspire you to join us in our mission to SPREAD THE GOLD in September and all year long!
I thought I was beginning the start of what I believed was going to be "the perfect life!" I was happily re-married with four children...two girls and a boy from my first marriage and a five month-old boy from my current marriage.
My three year-old son, Matthew, had been to the pediatrician's office several times for an unexplained low grade fever, leg pain, and tan-colored stools. Each visit I was told, "It's a virus" or "he has growing pains." I brought this to his doctor's attention many times. One day I called her and demanded she have his blood cultured and give me a name of this damn virus that my son kept getting. The doctor didn't seem to have much tolerance for me at the time. She reminded me that she had MD (Medical Doctor) after her name, and I reminded her that I have MOM after mine. I was 28 years-old with four children, and she didn't have any.
Finally, after a lot of persistence, she had his blood looked at. She called me weeks later and said, "There is inflammation in his body. It may be from the needle itself. His blood counts aren't that unusual for a child." I'm thinking, "what the hell does that mean?" I made another appointment a week later and asked for a different doctor in the practice. When we were at that visit, this doctor did something the other doctor NEVER did...she felt his abdomen. I could see on her face that she was concerned about something. That doctor sent me to a Pediatric Rheumatologist. I'd explained to her that I had been taking him to the doctor for months...he even went 8 times in one month.
I was sent to Hackensack Medical University on September 19, 2001 for Matthew to get an MRI. That's the day I was given the news...given the words that would cut deeper than any knife ever could! The Radiologist called me into another room as my husband waited with Matthew. She had tears in her eyes as she said to me, "I'm sorry, but we believe your son has Neuroblastoma, a cancer that affects children. The mass is large!" I dropped to my knees. I felt my heart racing and I screamed and sobbed from the inside out. How could this be happening?
Those words hurt just as much today as they did 17 years ago. I could never have imagined what would come next. My first visit to the Pediatric Oncology Clinic at Children's Hospital of Philadelphia was so scary. I really thought I was not supposed to be there. How could I explain to my beautiful little boy why all of these children there were bald, missing arms, legs and eyes? Matthew went through several surgeries, chemotherapy, bone marrow aspirations, blood transfusions, radiation, and two stem-cell transplants...which meant that he could not leave his room for 30 days each time. His life as he knew it would be forever changed, and so would mine.
Spending holidays and birthdays in a hospital wasn't the plan. Neither was having him learn to ride a bike in a hospital. I had enough of him not being able to be a child. I brought a bike with training wheels so he could ride the halls of the hospital on that rather than in a wheel chair or bed. It would be the first and last time he rode that Spider-Man bike.
When you realize this will be your reality, you're overwhelmed and you become a very different person. Spending 2 years in and out of treatments, you begin to question why? I'll never have answers. On the morning of January 14, 2001, my beautiful and perfect little boy would take his last breath, I remember the nurse coming in and out of the room, the sounds of the heart monitor as his heart slowed down, he was grabbing at his chest, and I would rub his head and kiss him, being careful not to let him see me beginning to crack. His body went limp in my arms, I looked at his father and thought, we were here to welcome him into the world, and we are here as he is leaving it. I remember holding his body for hours until I was forced to let go of him.
To have to go home and tell his siblings why he didn't come home with us was heartbreaking. Planning a funeral, picking out a casket and clothes for him to be buried in, picking photos for a memorial video...none of this was supposed to happen, but it did.
Time DOES NOT HEAL ALL WOUNDS!!! I always hate when people say that because it truly doesn't. Time only allows me a different way of dealing with it each and every day. You're never "healed" when you're holding your child as they take their last breath, NEVER.
I am missing his laugh, his smile, his demand for bacon at 2 am. I miss his giggle. I miss him snuggling with me. I miss everything about Matthew. Some days are harder than others. Losing him shaped me into a different person, I've learned to pick and choose my battles wisely. I've learned to truly appreciate the small things in life. I've learned that I have no tolerance for people who have everything but yet choose to complain about the small things (like materialistic kind of things).
I put a smile on my face, because that's what people want to see. They don't want to see me crying uncontrollably as I hold onto the baby blanket that I brought him home in, the plaster hands of his that were made from his lifeless body that I keep in a curio cabinet, because I'm afraid they will break, or the boxes of his toys and clothes that catch my tears.
So here we are, weeks away from what would be his 21st birthday on October 16th. I still wonder what sport he'd be playing? Would he have loved school? Who would be his first love? So many questions. But I'll never know those answers. Why does everyone forget about Pediatric Cancer Awareness month? Why can't I find anything gold for awareness in stores? Why don't schools and pro football teams go gold? Why isn't there a cure for cancer yet? Don't wait till it happens to you to become aware. You can't get cancer from spreading awareness, but someone could be helped because you did.
-written by Matthew's mom, Christina