Comments Off on Just Goggle It – the internet is it friend or foe?
The internet – our best friend or worst enemy?
by Les Friedman, Mikey’s dad
“Just Google it!” It’s part of our everyday language but the truth is, the internet can be our best friend or our worst enemy particularly when it comes to medical information.
Pediatric cancer is like a finger print – every cancer is different and every child reacts differently to treatment. What you read on the internet may be totally wrong for your child’s situation.
First of all, don’t believe everything that you read online. While there is a significant amount of health-related information on the internet, the accuracy of the information is erratic. So many facts can be wrong on the internet that you can get lost in the wrong. A lot of information is outdated, rife with inaccuracies or not applicable. Acting on inaccurate, outdated or irrelevant information can prove hazardous to our well-being, potentially posing a significant detrimental impact on our health.
My advice? Stay off the internet for medical information unless it’s from a reliable source but definitely jump on the internet to find support – search for local support groups, parent blogs, parent resources such as CancerCare and The Truth 365 or online resources at the hospital where your child is being treated. CaringBridge is a very strong and reliable personal website which has all the tools you need to keep your family and friends updated during a difficult time.
Michael wrote this piece when he was initially refused entry into the National Honor Society. He was told his grades were certainly good enough, but he lacked the necessary community service needed to be accepted. In true Mikey fashion he fought for what he believed in.
Is the value of community service measured in time or in effect? Is leadership the governing of people during an event or helping those in need, inspiring them to follow your lead? Through my experiences, I have concluded that for both questions, the answer is the latter. I may be unable to fill out the sheets of community service and of leadership positions I’ve held in high school. But I am at no loss of inspiring others to follow my lead and providing an invaluable service to the community.
Facing the Edge of Death and Back
In the middle of my freshmen year of high school, I was diagnosed with an extremely rare and radically aggressive soft tissue sarcoma. A cancer known as Desmoplastic Small Round Cell Tumor, or DSRCT. A cancer whose prognosis is termed “grim” by experts in the field. In fact, the number of documented long-term survivors can be counted on one hand. I began my chemotherapy regimen. An aggressive cancer requires equally as aggressive treatment. The chemotherapy medicines I received are some of the strongest toxins known to man. After three rounds of high dose cyclophosphamide, doxorubicin, and vincristine, and one round of iphosphamide and etoposide, I was ready for a second surgery. A two-foot scar down the center of my stomach marks the entry of probably the most invasive surgery possible. After seven hours of debulking, two more iphosphamide and etoposide rounds, I was ready for what doctors and nurses have termed “the edge of death and back.” The high dose chemotherapy treatments I received before were about one-twentieth the strength of those I would soon receive. Eight days. Eight days of radical toxins that could kill a human coursed through my veins. Only by implanting stem cells that were extracted from my bone marrow months earlier was survival possible. For the sake of sparing inhumane details, I’ll only say I was released twenty years later. Or was it one month? I cannot tell.
After the stem cell treatment was radiation. Not just normal radiation, but radiation that was spread over a notably wide field, for the diffuse nature of these particular cancer cells makes them impossible to pinpoint. The microscopic disease could be anywhere in the abdominal region. I did not know the worst was yet to come. A couple days before the holidays in December, disaster struck once more. I was diagnosed with V.O.D, Veno Occlusive Disease. Agonizing. Incurable. Highly fatal. The veins carrying oxygen-rich blood to my liver became occluded, choking my liver and damaging it severely. Since there is no cure, survival is left to luck. Either the condition slowly fades away, or it worsens, choking off kidneys, lungs, heart, and brain. A doctor said to my dad, “Despite everything he’s been through, he has never been as sick as he is now.” You never appreciate the functions your liver provides for you until it stops working. Most notable is the fluid buildup in the abdomen that requires draining by a needle over one foot long, long enough to penetrate through every layer of tissue into the peritoneal cavity. Over a month later I was released, but not without a tube in my stomach to continue to drain the fluid.
Cancer is the Answer
My approach to the entire situation has been humor. Believe it or not, I found light in the darkest depths of human circumstance. I was constantly uplifting. I had to be. I had to be me. While other patients lay sick in their beds, I chased family members around with the I.V. pole. I have seen the power of cancer. I saw my step-mom and my mom hug. That is power. And soon a sadly ironic, jokingly unfunny catch phrase emerged: “Cancer is the answer.”