The Benefit Of A Mikey’s Way Gift

Thoughts From a Child Life Specialist

Mikey's Way CartAs the child life specialist for the past 4 years in outpatient oncology, bone marrow transplant and hematology, I have worked with children who clearly benefit from the generosity of Mikey’s Way.  Mikey’s Way has helped kids keep up with school work by providing a laptop, has helped kids isolated because of treatment connect with their friends socially and virtually while hospitalized.  I have witnessed kids swept up by videos and imagine going to far away places they’d like to visit once treatment is over.  Children have used these electronics to play games to help distract them through procedures, to watch streaming movies, to write their journals.  It has been wonderful to talk about the program with a patient and give them the choice of gift to help them through treatment.  Mikey’s Way has made many patients smile, parents astonished at the generosity, and me as a staff member grateful for all of your help.

Sonia Lugo, MS, CCLS, CEIM
Child and Adolescent Oncology and Hematology Center
NewYork-Presbyterian/Columbia University Irving Medical Center

Laptop Helps Noah Stay Connected

Noah with his laptop

Noah LOVES his laptop!

Noah selected a laptop as his Wish List gift.  Here’s what he shared with his mom about his gift:

“Noah said that he was excited to be able to stay connected to his friends at school with Google Hangout. He also figured out how to play Fortnight, a popular game that he plays with his friends.” Noah’s Mom

Click here to learn more about Mikey’s Way and the kids we help.

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 A lot of information is outdated, rife with inaccuracies or not applicable. Acting on inaccurate, outdated or irrelevant information can prove hazardous to our well-being, potentially posing a significant detrimental impact on our health.

While the accuracy of medical information obtained via the internet is often in question, as long as you stick to reliable websites, the possibility of finding expired or false information will be considerably less. Turn to reliable sites such as those of government agencies like the National Institute on Health or  Centers for Disease Control  and Prevention, well-known academic medical institutions such as Yale, Johns Hopkins, Harvard, University of California or reputable organizations like  Coalition Against Childhood Cancer or the American Cancer Society.

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.

You Just Have To Be Uplifting

In the Depths of Human Circumstances

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.”

 read more →

Meet Lynette: Giving Back

Her mission is to help other kids who are sick.

 

Lynette’s smile is captivating. Wise beyond her years, she has endured too much at such a young age. Yet her outlook on life is positive and upbeat. It is her bravery, her compassion and her love of life that inspires all who meet her.

At seven months of age, Lynette came to her family as a foster child. She won their hearts immediately and her family began what would become a very long adoption process. Lynette and her two siblings, also foster children who “never left”, settled into a happy family life. But when Lynette turned 8, she discovered skin lesions on her body and her happy life turned upside down. Surgery was needed and soon after she learned that she had Langerhans Cell Histiocytosis, a rare cancer that can damage tissue or cause lesions to form in the body. Lynette’s life became CAT scans, hospital visits, morphine pain drips and lengthy periods of loneliness and boredom during the long hours of treatment.

On one particular hospital stay, Lynette met Les Friedman during a Mikey’s Way Day. Lynette’s mom vividly remembers that day, “I didn’t know what to expect. I cried because it was so overwhelming. There were so many electronics on the cart, I just stood there and cried. I remember thinking, I have my daughter in the bed and he doesn’t have his son.” Lynette had the opportunity to select an electronic from the cart. Overwhelmed herself, she thought carefully before selecting an iPod Touch, the perfect device to help pass the long hours of boredom and isolation during her treatments. read more →

Hope In The Darkness – A Father’s Perspective

Excerpt from a father’s journal.

 

 

Here is an excerpt from Nate Beach’s journal entry in CaringBridge about his daughter, Ella.  It is one of many examples of Mikey’s vision coming to fruition.

Today we got a visit from a charity called Mikey’s Way.  This foundation was started by a very special boy who had cancer.  When the Make-A-Wish Foundation became involved in his case they asked where in the world her would like to go, which celebrity would he like to meet, what life altering event would he like to be a part of. His answer was incredible instead of doing any of those things he asked that a charitable foundation be made to buy children with cancer electronic devices to help them cope and distract them from the everyday difficulties of having cancer treatment. Today we met his father, who carries on his son’s wish by rolling a cart of electronic devices from laptops, tablets, game consoles, and iPods to each room on this floor with the simple request that each child pick something off the cart to keep. Through tear filled eyes, Mary and I were amazed to watch our shy and reserved little girl detach herself from her mom’s legs to give this gentleman a hug. It was truly a moment we will never forget and is difficult to even write about it.

The everyday challenges for pediatric cancer patients.

Portable, Wi-Fi ready electronics help overcome challenges for pediatric cancer patients.


A childhood cancer diagnosis and the treatment regimen that follows can be profoundly stressful, affecting all aspects of a child’s life. As a result, children and teens face enormous challenges trying to cope with the rigor, uncertainty and pain associated with long and grueling treatment. The challenges for pediatric cancer patients persist for the duration of treatment – on average about three years.  They include:

  • Isolation from friends, family and school.
  • Restrictions from their normal daily activities and social interactions including sport teams, dance classes, etc.
  • Loss of a sense of empowerment ie. not being able to make even the simplest of decisions for themselves (what to eat, what to wear, etc.)
  • Fear of an uncertain future, including the effect of treatment protocols that lie ahead.
  • Having to shuffle between treatments, doctor appointments and various medical facilities for an extended period of time, often over long distances.
  • Loss of a sense of normalcy in their lives.
  • Disruption in their normal psychosocial development.

 read more →

Mikey’s Way Childhood Cancer Heroes

 

 

 

 

 

 

A message from Les Friedman, Mikey’s Dad:

To those of us who knew and loved Mikey and to all those who have since been touched by his determination to make a difference in the lives of children with cancer, Mikey is indeed our hero.

Each day across the United States and around the globe, childhood heroes face life-threatening illnesses with the same grace, determination and strength that Mikey did.  These are the brothers, the sisters, the sons, daughters, relatives and friends of the people who love them as deeply and as profoundly as we love and cherish Mikey.

It is only fitting that we dedicate a blog category to recognize and honor some of the many childhood cancer heroes that we have had the honor and privilege to meet. They inspire us each day as we carry out the work that Mikey began.

Immunotherapy – new promise for some patients

According to the American Cancer Society, in the last 10 years, there’s been a lot of progress in the treatment of childhood cancers. Since the mid-1970s, survival rates have increased from 60% to 90% for certain cancers.

Many pediatric cancer patients respond well to standard treatments such as chemotherapy and radiation.  But for some children treatment stops working and for others, standard treatments are not effective, leaving few other treatment options for these children.

The good news is that the rapid developments in immunotherapy could offer great promise for many children battling cancer. Immunotherapy uses the body’s own immune system to recognize and attack cancer cells. read more →

Mind-Body Medicine

The implications of psychoneuroimmunology cover the length and breadth of medical research.

Over the last few decades, the prevalent links between neuroscience and the immune system have grown into an interdisciplinary area of study known as psychoneuroimmunology which explores the influence of the mind on the body’s immune system.

Research in the field of psychoneuroimmunology shows that stress and depression affect the body’s natural immune response to cancer as well as infections.**  The immune system plays a critical role in cancer incidence, progression, and quality of life. read more →