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The Dangers at Camp Kesem

Kesem is supposed to be a nationwide community, driven by passionate college student leaders, that supports children through and beyond their parent's cancer. A program of Kesem, Camp Kesem operates free summer camps for children who have been impacted by a parent's cancer. Founded at Stanford University in 2000, Camp Kesem has since expanded to over 100 chapters in 40 states across the country.

Sounds great doesn’t it. Of course it does. However, in practice it has failed my son miserably. How can a camp and organization designed around the premise of supporting children through and beyond their parent's cancer be harmful to those children? Well this is what happened to my son there and you tell me if they met their mandate. That being said, I believe that Camp Kesem is a great idea that has failed to deliver. Instead of leaving Camp Kesem better for the experience, he is much worse. Yes, he made some great friends but he has also told us some very horrific stories of how he was treated and things that happened.

In the past six years, I have spent 107 days in the hospital; have undergone 29 surgical procedures, lost both kidneys and 80% of my vision because of cancer. This has put a great strain on our Son, physically and mentally. His biggest fear is that I, his mother, or himself, will go into the hospital and never come back out. Camp Kessem at Emory University heightened that fear when its Nurse put him in a position to be in the emergency room without his parents. An issue that could have been avoided had she followed the instructions on the medications form, the outside of the brown paper bag, or on the pill bottles themselves.

When you accepted our son into Camp, we informed you of is disabilities, which included ADHD, Severe Anxiety Disorder, Executive Function Disorder, Social Communication Disorder, Dyspraxia, Dyscalculia and Dysgraphia. We also provided documentation on what those diagnoses are and how best to accommodate them The setback in his psychological health has been unmeasureable and may take years to return to where he was the minute before he was raced to the hospital, scared out of his mind.

First, the primary nurse on staff, whom we believe goes by the name of Terry Karr Ryan (Camp Name "Ms. Flo"), at Camp Kesem at Emory University, as I understand it, committed malpractice. My understanding of medical malpractice, and I am an author not an attorney, occurs when a health care professional, through a negligent act, causes an injury to a patient. This negligence could be as a result of errors in diagnosis, treatment, after care, or health management. Additionally, the nurse would have to violate a known standard of care, there must be a recognizable injury brought on by the nurse’s negligence and that injury resulted in significant damages. Examples of these issues are the failure to follow doctor’s instructions, giving improper medication or the wrong dosage, providing the patient with poor care and disregarding the patient’s history. The reason in which I feel the nurse committed malpractice is because; instead of following the doctor’s prescription on the Kesem Medical form, parents intake instructions verbally provided to "Ms. Flo" at the time of drop-off; which then physically wrote on a brown paper lunch bag that she placed his medication bottles into, and the instructions on the pill bottles within; the nurse still managed to overdose my son on his cardiac medication by giving him twice his normal dosage. This resulted in his heart rate dropping to such a degree that EMS had to be called and my eleven year old son spent the night at the nearest emergency room under observation, a trip he made without his parents to accompany him. I believe that incident meets all of the requirements of violating a patient's standard of care, caused an injury by negligence and significant damages have resulted from that injury, both physically and psychologically. The nurse is not alone in her liability as Camp Kesem at Emory University and the Kesem organization is liable for their employees actions and their volunteer’s inaction. Just keep reading.

Second, our son has expressed to us that one time while he was using the restroom, and thankfully had the stall door closed, he saw camera flashes under his stall door. He told us that he thought someone had taken pictures of him. When we asked him if he told anyone, he said “no” because he was scared that someone would think he was lying. When we asked him why he thought they would think he was lying? He told us that it was because nearly everyone had been making fun of him because of his developmental disabilities. This information came out before we received an anonymous email from another concerned parent. That act is considered sexual harassment and it is criminal. The fact that my son did not feel comfortable going to an adult to report it is even scarier. That means that he did not feel comfortable with the adults entrusted in his care.

Third, our son has informed us that there were many occasions where other kids, both older and younger, made fun of his developmental disabilities. We are told that they made fun of his lack of strength, balance, coordination, and being overly afraid of new things. You do not have to hit someone for it to be bullying. Being made fun of for a physical or mental disability is also bullying and it is also criminal.

Forth, because of everything that happened to him, his demeanor, attitude, and general personality has changed. He is more anxious than ever, scared of every little thing and avoids new people. He has started swearing almost constantly, and angrily, even saying words I had to look up after twenty-one years as a Naval Officer. He has become argumentative and dissociative and has begun defying authority just for spite. These behaviors have extended into his new camp, which started on June 11t , that have resulted in two conference calls to help them work through his fears created from his attendance at Camp Kessem.

Your volunteers, as great as these kids are, are not trained properly for the responsibilities placed on them. If they had proper sexual harassment training then the bathroom incident could have been prevented or handled better. At this point it reeks of a cover-up and a quick destruction of evidence. If they had proper anti-bullying training then maybe they could have recognized that my son was being bullied and put a stop to it. If they had proper training to handle those kids with special needs, then maybe my son wouldn’t have returned a completely different person. Who asks an 11 year child, much less one with a severe anxiety disorder “what would you do if you dad died?” My son was asked that question. My G-d!?! Are you serious? Camp Kesem is supposed to be a place where children of parents stricken with cancer can get a break with other kids in the same situation. Your program hurt my son, physically and psychologically, in more ways than I can fathom at this time. It sickens me more than my cancer has and I believe you have robbed my son of a bit of his childhood; more so than my cancer has.

Is this what you teach at Camp Kesem? Is this what Emory University or any university associated with Kesem wants to be a part of? Do your donors and volunteers, who have given graciously of their time and money, to a cause that is supposed to help children, will continue to support an organization that has hurt children like they my son and possibly others. I leave that to them to decide.

As far as I am concerned, and this is just me excercising my First Amendment right to express my opinion, Camp Kesem is a great idea that has been poorly practiced. Volunteers are poorly trained and not given the tools to know how to handle even basic societal issues within a sensitive population. Kesem should make sure that these issues never have the opportunity to happen again and the nurse, that Kesem is protecting, should lose her license indefinitely for almost killing my son.

An Upset and Disappointed Parent!

More information about the Kesem organization and Camp Kesem can be found at Camp Kesem l