Traditionally “summer camp” is viewed as a carefree, fun and sometimes educational program for kids to take part in during their summer breaks. Lasting a few days to a few weeks, these programs can teach life skills, sportsmanship, and team work, build self-confidence and help form life-long friendships.

Many of us utilize summer camps to keep our children physically active and to keep them from being bored out of their minds during the summer.
But did you know about the specialty camps available today to help kids who have been impacted by a cancer diagnosis in their family?

One in three women and one in two men will be diagnosed with cancer in their lifetimes and cancer affects an entire family.

Some of these camps are available at low or no cost and offer an environment of understanding and support for a child and family members who are experiencing tragic or difficult circumstances. A camp like this can offer a child a break from the reality of their current situation, a break from cancer or maybe for the first time be the one place where there are others that truly understand.

If you have or know of a child impacted by a loved one’s cancer diagnosis, it’s worth it to check into the availability of camps in your area.

I've posted some listings of camps below. If you know of others, please feel free to post the links in the comments section.

Angel Foundation's Kid's Kamp, Minnesota
http://www.mnangel.org/attend
Facing Cancer Together, a program of Angel Foundation, offers a free camp for children ages five to 18 who have a parent with cancer. Facing Cancer Together offers education and support programs for the whole family throughout the year.

Arizona Camp Sunrise and Sidekicks, Arizona
http://www.azcampsunrise.org/
Established by the ACS, Arizona Camp Sunrise offers special programs for children who have or have had cancer and Sidekicks, programs for the siblings of children with cancer. Arizona Camp Sunrise offers weeklong, residential summer camps, day camps, weekend retreats, teen trips, and other year-round special events.

Camp Kesem, throughout the United States
http://campkesem.org/find-a-camp
Organized by college students, Camp Kesem is a weeklong, sleep-away summer camp for children ages six to 13 with a parent who has or has had cancer. The camps are held on college campuses throughout the United States. Each of the camps is organized and operated by a group of student leaders.

Camp Mak-A-Dream, Montana
http://www.campdream.org/
Camp Mak-A-Dream is operated by Children's Oncology Camp Foundation. It is a medically supervised, cost-free camp for children (ages six to 13), teens (ages 14 to 18), and young adults (ages 19 to 25) with cancer. Camp Mak-A-Dream also offers a camp for siblings ages six to 17 who have a brother or sister with cancer and hosts retreats for adults with cancer each fall.

Cancer Services of New Mexico's Family Cancer Retreats, New Mexico
http://www.cancerservicesnm.org/programs/retreat.php
Family Cancer Retreat is a free, three-day educational retreat for adults with cancer and their families. The event includes a combination of educational workshops and family activities. The retreat is held twice a year in Glorieta, New Mexico.

Harmony Hill, Washington
http://www.harmonyhill.org/personal-retreats
Harmony Hill, located on the south shore of the Olympic Peninsula's Hood Canal, offers weekend, residential cancer retreats for people with cancer and their loved ones.

The Hole in the Wall Gang, Connecticut
http://www.holeinthewallgang.org/Page.aspx?pid=471
The Hole in the Wall Gang is a camp founded by Paul Newman in 1988 that offers summer programs, fall reunions, parent support programs, and other outreach programs. The Hole in the Wall Gang is one camp within the Association of Hole in the Wall Camps.

Special Love, Inc., Virginia
http://www.speciallove.org/
Special Love provides camps, support networks, and other unique experiences for children with cancer, their siblings, and families.

Some business leaders and organizations are failing at social media and don’t even know it.  It’s easy to live and work in a silo.  It’s easy to attribute those one-time likes as a measure of your success, but don’t fool yourself.  Social media is vast and fluid.  While it’s forever changing, some things, common practices, still remain the same.  While you may not hear or read complaints, it’s very easy for users to ignore, hide, unfriend or un-follow you.

Here are some tips on what you should and should not do.

Don’t Lie.

Some business leaders and organizations stretch the truth about various things.  Don’t post something that isn’t 100% true.  We will find out and then your credibility will be shot.

Don’t Spam.

I followed you because I was already a fan.  One ad or self-promotion a week may be fine but don’t let that be ALL that you ever post or I will unfollow you or unlike you.  If you put a personality to your page, add some great content and a bit of humor, I will share your stuff and you will get new fans.

Don’t Steal.

Don’t steal other people/organizations/brands stuff.  Just don’t do it.  Give credit where credit is due.  Reposting other people’s stuff is fine as long as you give them credit for it but putting a post, photo or idea out there like you created or own it when you poached it is just stinky and people will remember that about you.

Don’t Criticize.

Don’t posts negative things about other groups, businesses or brands. All that does is make you look bad.  In fact, just don’t post anything negative at all.  Remember that everyone loves animals and unicorns.

DO Post Quality Content.

I realize the majority of your content will be about you or the brand, but your social media page should have a personality.  You should share important things and humorous things and eye catching graphics and emotionally driven content too.  Our lives are multifaceted and your page should be too.

DO answer me.

This is critical if you want to keep followers and fans.  If I take the time to post a question or concern on your page, you need to take the time to answer me.  Hire someone to do it if you have to, it’s called customer service.  Turning off posts by others on your Facebook page doesn’t get you off the hook.  If you see something posted about you on Twitter or if you get a private message, you need to answer or at least acknowledge your constituents.

And finally, for those of you who have personal page accounts on Facebook to “relate” to real people, your fans, etc… start relating to them!  I have a great example of an organization’s president who has about 2k people on his “personal” Facebook page.  If you are one of those 2k people you may have felt quite special at one time.  Then you took time out of your day to post some words of encouragement or congratulations on the promotion or new baby or maybe you posted a happy birthday and that ‘friend’ couldn’t be bothered to type a thank you or give you a simple thumbs-up. 

Remember when Facebook and Twitter first burst onto the scene?  

In a matter of moments you were connected to every friend you ever had in your lifetime, you connected with world and international news reporters and celebrities and suddenly you were “in the know” about everything you were interested in. 

I was “friends” with Oprah Winfrey even though I had never met her before.  I gave opinions on news stories and those reporters answered back and followed up on their stories.  I was able to tell a brand that I liked or disliked something and have someone respond that they had heard my concerns.  Wow.  Social media was like the internet on crack.  (Disclaimer, I’ve never used crack by the way so I hope the reference makes sense)

Then Facebook morphed and changed with many upgrades and additions.  Now there were different distinction to pages and interactivity was limited by page and account settings.  Add in edge ranking (I could speak on this for an hour) and social media business users started to self-promote more and interact less. Pages on Facebook were pushing the same content onto Twitter without having someone present to monitor Twitter to answer any tweets or engage their followers. The age of social media management tools began and with one click the same content could be cross pollinated across multiple social media platforms.

At its start, social media shrank our world into 140 characters or entertaining images.  A thumbs up and a share button kept us connected to family and friends and personal interests across the globe.   Scrolling down your news feed or twitter feed kept you informed on global and local news as well as celebrity gossip.

It’s still that way for the most part.  Instant information is the amazing thing about social media.  But the connectivity isn't the same.  The world of social media is growing larger.  Page owners (business leaders, brands, celebrities) don’t respond to posts as often as they once did.  Most posts are self-serving and the feeling that you are “in the know” just isn't there anymore. 

Oftentimes you feel like posts coming from leaders and brands are micro commercials…You either turn them off (turn off notifications) or you just start to tune them out.

Empowered patients and patient engagement are phrases used often in advocacy circles to describe survivors and in describing a new healthcare system revolving around individualized health care, patient satisfaction and quality of life. I personally believe that technology, education and empowerment are essential in surviving a disease like cancer and I hope that one day all patients will have the benefit of a patient navigator trained to utilize technology to educate, engage and empower patients in their own care.

I recently sat in on a Twitter Chat where one medical expert posted that “most patients now are empowered.” I had to disagree with such a blanket statement.  I don’t find that to be the case- at least not in the lung cancer space. A disease like lung cancer is one that is rapidly moving from the moment of diagnosis to treatment to sometimes end-of-life in a matter of months.  There is not a lot of time for later stage patients to become educated and empowered in their own care.  I feel like such a declaration or belief, especially among healthcare professionals, may diminish their sense of responsibility to help navigate a patient through the process of their disease and treatment.

Not every cancer patient is an empowered patient.

I found that to be true in my own personal experience as a caregiver for my father. He was of the generation and mindset that followed the advice of his personal doctor and entrusted his life with the care that was prescribed. It took many months to convince him that he would benefit from a patient advocate and that knowledge could be powerful in finding treatments and care that would extend his life.  Several interventions on my part saved his life.  Watching for signs of dehydration and severe side effects helped his quality of life and being his voice when he was too ill to concentrate helped communicate his condition to his doctors. He outlived his 4 month prognosis by living 11 months and 21 days.  On paper it doesn’t look like much and an article about lack of research, funding and treatment options for lung cancer will be saved for another day, but those additional 7 months were priceless for me and my family.  I treasure every moment spent with him until he sighed his last breath.  That’s when I made the decision to support others and be a patient navigator.

I met with another patient navigator recently and I learned that the majority of her patients were the same way too. Her patients were not advocates for their own health care. They relied on their health care team to know how to treat their conditions. She said her patients were consumed with the emotional fallout of having been diagnosed with cancer, employment concerns, family and relationship issues and the worry of leaving their families financially destitute.  Many of her patients are not computer users and therefore didn’t find information over the internet.  Many times adverse side effects or serious medical issues were reported much too late and situations became critical.

Where would someone like that find the time to seek out second opinions, clinical trials, new treatment options and medications to combat side effects?  Most do well to learn about their diagnosis, stage and treatment plans.  For these people there is a leap from the office visit to the ER with no care or information in between.

For the population of people who are not tech savvy or have the ability to go online, they miss out on the luxury of finding the answers they need online and getting answers elsewhere outside of their 20 minute office visit 1-2 times a month.  I’ve even met patients a year outside of their diagnosis who did not fully understand their disease type or treatment options or long term side effects.

So how can we reach the seemingly unreachable patient?

·        We reach patients by being the touch points between them and their medical team.

·        We provide information in verbal, written and electronic forms.

·        We help to navigate their diagnosis and investigate their options.

·        We teach them the questions to ask and direct them to the people who have the answers.

·        We provide support when they feel alone.

·        We give them a reason to hope.

Before long, the newly diagnosed patient is empowered in their own healthcare. 

They may not log into a Twitter Chat and discuss policy or healthcare with experts.  They may not understand clinical trials or have the names of new drugs memorized, but they will know about their disease and their specific diagnosis enough to know they have the right to second and third opinions.  They will know how to ask questions about their condition.  They will understand that every day since the day they were diagnosed they have been surviving and that they are considered survivors.  They will know that someone is here to help and that someone cares about them.  
They will know enough to recognize when they are not getting the care they deserve.

If you have been impacted by lung cancer, visit LUNGevity Foundation for information, education and support.