#PedCSM

[childhoodcancer]

Faith in humanity restored. Just when I was thinking “how can kids with cancer get their hands on a bald AG doll,” I found this article about a compassionate young girl who is using social media to fundraise so she can give bald American Girl dolls to pediatric cancer patients.  She sells bracelets on Facebook to buy the dolls and presents them to patients in person. Social media to the rescue! 

[childhoodcancer]

This is my son, Aaron, when he was 4 years old. He was diagnosed with a malignant brain tumor called anaplastic medulloblastoma.  

The first neurosurgeon who looked at my son’s MRI declared that my son would not survive brain cancer because the tumor was too close to his brain stem. This location meant that not enough of his tumor could be removed for a complete resection.  If there is visible tumor left behind after surgery, the chances are very low to successfully treat cancer with chemo and radiation.  

So after two long weeks in Pediatric ICU, we came home and my 4-year-old son couldn’t walk or talk.  I did what most parents do these days: I googled it.  

After searching the internet, I found a clinical trial on the National Cancer Institute website www.cancer.gov for an experimental treatment at St. Jude Children’s Research Hospital. I applied online and we were accepted into a clinical trial within days of my online application.  Clinical trials must begin within 30 days after surgery, so my ability to find this opportunity online so fast helped to save his life.  

Fast forward to today:  my son, Aaron, is 5 years cancer free, thanks to that clinical trial at St. Jude Children’s Research Hospital in Memphis, TN.  I am forever grateful for the miracle of hope we were given by St. Jude.  I am honored to share all I have learned from my personal experience on my journey, and inspired by every story I hear about other children who fight the good fight. 

Please comment on this page about how digital media technology, social media or new digital health technology has helped your family cope with childhood cancer.  You feedback really helps me!  Thank you for visiting & be blessed.  

[childhoodcancer]

This is a great article about the power of social media to change the world for the better.  This social media campaign on Facebook convinced toymaker Mattel to produce a bald barbie for pediatric cancer kids!  Thanks to Curesearch.org for sharing this article on their blog about pediatric cancer and social media! 

[childhoodcancer]

Great read. This article explains the argument against “compassionate use” of experimental drugs for pediatric cancer patients like Josh Hardy.  You may recall the social media campaign #SAVEJOSH in 2014 which started as a result of being denied compassionate use of a drug by a small pharmaceutical company.  After social media backlash against the company for withholding the life-saving medicine, the CEO gave into public pressure and released the drug to save Josh.  It may seem like the CEO did the right thing, but a month later the company fired him!  

[childhoodcancer]

This article highlights how a new digital health technology called IoT, which stands for the “Internet of Things,” is helping pediatric cancer patients get better, faster care from their doctor.  The article discusses the life threatening condition called sepsis, which is very common in pediatric cancer patients during infection.  After our last chemo treatment, my son was hospitalized for 9 days from a sepsis infection, bur fortunately he recovered. Did you know that 20% of children with cancer die from infection before their chemo treatment is complete?  

For example, Cerner has developed a program called The St. John’s Sepsis Agent, an electronic warning system, monitors patient’s symptoms in key areas. Data is sent to a central hub in the cloud where evidence-based algorithms can effectively predict which patients are at risk. Health care professionals can then intervene, resulting in a 20 to 30 percent better chance of survival from sepsis.[3]

[childhoodcancer]

Podcast of Facebook Live Event to discuss Pediatric Cancer treatment and new research such as immunotherapy available through clinical trials at the National Cancer Institute.  Patients who are accepted into a clinical trail at the NCI do not have to pay for any treatment or travel costs.  They also receive free lodging and food through The Children’s Inn located on the NIH campus.  During the podcast they discuss how most pediatric patients with rare forms of cancer connect with other patients & families through social media.  

[childhoodcancer]

Big data in genomics and collaboration between researchers are paving the way to new cures for pediatric cancers.  See this article to learn more about  The Treehouse Childhood Cancer Initiative.  Treehouse analyzes a child’s cancer data against both childhood and adult patient cohorts across all types of cancer. It can compare individual pediatric tumors against a vast database of 11,000+ tumors. This “pan-cancer” analysis of adult and pediatric tumors may predict situations in which an adult drug might work on a subset of pediatric patients. 

[childhoodcancer]

The case for and against compassionate use of experimental drugs is explained in this essay from Harpers.  This is a huge issue for pediatric cancer patients and their families.  You may recall the #SaveJosh social media campaign from several years ago. A small drug company refused to release their drug for compassionate use to help save a 7-year old boy, Josh Hardy.  His mother posted a cry for help on Facebook, and his media savvy Uncle created the hashtag #SaveJosh and posted it to Twitter.  It went viral and within days the mother was doing interviews on CNN and Fox.  Eventually, the CEO of the drug company caved in to public pressure and gave the drug to #SaveJosh. 

Josh Hardy’s story demonstrates how social media can make a direct impact on kids with cancer.  As the parent of a son who battled brain cancer, I can totally relate to this family. My son also suffered from serious infections during his chemo treatment (sepsis, shingles and fungal infections) but luckily the drugs we needed were available immediately and he recovered quickly.  What a nightmare to think a company would simply say no to your request for compassionate use of their medicine to save your child’s life.  Fortunately, pediatric cancer advocates like Kids V cancer are working hard to change compassionate use laws so that children with cancer can gain access to experimental drugs without launching a social media campaign.  

[childhoodcancer]

Click this link to discover a variety of cancer hashtags being used on twitter and other social media.  Knowing these hashtags can come in really handy when you are searching for the latest information on a specific type of childhood cancer.  It can also help you to post info regarding your child’s type of cancer so it can be easily found by doctors, researchers, patients and other caregivers. Some of the hashtags that you may want to try: #AYACSM for Adolescent and Young Adult Cancer, #BTSM for brain tumors, #LeuSM for Leukemia, and #PedCSM for Pediatric Cancer.  

[childhoodcancer]

How Nature and a 9-Year Old Are Revolutionizing Cancer Treatment: Dr. Ji...

Dr. Olson explains tumor paint and how it works to help pediatric cancer patients.  He also explains how he used social media and crowdsourcing to fund the research into new drugs for children with cancer and rare diseases.  Tumor paint is currently in clinical trials, and Dr. Olsen expects it to be approved by the FDA as early as 2019.  

[childhoodcancer]

Bringing Light from Project Violet on Vimeo.

This short 3 minute film is about Tumor Paint, a new drug for pediatric brain tumor patients that is currently in clinical trials. Bringing Light was shown at film festivals in 2013, and shared on social media as part of Project Violet, which is a crowdsourcing campaign to fund research into new drugs for rare pediatric cancers.  

[childhoodcancer]

One of the ways that I use social media to impact childhood cancer is to fundraise for the hospital that saved my son’s life.  When Aaron had brain cancer, our local doctor told us it was impossible for him to survive because the tumor was too close to his brain stem.  St. Jude gave us hope when we were hopeless.  Today Aaron is 5 years cancer free thanks to the life-saving research done at St. Jude.  In honor of this miracle, we participate in the St. Jude Walk/Run to End Child Hood Cancer every year.  

This fundraiser is done entirely online by using social media.  By registering, I sign up for a fundraising page.  This gives me an easy way to share the event through emails with a link back to the page for donations. But the easiest thing to do is share the page on my social media like Facebook, or Twitter and get the word out there to all my social media friends and family.  All someone has to do is click the photo for St. Jude and it takes them straight to the link where they can make a donation online. All donations go straight to St. Jude.

I have been truly amazed by how successful this fundraiser is for St. Jude.  I am blown away by the generosity of everyone who participates. I am often surprised by the kindness of people I hardly know who are friends just from our online connection, but we have never met in person. Or the donations received from my old friends in high school, or 8th grade, who I haven’t talked to in years. It moves to see how much people care about St. Jude. 

This year my husband had a friend from high school who got his employer to match all of his donations. That one friend made every dollar we collected double this year!  We have had friends who join our walk team, or even start their own walk team in locations around the country.  Especially in the Navy, we have friends who move away and it’s cool to see them continue to support St. Jude in their new location.  

I used to be a Girl Scout Leader and we did lots of fundraisers with scouting.  This St. Jude Walk is hands down the easiest fundraising event I have ever done.  I don’t have to stay up all night, go door to door asking my neighbors to participate, create beautiful raffle baskets, bake cookies, make food, or burn my fingers with hot glue creating holiday ornaments. (All things I have done in the past to help kids fundraise.)  All I do is share my St. Jude page on social media.

So I am sharing again, this time on Tumblr.  Our Team Aaron Woods walk page will be up and still collecting donations for St. Jude until November 1, 2017. 

[childhoodcancer]

ReMission 2 is a new gaming app designed to make pediatric cancer into child’s play.  On the one hand, this sounds like a super cool way to help kids cope with childhood cancer by turning it into a game. My son, age 9, loves video games and I’m sure he would love to zap cancer cells like they are the bad guys. But I wonder if this type of game is the best way for kids to deal with cancer psychologically.  

Could a game like this give kids an unrealistic expectations or a false understanding about fighting cancer?  Pediatric cancer patients come in all ages right down to infants and toddlers, and children are not just miniature adults. Depending on their age, they have very vivid imaginations and still believe in magic.  When my son had cancer, the child-life specialist at St. Jude warned us not to describe cancer to him as a “monster” or an “animal”or a “bad guy” living inside him because it could give him nightmares.  

Many cancer families, ours included, tend to talk about pediatric cancer treatment in terms like “fight” and “battle” to describe our child’s illness. We tell our kids that they will “beat cancer.”  We call children “cancer warriors.”  We say “fight the good fight.”  We hear other people say these things and we adopt the language.  

But after we returned home from the hospital, I read how these words aren’t really helpful to use with kids to describe cancer.  Think in terms of opposites.  

If getting better equals a “win” or a “victory,” then the opposite is also true. When children don’t get better, or if they relapse then they may interpret the setback as their fault for not “fighting hard enough” or not “winning the battle. Cancer is a long-term illness, and there are many hurdles along the way. Sometimes there are going to be setbacks like infection or low blood counts that will delay treatment.  

Talking to kids about cancer is complicated.  There’s a lot to consider in choosing the right words.  Fortunately, our son was only 4 when he was diagnosed with a malignant brain tumor, so he  blessed with ignorance. His biggest concerns were the toys in the waiting room on most days.  His greatest fears were pokes and yucky tasting medicine.  We did not tell him he had cancer or that he might die.  We never explained to him that he would lose his hair.  We just didn’t know how to explain it to a 4 year old boy.  

One day, about 3 weeks into radiation, he woke up and his hair was gone. He looked in the mirror and said, “Dad, I look just like you now!  This is great!” Which is totally not what we expected, but we went along with it.  We just simply told my son he was sick and the doctors were going to make him better. He accepted that simple truth, and he didn’t worry about the rest.  The way I see it, that was my job to worry about everything and his job to get better.

Most apps I read about for childhood cancer make me wish I had access to this technology when my son was in treatment, but not this one.  I think if my little boy knew had to kill the bad guys living inside his body this would have opened up a whole can of worms that I was not ready to talk about.  He may have been perfectly fine with it, but I’m not so sure about me.  

What would you do if you could give your kids a video game that killed cancer? Would it be a good thing or not?  Would it depend on their age?  

[childhoodcancer]

With all the fuss in social media lately about football players, I just wanted to highlight the good deeds of one team, the Oregon Mighty Ducks, who wore gold in September on their uniforms for Childhood Cancer Awareness Month. Even better, the designs were made by kids who are childhood cancer survivors working together with designers at Nike to fundraise for their local pediatric cancer hospital in Oregon. 

This is the kind of collaboration that is worth some big media attention in the news and on social media with the fans.  So happy the team is helping kids fight the good fight with their uniforms this September.  Childhood Cancer Awareness Month is a way to get the word out there to thousand of football fans that kids get cancer too.   

[childhoodcancer]

The NIH is spearheading a $14.8 million, five-year effort to launch a data resource center for cancer researchers around the world in order to accelerate the discovery of novel treatments for childhood tumors. 

When my son, Aaron, was treated for brain cancer at St. Jude’s Children’s Research Hospital in 2012, he participated in the Pediatric Genome Project with 700 patients. The researchers explained to us that they know there is a link between cancer cells are genetic mutations of the body’s regular cells. They can identify multiple gene mutations in tumor cells, but they don’t know how the mutation process starts or why. This new centralized database is a research tool that would help combine clinical and genetic sequence data from public and private hospitals like St. Jude all across the country, and around the world. 

When I read articles like this about progress being made in childhood cancer research, I feel hopeful that I will see a real cure for the kids in my lifetime. 

[childhoodcancer]

The new digital tool, “ProteinPaint,” is a Web app developed by St. Jude to support research into the link between genetic mutations and childhood cancer.