#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]

New mobile game app for teens with cancer that helps them explore their feelings about cancer, rather than just shoot at their bad cancer cells.  Bravo!

[childhoodcancer]

How does a teenager with cancer find someone who gets it? Now there is an app for that!  Click on this link to learn more about a new mobile app called “instapeer” that provides instant one on one support from peers for young cancer patients!  

[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]

This article from Forbes outlines the social media frenzy to save a pediatric cancer patient by pressuring the CEO of Chimerix to release an experimental drug for compassionate use.  Kroll describes how the dark side of social media made death threats against the CEO and the company required 24-hour police protection during the viral #SAVEJOSH social media campaign.  

[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]

Great read about how telemedicine is helping pediatric cancer patients get immediate access to doctors and nurses from the comfort of home.  

[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]

Although this article isn’t specific to childhood cancer, I think it’s great read about how to find good quality information about cancer resources on the web beyond google.  CancerHawk is a blog that offers great advice to cancer patients and caregivers. 

[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.