childhoodcancer

[childhoodcancer]

Camp Sunrise & Sunsibs is free for childhood cancer patients!

Last, I'm including the contact info for camp coordinator, Lauren Murphy.  She says they have extended the deadline for applications until Friday, July 13, 2018.  If you know any childhood cancer patients who may want to go to camp in the first week of August in Maryland - or kids who are off treatment like my son, Aaron - or their siblings - they would love to host more kids from hospitals outside of Johns Hopkins.  

FYI:  

Camp Sunrise 2018: July 29 thru August 4

CAMPERS

To apply for Camp Sunrise, please fill out the online application by July 6, 2018.  (Lauren Murphy says the deadline is extended until Friday, July 13, 2018.)

Online Registration

Instructions for creating a profile on the application website.

For questions about Camp Sunrise or applying, contact Lauren Murphy, 410-707-9938 or talk to your Johns Hopkins Pediatric Oncology child life specialist.

or email Lauren Murphy at

[email protected]

Lauren Murphy, Camp Sunrise Camper Coordinator

https://www.hopkinsmedicine.org/campsunrise

app.campdoc.com/register/jhucampsunrisesunsibs

#childhoodcancer #pediatriccancer #kidscancer #cancercamp #freecamp

[childhoodcancer]

A word from Aunt Ria

Hi! I am Aunt Ria. My beautiful, amazing niece, Carlie, is a cancer survivor. She is a St. Jude’s kiddo. I am so thankful for social media because it helped us keep folks updated on Carlie’s needs and progress… Our prayer warriors were world wide - social media played a huge part in that. 

Hugs and prayers for you and your little one. 

#childhood cancer #submission #comments

[childhoodcancer]

Love your blog and all the articles and useful links.  My son, Aaron, was diagnosed with Medulloblastoma in 1999 and there wasn’t nearly enough information and resources out there.  So often I felt so alone in our battle.  Aaron still has his ups and days and 18 years later we have learned to take one day at a time.  Blessings.

#childhood cancer #submission #comments

[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 #stjude #helpushelpthekids #medulloblastoma #comm372t #braintumor #cancer #parents of children with cancer #NEGU #hope #miracles #372T #pedCSM #BTSM #childhood cancer #pediatric cancer

[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!  

#stupidcancer #childhoodcancer #cancer #btsm #ayacsm #leusm #PedCSM #millenials #HCSM #childhoodcancerawareness #childhoodcancerawarenessmonth #gogold #lifeaftercancer #medulloblastoma #parentsofkidswithmedulloblastoma #moonshot #dipg #staract #372t #social media #digital health technology #mhealth #instapeer #mobile app #cancer kids

[childhoodcancer]

This story is a great example of how social media is making a difference for kids with cancer. Social media apps like Snapchat offer young cancer patients emotional support throughout treatment. This is especially important when patients must stay in the hospital isolated for months, or travel to special treatment centers a long way from home. It’s a bonus for fans like Talia to connect with their celebrity hockey heroes!

Thanks, I’m sobbing.

#childhoodcancer #childhood cancer #372t #pedcsm #social media #snapchat #pediatric cancer #kids cancer #sports fans #hockey fans

[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.  

#pediatric cancer #childhood cancer #compassionate use #pedCSM #372T #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!  

#compassionate use #pediatric cancer #childhood cancer #kids cancer #372T #social media #social media campaign #pedCSM

[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 #372T #pedCSM #pediatriccancer #compassionate use #kidsvcancer #savejosh #cancersucks #parents of children with cancer #CNN #Fox News #St Jude #cure kids cancer #childhood cancer #pediatric cancer #social media #social media campaign #cancer parents

[childhoodcancer]

(via Crowdfunding for Medical Bills & Related Expenses | CancerHawk)

Crowdfunding is another way that social media can help when your loved one has cancer.  This is especially true for families with children who are fighting cancer.  Many families must travel far from home to get treatment at a special childhood cancer facility. Clinical trials are not always available at local hospitals. Depending on the type of cancer, treatment can take months or years.  At least one parent must leave work to accompany the child to treatment, and the loss of income is devastating for the entire family.  Even with the best health insurance, not all medical costs are covered for treatment.  And other expenses like travel, hotel, food, and parking can really add up quickly.  

#childhood cancer #pediatric Cancer #cancer #372T #crowdfunding #cancer parents #learning resources

[childhoodcancer]

This organization, Journey 4 A Cure, is giving away free i-pads to children who are going through cancer treatment so they may stay in touch with friends & family via social media, keep up with their school work, and use digital media applications to beat boredom while at the hospital.  If you know of a child who is currently in treatment for cancer, please share this link to Journey 4 A Cure!  

#childhood cancer #pediatric cancer kids cancer #brain cancer #medulloblastoma #parents of kids with medulloblastoma #parents of kids with cancer #cancer #NEGU #372T #free stuff #social media #cancer kids #cancer parents

[childhoodcancer]

This is an inspirational video about a father whose son went through cancer treatment. He started a charity called Hopecam.org to give children in cancer treatment free tablets -- and most important Hopecam helps to connect these kids from their tablets to their schools & classmates during treatment. The use of digital media to keep young cancer patients connected with their peers in school is powerful medicine.  And his story left me with chills.  Enjoy!  

#childhood cancer #pediatric cancer #brain tumor #cancer #parents of children with cancer #parents of kids with medulloblastoma #medulloblastoma #kids with cancer #kids cancer #372T #social media #free stuff #cancer kids #cancer parents

[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. 

#372T #social media #childhood cancer #pediatric cancer #cancer diagnosis #pedCSM #cancer parents #learning resources

[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.  

#pediatric cancer #childhood cancer #372T #NCI #pedCSM #social media #ccam #childhood cancer awareness #childhood cancer awareness month #clinical trials #pediatric cancer clinical trials #cancer parents

[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.  

#Childhood Cancer #Pediatric Cancer #PedCSM #AYACSM #LeuSM #BTSM #Childhood Cancer Awareness Month #372T #Childhood Cancer Awareness #Cancer Sucks #hashtags #social media #cancer parents

[childhoodcancer]

This article is a great read about a new drug called tumor paint which caught my attention for two reasons. First, my son is a brain cancer survivor so I can completely understand the need for this drug to help neurosurgeons identify and differentiate cancer cells from normal brain cells. This new drug could help make surgery to remove cancerous tumors so much more precise, which is especially important for kids who are diagnosed with brain cancer.  

The second reason I love this story is because the researcher turned to social media and crowdfunding to raise the money for the his research. Producer, Bert Klasey made a short film about tumor paint titled “Bringing Light” and it won the Audience Favorite Award at the 2013 Focus Forward Filmmaker Competition.  You can find the film on Vimeo.  And Amazon volunteers built a website titled “Project Violet” to promote the film on Facebook and Twitter.  Olsen has used these digital media tools to fundraise over $5 million dollars and the first clinical trials began in May 2015.  

Tumor Paint: Light at the End of the Scalpel

by Alex O'Brien, Mosaic Science

In 2004, Dr Richard Ellenbogen spent almost 20 hours operating on a 17-year-old girl with a brain tumor. He ended up leaving a big piece of the tumor behind, mistaking it for normal brain tissue. Less than a year after the surgery, the cancer hit back and the young girl died.

The week the girl died, Ellenbogen presented the case at his team’s weekly meeting at Seattle Children’s Hospital. “There’s got to be a way to take more of the tumor out and leave more of the normal brain intact,” he sighed in frustration. The nagging feeling that he could’ve taken more tumor out wouldn’t leave him alone. Ellenbogen had faced a dilemma: if he had removed more, he would probably have removed more tumor but might also have removed normal brain tissue, with the risk that the girl would have been left severely disabled. Neurosurgeons have to be aggressive and sometimes push themselves to go further and deeper than they feel comfortable going, but they all operate under the adage ‘first, do no harm’.

Keep reading

#childhood cancer #pediatric cancer #pedCSM #372T #tumor paint #BTSM #Bringing Light #project violet #parents of children with cancer #cancer research #cancer short film #pediatric cancer research #pediatric cancer film #short film #crowdsourcing #social media

[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.  

#vimeo #childhood cancer #pediatric cancer #pedCSM #372T #project violet #pediatric cancer research #bringing light #tumor paint #BTSM #cancer video #crowdsourcing #social media