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Keeping Connected During Your Brain Tumor Journey

By Kayla Giacin
Thursday, October 22, 2015

It seems like everyone is connected through social media and technology now a days.  The growth of these things has been incredible for the past decade or so, growing at a speed that when looking back, seems unimaginable.  

This can create endless possibilities for making connections, finding information, keeping up to date on news, and so much more. 

This has proved to be amazing for the brain tumor and cancer community through connecting families and survivors to important information and peer support. 

When I was diagnosed 20 years ago, I can remember my mom going to the library during the few spare moments she had between work, taking care of me, my sisters, and obligations at home. She would scour books and encyclopedias for medical information about brain tumors in pediatrics, possible treatments, what we could expect for a prognosis and long term effects for me – some of which may have been outdated or difficult to sift through. There was no “googling” and talking to someone named Siri on your phone would probably get you some weird looks, at the very least. 

In 1995, we didn’t have a computer and most certainly did not have the internet. 

Several years later, when we did eventually have the internet, my mom somehow connected with another mother of a brain tumor survivor who had a diagnosis similar to mine. I can remember how excited she was to find this connection and how they emailed back and forth for a while, but even that died down when things got busy and it was hard to keep up with returning emails. 

Up until about 10 years ago, I had never met another brain tumor survivor my age. I had never really thought about it. I didn’t know that late effects clinics existed. I am very fortunate to have had amazing surgeons and physicians who took care of me during diagnosis and life after, but no one talked to my parents about “life after” a brain tumor in terms of finding social and emotional support.   There were no keywords they could type into a search box when I started to show signs of depression and anxiety. 

Fast forward 15 years later. If a concern pops in my head and need support from some of my friends while I’m standing in line to get coffee, I can pull up Facebook on my phone and have 10 people checking in with me before I finish drinking my coffee! If I see some promising research in a news article – I can share it in under a minute to 350 of my Facebook friends.  Sometimes I won’t even bother posting something from a few months ago because it seems like “old news”. 

There are a multitude of ways to keep families and survivors connected to the brain tumor community around them. Here are some resources CBTF offers to help start and keep these connections:

For Families: 

This is a general, public Facebook page where CBTF regularly posts research and resource updates, events and activities, family and survivor highlights, and otherwise connects brain tumor families with one another as well as keeps the general community engaged. 

This is a closed Facebook group exclusively for parents of brain tumor patients and survivors who are looking for support from one another.  You can request to join the group from the group administrator. 

This is a closed Facebook group exclusively for parents who have lost a child due to their brain tumor. It is facilitated by CBTF's bereavement social worker, Jessica Elder. You can request to join the group from the group administrator.  

Keep up with great CBTF moments from events and activities by following us on Instagram  

You can keep up to date on current research, resources, blogs, and more by following @CBTF.  

Jenna's Corner, sponsored by the Jenna's Rainbow Foundation, is an online community made up of brain tumor parents and family members. These groups and discussions are monitored by CBTF social workers. 

Bereaved Parent Online Chats

These monthly online chats are held on Jenna's Corner and facilitated by CBTF bereavement social worker, Jessica Elder. You can find out more by emailing jelder@cbtf.org  

CBTF sends out a monthly newsletter to recap family events, talk about issues important to the brain tumor community, and to keep you updated on upcoming events and activities. You can sign up to receive the newsletter by clicking here. 

For Survivors: 

Daily Cranium is an pediatric brain tumor survivor network created for survivors and by survivors. It's social media outreach includes blogs, interesting articles about survivorship, and shares talents from brain tumor survivors through their contributions. Any AYA survivor can submit content to be posted. Daily Cranium is on Facebook, Twitter (@TheDailyCranium), and Instagram. 

AYA Survivor Chats 

These monthly online chats take place on Google Hangouts and includes talks about things like career, education, fertility, emotional challenges, and offers general peer support. Email Kayla Giacin at kgiacin@cbtf.org to find out more.

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