A good support network in your immediate community is vital during your child’s cancer treatment and beyond.
Several factors will impact the degree of support you receive: quality of your social network, physical proximity to you, and exchange of information about your needs. Support may not materialize if any of these elements are lacking.
There are a number of ways you can update people about your child’s progress.
Knowing the latest situation will increase their understanding, and equip them to offer appropriate support and friendship though difficult times.
Create a Website, Blog or Social Presence
This is the easiest way to keep people informed and ensure everyone has the correct information.
You don’t need to be a computer whiz to create a website. Many easy to use tools exist, and your internet access package may include one. Free services usually place adverts on your pages.
Caring Bridge has been designed to help families keep people informed during their child’s illness. You can share your child’s story, keep a journal, add photos, video and links, and receive encouragement through a guestbook. Visitors can sign up to automatically receive email notifications when you update the page.
You can also create a social media presence such as a Facebook group or page, or a twitter feed, dedicated to your child’s progress.
Use the website to share updates, ask for help and give thanks for support received. Add a link to this website so visitors can learn about retinoblastoma.
When writing your journal, be aware of people’s right to privacy. Do not share personal information about your child’s doctors or nurses, or other families unless you have their permission or they have already made this information publicly available online.
If you feel you lack the resources or energy to build a website or social media presence, ask a trusted friend or relative to do this for you. Ensure they are able to share correct information. Direct them to this Retinoblastoma Resource so they can learn more about retinoblastoma.
Send Email Updates
Most email providers enable you to create a group of email addresses under a single name. When you type the group name into the “TO” line of you email, the message will be sent to all addresses in that group.
In this way, you can quickly send email updates to many people at once.
However, this approach can be problematic. Recipients may not wish to receive emails, and your email may be removed to a bulk mail folder by spam filters.
Using one of the above website building tools will be a better alternative as they enable people to leave you messages in a way that does not clog up your email inbox. They also send automated email alerts each time you update the journal, to visitors who register to be notified.
Use a Second Telephone Line
Set up a telephone line with an answering machine. Explain to friends that the line will only be used to share a recorded update and receive messages. Update the out-going message regularly so people have the latest news.
If your answering system allows, save all the incoming messages. They will be a beautiful gift when your child is old enough to understand what they mean.
Create a WhatsApp Group
WhatsApp allows multiple people to connect their smartphones in a private group without revealing their private phone number to one another. You can share text messages, photos, videos, links, and live calls.
Friends and relatives can receive information and updates directly from you and contact you directly in response. They can send you immediate messages of support, and you can respond when you are able.
