Many families spent the latter part of this week heartbroken, sometimes for the second time, to discover that the journal entries they recorded while their children were fighting life-threatening illnesses had disappeared. For almost a decade, CarePages has been an online portal for families struggling with difficult health events, but late last year, the company quietly announced it was closing on December 31, 2017. This week, many families were surprised to learn that they could no longer access their accounts, but can you get your CarePages information back? Because losing those memories would be heartbreaking.
While CarePages has not yet responded to an email from Romper asking for information for these grieving families, one former user was able to successfully get her archived entries emailed to her by the company earlier today. Virginia Sole-Smith, who used the site to document her daughter's journey battling a congenital heart defect, told us this evening, "I emailed firstname.lastname@example.org and just explained that I used the site and desperately wanted our archived posts. They got back to me within a few hours — amazing!" Sole-Smith explained that she included her page’s name and link, as well as her login email and password.
Within hours, Sole-Smith had received a response from CarePages including a PDF of her family's entries on their account, totaling over 700 pages, but of course that waiting period was not easy to endure. While the company itself has not confirmed that this is the proper protocol for getting your information back, if it worked for one mom, it's likely a decent shot for getting your own archives.
Many heartbroken families believe they weren't informed by CarePages that their information wouldn't be available to them as of December 31, and in fact, if you visit the site now, the holding page informs visitors: We're sorry, the Discussion Forums are no longer available. Likewise, an automated response to an email sent to the company read, "Please note that CarePages will be accessible until December 31, 2017."
For years, CarePages was recommended by hospitals as a way for patients and their families to update their community on their medical situation, and hospitals around the country, such as MD Anderson Cancer Center of The University of Houston endorsed the site on their own. Daphne Bottos, who struggled to update her many siblings and family members when her mother was diagnosed with melanoma, wrote on the MD Anderson site in 2013, "Recently, my mom was diagnosed with skin cancer again, but this time, my family is having a much easier time sharing updates. That's because my parents are able to share information with friends and family through a site called CarePages."
Sole-Smith claimed that the site was actually used by many for more than simply updating family with health information in a crisis. Her daughter was hospitalized many times before she turned three and has undergone more than a dozen surgeries, including three open heart surgeries. "Pretty quickly I realized that CarePages was more than just logistically helpful — it was our lifeline to the outside world during long hospital stays when you kind of lose touch with reality. It was a journal for me, a place to process complex medical information and even more complicated feelings about what we were going through."
Like many other families, Sole-Smith was unaware that the site would be shutting down and she would lose access to the archive of entries, which she was hoping would be a record her daughter could read when she's older, "Not just what I wrote; we received so many amazing, thoughtful, funny, sweet messages from friends and family. I wanted her to know just how crazy loved she is by these people who saw us through these hard years." Luckily, her daughter will still be able to read the entries and comments for herself when she's older, and Sole-Smith hopes other families will have the same success as she did in contacting the company.
But for many families, the last few days have been heartbreaking, for good reason. These people don't know if they will be able to get back the entries (read: memories) regarding their loved ones, some of whom has passed away and range from babies to adults, back again. Hopefully this information will soothe some aching hearts that it might as well be possible to retrieve their information from the site with some persistence.
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