The words were written by Cassie Hines, a then-high school junior from Shelby Township with a rare form of kidney cancer. It is just one of the hundreds of entries written on a blog detailing Cassie’s four-year cancer fight. Written mostly by her mother, Karen Hines, the blog kept family and friends in the loop of Cassie’s health status and treatment plans, but it also became a form of therapy for the entire family.
Karen says it’s difficult to go back and read the words she wrote, but in the years since Cassie’s death in 2012, she’s glad she kept the record of her daughter’s battle. She wrote about surgeries, chemotherapy, hospital stays, pain and fantastic nurses, but she also found comfort in sharing her daughter’s story, connecting with others facing similar challenges and peace in the messages shared with her family as a response to her writing.
When Cassie was diagnosed and undergoing treatment, using blogs as a way to tell a patient’s story was relatively new. Now, parents are using not only blogs but also social media channels to share the lives of their children with chronic and terminal illnesses. Many of the parents find that communicating about tests, scans and lab work is not only informative to their friends and family but cathartic and therapeutic as they face the unexpected twists and turns of a childhood disease.
Cressie Boggs, a Grosse Pointe mother of three, started a blog in February 2015 shortly after her family learned that her then-unborn child, Caroline Grace, had Trisomy 18 – a rare chromosomal abnormality that often results in stillbirths or death in young babies. At 16 weeks pregnant, Boggs says she spent the first few weeks processing the information and crying in her shower, but then she started writing.
“Shortly after we received the results from the blood test, one of my best friends suggested a CaringBridge page to share. She thought it may be therapeutic,” Boggs says. “I also started seeing a therapist and she suggested journaling.”
Boggs addressed each entry as a letter to her unborn daughter, even though she knew Caroline would likely never read them.
“It allowed me to express and share all the things that I would want to share with her. It was more personal for me,” Boggs says of her blogging style. “I honestly wanted some sort of documented journey for Olivia, my eldest child (who is 4), to have to remember her sister. I wanted her to know that we celebrated her baby sister every week in utero. Most importantly, I wanted her to know that she had a sister.”
Boggs says the blog also provided an information channel for those who wanted updates without feeling intrusive.
New Haven mom Krystal Hubbard took to social media after her son was diagnosed in February with a rare form of kidney cancer, Wilms’ tumor, at 8 months old.
“When he was first diagnosed, I wanted to scream it as loud as I could for everyone to hear,” Hubbard says. “I put information out there hoping my friends could see what we were going through and understand what was going on.”
Hubbard wanted to spread the word and encourage prayers without making her Facebook page public, so she created the Facebook Group “Prayers for Baby Noah,” which now has more than 690 members.
“We post everything we are going through, sort of as a scrapbook. We have it set up to print out copies, so that we can keep them for Noah. He’s not going to remember any of this, but he’s going to have scars. We want him to know the stories that go with the scars,” Hubbard says.
The good and bad
In the 2011 book, Inconceivable, Carolyn Savage chronicled her pregnancy and its challenging complication. Savage, who had become pregnant by in vitro fertilization, was implanted with the wrong embryo – and carried someone else’s baby. The publisher required Savage and her husband, Sean, to keep a blog after the book hit the market, so fans could connect with them online.
Savage was still blogging about her family under the book contract when her son, Nicholas, was born in November 2014. Shortly after his birth, Nicholas experienced several bouts of respiratory distress and ended up at University of Michigan’s Mott Children’s Hospital in Ann Arbor, where he was eventually diagnosed with primary ciliary dyskinesia, a rare genetic lung disorder.
“When I was on Facebook, Instagram, Twitter or whatever and I would see people asking for prayers or thoughts for sick children, I always wondered, ‘Does that really do anything for anybody?’ But when we were on the receiving end of that, I can’t tell you how powerful that was,” Savage says.
Even though the Savages had gained attention through their medical mix-up and subsequent book, Savage says that sharing about a medical journey, whether in person or social media, draws attention to the family – and that can come with its ups and downs.
“We had a nurse caring for Nicholas that had been reading our blog before we got to the hospital,” Savage says. “It’s almost like there is a morbid curiosity to it. It’s sort of like cyber rubbernecking. They are watching a drama play out in real life and in real time.”
Karen Hines experienced the pros and cons of sharing her daughter Cassie’s story in such a public forum.
“We saw a lot of value, true value, from sharing her story and asking for help,” says Hines. “I don’t really know how we would have managed it. I was able to stay home in the beginning of her journey, but things were hard.”
She says a longtime friend read her story and made their house payment one month, so Hines could spend more time with Cassie and not worry about the money. She says they got help from complete strangers as well. Some of the readers would have an inside track at a certain doctor, which would help them get appointments sooner. Others would send gifts for the family.
“Sometimes we would get cards and gift cards from people we didn’t know. I was shocked. I’ve never been this nice in my life,” Hines says.
There are also those who want to offer their opinions.
“We’d get messages from people that there is some potion in India that cures these things. Or we’d have someone tell us to say this prayer a million times to heal Cassie,” Hines says. “When you throw yourself out there, you do have to understand that it’s not going to be positive all the time.”
Boggs says while she didn’t intend for a large audience to read Caroline’s blog, it really took off after she began posting. The response was a lot of prayers, but others had no idea what else to do.
“A lot of people were/are praying for us. We are forever grateful. I was very fortunate to not receive much unsolicited advice,” says Boggs. “However, I think this was because people didn’t know what to say to me. Therefore, believe it or not, people didn’t say anything, which was almost worse than unsolicited advice or saying the wrong thing.”
One of the hardest things Boggs says she heard from people was that maybe her baby would be fine.
“I often feel (and felt during my pregnancy) that people would say that perhaps a miracle would happen and she would be OK. Only God knows. While I believe in God and I know that miracles can happen, I was also realistic. I know the statistics. I did my research. I watched babies pass away in utero, at birth and shortly after birth. I knew what I was stacked up against and it was very frustrating when someone would say ‘Oh, you never know. She may be OK,'” Boggs says.
All of the mothers found community in the cyber world of chronic or terminal illnesses.
“I connect with other people who get it. Through the Internet, I have a lot of friends out there now whose kids have cancer. These people relate to what I’m going through and give me encouragement,” Hubbard says.
With social media, Hubbard says she is able to celebrate the milestones of her son Noah and virtually cry on the shoulder of other cancer parents when things are overwhelming. She says the relationships go beyond a Facebook page, and Boggs agrees.
“I remember sitting in the parking lot at Costco after scrolling through my Facebook newsfeed and reading that a baby I had followed religiously had passed away. I couldn’t stop crying,” Boggs says. She adds that the relationships she has made online have also helped her learn enough to be an effective advocate for Caroline.
“Social media has been a huge support to me. I chose our doctors because I connected with other families in Michigan on Facebook who referred me to doctors who treat their children. I have made great online friends through Facebook who I hope to meet one day. We will message each other with questions, we pray for each other and share our trials and tribulations. I am a member of several closed Facebook groups that are trisomy-specific. These groups have been more helpful than any doctor,” Boggs says.
Beware the overshare
Carnigee Truesdale-Howard, a licensed clinical psychologist at Beaumont Hospital–Royal Oak, works in the divisions of pediatric hematology/oncology and gastroenterology. She sees parents writing about their child’s illness as a positive outlet for the information and emotions.
“There are a lot of benefits for parents to write about what they are going through – including information sharing and coping,” says Truesdale-Howard. “Having a sick child is incredibly overwhelming for families, because it’s a lot of information thrown at you. To some extent, families are in shock and have a form of trauma.”
While she encourages parents to share information and their experience, Truesdale-Howard also has words of caution.
“This isn’t a paper journal that you can burn or shred. You may not know what the child will want shared later in life,” Truesdale-Howard says. “The blog should keep the focus on the parent experience and not share the private information that the child may not want shared.”
Truesdale-Howard encourages parents of older children to include them in the writing process. This is something Karen Hines did regularly with Cassie.
“I typed the blog out and ran every one of them by her for her approval,” says Hines.
Truesdale-Howard says it’s important for parents to consider the long-term impact of what they write. With employers often looking up job candidates, it’s possible they could come across the blogs or social media posts about the illness the candidate had in their childhood.
“Some kids get older and might want to keep that part of their life private. They don’t want to be known as the kid that had cancer,” Truesdale-Howard says.
Savage says she thinks about her young son and his medical journey, but she also envisions him as a sixth grader – and the bully who comes across her blog and uses the story as material to tease her child.
“We got ourselves into a bit of a pickle with Nicholas. We know it’s a lifelong condition, but he’s not even a year old. I don’t know how he’s going to feel about me sharing things about his condition,” Savage says. “I want people to know about primary ciliary dyskinesia. I feel called to tell people about PCD, but there aren’t stories on my blog about raising my kids. You have to be really respectful and careful.”
Another rule all of these mothers have: Tell family first.
Hubbard has several older children who are very involved in Noah’s care. They always know about updates on his condition before any of it is posted on social media.
“The other kids have known everything from the beginning. It’s better to be honest than have them hear it from someone else or read about it on social media,” says Hubbard.
Karen Hines says that even when Cassie went into hospice care, the family didn’t post anything until grandparents, siblings, best friends and Cassie’s boyfriend had been told and visited her.
Each of the mothers say they wouldn’t change their decision about sharing their stories on blogs and social media.
“Writing was a therapy then and it continued to be for a while after Cassie died,” says Hines. “We were really lifted up by a community of people. It really made a difference for us as a family. It does feel really good to know that you are loved and cared for.”