Meet Bo & Chloe
“He’s not just a sick baby in a bed—he’s Bo—who loves to sing and dance, loves watching Ferdinand and Tangled, enjoys eating fries, French toast, and scrambled eggs, and has a sister who is his best buddy.”
Tell us about you and your family
We are the Briggs family. Lance, Chloe, Naomi (4) and Boaz “Bo” (2).
What illness was your child diagnosed with?
Bo was diagnosed with AML (Acute Myeloid Leukemia) in April of 2019 at 8 months old. Bo received 4 rounds of chemotherapy and a bone marrow transplant.
What did you feel and experience learning the diagnosis?
We were devastated. Our lively, joyful 8 month old baby boy whom we thought was healthy was fighting for his life. I felt like I had been hit by a truck—when the doctor came into our ER room and told us that Bo had leukemia, I couldn’t believe what I was hearing. Up until that point, we naively didn’t realize that babies could get cancer just as anyone else could. Surprisingly, I didn’t cry in the moment. I’m a worst case scenario thinker, so my mind had already wandered down the road of a serious diagnosis. Once my worst fears were confirmed, all I wanted to know was what the plan was.
“Instead, for the next 8 months, they predicted we’d spend 6-7 of those months in a hospital room. That meant we would be living apart from our daughter who was only 3 at the time, which devastation on top of devastation. So many things about long term hospital living is hard and I was not prepared for it. ”
What surprised you along the journey?
I was surprised by how quickly Bo was diagnosed and how much of his treatment was inpatient. I feel like many diagnoses come after several weeks or months of testing, but for Bo, it was clear through a simple CBC drawn in the ER. Of course he had more tests done to narrow down his exact type of leukemia, however they knew without a doubt that it was leukemia instantly. When his team shared what treatment would look like, I was shocked. I had assumed that he’d go in to a clinic for chemotherapy infusions or take some oral chemo from home. Instead, for the next 8 months, they predicted we’d spend 6-7 of those months in a hospital room. That meant we would be living apart from our daughter who was only 3 at the time, which devastation on top of devastation. So many things about long term hospital living is hard and I was not prepared for it.
“We both balanced working, albeit reduced schedules, but that was challenging —finding the mental energy to work on top of caring for Bo and looking out for the needs of our daughter who was at home with grandparents. ”
What did you struggle with along the journey?
I really struggled with the unknowns of the journey—I still do. Will the treatment be effective? Will Bo fully recover from treatment? Will he be able to catch up developmentally? Will he be able to have children someday? I also struggled with our whole life being turned upside down. We lost any semblance of routine or normalcy in our lives. My husband and I shared a full size pull out bed for 5 months and slept head to foot in order to fit. Neither of us sleep longer than a 2-3 hour stretch for Bo’s entire treatment. We spent 6 months in a room that was under 200 square feet. Bo had so much more screen time than I ever could have imagined. We had no privacy whatsoever as nurses and doctors need to be able to come and go. We had a challenging time getting Bo on a good sleep schedule. We both balanced working, albeit reduced schedules, but that was challenging —finding the mental energy to work on top of caring for Bo and looking out for the needs of our daughter who was at home with grandparents.
What did you become an "unexpected expert" in along the way?
Advocacy. I am a non-confrontational person by nature, so it was very challenging for me at first to speak up when I knew something wasn’t right, to ask questions, or to fight for what I felt Bo needed. I am Bo’s best advocate—I notice even the slightest change or when something seems even a bit “off”. Once I realized that I was an integral part of Bo’s care team and that they relied on me to keep them upraised of the small things I’d notice, it empowered me to own that role. Sometimes I’d need to push harder to have something taken seriously, but many times I was met with interest and compassion.
What might people not understand about your experience?
Now that we are over a year post-treatment, it’s easy for people to think that cancer is in our past, but sadly, it’s very much not. We still have years of appointments, years of unknowns. Emotionally, we are healing. PTSD for caregivers of seriously ill children is very real and I am actively working through that and expect I will be for years to come. I was told recently “I know you had a hard year, but….” as if I should have moved on by now because Bo is doing well, but that’s just not how it works. I wish it were that easy. I am optimistic that someday things won’t feel so fresh and heavy—time really is a healer, but for now, cancer is not in our past, as much as I wish it were.
What you learned & how you found comfort
“People from all over the world sent messages of support and prayers. We found so much comfort in the encouragement of our community.”
What or who brought you comfort in your journey?
We were very fortunate to have a large network of support throughout our journey. There wasn’t a single moment where we felt alone. We have a strong faith and our church community surrounded us. My community from my childhood rallied around our family even from thousands of miles away. People from all over the world sent messages of support and prayers. We found so much comfort in the encouragement of our community. We also met so many wonderful people through our time in the hospital—really special people whom we would have never met otherwise. Many of these people have become close friends as they are able to understand our journey from a different and unique perspective having either walked a similar one themselves or walk alongside families day in and day out through the care they give. Some are fellow families of patients and others are nurses, doctors, and hospital staff.
What or who brought your child comfort in their journey?
Bo found comfort in having his sleep sacks altered so that he could continue to have that familiar comfort for sleep while still being able to be connected to his IVs round the clock. For many babies, Bo included, part of getting good sleep is having a consistent routine which for Bo, included being zipped up in his sleep sack. When we realized that the zipper up the front of his sack wouldn’t allow for him to safely use the sack while being connected to IVs, we knew we needed to adapt the sack. We didn’t want to wean him from something that brought him comfort if there could be a solution. Thanks to my mom and her sewing skills, we adapted Bo’s sleep sacks to safely work for him, his IVs, and his care team.
“It is easy to get burned out and feel isolated as a caregiver to a medically fragile child, and finding people who understood was really important for my own journey and perseverance. ”
What support did you need that you struggled to find?
When Bo was first diagnosed, I was desperate to connect with other parents who had walked this journey. Our wise social worker cautioned me not to seek that out too quickly only because it’s very easy to personalize someone else’s journey, especially when you’re feeling emotionally fragile. I am so glad I heeded that wisdom, however it was lonely not having any connection to others who could understand things from the perspective of a parent. However, about 6 months into Bo’s journey, we were connected with other families and it was incredibly life giving. It is easy to get burned out and feel isolated as a caregiver to a medically fragile child, and finding people who understood was really important for my own journey and perseverance.
How did the process allow you to see your child as a unique individual? What did you learn?
When we were first admitted for my son’s bone marrow transplant, Susan, our Child Life specialist, brought around a blank “About Me” poster. I was supposed to fill it out and send her a photo of Bo for her to print that we could add to it as well. I procrastinated in completing the poster but Susan kept encouraging me to work on it. When she explained to me why it was important, that changed everything. The “About Me” poster wasn’t just a fun exercise to post on our door so fellow patients could know who Bo was. It was a reminder to me of who our boy was and is. More importantly, it showed Bo’s care team who he was. They didn’t know him like we did, and it humanized Bo in a way that was incredibly important. He’s not just a sick child in a bed—he’s Bo—who loves to sing and dance, loves watching Ferdinand and Tangled, enjoys eating fries, French toast, and scrambled eggs, and has a sister who is his best buddy. When we were transferred to the PICU, we brought the poster with us and put it on his door. Things function differently in the PICU. The teams are large and constantly rotating and we wanted to make sure that whoever was on our team, day or night, knew who Bo was. In some ways, by hanging his poster, this was also another way that we advocated for Bo. On more than one occasion, I found myself outside his door reading his poster and reminding myself of who my boy was and who he would one day be again—my heart needed that reminder too.
“Just like we’d make his room at home “his space”, we wanted his hospital room to feel that way too. ”
What feeling was important to you to evoke in the hospital room?
We wanted Bo’s room to be filled with love, joy, and peace. We wanted our care team to feel welcomed in and like a part of our family. This helped Bo to feel comfortable with everyone coming in and out. We also wanted his room to show that a baby lived there! Just like we’d make his room at home “his space”, we wanted his hospital room to feel that way too.
How did you create that atmosphere?
We spent a lot of time on the daybed, so we had suction cup toys stuck to the glass window above the bed that he played with endlessly. For sleep, it was important that our room was peaceful, so we purchased a suction cup blackout shade and used a white noise machine. Susan from Child Life loaned me some battery powered candles that brought some peace and calm to our room. Bo loves music, so we had a Bluetooth speaker and always had something playing in the background. We hung up different artwork that Bo’s sister had made or that we were sent from friends. There were toys everywhere—some things we had been given, other things loaned from Child Life. When Bo turned one, the nurses decorated his room overnight and we left his birthday banner up for over a month!
“Although he was still very fragile, he needed encouragement to move and interact, not lay in bed all day. We both needed the reminder that he was a playful little boy despite his present medical condition. And what a difference it made. ”
What small gestures brought comfort that were unexpected?
Bo spent 3 weeks in the PICU and in that time, regressed developmentally very quickly. At one time, he was almost walking, but after 10 days in the PICU, he couldn’t even sit up unassisted or even lift a tiny object without tremendous effort. Daniella, our physical therapist, would check in with us almost daily to see if it was a good time to start working with Bo. Each time, I found an excuse—it was too much or Bo was finally asleep or it was just a bad time. I remember one day crying as I defensively told Daniella that it wasn’t a good day. She very kindly told me that Bo needed her help and gently insisted that it was in his best interest to find the time for him to get these important services. I still didn’t budge and she left. A few hours later, Bo was awake and calm and our nurse asked me what I thought about calling Daniella to see if she could stop in. I reluctantly said yes. She came by and brought a few toys and worked with Bo and that’s the day everything changed. Bo started improving in every sense of the word. But what was so important about that day was that Bo was reminded him that he loved to play and interact and it reminded me that my baby was still a little boy who needed to play! Although he was still very fragile, he needed encouragement to move and interact, not lay in bed all day. We both needed the reminder that he was a playful little boy despite his present medical condition. And what a difference it made. His physical therapy sessions weren’t easy for him—he usually took a long nap afterwards, but my heart as a mama was always encouraged at the progress I witnessed—he was coming back to life! I am forever grateful for the kind and gently persistence of Daniella.
What is your call to action for our readers?
Being the caregiver of a medically fragile infant is hard. Figuring out what they need to continue to lead a somewhat normal life while living in a hospital is tough.
Having had an older child who had a typical childhood at home, I knew Bo’s first year would look different since we weren’t at home, however I didn’t want that to keep him from developing as normally as possible.
I spent hours and hours researching toys and books to keep him stimulated and worked hard to find ways to adapt our hospital room to feel as close to home as possible. It was incredibly exhausting to do all of that on top of the round the clock care we were giving. I wish someone could have shown me the ropes, reminded me that we weren’t the first to walk this journey, and encouraged me to take care of myself.
Foxbox is important not just for the babies but also for the caregivers. I am so glad that Foxbox exists and I know that babies and their families/caregivers will be loved and cared for through it in big ways—not only in their day-to-day life in the hospital, but also in the way they remember their journey for years to come.
“It is important for people to know what life is really like for the kids and their families living in a hospital.”
