In our first profile of Miabelle, she was happy 3-year-old HLH survivor. Miabelle is still happy and enjoying life with family and friends. Her mom, Vanessa, provides an update.
By Vanessa Gillier, Miabelle's mom
This July will mark the 8th anniversary of Miabelle’s life-saving bone marrow transplant (BMT) following her diagnosis of hemophagocytic lymphohistiocytosis (HLH) in 2011.
After remaining in Cincinnati for a year post-BMT, we continued monitoring at Cincinnati Children’s for graft-versus-host (GVHD) and / or any other complications. With the regeneration of her immune system, we were finally given the “all-clear” to return home to New Jersey.
We settled back into a day-to-day life, free from medications, surgical procedures, follow-up visits, but we never stopped looking over our shoulder. We’d read all the stories of the dangers that lurk following HLH / BMT, and struggled with the expectation of something bad lying patiently under the surface, waiting to rear it’s ugly head when we least expected it. So we remained constantly on guard, helplessly waiting for our world to be turned upside down, again.
It was a difficult time as parents to shelve our fears, and re-introduce Miabelle to a “normal childhood” filled with trips and falls, colds and flus, immunization shots and routine doctor’s visits, new friends and classmates, family reunions and hugs from strangers who seemed to know everything about her.
Slowly we began to allow ourselves to stop living in fear, and begin living in happiness. We began to look at the possibility of starting a new adventure in a new land. In retrospect, I think it was our way of taking back the power. We desperately needed to be the authors of the next chapter of our lives, and not unwilling characters in another HLH horror story.
Europe and the Caribbean were at the top of our lists. So we consulted with our medical team in Cincinnati and received their blessing, and we traveled to Puerto Rico to visit our HLH survivor friends. The fond memories of summer’s spent in Puerto Rico with my family as a child, and the thought of my own children getting to have those memories when they grow up, gave Puerto Rico the winning vote.
In August of 2014, Miabelle was granted a wish from the Make-A-Wish foundation as the survivor of a life-threatening disease. Her wish was to go on a “Mickey boat”. The Make-A-Wish foundation granted that wish, and our family had the experience of a lifetime on a 4-day Disney Cruise from Barcelona, Spain. It was a magical experience with both our girls getting to meet and dress up like all of their favorite Disney characters.
Following the trip, we returned to our home in New Jersey, packed up all our belongings and moved to Puerto Rico. Miabelle and her twin sister, Noelie, started Pre-K classes where we were welcomed with open arms, and thus began our new lives in the Caribbean.
We have an amazing local pediatrician, who remains in contact with Cincinnati Children’s and continually seeks out new information and developments in HLH research and treatment. Every July, we make our annual pilgrimage to Cincinnati for a couple of days of medical follow-ups, testing and record-keeping, followed by family fun at the Cincinnati Zoo & Botanical Garden, Coney Island, The Great Wolf Lodge, and King’s Island.
Miabelle has grown from a shy and timid toddler into a fearless girl who everyone seeks out, knows and loves. She is the smallest in her class (likely resulting from the steroid treatments received in preparation for her BMT during that critical age 1 to age 2 growth spurt children typically undergo), so everyone loves to pick her up and, she revels in it. She is currently an A student in the third grade and speaks Spanish fluently. Miabelle has learned to play guitar, ride a bike, swim, ski, skate, fish, bowl, kayak, and dance, among many others. She plays on the school mini-Volleyball team, enjoys cooking and is an avid reader and budding artist.
She was brave enough to tell her HLH story to her classmates in her own time. During a recent salmonella hospitalization, she received an outpouring of love and support from all of her friends. As a parent, it re-ignited our PTSD, but it also reminded us of how brave, strong and beautiful, she has always been. She smiled at all of the nurses and doctors, never flinched or cried when they placed her IV lines or drew blood, pulled her own IV pole around the surgical ward, and kept up with her schoolwork from her hospital bed.
Our family has been blessed with a relatively “easy” post-HLH life, and we have Cincinnati Children’s to thank. Their continued care, advice and support has given our family the ally we have so desperately needed in moments of panic when symptoms resemble those of HLH, or we’re experiencing PTSD flashbacks, or fearing the unknown, as well as the trauma of the known. But Miabelle reminds us daily of how far she’s come.
During our most recent parent-teacher conference, her teachers remarked about how kind and gentle, yet how strong and dedicated she is. She always gives it her all. She draws you in with her sweet smile and caring heart, and leaves you awe-struck when you watch her go up against peers twice her size in sports. She is a brave warrior princess who has weathered more than her fair share. Yet rather than wallow or idly expect, she faces her challenges with dignity, determination and delight.
She has a bright future ahead of her, and we can’t wait to celebrate the limitless accomplishments that lie ahead for Miabelle. She is an HLH survivor, yet she’s so much more, thanks to the dedicated team at Cincinnati Children’s Hospital.