Miraculously, she waited just 19 hours before receiving word that she had a matched donor. Noelle’s new liver was the immediate fix she needed, but this fix would not end our journey. Noelle must take lifelong immunosuppressive medicine, which presents in own set of issues. In the excitement of her post-transplant recovery, one of Noelle’s surgeons wisely told us to pace ourselves. This journey would be a marathon, not a sprint, and there would be hiccups along the way.
Eight years post-transplant, Noelle is an amazingly active, beautiful little girl about to start third grade. However, her surgeon was right. There have been countless devastating hiccups along the way that have stopped us in our tracks.
With each hiccup, we experience the always nagging fear that some giant may be the underlying cause... the dreaded “C” or the letters known and feared by transplant families “PTLD”, which has necessitated MRIs, CTs, PET scans, and even a bone marrow biopsy. Even in the healthy periods, which gladly outnumber the unhealthy periods, there are monthly lab draws, alarms set to remind us it’s “meds time”, and trips to a number of specialists.
All the while, Noelle has not traveled this path alone. Her three older siblings have sacrificed, have worried, and have celebrated along with Mom and Dad. Noelle finally got to be a big sister in June of 2015. Her little brother set us on another new path, having arrived with a bonus 21st chromosome, his own set of medical specialists, and a personality that both melts our hearts and keeps us on our toes! Noelle got to feel the concern of a big sibling last July when her brother underwent open heart surgery. Once again, she was a champ, able to talk to her baby brother and big siblings through the scariness of all the tubes and beeping machines.
Now, after years of medical treatments, tests, and surgeries, Noelle has been referred for a wish! I can’t begin to tell you what an amazing blessing this is for her and our whole family. You see, between medical concerns and expenses, we have not take a family vacation since Noelle was born. Though it is early in her wish granting process, Noelle knows she wants a vacation more than anything else! And with this renewed excitement, we figured that it is never too early to start giving back to Make-A-Wish so that other kids like Noelle can have their wishes come true. That is why we are writing this letter at this point in our wish journey.
On Saturday, October 6, 2018, our family will be participating in the 26th Annual Northeast Ohio Walk for Wishes at the Cleveland Zoo, hosted by Make-A-Wish. We encourage your family and friends to take part in this great opportunity by creating a Walk Team.
Come share in the joy of helping make wishes come true by joining our amazing volunteers, donors, and community groups on Walk Day! Help us support the bravest people of them all: our children.
We look forward to seeing you soon at Walk for Wishes!
Danny, Tiah, Jaylee, Tripp, Romagn, Noelle, and Marshall
The Wingate Family