Four months ago, our 15-month old daughter underwent a second surgery at Gillette Children’s Specialty Healthcare to complete the tissue expansion and removal process of her large-sized congenital nevus. Recently, Kendall had another follow-up visit with her surgeon, Dr. Robert Wood.
When we met with Dr. Wood at 3 weeks post-op, he explained that Kendall's biopsy revealed both congenital and sebaceous nevus--a rare compound nevus.
The biopsy also showed that while one of these nevi were completely removed, there were still remaining cells of the other--meaning the possibility of pigmentation reappearing and the necessity to repeat the entire process.
But I felt overcome with this huge sense of PEACE--a peace that has been a part of the healing process over the past four months. Although I had hope that the nevus cells would not return, I mostly prayed that GOOD THINGS would come out of her situation and that we would make the most of whatever came our way.
Having a child who requires on-going medical attention and surgery has made me more of a realist in this area. I no longer attended doctor's appointments with the expectation that my kids are healthy--something I used to take for granted.
Healthy children are a lot of work. Adding the additional time, stress and expenses that go along with caring for a child with medical needs is a lot to manage on top of EVERYTHING ELSE you are managing as a parent.
I learned to focus on doing the next best thing and to take things one step at a time.
So when we drove to Gillette Children's, I was prepared to hear what this next step would be.
After examining her scalp and scar tissue, Dr. Wood told us HE DID NOT SEE ANY NEVUS PIGMENTATION. He told us that she looked great and we wouldn't need to see him again until February.
An entire 8-month period with no hospital visits? Awesome.
No more medical bills? Hallelujah.
A healthy child? Praise God.
It’s still sinking in.
Once Kendall reaches the one year post-op mark in February, whether or not the nevus cells have returned should be a done deal.
Dr. Wood also told us that we’ll likely want him to remove some of Kendall's scar tissue that has stretched, which would be a scar revision surgery at some point next year. If left alone, this could potentially become a noticeable bald spot, so we'll trust that he can help sister out with this. No hair will grow on the 8-inch line of scar tissue, but with a full head of hair, this should not be an issue for her.
As relieved as we are to have a positive check-up, we will miss not seeing the wonderful craniofacial team at Gillette Children’s. I remember going in for Kendall’s first expansion and being terrified of all the unknowns--Will the injections be painful for her? What will she look like? Is this going to be traumatic for all of us?
That is when we met Martha, Katie and the wonderful staff who put to rest all of our fears and concerns about what the 18-week tissue expansion process would be like. I felt that they cared for Kendall like family--answering my endless, repetitive questions with patience and always making our daughter’s health and well-being their first priority.
I left that first expansion appointment knowing WE COULD DO THIS.
When we first met with Dr. Wood and he explained to us the tissue expansion process, Kendall was just 6 weeks old. Slowly, brick by brick, stress was added to our everyday life until FINALLY, on February 11th, these bricks began to slowly disappear.
It is a freeing experience to have this weight removed. I'm thankful that Kendall will never know what it's like to carry the burden of this process, and I'm grateful for the medical team at Gillette who continues to make this journey a success for everyone.