Rowan Kilkenny

First post: Dec 14, 2020 Latest post: Mar 7, 2022
A few weeks ago Rowan, our ten year old daughter complained of some pain and swelling in her mouth related to an orthodontic expander she had been fitted with. It was subsequently discovered that Rowan has a rare condition called Juvenile Ossifying Fibroma, that is an aggressive tumor that has eaten into the bone on the right side of her upper jaw.

The good news is that based on the biopsy it appears to be benign. However, unfortunately to remove the mass they will need to remove a portion of her right upper jaw and graft bone from her leg to rebuild the jaw. She will lose the teeth there, and permanent implants won’t be possible until she is done growing. There will be a team of surgeons, Dr. Buchbinder and Dr. Taub, one for removal and another for reconstruction.

The surgery is scheduled for 8am on Monday 12/14, at Mt Sinai Kravis Children’s Hospital in New York City.

The surgeon said she will be swollen for weeks and possibly longer and that recovery will take time and that there will be many other stages to the reconstruction over the coming months and years. We had a final meeting with the reconstruction surgeon and a social worker a few days ago that Rowan was part of.  So she knows, to the degree that she can, what is happening and what to expect when she wakes up from surgery...but nothing can prepare a ten year old fully on how to process this all. The hospital has a team of child care specialists that are assigned to Rowan to provide her and us the emotional support we will need during her time in the hospital. She is very frightened but also amazingly a bit curious about the whole process.

If it resonates with you, I would ask you to please pray for Rowan, and for Elana and I to be guided to make the right decisions for Rowan and for our family to be strong for her as we go through this.

We will do our best to post updates about the surgery, how Rowan is doing and how to best support Rowan and our family during these challenging upcoming weeks and months.

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