Extraordinary Outcomes for an Extraordinary Little Girl: Isabella’s Story

isabella-1Isabella O’Connell was just 3 months old when her pediatrician noticed ‘cafe au lait’ spots suddenly appearing on her skin. “The spots were appearing at such a rapid pace” said Isabella’s mother, Melissa Kulak. “Thankfully, he referred us to a neurologist at Connecticut Children’s Medical Center.”

Shortly after being referred, Isabella had her first appointment at Connecticut Children’s Division of Neurology, where she met Dr. Francis DiMario. Dr. DiMario would finally provide the answers Melissa had been waiting for…a diagnosis no one could have expected.

Isabella had Neurofibromatosis, a rare neurological condition which occurs in approximately 1 in 4,000 births each year. The genetic disorder can cause tumors to grow on nerve tissues and even on or underneath the skin.

Following her diagnosis, Isabella experienced very little symptoms as a result of her treatments, but in early  2016 that would all change. The 3-year-old began feeling a pain on her side where she currently had a band of tiny spots.  At her 6 month checkup, Dr. DiMario suggested an MRI that would reveal 2 tumors growing on Isabella’s right and left optic nerve.

“From that moment on, we also began seeing Dr. Eileen Gillan of the Center for Cancer and Blood Disorders. Dr. Gillan has been keeping a close eye on Isabella’s condition ever since” said Melissa.

Three months after that first MRI, a follow up would discover a new tumor growing at the base of Isabella’s head – a tumor that was causing her severe hydrocephalus. It was more devastating news that Melissa did not want nor expect to hear.

isabella-2“That 3 month MRI came and our world got flipped upside down. Within a week we had seen Dr. Marcus Bookland of Neurosurgery, scheduled a surgery date, underwent a biopsy and had a shunt placed.”

The procedure was a successful one and Melissa is happy to report that Isabella’s tumors are in fact shrinking as a result of her treatments and medication. She is currently on her third round of targeted chemotherapy. “So far it is working amazingly. We had our 6 month MRI to make sure Isabella’s shunt is working properly and found that her tumors have shrunk quite a bit. She also no longer has any trace of hydrocephalus.”

“In one word I would describe our experience so far as extraordinary. Although, Connecticut Children’s definitely deserves more than one word.”

A Part of Our Family

The Howard family shares a message of thanks to Connecticut Children’s Center for Cancer and Blood Disorders following their son’s last chemo.  

gage-photo-for-blogOur son Gage recently finished his last chemo on September 18th. We would like to thank all of the wonderful staff at Connecticut Children’s Medical Center!

Our world was turned upside down in July of 2013 when we learned that our son Gage had Leukemia.  From the very beginning the nurses on the 8th floor were amazing!  Dr. Andrea Orsey is truly an amazing physician and we cannot thank her enough for what she has done for Gage and our family!

His nurse Barb is hands down the best nurse around!  Gage loves her (as do we)!  I am pretty sure Barb can read minds because no matter what she always knew what to do to make Gage feel better!

These last three years have had its ups and downs.  We are so very happy to say that Gage has finally finished his chemotherapy.  It makes our hearts happy to see him just get to be a kid.  We could not have done it without you Dr. Orsey and Barb!!  You will forever be a part of our family!

Lots of Love XOXO,
The Howard Family

Thank You for Taking Care of Us

By Melissa Wert, a grateful mom

printtherapy-blog-photo_instagram

I snapped this photo moments before Nick took Ryan back into the OR, and held his little hands while his 31″, 27lb body went stiff and he succumbed to the anesthesia gas mask attached to his tiny face.

The patient advocate at Connecticut Children’s was nice enough to smear the mask with grape Chapstick, so that Ryan couldn’t smell the strong gas. It’s amazing what tiny details bring you great comfort when the entire situation feels totally out of your control. This is the face of a small boy who has no idea what’s happening, just that his day isn’t right. No eating. No milk. Anxious parents. A strange place filled with so many strangers, all looking at him.

This is the face of a dad about to bring his baby boy into surgery. Terrified but resilient, counting on the prayer we said in the car as we parked, taking every extra moment we had to not walk inside. Please keep our boy safe. Let him come out stronger, healthier, better.

His procedure was minor, but our fears were large. I’m coming to realize that as NICU parents, the feeling of having your baby whisked away from you with no idea what’s happening next returns to you all too easily. Too quickly. And likely unnecessarily. But it’s always there – the fear. The anxiety. The heartache. It shapes how you parent and who you are as parents. But it also makes you strong. Brave. Willful.

I’m happy to report we’re all back home and little Ryan is happy as a clam, back to his normal self, but with some sparkly new ear tubes we’ve dubbed his “robo-ears”. Thank you, so much, to everyone who prayed for us and sent us your well wishes. They worked.  And an even bigger thank you to the amazing staff at Connecticut Children’s Medical Center for taking such good care of all three of us. #BabyLove #DontForgetDads