The Road to Diagnosis: Anthony’s Story

received_825234961033It has been a long and winding road for the Greco family. After numerous diagnoses, their son Anthony finally learned what had been causing his pain and suffering…but getting to this point was not easy. After visiting his local pediatrician in February of 2016, Anthony was originally diagnosed with tension headaches; however it would all turn out to be much more.

The headaches slowly became more persistent and Anthony soon began experiencing additional symptoms, like vomiting and fever. Anthony’s mother Danielle rushed him to their local ER, where a CT scan would show that all was normal…but that night would tell a different story.

“Anthony awoke with pain throughout his body, one-sided paralysis and was unable to speak. Thinking he was having a stroke we called 911 and went back to the ER, where he saw neurology and was diagnosed with a hemiplegic migraine. Various medicines were given that weren’t touching his headaches, helping his vomiting, nor alleviating his new onset of eye pain. We were beside ourselves.”

After undergoing a spinal tap in June, Anthony was diagnosed with meningitis and immediately rushed to Connecticut Children’s Medical Center.

“A whole slew of tests were done and many consultations with many different doctors. Nothing was adding up. All blood tests and cultures were normal. The normal meds given for meningitis weren’t taking it away, but he was feeling better” recalls Danielle. “An MRI was done and showed increased intracranial pressure – a whole lot of fluid buildup on his brain and spinal canal. It was then deemed that the reason he was feeling better was because the spinal tap took away some of the fluid that was pressing on his central nervous system and causing all these issues.”

Anthony was then diagnosed with HaNDL, a rare headache disorder. For the next month, he would have no episodes, until mid-July when all his symptoms would return. “The headaches, vomiting, severe eye pain, paralysis and speech difficulties all came back. He was sent for another spinal tap. Issues alleviated again until a few weeks later, when his episodes and symptoms returned. We again went for another spinal tap, but this time his white blood cell count had sky rocketed.”

Anthony was once again rushed to Connecticut Children’s and it is here the Greco’s would finally discover what had been causing his symptoms all along.

img_20161125_122951“Our Neurologist brought Hematology and Oncology on board. A spinal tap and a cytology of the fluid was done on August 24, 2016. The next day we were informed that Anthony had cancer of his central nervous system. A cancer called B Cell Lymphoblastic Lymphoma…

Anthony has been receiving treatment with the Center for Cancer and Blood Disorders since his diagnosis and we couldn’t be happier with the care he has received. A month into treatment all cancer cells were gone. He unfortunately has to endure a total of 2 1/2 years of chemotherapy to keep the cancer away. Had it not been for the doctors at Connecticut Children’s Medical Center, I really don’t know where we’d be right now. They stopped at nothing to find out what was going on with our son. To them, we are truly grateful.”

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