Connecticut Children’s Advocates: Kelly’s Story

Kelly Ray, patient at Connecticut Children’s Medical Center, shares her inspiring story with members of the  Appropriations Committee on February 16, 2017.

fullsizerender-00000005Senator Osten, Senator Formica, Representative Walker, members of the Appropriations Committee, thank you for this opportunity to speak to you all today on behalf of the hospital that saved my life. My name is Kelly Ray, I was born here in Connecticut, I am fourteen years old and a pediatric cancer survivor.

On August 27, 2012, my mom noticed a strange swelling on my left shin and took me in for an X-ray. That X-ray led to a slew of tests and finally, a biopsy of my shin bone to inspect a suspicious lump. When I awoke from surgery at Connecticut Children’s, I was diagnosed with bone cancer: Osteosarcoma, in my left tibia.

Dr. Michael Isakoff, (also known as Dr. Mike) my oncologist at Connecticut Children’s, explained that I would need almost a year of intensive chemotherapy, that I would lose my hair and that I’d have to spend over 120 nights in the hospital and have 5 surgeries throughout the course of treatment.

No one likes to be sick and no one ever wants to have to be in the hospital. But, there’s a
difference at Connecticut Children’s. Connecticut Children’s knows what kids need to get
through the very long and difficult treatments that are required to save their lives.

As I underwent the often painful and exhausting treatment, they always tried to make me as comfortable and happy as possible. I spent most of my inpatient time at Connecticut Children’s on the eighth floor. All of the rooms at Connecticut Children’s are clean, bright, spacious, private, family friendly, and had an extra couch/bed or cot for a parent to stay overnight.

fullsizerender-00000007The amazing thing about Connecticut Children’s is that even though they are so good at making kids feel comfortable, they are even better at healing them and making them well. We are so blessed and fortunate to have this amazing hospital in our state.

Other children come from all over the Northeast to get cancer care in Connecticut. Doctors bring their children to Connecticut Children’s because the care is outstanding, and the services, technology and facilities are state-of-the-art.

In November of 2012, my left leg was amputated to ensure that all of my cancer was gone. This was a day that changed my life forever; however, not in the ways I had originally expected. My team at Connecticut Children’s helped me get back onto my feet quickly. Thanks to my fantastic doctors, physical therapists, and nurses at Connecticut Children’s, I began to take my first steps in a new direction as soon as I could.

I finished chemotherapy in May of 2013, and since then, with the help of Connecticut Children’s, I have skied, surfed, biked, ran, swam, sailed, and done things I didn’t even know were possible.

fullsizerender-00000002Thanks to the fantastic care I received at Connecticut Children’s, I am able to live a life filled with amazing experiences. Dr. Mike and the rest of the team at Connecticut Children’s not only saved my life, but when they gave it back to me, I discovered that it had been enriched and that I could live without limits.

Once again, I thank you for allowing me the opportunity to speak with you about my experience at Connecticut Children’s Medical Center. By making children well in our state, Connecticut Children’s continues to provide the world-class care that is critical to Connecticut’s future.

As you consider your priorities in planning your budget for the coming year, please remember the financial needs and good works of the incredible hospital that saved my life and the lives of so many other children in our state and the Northeast.

Thank you.

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.”

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

Kids Helping Kids: Christopher’s Toy Drive

 Becky, shares her son Christopher’s inspiring story and why he wanted to give back to fellow patients at Connecticut Children’s this holiday season. 

img_0708We brought Chris to the ER in January 2015 after he was unable to walk. Doctors found a tumor on his spine which began a whirlwind of scans, needles and a hospital stay that, at the time, we didn’t know how long would last.

The one thing that Chris could look forward to and that we could use as a reminder to get through the next procedure, chemo or scan was the prize box and toys he received for being so brave. Kelly and the rest of the staff at Connecticut Children’s Medical Center were instrumental in helping us through one of the toughest times we have faced as a family and one way we felt we could thank them was by giving back.

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Last December, I wanted Chris to give back to the hospital in a way that was meaningful for him and something that was feasible to do year after year. He decided that a toy drive was a good idea because he always looked forward to getting a toy at the end of his visits. He wrote his letter and made a list of family and friends that he would like to ask and send his letter. After the toys were donated, he wrote thank you notes to those who donated to show his appreciation. He did the same thing this year. (Now that he is in first grade, his letter was done much more independently!) He added several people to his list and those that he asked were so excited to help him.

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The best part is seeing the excitement on Chris’ face when he looks at the toys people donated as well as when he was giving the toys to Kelly. We hope to continue this each year and that it gets a little bit bigger to be able to make even more kids smile. We are so proud of Christopher for wanting to continue this tradition and for being able to see the importance of giving back!