Swimming for Beginners

Written by Katie Kelly in honor of her brother Joe

K and J

Everyone knows the situation when a parent introduces his/her child to a friend who hasn’t seen the child in years. The friend says, “Oh you’ve gotten so big!” and the child simply smiles and nods in response, lost for words to reply. My mother has a lot of friends, meaning a lot of smiles and nods to virtual strangers were portrayed on my part. I carry this frequently recurring experience to remember a very important lesson my mother taught me: you can only make a first impression once. So I now find myself in this situation again–talking to virtual strangers, mothers and fathers and adults alike, trying to make a good first impression. This time, however, I will not just smile and nod and be polite. This time, I am going to tell you a story about a boy who loved math, pie, and football.

Joe was an anomaly. No matter who he was with or how old he was, he was different from all who surrounded him. Joe had a calm demeanor in all situations, despite the chaos spinning around him. He was a cornerstone to rely upon in a storm, a firm hand to hold in times of need. Joe’s deep blue eyes held wisdom from years and years beyond his physical existence. Everyone could find a companion in this lumbering, soft giant. Joe possessed such sincere and profound kindness, one often questioned how old this kid actually was. Despite all of the beautiful things that created his character, Joe was diagnosed with brain cancer in 2010. Was it fair? Of course not. Was he, of all people in the world, supposed to be punished with the burden of illness? Absolutely not. But, opinions do not change fact, and my family did not have the power to change our reality. Not once did Joe cry out “Why me!”No. He took this crushing blow in his lumbering stride and continued on. His strength never wavered, his deep blue eyes never filled with tears. As death eventually parted the two of us, I have memorialized my brother. In death we are granted this privilege, to glorify our loved ones in only a positive light, but this brilliance does not always cast sunshine onto the lives of the living. Often dark clouds and spontaneous rainstorms are cast upon us, and it is with the guidance of others and faith in ourselves that we swim through the floods of rain to reach land, to reach solid ground to plant our feet upon.

The only pearl of wisdom I offer parents about enduring this great, immense mass of water is that everyone swims differently. The power of the current may be relentless, but as long as you kick your legs and move your arms, you are making progress. It is not the job of a lifeguard to instruct those in the water how to swim and deal with the onslaught of waves that come their way, it is the job of the lifeguard to throw in a life preserver or provide assistance when someone is struggling to keep their head above water. I may prefer the butterfly, you may like to backstroke, another may enjoy the dog paddle, but we are all swimming with the same goal–to reach land. In times of sickness, death, and trying, it is the role of parents to be the lifeguard. Watch over your swimmers in the water and provide assistance when necessary, but you can’t carry them to shore yourself, then they will never learn how to survive the rough waters on their own. Provide your children whatever resources, tools, or outlets necessary for them to cope with the grievances they are facing.

So, here I am–a life preserver, or, for those who are just getting their toes wet, those little inflatable wings you slip on new swimmer’s’ arms. I am a vessel, an option, a tool to anyone who needs help staying above water, or just wants someone to chat with as they float along. Let your kids decide how they want to swim, who they choose to swim with, and once in a while, throw them a life preserver or two.

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!