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.

HuskyTHON Hits Home for Student Dancer and Former Patient

nicki-in-hospital-photo-1For the last 15 years, Nicole “Nicki” Cartier has had a close relationship with Connecticut Children’s Medical Center. She describes Connecticut Children’s as a “home away from home,” which makes perfect sense considering the amount of time she has spent there over the years, and the connections with staff she has made along the way.

She was first brought to the emergency room in March of her kindergarten year with what seemed like the flu.  Nicki’s parents thought they would be in and out of the hospital with a quick check-up and prescription for antibiotics. After doctor’s examined Nicki, they realized she was much sicker than anyone originally anticipated. A polyp in her intestine burst, causing an extremely rare bacterial infection to spread throughout her body. She was rushed into her first emergency surgery, which lasted 22 hours. Doctors described her situation as “one-in-a-million” and worked relentlessly to stabilize Nicki, as she returned to the operating room daily for two weeks.

After she made it through her first few surgeries, doctor’s informed her parents that there was still a very long road ahead. Nicki spent the next five months in the Pediatric Intensive Care Unit at Connecticut Children’s on life support as doctors continued to work to repair damages from the initial infection. Nicki lost a kidney, two thirds of her diaphragm, upper leg muscle and lower back muscle. When she was finally strong enough, doctors were able to take her off some of her medications and move her to a recovering inpatient floor. She worked countless hours with physical and occupational therapists to regain skills such as talking, eating, sitting, standing and writing. Day by day Nicki worked to get better in hopes that one day she would be able to go home and return to a more normal life. After 225 consecutive days at Connecticut Children’s, she was able to go home.

nicki-in-hospital_photo-2Spending seven months in the hospital is not something that the typical five-year-old will ever have to deal with, but Connecticut Children’s was there when their help was needed. As a result of losing muscles in her leg, Nicki should not be able to walk, but through physical therapy, and lots of hope, Nicki was able to train other muscles to compensate for it.

“My experiences at Connecticut Children’s were some of the toughest parts of my entire life and I wouldn’t wish that upon any other child, but it has also changed my life for the better and changed my whole perspective on life, which is something I am incredibly grateful for. Every day is truly a blessing,” Nicki said.

Nicki has stayed very connected with staff at the hospital since her discharge. Through the years of follow-up surgeries and physical therapy, Nicki and her family are always looking for ways to give back to Connecticut Children’s and she has shared her story at numerous fundraisers to benefit the hospital. “They saved my life and the only way I know how to return the favor is to spread awareness of the amazing work they do there, in hopes of other little boys and girls being able to receive the same quality care I received when I was sick,” Nicki said when asked why she gives back.

In 2007, Nicki was selected to be the Connecticut Ambassador for Children’s Miracle Network Hospitals where she was able to attend a nationwide seminar filled with children from every state who were also advocating on behalf of their local children’s hospitals. This was the first year that Nicki was invited to attend her first HuskyTHON. When looking back at her first HuskyTHON experience, Nicki recalls “As a 10-year-old child, I felt like a rock star having hundreds of college kids cheering for me and raising money for kids like me.” Growing up was hard for Nicki because not many children understood what she had medically endured, so being able to spend time with UConn students who understood the cause and were so passionate about it made her feel so special.

nicki-and-dr-bourqueNicki never missed a HuskyTHON, and when it was time for Nicki to apply to colleges, UConn was on the top of her list. “Everyone always told me to pick a school where I felt like home. Out of all the colleges I’ve ever visited, UConn, especially during HuskyTHON, was where I felt most at home.” She received her acceptance letter three days after HuskyTHON in 2014 and put in her deposit to attend UConn that same day.

Freshman year, Nicki joined the HuskyTHON Management Team, seeing the dance marathon from a new perspective. “Thousands of UConn students have put in countless fundraising hours to support patient like me. It has been amazing to be on the other side and be able to dance in support of other kids at the hospital. I know exactly what they are going through and that just pushes me to work harder to make the event even more successful year after year.” She has made lifelong connections with other families from the hospital, and HuskyTHON is the one event every year that brings them all together.

Nicki continues to be an inspiration to her peers. “It has meant the world to me to see so many other UConn students become so passionate about something that has been such a large part of my life. I’ve had an amazing success story through Connecticut Children’s and it is such a great example of the amazing things can be done there.” This year’s event will be Nicki’s third HuskyTHON on the Management Team.

nicki-1-huskython-photo“The amount of money we have been able to raise is incredible, but what inspires me to keep going is seeing the way it has made such a positive mark on the UConn community. It is amazing to be able to say I was a part of making that happen.” Nicki continues to be amazed at the time students put into making the event a success, even if they have never personally received care at Connecticut Children’s.

HuskyTHON’s success is a reflection of the dedication students at UConn have to making a difference in the lives of kids in Connecticut. “College is a time for making lasting memories, and for so many of us, the best memories have been at HuskyTHON because it has allowed us to use our energy to make a difference and together we have been able to do something incredible.”

 

 

Braver. Stronger. Smarter.

“Promise me you’ll always remember: You’re braver than you believe, stronger than you seem and smarter than you think.” ~ A.A. Milne

quoron-image

In honor of National Winnie the Pooh Day, patient Quoron Walker reflects on his inspiring journey and shares what the famous A.A. Milne quote now means to him as a cancer survivor.

Many times, strength is something you don’t realize you have until it’s put to the test.  I didn’t realize how strong, brave, or smart I was until I was diagnosed with osteosarcoma (bone cancer) at 19 years old.

I was in the prime of my life: studying Communications at the University of Hartford and was a budding singer/songwriter.  When I was diagnosed it felt as though someone had snatched me from my existence.  At the same time the world around me kept going, and seemed to be moving fast.

One of the toughest changes to accept was that many of those who I thought would be by my side as I fought cancer vanished.  There were times when my spirit was very low and I was extremely lonely.  I still had my mom, brother, uncle, grandmother, and my good friend Krystal to support me, so I never was truly alone.

I remember at one point my entire body was covered in blisters after a horrible reaction a chemo drug.  The pain was excruciating and it looked even worse.  One of the scariest moments during my year long treatment was the limb salvage surgery I had to remove and replace my my left femur where the cancer originated.

I didn’t know what to expect, but I made it.  I continued chemotherapy while doing intensive physical therapy.  Looking back, I don’t know how I did it.

The main thing that kept me going was my faith.  God had been by my side through it all, and still is.  I always saw myself on the other side of cancer being healed and continuing my life where I left off.

Many people I’ve come in contact with after I was diagnosed have said I was strong but I thought I was just doing what I had to do in order to live.  I didn’t realize I was different until I sat back and thought about others who had lost their battles with cancer.

I learned that true bravery isn’t acting like everything’s okay and that nothing upsets you; it’s facing adversity in spite of your fears.  True strength is getting up everyday knowing that there is something bigger than yourself that controls everything.  And being smart is knowing all of this while being honest with yourself.  It’s knowing that some days will be great, some may be horrible, but you make that day the best you can by making the best decisions you can in that moment.

After beating cancer twice, having several surgeries, and being on what felt like a roller coaster ride that knocked the wind out of me – I’m healed. I look like myself again and have accomplished so much in spite of my illness.  I graduated with honors, found a job in my major, and continue to sing and perform. I learned about myself and I know Quoron.  Now, whatever may come my way, I know I can handle it.

Photo Courtesy – Norman Oates/Norman Oates Photography

Courage, Heart and Brains…Garrett’s Story

By Dr. Kristan Pierz, Medical Director of  the Center for Motion Analysis at Connecticut Children’s

garrett-2

Garrett Molinari is the epitome of courage, heart and brains, the theme of Connecticut Children’s upcoming 20th Anniversary Gala. Since he was born, this inspiring young boy has undergone 4 surgeries and various procedures, received numerous diagnoses and is currently treated by multiple specialties at Connecticut Children’s. All the while, Garrett remains strong-willed, dry-witted and positive in the face of adversity.

In 2006, Garrett went into septic shock from strep and attained a heart infection that spread throughout his body and to his brain. After his heart valve replacement he was placed on an anticoagulation treatment which resulted in his brain hemorrhages. He underwent brain surgery to relieve the pressure and though the surgery was effective, suffered a stroke in the left occipital lobe of his brain which has left Garrett unable to see anything to his right.

garrett-1Just two years ago, Garrett received an unexpected diagnosis of Crohn’s Disease. His mother, Dr. Kristan Pierz, Medical Director of the Center for Motion Analysis at Connecticut Children’s Medical Center, recalls her son’s very words after receiving the shocking news.

“I remember him once saying, I can handle my heart issues, I can handle my brain problems, but I can’t handle Crohn’s.’  Fortunately, he has learned how to handle that too.  He has a dry sense of humor and jokes about his luck.”

But just as he always does, Garrett overcame and conquered. Now 12 years old, he continues to showcase his bravery, managing his health conditions with a smile on his face and warmth in his heart.

garrett-3“Our family has relied a lot on our faith.  We are blessed to have such supportive family and friends.  When Garrett was in the hospital and we weren’t sure if he would survive, our friends & neighbors quickly put together a “call schedule” to see who would be available each night to pick up our other son Ryan from daycare & make sure he was safe.  My work partners pitched in to see my patients.  Everyone rallied to support us and we are forever grateful.”

 

To learn more about Connecticut Children’s Gala, please visit http://connecticutchildrensfoundation.org/gala or browse the online auction at https://connecticutchildrensgala.auction-bid.org/microsite/. 

Strength for Samuel

By Allison S.

strength for samuelMy son Samuel, was born last summer and diagnosed at birth with Osteogenesis Imperfecta, type 3. He was born with four fractures and spent the first month of his life at Connecticut Children’s Medical Center undergoing testing, surgery, and infusions.

He has already suffered at least ten known broken bones since birth, and has had two additional surgeries. He sees several doctors at Connecticut Children’s on a regular basis being followed mainly by orthopedics, genetics, ENT, GI, endocrinology, neurosurgery, pulmonology and audiology.

Samuel also has kyphosis of his spine and wears a brace for support daily. He struggles with nutrition and as a result has a feeding tube. Samuel also had pretty significant hydrocephalus and had a shunt placed in April. He deals with much more than the average baby but handles each challenge so incredibly well with a smile on his face. He is a strong and happy boy.

We have been very pleased with the care Samuel receives at the Medical Center. He has met wonderful doctors, nurses, PCAs, and medical personnel. Thank you Connecticut Children’s for making a difference in our son’s life!

To learn more about this brave little boy and his inspiring story, please visit the Facebook page Strength for Samuel.

“We Have Found a Family Here”

By Veronica R.

rosario blog photo 2Last year my son was diagnosed with Duchenne Muscular Dystrophy. I started my journey taking a leap of faith and moving to Connecticut. Having heard of Connecticut Children’s Medical Center through family members that live near Hartford, it was as they say “a no brainer.” Having this opportunity, I had to take it. Understanding the outcome of his condition, he needed to be able to have a good quality of life and the opportunity to be as independent as possible.

That’s when I decided to move to Connecticut and seek help at Connecticut Children’s Medical Center.

In 2014, I noticed that my son was having some difficulty standing up and going up the stairs. Expressing my concerns to his primary doctor I asked to be referred to a physical therapist. There I was, told that there was a deficiency in his muscles and she referred me to the MDA Clinic. There he was, tested but the results were inconclusive and required further testing. In September of 2016 his diagnosis was confirmed as being Duchenne Muscular Dystrophy. Now he is on track with his medication and therapies. We have found a family here at Connecticut Children’s.

rosario blog photo 1When I first applied they were not accepting new patients at that time, but thanks to their care coordinators, found a way to receive them. Once that happened everything fell into place. His appointments started coming in, one right after the other. These past 9 months have been full of appointments but it is all worth it knowing that my son is receiving the best care possible.

My experience with Connecticut Children’s has been wonderful. Everyone that we have been in contact with has gone up and beyond what I could have expected. When my kids have an appointment they don’t think or feel like they’re going to a hospital.