I Owe It All to Jamie

By Kurt Knotts, father and Connecticut Children’s employee

JblueblanketOn a Sunday morning in October 2009, my wife Kelly and I looked at our 11-week old daughter, Jamie, and knew we needed to drive to Connecticut Children’s Medical Center. What we didn’t know was how our lives would change forever that day. We didn’t hear Dr. Finck’s words after “liver tumor.” We couldn’t comprehend what Dr. Isakoff was saying was in store for us. We were fortunate that Kelly had taken off a year of teaching to be with Jamie and our 2 ½ year old son Braeden. I was fortunate to work for a compassionate employer, Fuss & O’Neill, who gave me all the time I needed. Not so many families have those luxuries. So we moved into Connecticut Children’s that day with no knowledge of how long we would stay, no knowledge of the world inside those walls.

Over the next three months, Jamie endured chemotherapy, sedation in the PICU, scans, shots, counts, surgeries, and trips to the old 2nd floor clinic. We even traveled to Boston Children’s to begin the liver transplant process. But in the end, even after some hopeful tumor shrinkage, the very rare and aggressive cancer refused the chemotherapy and took over her tiny body. On a cold January Saturday morning, she earned her wings and was called back to her creator.

Through it all, Kelly and I were continually amazed at the care, concern, and compassion of the staff at Connecticut Children’s. They became our family, and we became theirs. We felt a dual sense of loss when we went home that day: saying goodbye to Jamie and saying goodbye to our new family. It drove us to want to give back, to stay connected, and to keep Jamie’s spirit alive.

I had experience managing my company’s golf league and chairing the company golf tournament, and Kelly was an avid runner and enjoyed charity running and triathlon events. We decided to form a foundation and create and all-ages event in Old Wethersfield called Jamie’s Run. With support including Fuss & O’Neill, Phoenix Laboratories, US Environmental Rental, JB Sports, and the Town of Wethersfield, we attracted over 800 participants and raised over $36,000 for the new Clinical Care Center for Cancer and Blood Disorders in our first year. You can see Jamie’s name on the plaque outside the clinic, which makes her parents overwhelmingly proud. She will always have a place there. Over the next five years, working with Robin Vidito and the Foundation team, we have raised over $120,000 for cancer clinical trials and the family assistance fund, in the hopes that no more families have to endure what we endured.

Knotts FamilyAfter a long career in the private sector and a wetland construction project coming to an end, I took the opportunity of having last winter off to volunteer/intern at the Foundation with the events team. I was welcomed early every morning by long-time (now retired) employee, Lucy Sorice, and the whole Foundation welcomed me in the way only Connecticut Children’s can. January through April was a surprisingly busy time, gearing up for the summer’s events and dealing with the unbelievable amount of toy donations in the toy storage building. I helped assist a family that was starting a new trail run in April, Reid’s Run, and immediately made a connection with the mother whose son had also passed away and amazingly shared the same birth date as Jamie. Those experiences furthered my resolve that this was the right decision for me and this is where I belong.

I came to the Foundation to prove to myself and the team that I could translate my diverse skill set to the non-profit world and be a valuable asset to the events team. During those winter months, several team members moved on to different careers, leaving job openings available for motivated, passionate individuals. Now bear in mind that the average Development Coordinator is a 24-year-old female, and I am now a 42-year-old father of two. I wasn’t sure I could rise above the competition. On top of that, my wetland project was starting up again in late April and I had to leave the Foundation not knowing my fate.

But my passion for Connecticut Children’s and the patients and families that support us shined through, and I received the call from HR that I was hoping for. I wrote my first (and hopefully last) resignation letter and began my career as a permanent member of the Connecticut Children’s family. It was very cool: my first day here was like my first day back, I already knew most everyone here, and I picked up where I left off. I have never felt more at home.

And I owe it all to Jamie. Her strong little heart that just didn’t want to stop, her twinkling eyes that followed her big brother around the room, and her spirit that lives on in so many people through Jamie’s Run, will forever mold who I am. I am a different person than I was five years ago. You never know where life will take you. You never really know the plan. Just don’t ignore the signs that are put in front of you. Step out of your comfort zone and take some chances. You just might find what you’re looking for.

For more information on how you can support Jamie’s Run, visit http://www.jamiesrun.org.

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Sickle the Cycle: Nike’s Story

20-year-old Nike Oyelola shares her courageous journey with Sickle Cell and how she hopes to help others better understand it.

Sickle Cell Infograph Edit 1My name is Nike Oyelola. I’m a 20 year old patient with sickle cell (SS). I am currently in my junior year of college with a major in social work. As a result of sickle cell being a genetic disease, I was diagnosed shortly after birth.

Sickle cell doesn’t have a cure (except for bone marrow or stem cell transplants for those with the most severe cases), so I have had to manage it my entire life. I grew up learning as much as I could about my disease.

The hardest part is going into a crisis, which is when red blood cells turn into a crescent moon shape and get stuck in blood vessels causing excruciating pain. There are ways to manage the pain with medications, fluids, and distraction techniques, but there isn’t anything I know of to completely get rid of the cells once they become sickled. I have grown up with pain striking at any time no matter what is going on. It has been difficult having sickle cell, but I have had a lot of help along the way.

I have been treated at Connecticut Children’s Hematology department for most of my life. The hematology staff has been a big support in my life in terms of care and connecting me to resources and events surrounding sickle cell.

My social worker, Nancy Caperino, has had a tremendous impact in helping to connect my family and me to literature on sickle cell, a camp for those with chronic and life threatening illnesses, and Connecticut Children’s Sickle Cell Family Advisory Board.

I decided to make an infographic to explain sickle cell, because I wanted to try to show sickle cell in a visual way that mostly used pictures. I thought that it might help others to understand what sickle cell is and how it affects those who have it. It was also a way to incorporate my Twitter and Facebook pages called Sickle the Cycle, which I created to help raise awareness for sickle cell.

I have a passion towards sickle cell, which serves as my life dedication. Having this chronic illness has had such an impact on my life. Although it can be difficult, sickle cell has completely shaped me into who I am. I am grateful for Connecticut Children’s for allowing me to share my story and to have the opportunity for others to learn about my condition!

THE BEDTIME DOCTOR: Connecticut Children’s New “Bedtime Doctor” Answers Your Questions About Kids and Sleep

Lynelle Schneeberg, PsyD
Diplomate, American Board of Sleep Medicine
Director, Behavioral Sleep Medicine Program at Connecticut Children’s Sleep Center
Licensed Clinical Psychologist

010Connecticut Children’s “Bedtime Doctor” Dr. Lynelle Schneeberg joins our BLOG to help you identify which bedtime changes will work best for your child.

Exhausted parents of young children are snapping up copies of “The Rabbit Who Wants to Fall Asleep” by the Swedish psychologist, Carl-Johan Forssen, and since its publication, the book has rapidly risen to the very top of Amazon’s best-seller list.  Parents just can’t resist the promise on the book’s cover that the story can make anyone fall asleep.

However, there have also been quite a few follow up stories about parents who have tested the book on their own children and, as parents might expect, the book is not a cure-all.   Some kids do respond but many more don’t seem to fall under its spell.  There are, however, some other simple changes parents can make that should significantly improve typical bedtime battles.

The Rabbit Who Wants to Fall Asleep

Connecticut Children’s Sleep Center can identify which bedtime changes would work best for each child.  A parent would call to make an appointment with me, the Sleep Center’s new “Bedtime Doctor,” to review their current bedtime routine and to talk about what isn’t working well.  I would then help the parent design a new bedtime routine to improve these difficulties.

For example, I often suggest that a parent try the bedtime ticket technique.  This technique is really great for children who stall or make lots of additional requests after the bedtime routine ends.  To use this technique, the parent gives a child one or two bedtime tickets at the end of the bedtime routine along with a final kiss and hug.  The child is taught that after this final kiss and hug, they have to give the parent a ticket if they want anything else (another hug, a trip to the bathroom, a drink of water, an additional check-in and so on).  Note that these tickets expire 15 minutes after they are given to the child.  Once the tickets are gone (or expire), if the child makes any additional requests, the parent no longer grants these but instead simply comes to the child’s doorway and says in a calm voice, “Your tickets are all gone and I’ll see you in the morning.”  The parent then leaves the room again and allows the child to read or play quietly in bed until he or she falls asleep.   Each time the child calls out, the parent returns to the doorway and repeats this same phrase as often as necessary until the child falls asleep.

This technique helps a child to recognize when the bedtime routine is truly over and helps the child learn to make fewer and fewer requests after the bedtime routine ends.  Finally (and children love this part!) if the child doesn’t “spend” the ticket at night, he or she can trade it for a small reward in the morning.  Give this technique a try and see how it works for your child.

If you are an exhausted parent with some bedtime troubles at your home, please call (860) 837-6643 to make an appointment.

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