On October 21, 2000, an angel was born and we named him Dylan Egan Kolar. He was a healthy 6lbs 9oz. Our hearts swelled with complete and unconditional love. A love we’d felt only one time before and that was when Kevin Ryan was born 2 yrs before. Our family was complete the minute we had laid eyes on him.
5 weeks later we were in the emergency room because Dylan had a 102.7 fever. Because of his age, Dylan was subjected to many invasive tests. Our hearts broke. Little did we know how many more times this would happen.
Because we were unable to get an IV in him, the neonatology unit at the general hospital created an access through a scalp vein. There was our 5 week old son with an IV in his scalp. After a week at the general hospital my mother in law got us an appointment at Cohen’s Children’s Hospital. There, Dylan had his first blood transfusion. He was only 6weeks old and only 7lbs. At the time, the term ‘Blood Transfusion’ was an inconceivable concept. But we were told that it would save his life. Never could we have imagined that it would soon be a term that we would toss around so casually. Over the next year Dylan would have gone through 8 blood transfusions.
During our first visit to Cohen’s, Dylan had to have his first finger stick. He screamed and cried. I cried with him. The nurse said, “It is good that he is crying. It’s when they stop crying during these visits….that’s when you should cry, because that means that they have gotten used to it.” At first I wasn’t sure what she meant until the day Dylan didn’t cry at his weekly blood work check up. That was when it hit me. He was getting used to the poking and prodding. No child should ever have to get used to it.
Over the next eight months Dylan was seen by a Hematologist/Oncologist, Dermatologist, Endocrinologist, Immunologist, Infectious Disease, Gastroenterologist, Allergist, and Nutrionist. In addition to being seen at Cohen’s Children’s Hospital, he was also seen at Columbia Presbyterian and Boston Children’s Hospital all in hopes of a diagnosis.
Dylan was tested for Transient Erythroblastopenia of Childhood, Pearsons Syndrome, Diamond Blackfan Anemia, and finally, Shwachman Diamond Syndrome. This period in our lives was a period of constant uncertainty. We were going from doctor to doctor to doctor and just kept hoping his symptoms would just go away and that it was all a bad dream. We were always waiting for phone calls, results, and the hopes of a good diagnosis. We soon learned how much human error is part of the medical field. Lab results were often missing and we would have to do the tests over again.
Dylan had his last blood transfusion on August 6, 2001. It was soon after that that he was finally diagnosed with Shwachman Diamond Syndrome. Dylan’s symptoms seemed to fit the description perfectly. The constant blood transfusions put a delay on the final diagnosis of SDS because, although anemia is a possible symptom, blood transfusions were rare for these patients.
After the diagnosis we were soon educated as to the treatment for children with this rare syndrome. Dylan takes enzyme replacements with every meal. This helps him to absorb fat and protein, otherwise anything he eats goes right through him. He has to take special fat soluble vitamins. Whenever he gets a fever, it results in an automatic visit to the hospital for a blood culture and IV antibiotics and GCSF (bone marrow booster shot).
Dylan is not like other children in the respect that he does not respond well to oral antibiotics. Things like average colds, ear infections, respiratory infections, take a much longer period of time for Dylan to get over.
Dylan will always be small. But great things come in small packages. He will always need enzymes and every illness he gets will always need to be treated aggressively because his bone marrow does not produce the white cells needed to protect his system. His future is uncertain. He may or may not need a bone marrow transplant in the future. We are optimistic but also realistic and are taking the necessary steps to ensure a healthy future for Dylan.
Dylan is doing very well. He is your typical 16 year old boy. Dylan is like any other teenager. He is energetic and then he is a slug. He is sweet and then the back talk starts. He is a “street angel – house devil”. He is “ A Teenager” and I am grateful for every bit of it. My strong, loving, boy is growing up.
We are eternally grateful to have such a loving family and caring friends. This has been the most difficult challenge in our lives, and it gives us strength to know that we are not facing it alone. Every act of kindness extended to us has not gone unnoticed. On one of my worst days, when I am feeling the most confused, isolated, scared and angry and you send a of sign of concern it makes it a little easier. When I am feeling that life is not fair and that my Dylan deserves so much more a simple phone call from someone keeps me going.
I am writing you this note and our story to thank you for everything, for being friends, neighbors, co-workers, families that care. I am writing to thank you for being there for us and for loving us. I am also writing you this note to share Dylan’s story in the hopes that you will live life to the fullest. Life is so short and the only thing that matters is the relationships you have and the things that you are able to give to others. I thank you all and love each and every one from the bottom of my heart. Your donation and support are helping plant that all important seed of hope for Dylan’s future.
Jennifer Kolar, Dylan’s Mom
“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.” – Leo Buscaglia