Dean has been a very special boy from the time he was born. He is a strong-willed, smart, hysterical kid. He loves jokes, dogs, and his best friend and cousin Brayden.
Dean was diagnosed with T-Cell Lymphoblastic Lymphoma at just over 3 years old, In November of 2020 amidst an already unimaginable time in the world, our life was turned upside down.
Prior to his diagnosis, we thought Dean was having an asthma flare-up. We had taken him to his pediatrician in October because he had what sounded like a barking cough. His doctor prescribed medication which helped so we continued with his daily asthma preventative, but about two weeks later the barking cough returned. Again we were told it sounded like Croup and he was given another 3 days of prednisone. This helped briefly but the cough returned. His asthma specialist put us on a two-week flare plan and we made an appointment to follow up. During this time we noticed that he was breathing more deeply and that just wasn’t sitting well with us. Over time, the coughing increased, he wouldn’t eat and just seemed uncomfortable. We eventually decided to take him to the ER – Dean got really upset and worked up which caused him to start coughing vigorously and he was struggling to take breaths. His dad pulled him from his car seat while I called 911. Luckily, by the time the EMTs arrived, he was calm and he was not in distress. Everyone who listened to his breathing told us his left side was very diminished. We were taken to the ER by ambulance.
The doctors there asked a lot of questions and began treating him with steroids and more nebulizer treatments. Again, there was not much improvement in his breathing which led to the doctor ordering a chest X-ray. I thank God for that doctor deciding to do that because from what I understand that isn’t typical for someone being treated for asthma.
We soon were transferred to another hospital and found out that Dean had a very large mass compromising his airway.
Once we were transferred to the Children’s Hospital of Philadelphia, Dean started his treatment very quickly. His condition was very scary and his breathing was severely compromised. He was in the Pediatric Intensive Care Unit for the next 6 days. He has since endured 27 months of treatment. Dean has had frequent lumbar punctures, port placement, and removal surgery, countless port accesses, IV placements, bloodwork, and Covid tests. We’ve had three hospital admissions, blood clots, along with multiple x-rays, scans, and ER visits. One of the most difficult periods of his treatment was during the beginning when we found he had blood clots. We had to give him blood thinner shots twice a day at home. It was very hard to already be struggling with his diagnosis and treatment and medications, but now to have to give him the shots was nearly impossible. When you are faced with such a difficult situation you really see what you are capable of.
At times, it feels like Dean’s little body rules our world. We have to be so in tune with what is going on with him to keep on top of side effects and fevers. We’ve been so lucky to learn through this journey that there is so much good in the world, even when you are walking through your darkest moments. We’ve been given so much love and support from family, friends, and strangers near and far. We are so grateful that Dean has responded well to his treatment and we live so close to one of the best hospitals for children. Our family will never be the same, but we’ve also seen that we are so fortunate and others have a much more challenging journey than us.
Dean’s strength and ability to adapt as a young kid being thrown into this situation is incredible.
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