Nicholas Modestin

At the age of 2.5 years, a courageous boy was diagnosed with acute lymphocytic leukemia (ALL) and during his battle to defeat Leukemia, he had to learn how to talk, walk and run again at a young age. Today Nicholas Sebastian Modestin is cancer-free and alive to see another beautiful day at 16-years-old and entering the 11th grade for the 2022-2023 school year.

On September 22, 2008, he was diagnosed with High-Risk Acute Lymphoblastic Leukemia (ALL). During the month-long stay at The Brooklyn Hospital Center Pediatric Oncology Unit at the start of his chemotherapy treatment, Nicholas was hit with several major complications and two surgeries. First the doctors found a large adrenal tumor in his stomach which needed to be resected within the first week of diagnosis, second his brain got swollen from a mini stroke and the third was the biggest hit when the swelling from both sides of his brain went down. The toughest complication to Nicholas was a rare side effect called Acute Leukoencephalopathy from the mini stroke which led to severe weakness of all his lower extremities and almost crippled him. This meant after the swelling went down on the right side of his brain, it affected the motor skills of the whole left side of his body. This left Nicholas not walking or standing on his own for a couple months and leaving his left side of his body weak in strength and in his bones. With an unbalanced gait and rigidity, starting all over for Nicholas was rough, but his spirit and perseverance surprised his oncologist, doctors, and physical therapist. Despite all these setbacks, chemo continued, and Nicholas underwent a successful bone marrow transplant. Every day was a challenge throughout the process of gaining back the basics of talking, walking, and speaking. Enter a speech, occupational and physical therapist that gave Nicholas a slow start of building back up his stamina and ambition of what he lost. After 3.5yrs of climbing over many obstacles, on August 23, 2012, surgeons at The Brooklyn Hospital Center took out his mediport and Nicholas won the fight to crush out Leukemia.

His determination to build back up his legs goes to his support and spirit of his physical therapy team. In 2016, he was introduced to Dr. David Scher MD at HSS. Dr. Scher diagnosed Nicholas with level 2 cerebral palsy secondary to encephalopathy which was caused by his chemotherapy. His walking pattern is consistent with a crouch gait. He is at severe risk of progression as he continues through adolescence, for which surgery may be required to address the gait issues. Furthermore, his weakness and balance issues pose a fall risk. After seeing Dr. Scher, Nicholas was ordered to start wearing a stronger and firmer brace. First SMO and AFO braces to wearing double AFO braces on both legs.

Throughout the years leading up to the summer of 2021, Nicholas went through intense physical therapy that included once a month with aquatic physical therapy. Dr Scher, to be secure and positive on Nicholas’ treatment, ordered several gait analyses. Once the analyses gave a bigger picture on what Nicholas needed to be fixed and adjusted, Dr. Scher began the process of giving Nicholas surgery. Nicholas had surgery on June 29th, to extend the muscles in the psoas area around the waist in which will lengthen up the waist. Another part of the body that will have surgery is on his left knee. Dr. Scher will be flexing out the left knee and the semi tendon on the left knee. He will make a loop around the back of the left to straighten it up the left knee, more stability on the left, and stabilize his pelvis. The challenging part of the surgery was to avoid touching the nerves around the sensitive area of the waist and knee.

After the surgery, Nicholas is wearing a leg brace full-time at night. He is currently wearing AFO braces to strengthen up both legs and give his body and waist a better grip while walking and running. During his days of Physical Education, Nicholas wears a walk aide. HSS put him through eight weeks of intense rehab to get him ready for his sophomore year in high school (2021-2022). Even though he still walks with a slight limp, his body is stronger now and after the surgery and rehab, his confidence and stamina is at a high level with more to come to get him back at 100%. Today, the best lesson Nicholas has taught us is that no matter how bad your day is going there are always better days ahead to smile and appreciate.

LOSING IS NOT AN OPTION – Team Nicholas Motto "Built Strong To Crush Cancer & Losing Is Not An Option" & Stand Tall Walk Strong!