Tenzin is an outgoing, silly and stubborn little boy. He enjoys all things Minecraft. He is very creative and can build incredible things. His favorite superhero has been The Flash ever since he was 3 years old. He really loves doing karate, and basically lives in onesies of various styles and characters. He is an amazing and empathetic younger brother to Paxton who is 11.
Prior to his diagnosis, Tenzin was going back and forth to the doctor for months. He initially presented with higher-than-normal levels of anxiety and fatigue, often requesting to stay home from school. He was tested for allergies, but all were negative. Then he developed an ear infection and had asthma. Within two days after an ER visit resulting in a para influenza 3 diagnosis, he was vomiting water, had blood-cracked lips and could barely stand. His mother, Colleen, took him back to the ER where bloodwork confirmed he had T-cell leukemia. This was all weeks after he turned 8.
Tenzin started induction while in the PICU soon after. He had a PICC line placed and a catheter in his thigh all on the first two nights he was admitted. He underwent blood pheresis treatment minutes after admission. By his second night he was receiving chemotherapy. Tenzin quickly became malnourished and had trouble keeping his medication down without vomiting, so in August he had an NG tube placed. Since, he has now transitioned to a G-tube.
Tenzin has endured five difficult hospital stays, the longest being four weeks and the shortest 16 days. Tenzin’s is being treated with chemotherapy at Stony Brook Childrens Hospital. His port is accessed weekly along with IV chemo, antibiotics, numerous procedures and a slew of medications at home including chemotherapy pills.
Due to treatment including steroids and chemotherapy he has developed several side effects and comorbid diagnosis. Tenzin has developed AVN in his foot and requires orthotics. He has lost quite of built of strength and endurance, so he does receive PT services. He has experienced neurological side effects from a recent chemo infusion that was extremely frustrating for him. He has experienced countless chemo holds due to low counts. His G-tube site often becomes irritated and has been infected numerous times due to the low counts. He has also been diagnosed with a generalized/social anxiety and is being followed by a psychiatrist, counselor and neuropsychologist.
Even through all this Tenzin has grown so much. He tolerates more than most adults would. He speaks his mind, advocates for himself and comes out better on the other end each time.