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Sonny is a very happy three-year-old! He loves the beach, playing outside and Paw Patrol. Sonny is a curious little brother to his three older siblings and follows them around. He is a great big brother to his baby sister.
Sonny developed a slight fever at eight-months-old. He was very sick for only having a low-grade fever. The doctor couldn't find any type of infection so they thought it was a virus. Within a week he got worse: not eating, couldn't sit up without crying and not his usual happy self. He was taken back to the pediatrician who agreed something else was going on. Sonny was sent to CHOP. The next day, he was diagnosed with high risk infant leukemia, seven days after getting sick. Five days later, we were told his official diagnosis was high risk infant acute lymphoblastic leukemia (ALL) with MLL-R.
Sonny was on chemotherapy for two years. Much of his treatment consisted of high dose chemotherapy which took a toll on his little body. He spent the first four months inpatient, and after short breaks (2-3 days) at home, returned for inpatient chemo 4-5 days at a time. This was only the first six months. Weekly outpatient therapy and eventually oral chemotherapy at home was added to his treatment plan. He had a lot of blood and platelet transfusions, as well as monthly IVIG transfusions. Sonny developed an infection halfway through treatment. It settled in his brain causing encephalitis. His chemo was stopped for several weeks while he recovered. The infection caused a hypothalamic injury which he still suffers from 20 months later. It also caused a total loss of vocabulary, until just recently. Sonny remains on a NG tube because he aspirates thin liquids and needs it to stay hydrated. Three months ago, Sonny learned to put sentences together again. Now that his speech is back, Sonny has a lot to say! Recently, Sonny celebrated one year off treatment! He still deals with all the side effects from the infection and the neurological issues.
Sonny’s mother Alexis hopes and dreams Sonny gets to grow up, experience all the things kids his age do and live his life to the fullest.
Sonny is Alexis’ hero because no matter how tired or sick he got he always had a smile on his little face. At such a young age, he gave his whole family the strength to get through this very hard time. He is such a happy little boy and doesn't let his illnesses stop him.
Alexis’ advice for others who may have recently received a cancer diagnosis is to know it's not easy. Some days you will feel it's all too overwhelming and that's ok. She says, “You don't have to do it alone though. For the longest time, I was just so focused on my son's treatment, him getting better and my other children. I forgot that I need to take care of myself, too. So, if I could offer other parents some advice it would be don't be afraid to ask for help, join a support group online or in person and never give up!”
Information submitted by Alexis Denisi, Sonny’s Mother
Updated September 2016
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