K&C - Nixon Clarke, 6, precursor B-cell acute lymphoblastic leukemia, Newton with his parents, Karen and Shaun, and brother, Hamilton 8-22-18

WEEI/NESN Jimmy Fund Radio-Telethon
Wednesday, August 22nd
Kirk and Gerry met Nixon and his parents when they visited the Clinic this spring.

After his first day of skiing for the season at Stowe in Nov. 2017, Nixon had a shower and went out for dinner. After dinner, Nixon and his brother wanted to go for a quick swim in the pool before bed. When getting changed, his parents noticed that Nixon had an odd rash that had only appeared while they were at dinner. Thinking about how quickly it appeared, they tried to find a doctor close by.

The closest doctor was at a little hospital in Vermont about 30 minutes away, so Shaun took Nixon to the emergency room just to be safe. Very quickly the doctors deduced that it was most likely a viral rash and he was pretty much ok and could probably even ski the next day.

However, because there was no pediatrician at the hospital, they needed to refer Nixon to one remotely. They advised that, because of Nixon's age, there could be a chance that the rash stemmed from some bacteria that can cause changes very quickly in children. The doctor advised that they do a blood test to rule out any possibilities before sending them home. 

In what seemed like only a few minutes, the doctors came and told Shaun that Nixon had leukemia and they needed to go to Vermont University Hospital immediately. At this point, Karen was still at the hotel with Hamilton asleep and Shaun is in the “middle of nowhere” trying to understand what he had just heard. Nixon and Shaun were put in an ambulance and taken to the Pediatric Intensive Care unit at VUH.

The following morning, Nixon was transferred to Boston where further tests were conducted to get to the bottom of Nixon’s diagnosis.

Due to the genetic make-up of Nixon’s cancer cells, his treatment protocol is in the highest risk category and will go for just over 2 years in total from when he was diagnosed. All going well, he should complete his treatment by New Year’s Eve 2019.

Since he was diagnosed, Nixon’s love of music has gone through the roof. He loves ACDC. Nixon decorated his IV pole in the hospital with a guitar, a tie, and other memorabilia, and called it “Angus” after ACDC’s guitarist Angus Young. When his port was placed in his chest, he decided to call his port “Malcom” who is Angus’s brother, who also plays in the band.

He started to learn to play the guitar in the hospital and he’s continued to learn to play through the music therapists at the Jimmy Fund Clinic, who are amazing. Nixon also likes to build LEGOS, draw, and play with his big brother, Hamilton.

According to Shaun - the Jimmy Fund is an incredible place. Nixon, despite being just one patient, feels like the most special kid there. In his tougher moments, they are kind, fun, and understanding. When Karen or I have a difficult time, they are just as understanding and sympathetic.

One of the special things about the Jimmy Fund is that they understand how Nixon’s diagnosis and challenges effect the whole family--they don’t forget about Hamilton. They know that Nixon's diagnosis impacts Hamilton in ways that is hard for other people to see or consider. So much revolves around Nixon for our family out of necessity and Hamilton has been an amazing big brother through it all. Hamilton is kind, loving and very understanding, but he is still an 8-year-old, and the Jimmy Fund doesn’t forget that.

Transcript - Not for consumer use. Robot overlords only. Will not be accurate.

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