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.
00:08:54

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

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What do you like what do you like best about America that. It's. Nothing. That goes along in America. Mr. Well about food went on music sports. Exports over here. It's a big golf fans. That round up all the golfers who likes that Nixon makes Tiger Woods Hamilton likes Ricky Kyle Boller. Nixon's. With Hamilton let them on that Nixon is dressed up as Tiger Woods all lights and miles and dressed up as tired. Rich from fans and Allen and Hamilton very that was reviewed the orange never in Manhattan pants who won group which do play. Mom dad and I played well okay. We we we Manning's we had a Waco night clinic. We had. Seven guys that play in every day ago that you and then you were to 200 holes that tiger winner Ricky. Rickie Rickie beat tiger. It's like it when tiger advisory team the Yankees and these pump and in the bolts off me he doesn't locked up with these problems though. Yeah and go to Perkins. Like golf Nixon. The professional golf rock and roll. Wow you'd expect that answer Hamilton. I was expecting box yeah. Saw I saw how did you guys won that particular part what was what's what's what's the back story. No not at cherry avenue that back there on Friday afternoon on Thanksgiving last key U Nixon wanted to guys screaming after it means being okay and that he was ready for next week's. And ready really seriously. You straight sets and night and day. I'm a bit of an ivory act. I think it's on its. Apps like. Did I agree actually is nine I gotta find that these times I can't take into the local hospital up in the month. He's at 10 o'clock at night in the local hostility from on high alert after the shocking. Taking over the virus even say good evening stay and thankful pediatrician in unit in Amman hospital. In London and they had. Like 10 PM IB bacteria and bacteria and that led taste for ten of them last. Like 2121000. And normally normally that can happen. And bash on in my hospital with how I. Tell them we have a tennis easily and pat myself I'm standing up and right now I tell agreement can and you can. My Angel and Adam was very very. Kenya and from and we end up being human and take its Ellington and the possibly. By an agency. And nine. Made lately keeping staying on Aikman played it he is a very lucky she is that they. And and then an eight day which. That's right. Emea and changed its. Q. Or our right 830. Missed opportunities everything. It is just I didn't. Know you want out of. No unit but you feel now that you feel now Nixon. Thought it better goes. Good asset to us live you know. He in my. Street it. And make. Them. Media should I've. Become. We come from 161000. Calamities away from hand right and now we leave bulletins and what we can activate it. I am the best gift ever and that that kind of southern outpost into it and then you can't go better place for it's not it's not possible. Do you have a place like that mustard. Yeah that day and Mara and ascendant in Newfoundland and follow where we've also heard all around the world and one of the hospital's insignia specializes. Worked with him I think sometimes. Doctors cars vomiting so. But. We married we now that we get K he that we can't get back time in Australia we. And we count is close as we Aaron and it is. I'm doctor Su man and a Schwartz magazine and really special to Nixon's. We don't want any chance. You don't have an act now we we we talk about all the and we try to point out the progress that's being made because donations and they're nowhere else no other disease that they've done more to. It is cure the cure but certainly control and jail this. Over the last generation or two that made remarkable progress. In the with the disease fingers on us. Yeah and that's. It's men Houston and around the world how often times Nixon's movies does climate even Nixon understands that. We have an opportunity to get back and certainly some tells you story. And he loves guy and kind of any team. He dresses up every other day because I hear it's not anything serious he's OK he's making bets that it. If you can get it wanted to get Brock called on the way they couldn't get on gotten to settle for booking guests at a community. These the guys that police man he he the white mixing can give back he's giving out eggs thousands actually said that there is not a always Beckett. My other papers tomorrow. And advancements that have been made if not faster. Monetary damage and that's the qualities that today and some people about Nixon. Stan. But he aboard Hamilton's and took the fifth. So what's the what's what what's what's the plane next what was so when where what he would you look at fortunate what's the next big thing Ford. Both those that say all right yeah school and all right. First great concern for different. Is all negative British school of international and the British. And and Nixon. You want names you see you on guys in the system it good look at school. Nixon you know we'll see guys who hoped would back next year we'll talk you guys and okay. Next here to bring good time and dresses and tell me that he hit it. Yeah I think.
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