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Week 4 of 6 Complete

4/27/2014

 
The first month in Boston has gone by fairly quickly.  A couple of weeks ago Madi was presented with Celtic tickets, her first professional basketball game. Just prior to Easter she won Red Sox tickets... ground level between 3rd and home base, 4 rows up. Angela and dad watched on TV, it was a great game! The Sox were behind 0-5, and won in the bottom of the 9th. A traditional Easter supper... dirty water dogs at Fenway  ;-)

Madi's mom Colleen was in for almost three weeks, just left Saturday. It was a nice long visit that offered quality time for both mom and daughter. 

Chris, Angela, and Rodger will remain in Boston with Madi for another two weeks. Then home for a month... Woo Hoo!


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This is the inside of the Proton treatment room. Each patient has a custom made mask which is secured to the table. Treatment is M-F and only about 5-10 minutes once you're in and there is no sound or sensation whatsoever. 

The unit on the left side of the picture does a full circle around the room. While a tad menacing at first, the biggest challenge now seems to be staying awake. 

Madi's throat is starting to get quite sore but she still seems to have pretty good energy... all things considered. 

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This is the back of the Proton machine... looks like something out of the movie Transformers. The cover is 4 foot thick concrete and weighs 20 tons. The unit central to the 3 Proton machines is even called the cybertron... very Transformers

Proton radiation is different than traditional IMRT, which is like a broad brush by comparison. With Proton, a mold is made of the patients tumor. From that, a custom guide is made which is fit in to the machine prior to each treatment. This process directs the radiation and energy levels to an exact area, offering oncologists the flexibility to zap the thicker parts a tumor with high doses, while also drastically reducing the radiation levels around the edges to minimize and ideally eliminate radiation to surrounding areas. We've heard the term 'pencil beam', which sounds very precise. 




First Two Weeks In Boston

4/13/2014

 
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We've been in Boston for two weeks now and medically all things are progressing as expected. Socially, better than expected.

We were invited to attend a Gala/fundraiser hosted by the American Cancer Society (ACS) at the Boston Garden, proceeds go to the Hope Lodge in Boston. The goal, $1M. It was very lavish and our tickets were paid for by a very generous supporter of both the ACS and Hope Lodge. We were also fortunate to be seated at his table.

Jim Foster and his wife were interested in Madi’s experience with the Hope Lodge. Madi said something that that seemed to touch them. “People there are interested in getting to know me, not my cancer”. After a short time, Madi was asked what she was doing the next day. Long story short…



Madi was presented us with 4 tickets, opening day at Fenway. Jim is the 2014 honorary spokesman for the ACS Hope Lodge fundraising event(s), and the CEO of Charles River Labs that has a suite at the Park. Sweet! He also sent a car to/from Fenway. The whole experience was amazing… Madi felt like royalty. We all did. 

I cannot offer enough praise about the Hope Lodge Boston, Google it for more info if you’re interested. The first floor has a yoga room, art room, library, large living room, media/theater room with plush recliners with a killer sound system, and 4 mega kitchens with a common eating area where people congregate. There are four commercial kitchens with a central dining area. Floors 2-4 are mini-suites and on each, a laundry room, large TV/living room. In all 4 corners of floors 2-4 are sitting areas with two windows and one chaise lounge. If people want their own mini sun-room, there are 12 total and by design, seating for one. Hope Lodge is a community filled with support. If patients feel like alone time there are plenty of places to have that without feeling crowded or trapped in their own rooms. 

The patients and caregivers at the Hope Lodge are awesome, each and every one. The caregivers and patients can each relate to their peers on a level that unless you're a patient or a caregiver, you might not understand. 

The Gala/fundraiser exceeded their goal, over a million. So far, Boston is treating Madison like the rock star that she is, more pictures on the Photo Gallery tab of this site.

So how is Madi?! Whelp, rather than looking like a bald chemo patient she looks like a gal with an attitude. He hair is growing in and she has more color in her face. After two weeks of radiation (6 total this trip), her throat is starting to get sore but seems manageable at this point. 


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