Family vacation to Legoland/Disneyland

On December 11th, we took a much needed vacation. We left for Legoland and Disneyland in California. After an early morning flight from Portland

they were eating lunch in the park by mid-day.

Lego's have become a major part of this past year's entertainment, and the kids were anxious to explore the many amazing creations.

The rides at Lego land are geared towards the younger crowd (e.g. 8 an under), so our two boys found many options to choose from.

The favorite rides were the roller coasters, the "Coastersaurus" and Technic Project X.

Brayden rode Technic at least 3 times.



We then took a day to rest and drove up to Anaheim to visit Disneyland.

Brayden's favorite rides were Space Mountain and Big Thunder Mountain Railroad. Noah loved the Pixar parade.


We stayed up late one night, braved the crowds to see the new World of Color show

We were able to enjoy the Christmas decorations that Disney does this time of year. The "It's a Small World" ride was another one of the favorites. Didn't realize it goes through a conversion each year for Christmas time, and they change the song to sing Christmas carols. Heres a video, I apologize in advance if the tune get's stuck in your head :(

Overall, it was just nice to spend time together again, doing normal family type stuff.

Brayden's Make-A-Wish - Dash

After Brayden was diagnosed with Ewing's Sarcoma, we were referred to the local chapter of the Make-A-Wish foundation here in Oregon. During his interview, Brayden hemmed and hawed just a little bit, trying to decide between several top ideas.  They were:

1. Turning 5 years old early (he was only 4 at the time);
2. A puppy;
3. Going to Legoland

He decided to use his wish for a puppy, having a name already picked out - Dash.

So while Brayden was finishing up his post-chemo radiation treatments in Indiana, the Make-A-Wish volunteers from here were busy looking for Dash.  Periodically, they would email pictures of potential candidates, and found a mellow English lab down in Eugene, OR that they suggested we introduce to Brayden.

On Saturday, November 20, we drove halfway to Albany so Brayden could meet Dash for the first time.  Their visit was short (about an hour) but the two hit it off.  Brayden was so happy after the visit and is and now very excited for Dash to join our family. Here are some pictures from their first visit:

And some video of their first introduction:



Dash is tentatively planned to rejoin Brayden after his post-treatment scans are completed in December 2010.

MPRI and IUCF cyclotron tour

Midwest Proton Radiotherapy Institute (MPRI) is the radiation treatment facility that consumes protons generated by Indiana University Cyclotron Facility (IUCF) for the treatment of cancer.
About once per month, they provide free tours to the public of both facilities. Since there are relatively few proton treatment centers operating in the United States, (currently 7 I think), and we're stuck here for a few months, I was interested to go behind the scenes and get a better understanding of how the facility works. This past Saturday, my father-in-law and I were able to attend one of these tours.

This is the clinic side of MPRI. Each treatment morning we come in and meet with a pediatric nurse, radiation oncologist, anesthesiologist, and several technicians.

The gantry rooms are behind a winding hallway, designed to keep stray neutrons from escaping and exposing the staff to excess radiation. There are several cameras on the wall and control stations behind leaded-glass, like you find in a normal x-ray facility or dentist office.

This is one of the 2 gantry rooms. The treatment table is mounted on a robotic arm like what is used in the automotive industry and can move every which way. The 2 little squares on the white wall are retractable x-ray units used to validate positioning prior to each treatment. Everything is computer controlled so that the exact same position is replicated each day, for 31 days.

This is the business end of the proton beam. It's designed to rotate 360 degrees around the patient. During the tour, one of the physicists described how they take into account the distance between it and the patient, because as the protons pass through air, they slow down a bit. They are able to calculate the point at which radiation stops within the body to a tolerance of about 1 millimeter.

This cube of water is called a shadowbox and is used for calibration of the proton beam. The ability to treat to the depth of each tumor (and not beyond) is unique to proton radiation. This is one way they can measure how far the proton's will go, by measuring how far they pass through water. Inside the box, technicians move sensors around which detect the protons. Once everything lines up the way they expect, they can use these measurements to extrapolate how far the beam would pass through different types of body tissue.

This is one of many neutron detectors in each room. In a brief discussion with the director of operations, he was saying that proton's are easily controlled (because of their positive charge) by magnets. However, it's the neutron's (neutral charge) they worry about. He described them as like the leaves blowing around your yard, and the shape of the treatment rooms were designed specifically to keep them from exiting into the hallways.

This device helps shape the proton beam to the precise outline of each tumor. The top part is made of brass, and shapes the X and Y axis (left-right, top-bottom). Below the brass piece is a custom shape of acrylic, which slows down the protons at a faster rate than air. This shapes the Z axis (front-back) or depth of the proton beam. Each one is custom designed for each patient.

This is the machine shop where each device is made. They use brass for shaping the beam and acrylic for the depth. Anything associated directly to a patients treatment is called Tier 1 Material.

This is the control room for the cyclotron, which is manned 24/7 with an operator. MPRI typically treats patients from 7am to about 7pm (sometimes later into the evening), but the beam is usually on all the time, and various maintannce and calibration activities happen when patients are not being treated. Above the control panel are varous space mission badges that IUCF assisted with. Typically, anything electronic that goes into outer-space gets radiated first, to determine how it would work outside the earths' atmosphere.

IUCF writes all their own software, and even had an electric bill tally. They had spent $83,000 so far this month.

This is a close up of their control panel; was funny to see it running on Redhat:)

This is one of 2 cyclotrons at the facility. This one is the main cyclotron unit. They take hydrogen gas, excite it with microwaves to split off the positive protons and send them inside the first one. Once inside, they keep alternating the magnetic field which accelerates the protons to about 2/3rds the speed of light.

Once protons accelerate faster and faster, they spin out in ever widening arcs. At 102 inches in diameter, the protons can exit the cyclotron into the beam pipe.

This is the path the proton beam travels to each patent's treatment room. Every few feet there are vacuum pumps and magnets. The pumps continually remove all air from the beam pipe and the magnets continually refocus the proton beam into a pencil size shape. At each treatment room, there's a final "kicker" magnet that can redirect the positively charged proton beam into the treatment room. Treatments only last 30-60 seconds for each dose, after which the "kicker" beam redirects proton's back into the pipe.

Our stay at the Alexandra Ellis Caring Cabin

Ever since Brayden was diagnosed with Ewing's Sarcoma in January, we have been trying to find time to steal away a visit to the Children's Cancer Association's Alexandra Ellis Caring Cabin in Pacific City, Oregon. It's been harder than expected to do. Brayden's chemotherapy schedule is aggressive, starting every 2 weeks and there just hasn't been an available weekend at the Cabin that Teresa and I could find that would work between hospital visits.

On July 12th, we learned the Cabin would be available from the 23rd to the 26th, due to some last minute changes. So we left our house not knowing what to expect, but hopeful for some time dedicated to family fun and reflection on these past 7 months.

It is awesome to witness what people can do as a result of great tragedy, and the CCA organization has created an incredible facility to help families going through this terrible experience. Rooms are stuffed with toys and books, large spaces to eat and gather, packed with art that both sparks a child's imagination and grabs a parent's heart. What an amazing place!

Some friends joined us for the first few days and helped the kids explore the grounds.

And then took a few days to ourselves, spending extra time reading books by the fire, trying to be a normal family again.

Pacific City happens to have one of our favorite beaches in Oregon and the Cabin is only a 3 minute drive from our preferred access road (just north of Cape Kiwanda).

We've played here before; camping, exploring this same beach. But this was different. This time, while Brayden played on the beach below,
I helped my 7-yr old nephew Alex explore the top of the same cape Brayden and I climbed when he was only 2.
Noah enjoys playing in the sand as much as his big brother now does

and being "goofy Noah" comes very naturally.

We killed the battery in our truck and Dave got his stuck in the sand. Luckily, someone drove by and helped us jump start our vehicle and pull his out of the sand. Unfortunately the ocean wasn't about to give up, and sent a sneaker wave that filled the vehicle with Salt Water!

Back at the cabin, we tried to make the most of it.





Everyone really enjoying the deck overlooking the little pond during morning coffee, snacks, meal time etc.

The kids enjoyed just being kids,

On a last minute whim, we were able to rent a small dune buggy from Sand Lake Tsunami to explore nearby Sand Lake for an hr or so. You can't tell with the helmets and goggles, but Brayden, sitting next to me in the front, has an ear-to-ear grin. Even cautious Noah would shake his whole helmeted head up-and-down when we'd turn and ask him "More"?

It was a fun time, and the boys and I were able to get some much needed sleep.

Just before we packed up to come back to Portland, we walked down the winding path to the pond.

This path is lined with stones, engraved with names of children who have stayed here before.



Brayden was able to leave a stone behind with his name too.


We would never have chosen to be eligible to visit this place, but such choices lie outside our control.  What we do realize even more clearly today is the need to make the most of the times we have.

Thank you CCA for enabling us to have such a wonderful, memorable weekend.