Sat, July 19 - Wed, July 23rd - The last several days have been a whirlwind. We only had a couple of days to get our home affairs in order, assemble our friends that will be taking care of our kids while we are away and get ourselves ready for an indefinite stay at an unknown location in the Boston area. Somehow we got this done over the weekend. This was also a very emotional weekend. It was very difficult to say goodbye to your children and not have a definite date of return to give them. We tried our best to explain this to them and to spend as much quality time with them before we left. All this on top of the scary nature of not knowing what we are up against with Cole. Nonetheless we know we just need to do this. On Sunday we received a call from the Ronald McDonald house of Boston that they have a room for us. This will be very helpful and is one less thing to have to worry about.

So our flight is scheduled for 2:40 on Monday. Cole was actually feeling pretty good this day for the first time in weeks. We arrived at the airport to find that our flight was delayed until 4:35. Then a short while later we found out that the flight was delayed again until 7:15. So we went back home to let Cole rest. We headed back and finally boarded around 7:30 and took off around 8:00. Our good friend Jane who lives north of Boston picked us up at Logan airport and we finally arrived at the Ronald McDonald house (http://www.rmhboston.org) around midnight. It is a very nice Victorian style home built in the 1860's. Jane was also very thoughtful and packed some essential groceries for us. Thank you! We were very tired to say the least and were off to bed shortly after our arrival.

On Tuesday we had a 1pm appointment at the Dana Farber Institute which is only a few minutes away from where we are staying. We get there and can immediately tell that this is a well oiled machine. Very professional, courteous and thoughtful. We meet a number of new people there and begin a series of papers for check-in and for transfer of care. A short while later we have a consult with a senior Oncologist (Dr Billett), a new Oncologist and the head nurse. They had already read all the reports, test results, etc... that we had previously sent, however we still spent about 1 1/2 hours talking about every detail of Cole from birth until today. This day was not about a plan for Cole yet, however they did say that they had dealt with Cole's condition before successfully, but they want to run their own series of tests first and then we would confer again to discuss their plan for him.  We then returned to the RM house and began to acclimate ourselves. We ordered in a little dinner and made it an early night.

On Wed at 11 we had to be at the Boston Children's Hospital for an echo-cardiogram and then we are sent over to the Jimmy Fund clinic for a 2pm spinal treatment. All of the buildings (Dana Farber, Boston Children's Hosp and the Jimmy Fund outpatient clinic) are connected by indoor hallways/walkways which makes it pretty easy to go back and forth. Cole is brought in and readied for his treatment. Around this time, our good friends Art & Renee had come to visit and spend the remainder of the day with us. They brought Cole a wood baseball bat signed by a number of kids from their hometown in New Hampshire. Having Renee here was was especially comforting to Denise as she and Renee have been best friends since high school. Cole's treatment went well and we returned back to the RM house. Dinner was delivered courtesy of our friend Jeff Trynz. Thank you Jeff! After dinner, I took advantage of Art having a car (actually a Jeep) and took a trip to the grocery store to pick up a few things. Art and Renee stayed a bit into the evening and then left for home, however they are returning tomorrow.

We are scheduled for another test tomorrow (Thursday).  By late Thursday or early Friday, tests results will be back and they will be ready to discuss an action plan for Cole by Friday afternoon. We are nervous, but hopeful.

We feel encouraged by our discussions and they have reaffirmed our decision to come here. In the words of our cab driver, "the people here are very smaaht". I believe that was "very smart" :)

Getting a few hugs before we leave

On our way to Boston

Cole got us to Boston safely!

1st day at Dana Farber

Ronald McDonald house of Boston