Wednesday, March 19, 2014

Day 57 In Boston - On Our Way Home

After 57 days in Boston, India and I were finally going home. It was a very emotional day for both of us. We had made friends with some of the most amazing people imaginable.

A trip that was supposed to last no more than 21 days turned into something I'll never forget.  

When we said our goodbye's to 10 Northwest at Harvard Boston Children's Hospital, it was all I could do to not have 57 days of intense emotions, highs and lows come rushing out of me.

Saying goodbye....






Headed home...












Home...















Day 56 In Boston - The Last Supper

I just couldn't help myself, I had to walk over to Mama's for a "College" burger (AKA Death Burger) for my last dinner in Boston.





Monday, March 17, 2014

Day 37 In Boston - Bitter Sweet

I'm glad yesterday is in the rear view mirror...

India had a rotten painful day.  She is experiencing a lot of hurt in her left leg/foot.  It's to the point where she whimpers and says "help me daddy".


Seeking relief, India asked me to hold her in my lap. There I was cradling my child, trying to comfort her. I can't explain what this experience is like as a father.  However it's safe to say it's excruciatingly painful.

We were incredibly fortunate to have 3 friends with us to help India and I limp through the day.

Nelson, Jason & Angela.

Nelson is my pal from the Navy. He and I stupidly tried to sneak into China during the Tiananmen Square riots in 1989. 

Jason & Angela are angels who live in Rhode Island. I met these amazing people through my Buddhist Nun sister. Yesterday was their 2nd trip to visit and to say I'm grateful would be the understatement of the century.

During the late afternoon after hours of pain, Jason pulled out his guitar and started playing. As usual, India became calm and content; smiled.

After everybody had to go home, and the music was gone, India's pain reared it's ugly head with a vengeance.



I helped the nurse to take my child to another floor to get her X-rays; trying to figure out what is going wrong. 

We also had to increase her meds to try to control her pain. 

We were both wiped out in ways sleep can't remedy. Last night, when it was all said and done, I had to walk a block to my hotel room at 1:00 am. I was so worn out that it felt like the last steps of summiting Mount Everest.

Imagine how India felt...




Day 55 In Boston - St. Patricks Day


Day 45 In Boston - What We've Missed In 45 Days


Pictures of people, places and things that we've missed after 45 days away from home.




























Day 46 In Boston - Things Are Looking Up...

The last couple of days have been really frustrating. India pulled out her feeding tube twice. The damn thing drove her crazy.

Each time, India pulled her NG Tube out when I left her room.

Well Houdini just waited for me to leave so she had her opportunity...



The last time, I came back into India's room to find two nurses standing over India as she giggled with delight over her success. She was very proud of herself and clearly happy that she'd again showed "us" who is in charge.