Thursday, July 17, 2008

Day -8: It's Time To Go To Dana Farber

The day has come to head to Dana Farber. We've gotten most of the house prep done that's needed, ordered air purifiers, hung up soap and towel dispensers, ordered the water testing kit, cleared out and painted the room Sarah will stay in when she returns, etc., etc., etc...

Right now, we don't feel like we know what to do. We're just going down to Dana Farber and seeing what happens next. We sort of think we now what to expect, but with absolutely no control over it.

The stress in our house over the last week has been palpable, but we have managed to laugh about stuff just about every day. More and more folks are helping us or are lined up to help us with meals and jobs that need getting done with the house (doors that rotted out, floors that are getting thinner, painting walls, going to the dump). I know I mention the help from others on most of the postings, but it really is an important, valued and appreciated part of what's happening within our family.

It could be a tough weekend/week with the chemo/radiation so please take some time and pray specifically for Sarah to respond favorably to the treatment this week.

Tuesday, July 15, 2008

Day -10: Hospital Hand-off

This past Monday (7/14) was the last time we will visit Dartmouth Hitchcock for several months. Sarah's next hospital stay (beginning 7/18) will be with the folks at Dana Farber for the BMT. It feels a little strange saying it, but we'll miss the doctors and nurses that we've grown accustomed to seeing at Dartmouth. They have been very good and kind to Sarah, Susan and the rest of us. We will always remember them in our prayers and in our hearts. We will try to transition back to Dartmouth after the BMT, if Sarah's continued treatment allows.

Sarah had her PICC line removed from her arm and the replacement central line installed (Broviac) Monday, 7/14. The new central line is a little unsettling (appearance and apparent frailness), but we'll get used to it. Accepting the unacceptable, part of our new life. I should mention that Sarah is feeling and doing great. She does express some discomfort with the Broviac so soon after the surgery, but that doesn't stop her from playing, laughing and enjoying her life. I always wondered why people described their sick child as an inspiration or their hero, but Sarah is straightening that out for me.

The days on the blog will be recorded from negative to positive until "Day 0" (transplant day) is reached. After Day 0, I'll record them in positive numbers. The folks at Dana Farber said that's how it's done, so we're on the bandwagon. I suppose it's like starting with a clean slate. Apparently, it's sometimes looked at as another or a new birthday too.
-John 3:6-8