Bonnie Recovery

Wonder filled waiting

We are staying in North Carolina one more week, returning to Cambridge for my next appointment on February 15th.  We have yet to identify a live donor or a cord for the transplant.  And I continue to be ok.  We are indeed just getting settled in here at the beach. 

As if to celebrate our staying a while longer the sunset was extraordinary tonight.   

We kept both Zac and his baby brother for two days this week. At three months, Lucas isn’t ready to spend the night away from Mommy (or maybe it is Mommy not ready to have Luc gone).  I took the 7 am ferry to meet Jen at the landing on the other side and bring the boys back to the beach house.  They stayed all day and I took them back on the last ferry and spent the night at their house then brought them back on Thursday morning.  Zac has been watching Polar Express on the DVD in the car.  When Lucas decided he was too hungry to wait for food, Zac fed him so that I wouldn’t have to get out of the car while we were on the ferry.

Lucas began to reach out for his mobile toy; this is a big  milestone for a three month old.

Daniel took Zac out to throw some rocks in the water.  Zac loved chasing around in the water.  It was a joy to watch this little guy taking on the ocean, determined to “surf.”  Here is a 20 sec movie of Zac and the beach. 

.Download zac_beach_feb_652.MPG

We now have several “Zac Free Days” that are giving me time for other kinds of prayer and also participating in my online course.  Daniel has set up the desktop top computer he brought down here and has begun to rip his CD collection.

Each day feels like the marvel that it is.

Our Superbowl Pre-Game Show

The Sunset!

Hope that you are enjoying the game.

Inner Pilgrimage

I’m sitting looking out at a churning ocean, calmer than yesterday, but far from the “lake Atlantic” we have had for most of our time here in N.C. I’m thinking of all our friends in N.E. with two feet of snow. We are happy that we don’t have the necessity of driving in it. Somehow it seems like a metaphor for our life right now… we are escaping the storm, but mindful that we are on the journey and journeys inevitably have storms sooner or later.

Back in November I was (foolishly) eager to get on with the treatment and the hospital. It was not that I was looking forward to the transplant itself, nor even to a “cure” and the vista of life that a “cure” would open for me. Rather, it was that I was looking forward to being on the pilgrimage.

Daniel’s Birthday

It was quiet (compared to mine), but Daniel reports it was one of his best.  I’ve put a photo album on this BLOG called “Daniel’s Birthday” with pictures of the party, and also some pictures of Zac with one of his GrandBee’s (four) trains. Check out the link on the right under the calendar.

We celebrated in many ways.  Daniel got phone calls from distant friends.  We toasted that we are able to stay at the beach until Feb 25^th.  We had Jennifer, Scot, Zac, Luc, and Scott’s parents Linda and Ernie for birthday dinner on Saturday.   

Daniel cooked incredible London Broil and short ribs; amazing stuff.

Zac and I went shopping for the book that Daniel requested for his birthday.  Zac blew up twenty balloons to decorate the house.  He wrote a special card for his GranDan and helped me wrap packages.

Daniel made two requests for his birthday: a copy of The Elegant Universe and that I would post sermons I’ve done over the past three years onto the BLOG along with description of the context of those in my illness and recovery.  I’ve been working on the second request and will be create that ‘sermons’ post this week.

In the meantime, we are enjoying the sunsets, quiet, and mostly our love for each other, our family, and our wonderful friends.

New Appointment February 27th

Yes, we are still in NC and you won't see any pictures of us packing to go back to Cambridge tomorrow.  We got the OK from my hematologist at Dana Farber to postpone our Feb 15th appointment and stay here for another couple of weeks as long as I have no fever.  My next appointment is now Monday, Feb. 27^th. 

Here is a picture of what this is all about.  These are bone marrow stem cells.

I’ve also been in quite a bit of communication with the nurse who will be coordinating various services once I get into the transplant process.  She has been my primary contact with the woman managing the search for a donor.  They had eliminated all the live donor possibilities in the Registry.  My son Ron was typed when he was in Boston.  I got his typing this week and it looked very close to me.  Unfortunately, close is not good enough.  He does have the very rare antigen that I have, but he has two antigens that are not close enough.  We have now typed Jennifer and her husband Scott; in part, this is to see if Jen might be close enough, but mostly it is to estimate whether the umbilical cord they saved from Zac might be close enough.

There are two bits of good news.  They have found ten cords in the 40K stored for the registry that appear to be close enough.  Recall that cords do not need to be exact matches like live donors.  I don’t think that the bone marrow donor committee has yet discussed these. 

I got a very enthusiastic message from Deborah, the person in charge of the actual search, that a new potential donor had “popped.”  I don’t know the background here, whether this is a new person in the database, or why this donor has just shown up.  It is the first time Deborah has ever sent me email directly, and so I’m assuming that the match on paper is an exact one.  She has sent out the message requesting blood samples for an “urgent” confirmation.

My doctor is out of town the week of the 20^th of February, and so he said I could stay until the following week, but he instructed his assistant to make my appoint early Monday morning the 27^th.  This means he wants to see me as soon as he gets back.  My appointment is a 9am.

The bone marrow donor committee at Dana Farber should have time to discuss and recommend a donor direction. 

Below are two more postings I've made today.

California ... trip cancelled

This is an edited version of the excited announcement I made about what we expected to be a trip to California.

This is a special view of All Saints' Episcopal Church in Palo Alto, our home church.  The picture on the right shows the special redwood fence opening to the sidewalk along Waverly St.  The picture on the left looks into the garden through an opening in the shape of a cross. You see a Japanese style garden created with California native plants.  I love this garden.  It was created while I was in the hospital in 2002.

When I heard from Margaret Irwin, who was our rector at All Saints', that she and her husband Paul were going to Califormia for what the Episcopal church calls the "institution" of a new rector, we began to think, "why can't we go too."

And, we almost made it. But TRIP NOW CANCELLED. 

Our congradulations to the new All Saints' Rector, Ian Montgomery.  All of our All Saints' friends who will be at the "Celebration of New Ministry" in Palo Alto on Wednesday the 22nd:  We are there in spirit, and we hope to be there in person by the end of the year.  Congradulations on this wonderful transition.

SO, FRIENDS IN CALIFORNIA, we will miss seeing you.  Write us, call us, Skype us.

Where in the world are Bonnie and Daniel?

We intended to be brave and chance one more trip to California.  We even bought the tickets.  But today we decided that we should not risk that.  I had a “slow day” on Friday with very little energy.  I wouldn’t want to get all the way to California and then be so, well, slow.

My next doctor’s appointment is on March 1.  We expect to be here in N.C. until just before that.  If my doctor has no reason for us to come back to Cambridge, we may not go back even then.  We continue to pray that there will be a donor and that we will leave here joyfully.  And I would love to be back for Ash Wednesday. 

Some people have asked just where we are, and where is the ferry that we take to our daughter, Jennifer’s house.  Here is a map on which I’ve indicated with a brown dot the location our house on Oak Island is and also Jennifer’s house in south Wilmington.  You can click the picture for a larger version.

We drive to Southport and ride for 30 minutes across the mouth of the Cape Fear River.  The small NC map has a red star that marks Southport.  We then take rt. 421 north toward Wilmington, and turn to Jennifer, Scott, Zachary, and Lucas’s house which is on the Intercoastal Waterway.  Our beach house faces due south so that this time of year we see the sun rise and fall over the ocean. 

Here is a picture of the sun RISE from the ferry.

The sky is sunny and the ocean calm today.  Our life here is very quiet. We are with other people mostly by computer and now with Skype.  We are practicing virtual presence.