Good afternoon everyone, Sorry it has again taken so long for an update, but as I'm sure you all know life gets busy and then there are those times that just take unplanned routes and you have to go with it.

Since my lymphocyte infussion on March 10th, I really can't say that there has been much physical change as of yet. It still may be early. I had hoped that the fact that my last transfusion of red cells which lasted three weeks was a good sign since I just had to be transfused this past Monday with one unit of red and one of platelets.

I went to Dr. Chu's office today instead of Moffitt due to some very good weather advise from my friend, Jeri. I had my blood draw and PA appointments here in Sarasota so as not to chance the wicked weather and traffic risks. I'm not quite as bouncy this afternoon as I was this morning during my power walk with Daniel, my reds are down to 8.5 today and I'm scheduled to be at SMH Day Treatment Center for 2 units of red tomorrow. So it's a bit of a downer and I'm a bit discouraged, but here I go again. If you think this story is getting monotonous, I agree. This is the only way to keep me up and running until something more positive happens with the lymphocytes.

This coming Monday I'll be up at Moffitt again, starting with a Bone Marrow Biopsy and the usual blood draws and doctor or PA appointments as well as a visit to Dr. Greene who oversees my need for daily IV antibiotics which Jaime and Daniel have been administering morning and night. As soon as there is enough information from Monday's biopsy, Dr. Tomblyn will determine if it will be beneficial to infuse a second and larger dose of my donor's lymphocytes which were divided and frozen on March 9th upon arrival.

I have been walking 3 to 4 miles almost daily, depending on the pain in my hips, knees and legs, either with my Dad and/or Daniel, and many of you sweet friends as well. I've also kept myself quite busy with some fun art projects, reading, cooking and the usual daily chores. Taking care of myself has been quite a chore for me, Jaime & Daniel. I am grateful for all they are and to all of you and the enormous amount of support from all who have touched my life during this long year...and counting.

Thank you all for keeping me near and for being such wonderful spiritual boosters.

Susan's visit and blog contribution

While this is a delicate time -- waiting and hoping with every positive thought & bit of karma, that the new donor cells will boost the others to take over -- we focus on the moments when we share smiles & hugs, a game of upwards, and a walk whenever possible! Dad took a few walks with his girls which was very nice.

There is also the positive energy that comes with team work...taking turns shopping, prepping & cooking food (among other daily "chores") ... all less of a burden when divided & conquered. There's that satisfaction of seeing a meal come together & being enjoyed by all...life's simple pleasures (not to mention the even better pleasures of good leftovers for later or the next day, right, Daniel?!).

There are times of the day & eve that are difficult because of pain and/or fever (related to GVHD and neutronpenia), but the times that are pain & fever-free are when Carol's energy returns and we are able to just "be" ...and we all feel that surge of freedom and relief.

Yesterday was a real gift -- Carol & I spent several hours at Turtle Beach -- warm breezes, perfect temp in 70's, clear gorgeous water. She was feeling good all afternoon so we closed our eyes for a little while to breathe in the ocean sounds, walked a bit towards Midnight Pass (one of our favorite places), and just felt very thankful to have a good span of time to enjoy the beach in each others company. We decided dinner was second priority & stayed as long as we wanted to...made a late dinner & stayed up to watch 2nd half of a movie we'd started the night before. Guess you can say we squeezed everything we could out of that day!

Today Dad & Joyce came over to visit for a while...after a slow-ish start, Carol & I fit in a walk in the neighborhood -- it was great to see her pace pick up since her energy somehow rebounded...despite her need for platelets today...mind over matter? Then we headed to Moffitt for Carol's appointment & I left for the airport.

Thank you again for sharing the last 4 days with me....love-filled & lots of amazing team work :-) Susan

A fun weekend and some schedule changing

The lymphocyte transfusion has been rescheduled to Thursday, the 10th due to the donor's availability. Then we will look for a reaction of GVHD within a few days to indicate that the lymphocytes are doing their job.

This weekend we have our always fun visit from Alexia, Trevor and Isabella. My mom has been feeling very achy, but she's able to keep somewhat distracted with games, art-ing, good food and fun outdoors at the beach and around the neighborhood.