Awaiting the Wedding

We had a wonderful, impromptu visit with Anna, Nathan and our 14 month old grandson Soren. He's walking all over the place, keeping us and his parents busy! We got out a baby pool for splashing outside, his parents had time for jogs and bike rides and we all spent plenty of time just visiting and enjoying being together. Fowler White (Deb Brewer at the helm) brought in a big meal for all of us from Bailey's which was savored with great enthusiasm. The weekend before they arrived, we were treated to a Juneteenth meal (complete with Big Red soda, which is an acquired taste) and after Norman educated us, we were able to celebrate a completely new holiday! Thank you again, dear friends, for continuing to support us in such a meaningful and helpful way. John continues to take early morning walks, goes to physical therapy and listens to CLE cd's, which help pass the time as we await our departure for Hawaii and making precious new family memories at our son Will's wedding on July 16.

UNEXPECTED DOC APPT RESULTS IN GREAT NEWS!

John has been suffering from a swollen head (no, not a Big Head) and this condition had him in the Moffitt "Emergency Room" on Tuesday. The swelling has not involved his breathing, just his beauty. But it's been disturbing enough that Dr. Fishman decided to move the June 22 appointment up to this morning. We discovered that the swelling of his eyes, ears, nose and face is a side effect of Sutent (even though he's been off Sutent for a week) and that it will go away with massive doses of Benedryl over a few days. But the GREAT NEWS is that, while we were with Dr. Fishman this morning, we got to review the CAT scan from Monday.

The scan shows the tumor to be about 15% smaller. But, even better than that, it clearly shows that the blood flow to the tumor is greatly diminished - which is the actual result we were hoping for. Dr. Fishman said that the goal with Sutent had been reached - starving the tumor's blood supply. He really liked what he saw and said the next step is to keep John on a Sutent-type drug on an open-ended basis. Since Sutent has given him so many adverse side effects, the doctor recommended switching to Nexavar. John is to start on this new medicine after his side effects disappear and only at half-strength during our time in Hawaii. Then we will meet back with the doctor to reassess in late July. We are SO excited that our trip to Hawaii has now become a super reality! We are ready to take it easy and make some precious family memories in such a glorious location.

CT Scan Taken Today

We spent another quiet weekend, punctuated nicely with lovely Italian food provided by Deb Brewer, and another always-welcome delivery of Flip Miller's home baked breads. Thus fortified, John got through the morning's medical testing with ease. We now must wait another week to hear the results of the CT scan - and will learn just how effective Sutent has been on his kidney tumor.

Last Week of Sutent

Thank goodness John is heading into the home stretch with the inhibitor drug, Sutent. We scuttled the Sea Island trip planned for this week, because the drug is so draining, it's hard for him to feel like himself. We all look forward to his being off of it for a few weeks, regaining strength and getting geared up to attend Will's wedding. Since we will be bringing Tampa to Hawaii, John plans to wear his pirate outfit to the rehearsal dinner, and our centerpieces will be Tampa themed, complete with explanations of black beans and rice, cigars, pirates and sports teams! We were treated to dinner this week by Laura Barber, so thoughtful and welcomed. And ladies, if you are looking for a fellow who can really, really cook, check out Roger Robson! His "meal" was most amusing and memorable - and certainly would keep, with no preservatives, for decades! When I opened his foil wrapped "dish" I found fabric desserts festooned with restaurant gift cards and a funny note explaining how fortunate we were to escape his home cooking. It's amazing how our friends continue to lift our spirits in creative ways. We have reasons to smile every single day.
(posted by Ellen, uploaded by Dee)