Family Tradition (Updated 6/3/2008)

It has been a long standing Memorial day tradition for Joy's brother Fred and his wife Shirley plus their children Laraine, Steve, Danny and Chris to visit Montpelier, Ohio to decorate the graves of family and friends. Joy and I were not able to go last year due to her illness and scheduling at Duke but I don't think anything was going to stop her this year. Fred, Shirley, Steve and wife Trina and Danny drove over from Pennsylvania and Joy, Kayce and I convened at the family compound for a weekend at Hamilton Lake, Indiana. We were also able to visit with my mother, brother Don and some dear high school friends. Sharon has been a real trooper with her communications and thoughtfulness. Trina and Wayne talked photography and Joy and Fred talked illnesses and how to survive the rat race. Oh yah, Steve cooked the steaks!

The drive coupled with the activity and continued pain and soreness in Joy's stomach kept her down for the best part of one day but she recovered enough to battle it out. Continued weight gain meets with the doctors approval but not from Joy's vanity perspective. She feels she worked so hard to lose a lot of weight and now to gain it back a "can" at a time is ridiculous. But, the problem is, she cannot eat enough without the cans to sustain, so we wait to see. The "stomach and eating" is still an unresolved issue. We will be leaving for Duke around June 19 th for a series of tests and appointments and hoping for some resolve. Her daily spirometry (breathing) testing continue to show declining numbers which "may" be indicative of ongoing or increasing rejection.

Thanks to everyone that continue their interest in her struggle to regain some quality of life and I will do my best to keep you posted.

Just as our family did, so did the Kennedy family by looking far and wide to find the best solution and treatment for Ted Kennedy's medical condition. Apparently, they found what we found and that was selecting Duke University Medical Center as the best place in the world that offered the best chance for survival. We wish Ted and his family the very best as well.

Update

Well, we were able to celebrate our first holiday at home in over a year with Mothers Day and finally able to attend Kayce's last orchestra concert of the year, both crowning achievements. I know we are only half way through May, but it appears that we will miss a return to Duke this month and prepare for the late June return. Joy's stomach surgeon would like to see her sooner but she remains adamant that she will not return in May. Period. Her stomach pain remains a relative constant with occasional sharp and stabbing pains and she is trying to avoid another surgery if she can with hopes that the pain will disappear. Most likely, the surgeon damaged a nerve which may or may not resolve itself.

Starting last week, Joy has committed herself to doing "something" each day and therefore forcing her get out of the house. It may be as simple as going to the doctor for blood tests, rehab sessions at the hospital, a mid day jaunt to a store or a late lunch. She does not have much stamina but hopefully this exercise will be beneficial. Despite her desire to drive, she has reluctantly agreed to the chauffeured family truckster. Hopefully, there will be a day soon when BOTH of us are confident enough for her to take the wheel on her own.

All in all, she has had several decent days in a row but for whatever reason, today is not one of them. Some of her test numbers have been declining which is indiciative of continued rejection so we hope this does not worsen.

Home Again

We arrived back home again, safe and sound yesterday afternoon and will try to get re-adjusted prior to another return trip in June. I am still a little hesitant to believe that we will miss going to Duke in May since we have been there every month this year. If Joy felt better, I would be more confident.

Stomach pain is still pretty intense and she remains very tired and still requires a lot of sleep. I wish I could tell you that she is better and improving each day but such is not the case. We still take things one day at a time. We had a nice dinner with our friends in Durham as I previously mentioned but that completely wore her out so I doubt if we do anything like that real soon.

I won't stop the blog this time but will probably only update weekly. We sincerely appreciate the loyal readers and followers of Joy's new pathway of life. We thought we understood when the doctors told us that a transplant would be trading one disease for another. We did not. Her heart, kidneys and eyes are getting some extra rough miles on them so we hope they can sustain through this.