We continue to spend time in Ann Arbor 3 of 4 weeks each month for a variety of reasons. Ron has had an ECP treatment-- his #122 I believe. He has also had an immunity infusion. Next week he will see his eye doctor and have blood drawn to have eyedrops made using his blood as a component. Those eyedrops have been like a miracle for him. GVHD caused not only dry mouth but also dry eyes, with his saliva glands and tear ducts not working right. The following week he will have 2 more ECP treatments, and then we are keeping our fingers crossed for a 2-3 week vacation from AA. We plan to go Up North to enjoy Pure Michigan's fall weather and colors.

Give hugs to your family members.

Ron is recovering nicely from pneumonia. We are finishing up his at-home IV antibiotics in 2 days. He has had a return visit to his Infectious Disease doctors in Ann Arbor. Progress is good, and he has tolerated this treatment well. He is already discharged from at home physical therapy, and I am trying to convince him that he should do some out patient therapy.
We did head to the lake on Ron's birthday, Friday, September 4. Have medical supplies; will travel. We were looking forward to family time with my siblings when our family experienced a terrible tragedy on Saturday, September 5. My niece Kara's husband Andy was killed in a car accident near Granger, Indiana. They were planning to leave for their Wall Lake cottage later that morning. My sister, Anne, and brother in law George live at Wall Lake- 10 minutes from our home. Two of their daughters' families have cottages next door to their year around home. Anne and George have made it manageable for us to keep our Michigan home. George takes care of the yard. They kept our kitty Blue when we lived in AA over 9 months. They water my flowers when we are gone, etc. George takes Ron golfing which is no easy task. We spend time at each other's homes. It has been an excruciating 10 days for them with a much-changed future abruptly thrust on them. The visitation and funeral were in South Bend, Indiana last week. With the help of my brother and sister in law, Gary and Vicki, and our son Matt who was able to fly in from Virginia, Ron and I were assisted in our trips to S.B. It was necessary to have a wheelchair for Ron. We loved Andy, too, and are heartbroken for my sister's family. Andy was an amazing husband, father, son in law, uncle, addition to our family, business man, and a personable guy. So much more that I could say here.
The picture below was taken about 8 years ago when Andy and Kara's younger daughter was a baby. Andy is holding her, and Kara is next to him. Their son is now 14 and daughters 11 & 8. Griffiths are pictured here with two of their daughters' (Jody's and Kara's) families--- all living in Indiana. Wendy's family lives in Iowa.

Happy Birthday 9-4-48!!!

Check Up Today

Today was a hospital discharge follow up appointment following Ron's week in the hospital last week. He also had his 120th ECP treatment. His care team spent a lot of time with him--almost two hours. He was feeling overwhelmed by the end and just sat with his eyes closed. I felt pretty much the same way, but I kept my eyes open. Because Dr. Mag wasn't on service for in-patients last week, there was some catching up to do even though he'd had a summary of what happened. We saw Tim briefly, Dr. Mag's nurse, and another doctor, a fellow working with Dr. Mag. He had seen Ron last week when he was observing during rounds.
We spent a lot of time talking about DVT, pulmonary embolisms, and blood thinners. Ron doesn't want to do the daily lovenox belly shots any more, and even very low dose xarelto caused too much bleeding. Other blood thinners require frequent bloodtests to monitor dosage, so Ron is taking the option of one 81 aspirin daily. baby aspirin.
Dr. Mag told me briefly about two new drugs that patients with active, early stage chronic graft versus host disease are trying now. They would not reverse the damage that Ron has to eyes, mouth, lungs, and skin, but it would be wonderful for new transplant patients to not have to go through everything Ron has.
Just to give you an example of how Ron has changed and is mellow, the new doctor when examining Ron's mouth and teeth somehow mentioned that the way Ron's mouth is restricted in how much he can open it--is called fish mouth. I said well, thanks, I would have been okay with not knowing that. But Ron thought that was pretty funny and made a fish mouth a few times to make all of us laugh.
Then we were off to ECP for 2.5 hours, and while there Ron's infectious disease doctor who is monitoring Ron's bloodwork while he is on the IV antibiotics at home, called to tell us that he is slightly dehydrated and needs to drink more fluids. But otherwise, he is doing okay on this stronger antibiotic. Next week Ron will have another ECP treatment and bloodwork. In June Ron had 9 days of IVs at home of the same antibiotic; this time he will have 18 days.
My rambling went out of control...too many details above to say that Ron is doing okay. Me,too!