Moving on...

There will be a new stage of treatment for Ron after May. He will have two more extracorporeal Photopheresis, ECP, treatments in early June, and this treatment will end. So Ron will have his central line removed. He will have had a Neostar almost 4 years of the almost 5 years since his transplant. He has had a neostar during his ECP regimen the past 3.4 years. 137 treatments after June's. Hopefully, his chronic GVHD symptoms will not return. What a mixture of excitement and nervousness I am feeling about this change.
Ron's new bone marrow is producing blood cells in or nearly in the normal range. The only significant deficiency is in his immunity products, so he will continue to have immunity infusions. He is progressing to having those infusions 2 months apart. (From monthly infusions for a looong time) There are really no improvements in his cognitive and physical changes. Ron continues to do odd things like tear napkins up into small sections, label everything, use highlighters and white out excessively, and shave off his eyebrows, etc.....all harmless. He uses a cane some if I am holding his other arm, walks slowly with his walker, and we use his wheelchair if it is a situation that requires some distance to cover. I do feel like we are in a stable routine.
The wound center here in Bowling Green is seeing Ron to help us get his leg wound healed from his fall out of bed in March. They are so thorough and professional...very impressed! Somehow he broke the brake handle off his walker when he fell out of bed during a bad dream. That is probably how he gouged his leg.
We plan to spend more time at the lake house over the warm months. So lucky to have two homes that we love and enjoy!

The Donor Revealed!

So very exciting this week to receive email and a picture of Ron's donor from Sweden!! It feels like the circle is completed with having this information. It might be my imagination, but I think there is a resemblance of him at age 50 (now) and Ron when he was 50. Amazingly, when Stefan registered in the Tobias Registry of Sweden, he was a college student over 25 years ago. Perhaps you remember that Ron had no matches in the United States, so the world registry was searched for a match. There were 3. One was considered "too old", one was not available, and Stefan immediately agreed to be Ron's donor. To harvest stem cells from the blood, a series of injections are given over a period of days to boost the number of cells. Stefan had a procedure to harvest these cells, and the infusion was flown from Sweden to Detroit, then traveled to the University of Michigan Hospital in Ann Arbor. The transplant infusion looked very much like a blood transfusion does. We are so grateful that Stefan joined the registry and then agreed to be a donor without hesitation.

Ft. Myers, Florida--6 years ago

We are near the 6th anniversary of Ron's first acute leukemia diagnosis. Although I try not to dwell on it, as with any extreme experience the events seem to be etched in vivid detail in my mind. The thing that has changed the least is how stoic he is. The biggest adjustment I have now is having less appointments to fill our schedule. I bet that sounds strange, but when the majority of your time for so long has been filled with a full medical schedule, backing off is an adjustment, too.
Ron will have his ECP light treatments for 2 more sessions. That means 2 treatments at the end of April and 2 treatments mid-June. His Neostar central line will be removed. Then he will have quarterly appointments and hopefully, his health status will remain steady. It seemed really strange to inventory medical supplies with an end date in mind. Medical supplies to care for the central line are delivered monthly.
Ron and I have enjoyed the NCAA basketball tournament...even though our favorites are already out. We have had a variety of weather here at the lake. Matt put the dock in for us this week while his family was here, and the pontoon has been delivered, and we've been out on the lake. Hope everyone has had a happy Easter and is/has enjoyed a spring break.

Wow! March has arrived!

I am calling it "the winter that wasn't". Where is the happy medium? Our daffodils are peeking out, and we have had warmer days but very windy.
Things have remained "about the same" in regard to Ron's health. That means that there have been a couple issues to deal with but not necessarily a crisis. He had a respiratory "cold" and I packed things for a hospital visit, but his regular antibiotic and antiviral medication fought it off. His oxygen saturation ran lower for a few days, but as is usual for him, he didn't develop a fever. Next on our agenda was 2 falls about a week apart. He fell backwards and hit the small of his back on our bedrail, leaving a big bruise and possibly a cracked rib. We did not go for X-ray or doc appointment. The second fall was more serious. He kicked during a dream and fell out of the bed, hitting the walker, cane, and possibly the night stand. He had marks from the top of his head to the top of a big toe. Because of quite a skin tear/ gouge on his lower leg, I could not help him get up. Our usual strategy is to get on hands and knees, bring a chair for him to raise his upper body, then help him up from his knees. I had to call 911 for paramedics. They gave him the choice of going to the ER or not…well, guess what? He didn't want to go to the ER. I will know if there is next time, to tell them at the door to not offer a choice. He probably should have had his head wounds and leg wound checked. The skin tears on both arms were what I consider routine now. The next day we returned to BG, and the home nurse did make a visit. He has a big bruised area on his left cheek, and scabs on the top of his head. The arms' skin tears are healing well; the leg wound will take awhile. Since paramedics and a home nurse have checked things out, I will keep doing what I am doing. We go back to Ann Arbor in 2 weeks for treatments and an appointment with the Bone Marrow Transplant Clinic. That will be 6 weeks between appointments which is the longest gap in 5 years. I feel confident that 6 weeks between ECP light treatments will be enough to avoid a flare of graft versus host disease.

Just adding this picture from last summer of sisters Abby and Lily (Andrew and Lisa). They just adore each other. Abby recently drew a life-size picture of herself for Lily to have so she wouldn't be lonely for her on school days.
Love, Ron & Jan

# 50 Valentine's Day as a Couple

I decided to add this collage here….the one I used on Facebook on Valentine's Day. If you did the math, Ron and I have been "a couple" since we were 17 and 19. We met when we worked as a bus boy and waitress at an Indiana Tollroad Hostess Restaurant in the summer of 1965. He entered his senior year of high school and I entered my sophomore year at Ball State University that fall. (now 18 and 19 in the fall) Both of our hometowns were near the Michigan-Indiana border. Mine in Brighton, Indiana and his in Burr Oak, Michigan. Now THAT was a loooong time ago! We married in 1970.

And what brings you to U of M today?

That opening with a new doc always takes me by surprise. (And where should I start?) We liked Ron's new Pulmonary doctor. Before the appointment with her, Ron had a pulmonary function test. I was pleasantly surprised that there has been no progression in the structural damage to Ron's lungs. That is the best case scenario; the damage can't be reversed. That being said, there is no change in his medications, and we were told that his lung infections/pneumonia will be treated in the hospital whenever he has them. Pretty much inevitable periodically, so I am to continue being vigilant about giving him his medications and get him to the ER quickly when there is a crisis. (Or call 911) His lung function is about 1/3 of what would be normal. His oxygen level is low normal at rest, and he can quickly have shortness of breath with exertion. So he doesn't have far to drop to be in crisis. He is going to have a six minute hall walk test to determine how his oxygen level changes with mild exertion. We scheduled it in March when he has his next treatments and doc appointment.
Today Ron had an immunity infusion to give him a boost. We were at the hospital 6 hours; he has a room like a hospital room and bed. That infusion took longer than usual; his blood pressure was running high, so we had to wait until it came down to 160s/80s. I am always thankful that he has his central line, so he doesn't have to have an IV. This morning I had to drive in heavy snow part of the way, so even though we allowed extra time, we were 20 minutes late. We have never skipped an appointment and only been late one other time...hundreds of appointments over the last 6 years. There were numerous slide-offs in a 30 mile stretch that really slowed things down for awhile.
The two Amish women who help clean at the lake are coming tomorrow. I am looking forward to seeing them...and having a very clean house!
Feeling peaceful at Gilead Lake.
Love, Ron & Jan

Super Bowl Sunday

We have traveled to our Michigan home. Weather permitting, we will remain here for a few weeks. If Winter decides to arrive, we will head back to Bowling Green. Both of us are looking forward to watching the Super Bowl with my sister and brother-in-law, Anne and George.
We are halfway through a series of appointments for Ron at Ann Arbor. Last week he had his two extracorporeal phtopheresis treatments. ECP. He is "graduating" to 6 weeks between treatments--from 4 weeks, so the next ECP is mid-March. This upcoming week Ron will see a new pulmonary specialist at U of M Hospital. He will also have full pulmonary testing. Seeing a new doctor is quite a process. I feel like it would take a book to explain what all Ron has experienced medically since 2010. It is a real practice in summarizing! Ron's lungs are his biggest problem. He takes singulair, 3 antibiotics, an antifungal, an antiviral, and 3 different inhalers to help him avoid lung infection. The other component of his medical immune system is an immunity infusion every 5-6 weeks. He will have an IVIG Tuesday. This infusion takes about 4 hours, and the antibodies that he receives have been donated from over 1000 donors. Team Hover is immense!!
I have emailed Ron's donor who is from Sweden, and also I sent pictures. I don't know if he speaks English! If he replies, I will write a special blog entry.
Love, Ron & Jan

Happy New Year 2016!

I have been remiss in writing blog entries and have a number of excuses. Something about turning the calendar to a new year was more troubling for me. It all started with thinking "I will turn 70 years old in 2016." I think I have come to grips with that thought. 50 and 60 did not affect me that way, but I remember that 40 did! In 1976 when I turned 30, I had just learned that I was pregnant with twins. What is there about entering a new decade?! Ron will turn 68 this year. Also, there is a bit of a letdown after the busyness of holiday preparations and celebrations in November and December. (Even though I am happy, too; they're over! As Andy used to say, one of those happy-sad things)

Oh, wait, this blog is about Ron's updates. So where are we, medically speaking? Things are mostly stable in many ways. Ron's medications have not changed for about a year. His medications can prevent most infections...3 different antibiotics, antiviral, and antifungal. We are transitioning to immunity infusions every 6 weeks instead of every month. He also has several meds to treat symptoms that result from lung damage and skin changes. His daily steroid, prednisone, has caused diabetes, and Ron still has his central line, a 3-lumen Neostar, which must be cared for daily. It is used when he has his treatments at U of M. In March, he will be tapered to 2 treatments at 6 week intervals, instead of monthly which has been the routine the last 6 months. In January of 2013, his treatments started with 2 treatments every week (For 3 months), then every other week for 18 months, then every third week, every month, and now progressing to every 6 weeks. Ron has now had 131 treatments total. These treatments alter the T cells in his blood, so they are not so aggressive in attacking his body.

The biggest worry is pneumonia or a fall. Ron was hospitalized with pneumonia twice during the summer. Because his regular antibiotics do not cover the more resistant bacteria, he is then treated intravenously with the big guns antibiotics. Ron was scheduled in June (but then he had pneumonia) to have oral surgery to clean up his mouth. All but one of his teeth are broken off at the gum line. He does not have pain, and all the antibiotics he takes prevent an infection. The changes in his mouth are a result of graft versus host disease, and he most likely wouldn't be able to have dentures. His mouth tissues are fragile. There is no plan at this time to reschedule that surgery. I don't know if I am up to the insurance fight that would inevitably happen. Our insurance has been amazing, but dental surgery is not covered.

Ron's physical limitations have declined very slowly this past year unless he is sick. He must use his walker, a shopping cart, or the wheelchair when we are out. Due to shortness of breath and deconditioning, he needs to sit and rest frequently. He does not yet qualify to have oxygen at home. I admire how he gets on his stationary bike once or twice a week. Ron does have limitations cognitively. He is very disorganized and cannot problem solve some everyday tasks. He no longer reads books and magazines but does check the TV schedule of sports in the morning newspaper. None of these things are new developments in the past year, so I do feel like we are in a routine in many ways. Actually, I think that was part of what I had to work through this month. In January you somewhat look ahead to the whole year, and when I did that, another year of caregiving and "the unknown" regarding Ron felt daunting. A whole year was a way too big chunk of time to think about. I had to adjust my thinking! Doing okay.

The Gift of Stem Cells

After more than 4 years of recovery time, Ron and I decided to submit the paperwork to possibly make contact with his bone marrow donor. The required wait time was longer because the donor wasn't from the United States. Ron did not have a match in the United States registry; when the international registry was used, there were 3 matches. We knew the donor was from Europe due to the timing of the flight that brought the stem cells to Detroit, then Ann Arbor. The transplant had been delayed one day due to requiring a second harvesting of stem cells. This seems like a lifetime ago.
Why wait more than 2 years beyond the required wait time when you are so grateful? Due to the many complications, repeated hospitalizations, physical and cognitive changes, we weren't sure what the donor would want to know. In spite of everything, Ron and I are so grateful that he is "still here", and Ron is amazingly accepting of his altered quality of life. During Ron's 9 months of remission between acute myeloid leukemia diagnoses, he was able to return to officiating high school volleyball, softball, and basketball. He ran in a 5K Turkey Trot at Thanksgiving. Life was back to normal. October 2010.

Then he relapsed in May 2011. Following chemotherapy to bring him to a second remission, he had his bone marrow transplant August 26, 2011. Although he was a 10 for 10 match with his donor, his new bone marrow has waged battle on his body, much like an autoimmune disease. Chronic graft vs. host disease. cGVHD. So…where are we now? The permanent effects from the transplant and the infections that Ron has battled through ("You do know that Ron is a miracle?" one nurse said recently.) have immensely changed his quality of life. But the leukemia has not returned, and Ron does have life, and there is much that we can still enjoy, so we are so grateful to a donor halfway around the world who was willing to give Ron this lifesaving gift.

My Christmas Letter 2015

I am not adding a letter to my Christmas cards this year. I plan to write a note here on the blog to catch up our news. This is my 500th entry on the Ron Hover's Update blog!! (I am still working on the cards that I mail.)
No one moved this year! (except Andrew from Iraq back home in Germany) That is newsworthy in itself. The next move will be Andrew, Lisa, Abby, and Lily from Germany to Hawaii. Niccole and Cole live in Fredericksburg, VA, and she did change high schools this year. It has been a good move for her. She continues to work on her doctorate at VCU. Matt, Kate, William, Anna, and Sarah live in Springfield, VA; Kate teaches at the same school, but Matt now works at Ft. Belvoir instead of the Pentagon. Cale, Jessica, Joey, Jack, and Allison live in Bowling Green, OH, and Cale is now teaching physics and chemistry at Eastwood High School. Best of all, no one is deployed. Andrew and his family are especially enjoying the holidays this year--starting with Halloween! He missed so much last year when he was in Iraq, including Lily's first birthday on January 1.
******Pictures of the kids, spouses, and grandchildren are below in the previous blog entry.******
Ron and I have enjoyed time at both of our homes; our Bowling Green villa is our second home instead of the Hampton Inn in Ann Arbor. I didn't count up our days in AA this year! Ron's treatments are now every third week instead of every other week, but we had several extra appointments there with hospitalizations in June and August for pneumonia. He also goes periodically to have special eyedrops made from his blood and for his immunity infusions.
I have included pictures of the youngest Troxells: Sophie and Ty. So fun to have babies at the family Christmas at my sister's home. The winter sunrises at Gilead Lake are breathtaking some mornings. This year we have our BG Christmas tree in the great room where we can see it all the time instead of by the den window where it can be seen from the outside…such a simple change but one that has been enjoyed daily!
We hope that all of you will experience the joy of the season and feel at peace. Enjoy reminiscing about holidays past and make new memories to carry you into the new year: 2016!!
Love, Ron & Jan

D.C. Turkey Trot, Lake Erie, France

The two Turkey Trot pictures show the Matt & Kate Hover Family and the Hover-Taylor Team. Our (Cale and Jessica) grandchildren at Lake Erie, and our Andrew & Lisa Hover Family touring in France (home in Germany).

Tis The Season 2015

Can't believe it has been a month since I blogged; that speaks to the time of year it is! November proceeded as planned. Ron has stayed pretty much the same, so we were able to travel to Virginia for Thanksgiving. The weather cooperated, and we stayed at Matt and Kate's in Springfield. Niccole and Cole came for Wednesday and Thursday; they live about an hour away in Fredericksburg. So fun to see those 4 grandchildren have a good time together. They are full of energy and the parents and kids ran as a team in the D.C. Turkey Trot. Mike, Niccole's significant other, spent Thanksgiving with all of us, too. Truly so very much for us to be thankful for!
Our Christmas with Cale and Jess's family will be in BG. We're planning on spending the majority of the next 3 months in Ohio. So far so good; the weather has been mild. This was Ann Arbor week. We spent most of 3 days "up there" as Ron had blood work, two ECP treatments, had more eyedrops made from his blood, a transplant doctor appointment, and 6 immunizations. When you have a bone marrow transplant all of your protection from your childhood immunizations is wiped out, so Ron has had to have all childhood and adult immunizations repeated; the last round was this week. After driving to and from Virginia last week and back and forth to U of M this week, I have had my fill of driving! Ron has not been able to drive for over 3 years.
When Ron had his doctor appointment, I asked about tapering part of his treatment for what is basically the fight between the blood products made by his new bone marrow and his body. This is called graft vs host disease and can resolve early on or even years after a transplant. The GVHD is what has affected his skin and lungs the most. In March he will transition to ECP treatments every 6 weeks from monthly. He has had ECP treatments (127) for 3 years now, having started with weekly ECP appointments. He has 2 treatments on back to back days each week of treatment. Besides ECP, he takes prednisone daily. That will not be tapered. 10mg. His variety of antibiotic, antiviral, antifungal, and lung treatment is unchanged. SO, we have one more day in AA this month because Ron is due for his next immunity infusion. His new bone marrow does a pretty good job of making platelets and red blood cells, but did not recover to produce adequate antibodies to fight infection. The immunity infusion IVIG picks up the slack.
The pictures below show recent activities.

Feeling thankful.

It is one of those times when I am feeling a shift in thinking. We are transitioning to spending more time in our villa in Bowling Green. Ron seems to have a preference for being here. We have no steps inside, and we are so much closer to the grocery store and other places to shop. We get out every day, so he can walk awhile. Even so, I know that it is really not enough exercise for him, and he has chosen to no longer go to out patient PT. He does occasionally use the stationary bike. It would be dangerous for him to walk with only the cane for any distance.
Next week Ron has treatments on 3 days in Ann Arbor. Hopefully that will boost him, so we can travel at Thanksgiving. He will also have another batch of serum eyedrops made from his blood.
All of the above: DONE!
Things went smoothly during appointments 3 of the last 4 days. Ron should be "tuned up" until December! His appointments are treatments to control his graft versus host disease which is an autoimmune disease and the other infusion boosts his immunity. His central line, a neostar, balked at one of his treatments, but a power flush got it working right. He has had this line since April 2014, and it is needed for his ECP treatments and makes life a lot easier for blood draws and other infusions.
Things at the lake are pretty much wrapped up for the winter. I sold the pontoon which felt like more of a relief than sadness. Bittersweet. It caused me grief on more than one occasion this summer. There is raking that needs to be done yet, but Ron always said to wait until all of the leaves are down!
I am starting to get a little excited about the first snowfall, even though it was in the 60s and 70s this week. At the same time, I am hoping that this winter won't seem so long. Planning to spend more time at the villa and planning on NOT getting snowed in at the lake this year.
Hope that you have exciting plans for a Happy Thanksgiving! We plan to spend the holiday with Matt's and Niccole's families in Virginia.
Love, Ron and Jan

Autumn in Michigan

I didn't upload these pictures in any particular order! The turkeys are in our backyard at Gilead Lake almost daily. In the winter, they roost in the crabapple tree to eat the fruit.
We had a good trip Up North. We stayed in Traverse City and visited 3 of our favorite restaurants that we had found on previous trips. My rocking beach, Christmas Cove, was totally changed by Mother Nature. Lake Michigan is up two feet, and when the ice went out this year, it pushed an amazing amount of golden sand up to the shoreline, burying all of the rocks! Ron and I are in Sleeping Bear Dunes Park in one of these pictures.
The white barn and beautiful maple trees are about two miles from our home; I took that picture yesterday; the colors are peaking here. Gorgeous!
Ron still enjoys traveling, sightseeing, and shopping! He had to use the walker to get around on our trip; he is too shaky when just using his cane. We don't return to Ann Arbor until the first week of November, and we still hope that we can travel to Virginia for Thanksgiving.
Love to all,
Ron & Jan

September 26, 1970

I have compiled a summary of Ron's medical history, so he can have a primary care physician here in BG. This is a huge job...hardly knowing where to start and where to stop! I had been urged to do this by a new P.A. Every situation is an emergency, requiring a trip to AA, so I didn't really see the point, but I am complying. Ron will see my family doctor, so at least he will have a snapshot of who we are. Because we are returning to Michigan for awhile, he will not have this appointment until the end of the month.
Ron and I have celebrated our 45th wedding anniversary, "in sickness and in health". We spent part of the weekend with my maid of honor, our host and hostess-guest book, a groomsman, and best man. (Anne and George, Rick and Tammy, Kirk and Sue) For ourselves, we have a new recumbent bike in BG! Ron wrote me a very sweet note; he continues to thank me every day for something that I have done for him as his caregiver.

This picture was taken about a year ago; when I think back to that time, I realize how Ron has slowly declined. The two hospitalizations in June and August have affected him; he didn't quite get back to where he was before then. He has decided not to go to out patient PT any more, and he has decided to just take baby aspirin for his blood thinner. I anticipate deciding not to have the oral surgery unless there is an improvement in his overall health. With all of that being said, we are still planning to take our fall trips to the Traverse City, Michigan area and Virginia. I feel like we will be able to do that.

Again, a picture from last year. Fall is such a beautiful season, and it is a time that we will reflect on the prior months of 2015. Some of it was very beautiful and happy, and some of it was so difficult.
Love, Ron & Jan

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!