November 30: Day +98 after Transplant

Nerve wracking! But good news; the results were back from Ron's bone marrow biopsy taken last week. Everything looked great but most important, no leukemia! He continues to be treated for low immunity (IVIG infusion), low platelets (transfusion of platelets), and the two viruses. As he continues to have his steroids tapered, he will better be able to fight the viruses. He is back on a stronger anti-viral tablet, so hopefully that will bring his level of the CMV virus back to a low level; otherwise, he will be readmitted next week for IV treatment. That particular IV treatment needs to be monitored closely, so hospitalization is required.
Starting next week, Ron's appointments will be located in the new Mott Hospital. Pediatric and adult bone marrow transplant clinics and in-patient hospital units for all BMT patients are located in this new hospital.
We have a few holiday decorations in our apartment, and with a 3-4 inch snowfall last night, it is beginning to look a lot like Christmas. I avoided the black Friday sales and have no regrets. We continue to enjoy watching football and basket ball games. How about those BB Buckeyes?! ...takes away some of the sting from the football season.
Love to all, Ron & Jan

A child's pure joy is good medicine!

Monday -Tuesday, November 28-29, 2011

Cold and rainy today with snow on the way... sounds like a good day to curl up with a book (or the IPad). We have eaten our way through the Thanksgiving left-overs and are starting to think about our Christmas cards; the season is definitely changing.
Ron had physical therapy yesterday and will again today. She comes to the apartment; his immune system and stamina will need to improve to be able to go to a public setting for PT. The doc called yesterday to change Ron's anti-viral medication. His CMV virus count was elevated. This stronger med and the virus itself can affect bloodcounts, so he will need bloodtests more than once a week again. He feels somewhat better, and his appetite has improved...just waiting to see some progress on the scales. Tomorrow will be a long day with 3 appointments at the hospital. Because of the locations of the appointments, we will use a wheelchair beginning when we arrive.
Thanks again for your continued support during "the long haul". We appreciate all you do to help us hang in there day to day.
Love, Ron & Jan

Thanksgiving Weekend: Thursday - Sunday Nov. 24-27

Watching the Michigan - Ohio State game and relaxing; that is the plan for this afternoon. The holiday weekend is passing very quickly. The apartment seemed so full of energy when everyone was here Friday. Andrew, Cale, and grandchildren went swimming in the complex pool; they also burned off energy playing soccer. It was a time so delightfully different than our usual daily routine. We are already looking forward to a holiday gathering around Christmas time. We will bring in 2012 in the apartment, and I have a few holiday decorations here to help set the mood of the season.
We hope all of you had/ are having a happy Thanksgiving weekend and are starting to transition to the winter-Christmas-New Year celebrations. Knowing that everything will be scaled back for us this year is amazingly easy to accept. I think that it has a lot to do with priorities, my energy level, and believing "less is more" at this point.
Love to all, Ron & Jan

Days 90 and 91 After Transplant: Nov. 22-23

Ron feels like his progress is agonizingly slow. Today he had a doc appointment, bloodwork, bone marrow biopsy, pulmonary function test, and echocardiogram. We were tired when we got back to the apartment! Niccole arrived in the wee hours and will stay until Saturday evening. Cale and Andrew's families will visit us Friday. Niccole and I are planning a "left-over lunch" that could last all afternoon, so we will work on food preparation on Thanksgiving day. It promises to be a warm, sunny fall day here in Michigan.
Ron will return to the clinic next Wednesday and also have a light therapy treatment. An infusion has been scheduled for Friday, and he will have physical therapy 3 times next week. The doc told us that it takes about twice the amount of time to recover from steroids as the time that you are on steroids. Ron continues to have his steroids tapered each week, but he has been on them for about 10 weeks. So this recovery is going to be the long haul, but as long as we keep moving ahead, we find great reward in that.
HAPPY THANKSGIVING!
Love, Ron & Jan

Sunday-Monday November 20-21

Just grinding. Uneventful feels good. We are back into a routine and slowly moving ahead. Ron had a clinic appointment this morning and received an infusion to strengthen his bones. It was a relatively quick appointment, and his physical therapist came this afternoon for about an hour. She will start coming three times a week after Thanksgiving. Ron is maintaining his weight..right at 160 pounds. His appetite has definitely picked up.
Yesterday we went to Meijer, and he rode a cart. It had been many weeks since he had gone up and down the aisles in a store. He has to wear a mask when he is out in the public. Tomorrow I will do some things to prepare for Thanksgiving. The festivities might be scaled back but not the thankfulness. It will be more about family than a feast.
Love and feeling grateful for all of you...Happy Thanksgiving!
Love, Ron & Jan

Friday & Saturday, November 18-19, 2011

We are cruising along with 4 days at home; then back to the clinic on Monday. Ron is maintaining his weight, and both of us are anxious to see an upward trend. The physical therapist suggested the goal of walking with a cane (now a walker) by Christmas. The doc told us that we might be able to go home for a few days at Christmas time. Ron's blood counts continue to be low but trending up slightly each bloodtest, so his new marrow is working. Amazing! Still amazing that all of this is possible and so grateful to everyone who has contributed medically and also with emotional support for both of us. (that's you too:)
My next shopping adventure is to find yaktrax before the snow and ice arrive. We will both have to be especially careful this winter. We are looking forward to seeing kids and grandkids next week. Good medicine. It seemed like a very positive turning point when Cale's family visited Ron during his last hospitalization. All of our siblings continue to visit regularly and bring a nice break to what is now routine, as well as bringing our mail and things we need from home. (example: winter coats and small Christmas tree). Ron is concerned that we might need a moving van to go home.
Hope you have a great weekend! I remember when Ron moaned when he realized that we would be living in Ann Arbor for football season. Maybe we will be home to watch a bowl game or two.
Love to all, Ron & Jan

Day #85 after transplant

Wednesday was a full day with Jan getting her new military ID card and Ron having bloodwork, ECP, and a doctor's appointment. We finally asked the question "what criteria needs to be met for us to go home, and how long do you think that will be?" The answers are that he needs to be off the steroids and that will be 1-2 more months here in Ann Arbor. The steroid dose was reduced again yesterday, so now we watch for any flare-up of GVHD on his skin. Ron is maintaining his weight and seems to be a little stronger. He has an infusion Monday to strengthen his bones and a battery of tests on Wednesday. (before Thanksgiving). Today the physical therapist will come in the afternoon. So we move ahead with your support and good wishes. Thanks for caring.
Love, Ron & Jan

The View from Ann Arbor "Home"

The last of the fall colors is spectacular---the view through the slider in our apartment's living room!

We moved to Ann Arbor on August 15, so today is our 3 month anniversary. So much has happened since Ron's bone marrow transplant on August 24. I should write a book; the blog would be a good start! Thanks for following our journey and offering your support in so many different ways. We are continuing in a positive manner since Ron's discharge on Veterans Day. A physical therapist and nurse are making home visits.
Love, Ron and Jan

Sunday at the Apartment: 11-13-11

What a good day! Ron couldn't believe it when he woke up somewhat rested for the day at 7:00 A.M. He had only been up during the night 4 times. The new med for the bladder spasms apparently is helping. Ron also had one extra infusion of cidofovir while hospitalized...this med treats both of the viruses he continues to have symptoms from. Overall, everything is improving. Tomorrow he goes for his bloodtests early in the morning. The PA will call in the afternoon if any of his meds need to be adjusted. He has an appointment Wednesday for bloodtests, ECP light therapy, and his primary doctor. We so hope that everything continues in this positive mode. We will have much to be thankful for this Thanksgiving holiday.

The weekend begins! Day #80 after transplant 11-12-11

Ron was discharged yesterday. It is a whole day process to see the doc and PA on morning rounds, finish the daily IV meds at the hospital so we don't have to do them at the apartment, go over prescriptions for home, order meds for home delivery, receive a summary of hospital treatment, go over instructions with the PA and then again with the nurse, and go to the hospital pharmacy to pick up other prescriptions. We had accumulated less in the room, so packing up belongings only required 2 suitcases. I took those to the truck before Ron himself left. He walked out with his walker, and it is a hearty walk to the parking garage. We were back to the apartment by about 6:00 PM.
Whew! It is the 9th time we have gone through the discharge process at U of M Hospital, so we know well that when they tell you at 10 AM that you're being discharged that it will be an all day process, but you go home prepared with instruction for care and everything that you will need. Ron will be on most of the same meds and IVs at home. He is trying something new for bladder symptoms and is also taking an appetite stimulant. PT will continue 3 days a week at home, and eating and exercise are vital to regaining weight, stamina, and muscle mass. The goal will be to progress enough so that we can return to Gilead Lake; we are still hopeful that that will be some time in December. Ron goes back to the clinic Monday and Wednesday next week. They will follow his progress and blood counts closely. At one point his weight was 156 at the hospital but now in low 160s. The challenge will be for me to cook well, but only Ron should gain weight!

Celebrate All Veterans Today!! 11-11-11

Thank you to all veterans. Thank you for your service and thanks, too, for the sacrifice that families have made to support their family members who serve or have served. We do appreciate you.
We may have reason to celebrate even more today as we are expecting Ron to be discharged after 10 days in-patient at U of M Hospital. He is feeling much better than when admitted on November 2. Progress is hard work requiring him to eat with little appetite and walk and exercise when he only feels like lying in bed. Any pep talks will be welcomed!

Wednesday, November, 9, 2011: 8th day hospitalized

Ron is continuing to improve. He walked 3 laps in the hallway today (17 laps=1mile) and used the recumbent stepper for 20 minutes...great progress since he was admitted and basically in the bed the first 5 days. He is regaining his strength and should be able to go back to the apartment by Friday. The only major change in meds was dropping the one that he had an adverse reaction to. Ron continues to test positive at a low level for the two stubborn viruses, CMV and BK. The BK virus is the one affecting his bladder, and those symptoms could last for several weeks yet. The symptoms are not as severe now but more than just annoying. He will go home continuing the same two daily IV meds as before and several meds in ointment, pill or liquid form. I have to use a detailed chart to record his meds and keep them on schedule. His slight rash on his arms has resolved this week. GVHD of the skin is reddish when it starts, then browns, and lastly, peels with new, normal skin underneath. This process takes quite awhile. The goal is to continue lowering the dose of steroids each week without more flare-ups of GVHD of his skin or gut. This current flare-up did not have gut symptoms.
Although this hospitalization was a "downer" for both of us, both of us are now back on track with the " we can do this" attitude. Accepting and facing these challenges is a part of the recovery process. Thanks for keeping us in your thoughts and prayers.
Love, Ron & Jan

Tuesday, November, 2011

Okay, if we have to readjust our thinking, we will do it. Both of us felt discouraged with Ron back-sliding with his recovery to the point it was necessary to be hospitalized again. No doubt it was necessary, and in a way, it seemed good to have an answer to the side effects that he was experiencing which were caused by one of his medications. Not that everything is perfect now, but he is back on the road to making progress. They continue to fine tune him with various IV medications and hydration. The physical therapist is working with him each day, and we have "homework exercises." -- not that I would call myself his personal trainer.
Ron's nurse practitioner, Sarah, is seeing him daily now , so it feels like we have more continuity and one on one attention. She took care of Ron at the time of his transplant, and her home town is near ours. It feels good to have a plan to get through this bump in the road. So many things are about finding a balance-- we want to remain optimistic but have to stay guarded as well -- in regard to the length of time it might be necessary to live in Ann Arbor.
Okay, if we have to readjust our thinking, we will do it.

Monday, November 7, 2011

Ron will be evaluated today as to his progress after 5 days of hospitalization. He is categorized as "failure to thrive" which means he is not eating enough or exercising enough to move ahead with his recovery. The transplant is producing new blood cells, but his body continues to fight the graft enough to have caused a slight rash again on his arms. This being said his meds to counteract the rejection are significantly scaled back, so that is progress. I am not sure when they will try reducing steroids again. He has not left the room since admitted, so I am very glad that the PT will continue working with him to exercise and walk.

Day # 74 after Bone Marrow Transplant

Please continue to use the following address. Any mail that comes in for Ron I will take to the hospital each day. Thanks, Jan

Ron & Jan Hover
1455 Oak Valley Drive
Apt. 103 Bldg. 26
Ann Arbor, MI
48108

Saturday, November 5, 2011

There is really not much new to report on the weekend...that can be a good thing!! Ron is sleeping a lot and eating a little more, but I am not sure what the results of the calorie count are. I am trying to find an effective balance between encouragement and nagging when it comes to his eating and exercising.
We have watched some football but did not get the Buckeyes game so followed its progress through ESPN gamecast on the IPad. I am still catching up on my sleep but do feel like I am rejuvenating. Ron will probably be hospitalized all week.
Love to all, Jan

Friday, November 4, 2011

Ron is where he needs to be. They are tracking what he eats to see if he will need some type of IV nutrition starting Monday. He was given a med to boost appetite. The physical therapist is also working with him. He will need to be eating an adequate number of calories, be able to walk safely with his walker, and the symptoms of graft versus host disease gone. Dr. Magenau visited this evening on his way home; he is Ron's primary BMT doctor. Another doctor is the service doctor on the unit, but they work in tandem to provide Ron's care. I asked the difficult question if 100 days was still a realistic goal for Ron to be well enough that we could go home. That is no longer a possibility, but I could not ask how long he thought it would be. This is day #72 past transplant day. We moved to Ann Arbor August 15. Today when I put up pictures of home in Ron's room, I felt homesick, but this is what we need to be doing because we have a lot of things we still want to do together. This recovery is the long haul.

Today Ron had his ECP light therapy in the room; in December he will go for clinic visits and ECP in the new Mott Hospital. They had the dedication ceremony yesterday. The new hospital is the children's and women's hospital and all bone marrow transplant patients. It is attached to the existing medical center complex. I don't know if I have ever mentioned that parking is inside huge parking garages, so we are never out in the weather when we come for appointments or when I come to visit. The social worker provided me with a parking pass, so I only pay 50 cents a day to park, and we have a handicap parking permit.
Thanks again for your support in so many ways. We truly feel your presence out there, and it means so much to us.
Love, Ron & Jan

Day # 71: November 3, 2011. Readmission to Hospital

Yesterday when we came into the cancer clinic for Ron's scheduled appointments, we knew that we were at a point where he needed to be readmitted. He was extremely weak, and once the swelling was gone which was one of the side effects from the medication that was stopped on Friday, it was apparent how much weight he had lost. (over 45 pounds since transplant). His bloodwork showed that his kidney function level was not at what they consider a minimum level. He has almost no appetite, so the plan is to give him a tune up with increased nutrition, and to change meds to help bladder spasms.
They have also put him back on IV steroids and upped the dosage slightly. He had some "pinking" of skin again and slight rash on his arms, face, and scalp. This could indicate some graph versus host disease returning to his skin and would be a concern. He had been gradually lessening his dosage of steroids each week because although steroids reverse the GVHD, they weaken the muscles. He will have daily visits with a physical therapist during this hospitalization. She has visited already this morning and her passion for planning an activity program, assisting, and evaluating oncology patients was evident. She is coming back after lunch to finish his baseline assessment. We are lucky that she is in rotation in the BMT unit for several months to come. The transplant social worker has visited us this morning, and food service had left diet coke for me before I returned at 8:00 this morning. They truly take care of both of us. Julia, the head nurse, talked to me last night about using this time to help myself renew. I slept at the apartment last night and will continue to do so. Also, I have a couple things that I need to take care of, so I will do those errands here in Ann Arbor. I hadn't felt like I could leave Ron for the couple hours that would be needed and because of the personal nature of some of his care, I chose not to get someone to cover for me although there have been several offers.
Love, Jan

A New Month! November 1, 2011

The medication that Ron had been taking to improve bladder symptoms but had never seemed to help, had actually been aggravating his bladder and causing mental confusion and hallucinations. Bottom line: he is much better than over the weekend. He had started on a low dose 3+ weeks ago, but it was not apparent that it (ditropan) was causing adverse side effects until last Friday when after taking a prescribed higher dosage in the evening. Things aren't perfect, but he is much better. It had also caused extreme swelling of his feet and made it difficult to swallow pills. Everything is resolving.