New Year's Eve

What better time of the year to reflect than New Year's Eve... But not so much on what Ron and I have experienced this year but on the support groups that surrounded us medically and emotionally. It is overwhelming to look back and hope that you have thanked everyone enough. There has been gardening, raking, fall clean-up, lawn mowing, downspout repair, mail delivery, dock removal, food, cookies and brownies, fruit, magazines, books, lotions, artwork from the grandchildren, holiday themed gifts, cards, texts, emails, and thoughtful notes for all the occasions that have passed since our move to Ann Arbor in August. Positive thoughts, concerns, and prayers have supported and comforted us during the times when we feel so fragile. There have been oncologists, bone marrow transplant doctors, physician assistants, R.Ns, Nurse Practioner, Techs, and other friends from the hospital and clinic. There was Randeep, a spunky young nurse who graduated and married in the past year. We cared so much for her as she cared for both of us. Allison could dish it out and tell it like it is..no excuses or pity parties allowed. She had lived this experience herself at a much younger stage of life. ..Kathy so professional, genuine, and tuned in to our needs and such a help in preparing us for what to expect. And now Dr. Magenau, our nurse Maria, and P.A. Tim coordinate Ron's medical care, but they mean so much more to us.
So a sincere thanks to all of you for your part in letting us know that we were not alone. Bring on 2012! It is going to be a great year.
Love, Ron and Jan

Friday, December 30, 2011

Ron's Wednesday appointments went smoothly, and today he had physical therapy at home. At this time, only one doc appointment is scheduled for next week. Ron's steroids were slightly tapered again, but we were told that the tapering will need to go more slowly now. We need to ask for a projected timeline. He will be weaned off medrol, then budesonide, and lastly tacrolimus. His weight stays fairly steady around 155 pounds.
Have a happy, safe New Year's Eve!

December 27, 2011: Day 125 after Transplant

Today's clinic visit went relatively quickly because today's bloodtest indicated that Ron did not need a platelets transfusion. His blood counts are still low but improving since his antiviral med was changed. We do return tomorrow for an appointment with the PA, breathing treatment as a precaution to prevent pneumonia, and his photopheresis light therapy treatment. We will be there several hours and are anticipating that the steroid dosage will again be lowered. Yeah!!
It has turned snowy and cold and looks and feels like winter. Today I worked on the last of my Christmas cards; there might be a few stragglers yet to do because I need to recheck my list. I really missed having Ron organize the list and address the envelopes.
Ron continues to feel better than he has for quite awhile, and we are so encouraged that we are in the last weeks of our stay in Ann Arbor. Ron will continue to be followed closely after we move back home, but we really don't know any details of that yet. It feels good to be thinking about moving back to Gilead Lake. We are expecting to move home in February after 6 months away.
Have a good new year's eve!

December 22-26, 2011

We have been enjoying family the past few days as I am sure most of you have been doing as well. Niccole and Cole have been staying with us for several days; Andrew, Lisa, and Abby came to visit, and we traveled to Bowling Green for Christmas Eve and Christmas morning. It was only the second time that we had left Ann Arbor since mid-August. (and the first overnight). As we have traditionally enjoyed for several years now, we attended services at Cale and Jessica's church and then had a late dinner with her family at her parents' home. Ron had set goals to be able to do this for Christmas and to be able to walk with just his cane. It was a triumphant time, and we were tired when we returned to Ann Arbor, but so happy to have had this Christmas to enjoy. So much fun at this time of the year with 7 of the 8 grandchildren still believing in Santa and elves!! The Christmas cards, notes, letters, texts, and pictures we have received have meant so much to us. We have truly felt the joy of the season.
Back to our medical routine tomorrow! Ron has appointments on Tuesday and Wednesday. Many aspects of his recovery seem evident to us. He is walking much better and is overall, just stronger. He lifts weights and has other exercises he does. His appetite has improved. 2012 will be a great year. It is time to start making some new year resolutions!

Wednesday, December 21, 2011

Niccole and Cole have arrived for Christmas! The plans are in motion, and Andy, Lisa, and Abby come tomorrow. Niccole takes over a majority of kitchen duties, so how great is that?! I love it. It will be 2012 before we know it, and it promises to be a better year for us.

Ron did have his weekly check up today and will return Friday for another blood test to monitor platelets in case he needs a transfusion. They are also watching his ANC number as it has dropped, and it guages how effective his immunity is. At this time they have scheduled 2 appointments next week and have slightly tapered his steroids again...moving in the right direction! The really good news is that he had his first negative CMV virus test, so they changed his antiviral medication to one that is not so hard on blood cells. His blood counts should begin an upward trend again in the direction of the normal range. Indeed, Merry Christmas!
Ron & Jan

December 20, 201

Not to worry...things are on track here for Ron's recovery and Christmas. Even with scaled back holiday plans, it feels busy with limited shopping, wrapping, and cards to mail.
Ron is definitely transitioning from the walker to the cane. Tomorrow he has labs and a clinic appointment, so those bloodtests usually drive how the rest of our week will go. Weight gain is slow, but Ron is able to have most foods but has to be careful not to have too many sweets or fats, or it upsets his GI tract. He has had no more severe abdominal pain. Moving ahead, grinding.
Make happy memories during the holidays! We have enjoyed holiday messages and letters telling of 2011 achievements and adventures. I might put out a two-pager for 2012. Ron and I have been making lots of plans!
Love to all, Ron & Jan

Home for the Holidays: Ann Arbor 2011

We have made our apartment look Christmasy with decorations from home. (and a huge, gorgeous poinsettia!) I asked Ron to make a list of our Christmas homes since we have been married, so....
Starting in 1970: Mt. Pleasant, MI - Central Michigan University
Starting in 1972: Lawton,OK and Ft. Sill, Oklahoma
1975: Baumholder, West Germany
1978: Ft. Sill, Oklahoma
1981: Knoxville, TN, - University of Tennessee
1984: Leavenworth, Kansas - Command and General Staff College
1985: Heidelberg, West Germany
1989: Bowling Green, Ohio - Bowling Green State University and military retirement
2008: Bronson, Michigan (Gilead Lake) Jan's retirement and Ron's 3rd retirement
2011: Ann Arbor, Michigan: temporarily living at 1455 Oak Valley Dr. Apt.103 48108

Saturday, December 17: day 115

Light snow, tree lit up-- one inside and one outside, fireplace going, and wrapped packages under our little tree..very festive! Ron's brother, Rick, GG his mother, and Tamra will arrive soon for pie and ice cream. The mood should be set for me to work on our Christmas cards later today.
Ron did have his bloodwork done yesterday and had a transfusion of platelets. It took 4 1/2 hours at the hospital; it was not a well-oiled machine yesterday. Frustrating for me but the good news was that his lab tests showed liver enzymes had improved significantly. We do not have to return until Wednesday.
Enjoy the festivities of the season and again we thank you sincerely for your support in a myriad of ways for Ron's recovery from the bone marrow transplant. It has done so much to keep our spirits positive.
Love, Ron & Jan

Ron's New Bone Marrow

I keep forgetting to tell you that the cytogenetics tests from Ron's bone marrow biopsy showed that his bone marrow is now 100% from his donor. We continue to thank him in our hearts and want to express our gratitude to him when the two year mandatory waiting time has passed.

Thursday, December 15, 2011

...just a quick note to let you know that Ron has not had any more pain the last two days. He has a follow-up appointment Friday morning to re-check his bloodwork and to have a transfusion of platelets. The valcyte that he takes for the CMV virus is hard on the bone marrow..especially his platelets level. The doc is planning to keep him on valcyte until Ron has a negative result on the virus test, so he will need transfusions periodically as a result. So there is a plan to get through this time, and except for the one day of abdominal pain, Ron is feeling pretty good. Hopefully, it will be possible to taper the steroids again next week. Home by February 1???

Tuesday-Wednesday December 13-14, 2011

Felt like we had hopped back on the roller coaster yesterday... Ron was awake and up at 6:00 with lower abdominal pain. Two oxycodone didn't phase it, so I called the clinic at 8:00, and they told me to bring him in to the ER. In 41 years of marriage that was the first time that he asked me to take him to the ER. He was given morphine which controlled the pain rather quickly. They were not sure what was going on, so he had a CT scan. That ruled out appendicitis which was a possibility. They do know that he had some internal inflammation where the pain was, but he didn't have any other symptoms like fever or vomitting. The bloodwork showed his platelets were quite low, so in the afternoon he was taken to the infusion center in the new BMT Clinic. There he saw the BMT doc on call and our regular nurse. It was a long day: gone 8:30-6:00 and then back this morning at 7:00 for more bloodwork and appt. with his regular doctor. Yesterday they allowed him to go home because he had a scheduled appointment early today. However if the pain had returned (it didn't ), he was to return to the hospital for admission.
Ron's bloodwork today showed that his liver enzymes are elevated, so they have dropped one of his meds, and additional bloodtests were taken to check for other viruses. He will go back on Friday for more platelets and bloodtests. He feels very good today, and this whatever this is, could dissipate on its own and not have been anything significant other than the pain he had yesterday. Because "something is going on", they were not able to taper his steroids today.
Love to all, Ron & Jan

Day 110 after Transplant: December 12

I have been working on the Christmas cards, so this year I am really appreciating the past years when Ron addressed all of the envelopes! Either the viruses or the meds for the viruses give Ron tremors, so handwriting is just too frustrating for him. I am hoping when meds are adjusted again on Wednesday that the tremors will go away. (If so, he can help with the cards because I will not be finished:)
When we were home yesterday, I hunted down our Christmas stockings and mugs. I saw our tree in the closet downstairs and my tubs of decorations. The thought of using all that stuff, and I like stuff, would be overwhelming. It reminded me of how it felt good to simplify things when we used to spend weekends and summer days at the cottage. My sister, Anne, and I have often reminisced about this. It is amazingly easy to allow yourself to adjust to what must be. As you might be able to tell, I have a lot of time for reflection.
Less than 2 weeks to Christmas and not stressed. Too much.
Love, Ron & Jan

Weekend: December 10-11, 2011

It has been a good weekend. Knowing that Ron doesn't have a doctor's appointment for a week (Wednesday to Wednesday), is a first time happening and a sign of his progress. What to do with this extra time and feeling better?? We decided to take a day trip home to Gilead Lake. That meant packing meds, IV pole, etc., so I suggested that we just spend the night, too. Ron felt that we should come back to Ann Arbor; I think both of us feel "medically safe" here, so we did return after several hours of just enjoying being home. (and when the Detroit Lions game was over) The lake has not started to freeze yet, but there is some snow on the ground and many migrating Canada geese on the lake. We also saw 3 swans, a diver duck, a few neighbors who were surprised to see our truck in the driveway, and the Troxells. It just felt good to be home, but I would say that to cope with all of Ron's recovery, I have somehow made time feel irrelevant and numbed my emotions as a coping mechanism. No, I am not a zombie; but by doing this, I am feeling and acting pretty normal.
We are seeing some glimpses of the end of Ron's treatment here in Ann Arbor. We will be here about one additional month as he continues to be weaned off steroids and has physical therapy in our apartment. The next step will be for him to go to a public facility for PT...when his immune system has improved.
Have a great week and enjoy all that you are able to do to prepare for the holidays. If there is an elf on the shelf at your house, enjoy! I know of 3 elves named Shred, Twinkly, and Frosty:)

Thursday-Friday December 8-9, 2011

It is snowy white out there again this morning! We put twinkling white lights on the first pine tree outside our living room slider, and it looks so pretty this morning. I have wrapped a few packages to mail, so it is just enough to feel in the spirit but not stressed.
Ron had physical therapy yesterday and will again today. I found him a red cane but he is not ready to transition to it yet. His upper body muscles are stronger than the muscles in his legs.
I didn't mention in my last blog that he also had a thorough eye exam Wednesday. He is in a study where his 2X daily eyedrops have a steroid in them instead of using Restases which is the protocol eye drop. Eye changes especially dryness, change in vision, and change in eye pressure can be side effects of the transplant procedure. Although he does have some blurriness at times, his eyes tested 20-20 with his glasses, and tear production and eye pressure were normal. He had a series of tests that lasted over an hour. To measure tear production, a blue dye is put in the eye while it is numbed, and miniature white candy cane shaped papers are hooked at the outside lower lids of his eyes, he wears those for 5 minutes, and blue tears change the color of the papers. My eyes are watering as I describe it! This was to test for dryness of his eyes, and his eyes are still normal. She told us that eye and vision changes have usually presented themselves by now if that is going to happen. So, more good news regarding his eyes!
We hope all of you are feeling the joys of the season and are not too stressed with holiday preparations. Although we had not planned on spending Christmas away from home in Ann Arbor, a quiet acceptance of what must be has settled in. It certainly does not measure up to many of the things that Ron has had to endure this year, and in some ways, it simplifies things.
Love, Ron & Jan

Ron's phone is working again, and he is able to text.

Ron's Phone

Ron's phone is not receiving texts now but can take a phone call. I will need to head to a Verizon store. We have tried several things ourselves, and I did some troubleshooting online but can't figure it out!

Tuesday-Wednesday, December 6-7

It was a good day. Ron's pill medication is controlling the CMV virus, so he will not need to be hospitalized for more aggressive treatment. The doc also tapered the steroid dose again today. Because the new clinic is only for adult bone marrow patients, it is much less busy. Pediatric patients have a separate clinic, and patients with other cancers continue to be treated at the cancer center. The clinic nurses will also spend time with patients during appointments in addition to the PA and doc. In the past although we had phone contact with the nurses, Ron did not see them during appointments. This is a great change!
Ron will continue to have two daily IV infusions at the apartment and continue with the same medications. His weight loss is not greater than what they anticipate, and they expect that to turn around soon. Indeed, a good day:)

December 5, 2011: the learning curve

We were off to the brand new Bone Marrow Clinic and Infusion Center at 7:10 this morning. This meant going to a new parking garage as well. The BMT Clinic is housed in the new Mott Children's and Women's Hospital at the University of Michigan Medical Center and is connected to the existing center. The BMT Clinic falls under the Comprehensive Cancer Center but is housed at Mott's instead of the Cancer Center. Only the BMT Clinic moved to the new hospital. It is located on the 7th floor of the hospital, and the in-patient hospital ward for BMT patients is housed on the same floor.(both pediatric and adult bone marrow patients)

That being said, everything went quite smoothly considering Ron was the first patient to receive a transfusion in the new infusion center. He received platelets today. The valcyte that he is taking to fight the viruses is hard on the bone marrow, so he may need additional transfusions of platelets or red blood cells during this treatment. He had a bloodtest this morning (That is on the 2nd floor of the new hospital.) to see how well the valcyte is fighting the CMV virus. When Ron sees the doc on Wednesday, we will know what is next...so hopeful that he won't have to be admitted for IV treatment for the virus that must be done as an in-patient. We really don't care to see the new hospital rooms although they're said to be lovely. Ron continues to eat well at home but is losing weight; I really don't know at what point this might be a factor in another hospital stay. When we first got home 11-11-11 his weight hovered around 160. He weighed 153 this morning. Finally, the swelling in his lower legs and feet is resolved, so that was probably a part of the weight loss. The GVHD of the skin has not returned...good news! The physical therapy sessions are scheduled 3 times a week at home, so we do continue to feel like we are moving ahead. Also, we anticipate the steroids being tapered again on Wednesday. Thanks once again for the support that continues to come to us in many ways. We appreciate your messages, emails, cards, prayers, texts, and positive wishes and thoughts. Every gesture helps more than you probably imagine.
Love, Ron & Jan

"After fall, comes winter..."

a quotation by four year old Abby Hover when asked about the year's first snowfall

Day 100!! December 2, 2011

It still feels like a very special number even though we are not making our plans to move home. The graft versus host disease which affected Ron's skin and gut soon after transplant required a high dosage of steroids to control. He continues to be slowly weaned off the steroids and cannot go home until he is off the steroids. They have been dropping him a quarter pill each week. He is on 1 pill each morning now. (1 1/4 pills last week) Because of the steroid treatment, his medications for the two viruses that reactivated have not been as effective, so the viruses continue to be an issue. The CMV virus is the one that might cause him to be hospitalized next week. The doc believes that his progress will accelerate as the steroids are eliminated from his treatment.
This morning Ron is receiving an IVIG infusion which will bolster his immune system. This infusion is the one that has antibodies from 1000 donors. Amazing! Ron is in an infusion room this morning that has 20 recliners against a curved glass wall to the outside. I am looking at evergreens and bare trees that have white lights. It is snowy and a pretty view.

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.

Last Year's Pumpkins

Happy Halloween! Day #68

About a month ago, we had hoped that we might be able to travel to Toledo today to meet our friends, the Treegers, for our traditional Halloween dinner and /or travel to Bowling Green for Cale & Jess's annual Halloween potluck gathering and trick or treating. As of yesterday we set our hopes on not having to go back to the clinic today. But there is good news here. We have figured out which medication was causing side effects that definitely slowed Ron's progress, so Ron has started to do better again, and we will not return to the Cancer Clinic until Wednesday. That will be a long day with clinic appointments including an ECP light therapy treatment.
Thanks for your continued support in so many ways.
Love, Ron & Jan

Fall Colors in Ann Arbor

October 29, 2011, Day 66

Although exhausted, I felt wired last night before I could just relax and go to bed. The day had not gone as smoothly as I'd hoped, and I kept replaying everything in my head. We had too many appointments scheduled for the same day. Now that Saturday has passed, I am sure that we made the right decision to both come back to the apartment. Sleeping and eating are even bigger issues for Ron when he is hospitalized. There were no phone calls today to indicate that any of the blood or urine tests showed an infection, and today's bladder issues are not so aggravated. When they do blood cultures, they take blood from each of the three lumens of his neostar port in his upper chest.
I was able to take 2 short naps when Ron did, and that helped me. Yes, It was a better day.

Thursday & Friday, October 27 & 28, 2011

I am trying to think of a name for this roller coaster ride that we are living. Any suggestions? We had expectations of a steady improvement in bladder issues but it toggles back and forth. With another infusion of cidofovir today, perhaps Ron will find more relief over the weekend. He also had a transfusion of platelets which should help with the related bleeding of the bladder lining. We did spend the entire day in the cancer clinic, so we knew to use a wheelchair rather than the walker. The doc and PA visited us both in the morning and afternoon, discussing test results and symptoms Ron has shown with mental confusion. It was a definite consideration to hospitalize him today, but in the end we decided to go home. The doc made a few adjustments, and overall, both of us rest better at home. I would stay in the room with him if he were hospitalized.
Ron is not able to text right now, and I have heard a lot of messages come in on his cell phone, so I will try to get to those tomorrow and read them to him. He has difficulty with the remote control as well.
Ron did have an ECP light therapy treatment today; his skin and gut issues are mostly resolved. He is making progress, and his dosage of steroids decreases each week. He had his evaluation by a physical therapist, and she will be back Monday morning for his first session of guided exercise. We are adding more items to Ron's diet. Grilled cheese and hot dogs have been popular this week. Lactose intolerance is a common post-transplant problem, so he takes lactaid prior to eating dairy. He does not eat much, and has lost close to 40 pounds. His weight fluctuates 10-15 pounds with retained fluid variations.
Enough for tonight. Tomorrow will be a better day. I understand now how crying and laughing are closely related. I have found myself laughing in situations where I find my reaction inappropriate. It must be another coping mechanism.
From Ann Arbor, love to all.

Tuesday-Wednesday October 25-26, 2011

Ron's physical therapy will start tomorrow. An activity plan with goals and a means to measure progress are going to be helpful. At this point we don't really don't know what reasonable expectations are for Ron to regain his strength. The steroids have taken a toll; he is not able to walk unassisted. The walker has been a godsend, and for hospital appointments that require several stops, wheelchairs are available at the door. There are always other family members or hospital personnel who offer to help us at every turn. (especially getting off and on elevators). I carry our belongings in a samsonite wheeled large briefcase--appointment info, meds, snacks, water, IPad, etc.
Ron has had slight relief from the bladder issues today. I hope he makes a lot of progress rapidly. If he could just sleep an hour at a time, it would help him so much.

Monday, October 24, 2011

To care-givers everywhere who also have family members still in your home who depend on you and/or those of you who also work, you are amazing! Caregiving is my full time "job", and I know that I would have no time or energy for much of anything else. I have thought at times that I am glad that we are in an apartment here, and I can't see things at home that I would want to do. I have one focus.
Today's appointments went well. The IVIG to treat the immune system was very effective--as shown by a blood test. They have tweaked Ron's meds and he is having less hydration because of his swollen feet. His breathing treatment today went well. It is done right in the clinic and only takes a few minutes. It is a monthly treatment.
We plan to be at the apartment until Friday. Multiple appointments are scheduled for Friday, starting with 7:30 bloodwork and with the last appointment starting at 5:30. We will be crawling home about 7:30 in the evening. This will be the day when I sleep on the bench during ECP. Actually, it is a lovely nap.

Day #60: October 23, 2011

What a beautiful fall weekend in Michigan! I only ventured to the Meijer store which is only 2 miles away, but what felt really good about the weekend was relaxing on our own schedule; that is something we had enjoyed about retirement. In the face of all that we have been experiencing with Ron's transplant, we have what we call "our new normal"---that is our coping mechanism. It is probably common to anyone in a challenging situation.
Tomorrow we go back to the Cancer Clinic in the morning, and then we will know more specifically what Ron's treatments will be for this week. At this time we know that he will have bloodwork at 9:00, doc at 10:00, and breathing treatment at 11:00. The breathing treatment is preventative for PCP pneumonia, which is the pneumonia that is often a complication of AIDS patients and others with a suppressed immune system. The ECP light treatment is moved to Friday afternoon, followed by another infusion to treat the viruses. The bloodwork tomorrow will let us know the progress against the viruses. The graft versus host symptoms of the skin and gut have cleared up. Where the skin looked sunburned, it has browned, and is peeling. Our "if only" at this time is for the bladder symptoms to clear up. Ron never gets to sleep more than 45 minutes at a time, and often it is only 20 minutes.
We continue to be grateful for the support you are showing through messages, cards, prayers, positive energy, and good thoughts sent our way. It is so appreciated.
Love to all,
Ron & Jan

Saturday Morning: October 22

Getting up at 5:30 on my own terms felt good. Ron has had a restless night, so naps are in order for the day. I have been reading, curled up with a fleece blanket on this frosty 27 degree morning. I thought how timeless it is to be reading next to a fireplace enjoying its warmth and light. Never mind that I am reading a book on the IPad and the fireplace is gas. Enjoy the weekend! It's late October, and there is frost on the pumpkin.

Day 58: October 21, 2011

Exhausting. We left for the Cancer Clinic at 8:00 this morning and were back home to the apartment at 6:00. All stops were scheduled, and this is what we do for Ron to stay out of the hospital as an in-patient. Both of us have remembered how great it feels to have the weekend arrive. Appointments are scheduled back in the clinic on Monday morning, but ah-h-h two days to be on our own schedule sounds wonderful!
Ron tolerated the IV IG infusion well. It was a collection of antibodies from 1000 donors and should boost his immune system. The second infusion was a treatment for the BK and CMV viruses which make him feel crummy and have unpleasant symptoms, especially affecting the bladder. So now we are back home, and he is having his at-home meds and IVs and mostly napping.
Glad today is over and hoping today's treatments start to make him feel better.

Tues.- Wed.- Thurs. Oct. 18-20

This is Day #57. It seems like ages ago that the bone marrow transplant happened. What is routine now was unimaginable 57 days ago. Grinding through. Wednesday was our long day with labs, doctor visit, and ECP light therapy in the afternoon for 4 hours. I now have my routine of napping on a hospital bench outside ECP for part of the treatment time. I am not the only spouse or parent doing the same. It is a quiet location, and the nurses bring us pre-warmed blankets and pillows. Seven patients are treated at a time in ECP: 7 in the morning and 7 in the afternoon. To have ECP, your platelets can't be too low, so Ron had had a platelets transfusion on Monday.

The doc has put Ron on scheduled pain med instead as "take as needed" so he does not have peaks of bladder- related pain. As the BK virus subsides, he will have more relief. The "copies" (count) of both viruses is going down/ improving. He is also taking less steroids each week, so the treatment for the viruses will be more effective.

What's next? On Friday Ron will have 2 infusion treatments. One is the 3rd treatment for the viruses. This week's infusion is 20% of last week's dose so not nearly as toxic. The doc likes to use military terminology with Ron, and he called last week's infusion the really big mortars--- which led to a weapons discussion. On Friday he will also have an IV IG treatment to boost his immune system which is very low. This will be a 6-7 hour outing for us. They will also do lab tests again to check CBC and electrolytes. He started new meds for potassium and phosphorus this week. A person's body is a finely tuned engine! Next week a monthly breathing treatment will be added to prevent PCP pneumonia, and he will have a bone strengthening infusion.

Today Elizabeth, Ron's visiting nurse, is making a visit and she will set up Ron's physical therapy which has been prescribed for 3 months-- starting in our apartment and hopefully, ending in Coldwater, MI, near home. Another new member of Ron's medical team is a pharmacist, Shannon, who met with us during the clinic visit regarding all medications.

This was a load of new information. Daily blogs spread it out, but some days are just too full to blog. Writing continues to not only be good therapy for me but a way to record Ron's journey and best of all, a great way to communicate with family and friends.
Love to everyone and thanks for your continued support in so many ways.
Love, Ron & Jan

Sunday-Monday, October 16-17, 2011

What a long day! I called the BMT doc who was on call Sunday to see if there was a different med that Ron could take to help give him some relief from the bladder symptoms which are a result of the BK virus that is in the lining of his bladder. He told me that he would set it up for him to see his doctor this morning. The clinic called early and said that they had ordered bloodwork to be done prior to seeing Dr. Magenau. Ron's platelets had dropped, so he had a platelets transfusion to help his bladder heal. His graft versus host symptoms appear in check, so they backed off on more of the steroids. Although we have packed our bags In the event that Ron would be readmitted for the last 3 appointments, we are home again. Ron's IVs will finish late tonight. He is very brave and has endured much during the past two weeks especially. He usually needs help getting up from the bed or a chair, but he insisted on using his walker to go from one area to another. The doc has prescribed regularly scheduled pain med to help him get through this rough patch. Send your kind thoughts, prayers, and warm wishes our way! ...hoping to be turning the corner soon.

Friday-Saturday, October 14-15

The second infusion went well...no long wait like the first time, so I didn't walk in bawling this time. Funny odd what can push you over the edge of composure. Ron is not scheduled to go back to the clinic until Wednesday. Backing off steroids has made him even weaker, and with an extremely compromised immune system, the possibility of falling and being exposed to an illness are worrisome. I am diligent to the point he asks me to back off at times. He is an amazingly agreeable patient most of the time.
This morning he has stayed in bed and is sleeping. Isn't it hard to imagine him still in bed at almost noon? The PA told me yesterday that lots of sleep is good to help his body heal.
Go Spartans! ...and Buckeyes, don't embarrass yourselves. I hope they have a better game; our Buckeye Nation is in an uproar. Guess I will get out of my jammies and put on a Buckeye shirt. Tonight I will be wearing some Detroit Tiger gear.
Love to all of you, Ron & Jan

Day #50 Thursday, October, 13, 2011

We have been going through a huge collection of mail brought to us from home. The number of catalogs and return address labels we receive is amazing. The inspirational messages on cards and the handwritten notes of encouragement are priceless. Thanks for communicating with us through email, the blog, and text messages too. We feel very connected to family and friends, and as one friend put it, that support is profound.
Ron's PA called today to let us know that a blood test result indicated that Ron's immune system has reached a low level that requires an infusion treatment. It had been trending down the past few weeks, so this was not totally unexpected. I believe this treatment is called an IV IG. He will meet with us Friday afternoon to let us know the specifics. Ron already has his second infusion treatment for the viruses scheduled for 3:00 Friday.
Now onto sports: we enjoyed the Detroit Tigers victory today... We were not ready yet for their season to be over! Everyone is gearing up for the Michigan-Michigan State football game Saturday. We especially look forward to the weekends with no medical appointments and many games to entertain us. It is a great diversion.
Love, Ron & Jan

Wednesday, October 12, 2011: Day #49

Wednesdays are our big day with bloodwork, 4 hour light therapy ECP treatment, clinic visit with Ron's primary bone marrow transplant doctor, and a stop at the pharmacy (located inside the hospital). We left the apartment at 6:30, and returned about 4:00. Then Ron still had his at home IVs to do which take a total of about 6 hours. The BK viral infection which is primarily symptomatic in the bladder is causing the most havoc now. The doc added another medication to help settle the discomfort. He also told us that Ron is doing well enough at home to not readmit for hospitalization at this time. That is one of our goals, but we had packed for the hospital on the last 2 Wednesday appointments.
Ron's skin continues to show improvement (red rash areas turn brown as they heal--covered 70% of his body), so the doctor tapered his steroid dosage again. He has to do this gradually to avoid another GVHD skin-gut flare-up, but the steroids continue to weaken his muscles. We are in the midst of a challenging and difficult period of recovery. Ron's next appointment is Friday afternoon when he will receive his second cidofovir infusion at the Cancer Center Infusion Room. This treatment is fighting his viruses and takes about 3 hours. Today when we were waiting to see the doc, I was again reminded of things the U of M does to help the patients cope. A woman was giving patients "cancer warrior" t-shirts, a guitarist was playing soothing music, and a hospitality cart passed with gifts for patients (snacks, magazines, polartec throws, etc.)
We know you are out there thinking of us and supporting us in many ways. It is so appreciated.
Ron & Jan

Day #47: October 10: Columbus Day

We are so happy to feel like we're treading water. Ron's bloodtests today did not indicate that he would need a platelets transfusion tomorrow. It was a near miss, but we are happy to be staying home tomorrow. Wednesday is our big day with ECP light therapy for 4 hours in the morning and clinic appointment in the afternoon. So hopeful that everything will continue to improve...

Home Sweet Home: Ann Arbor, MI

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

Okay, not the whole building!! We have a one-level ground floor apartment. It has two bedrooms and two bathrooms but best of all, it has its own laundry room. The fully furnished apartment has a bar looking into the living room area from the kitchen. There is also a dining area on the opposite side of the kitchen which we are using as an office. We have a covered parking area and can use the pool, exercise room, and walking paths. (so far just have used the walking paths). Our building is located so that we look out at a grassy area and trees.

Extracorporeal Photopheresis: ECP

...Ron receiving an ECP light treatment in his blood. As a part of this study, he also receives 2 Embrel injections each week. ECP is once a week for the first 6 weeks of treatment. It continues at longer intervals for a year. He had his 3rd ECP Wednesday. A centrifuge separates white blood cells, red blood cells, and plasma. The white blood cells are treated with a drug, UVADEX; UV light activates the drug, and then the blood is returned to Ron. This therapy treats GVHD symptoms.

Day # 44. October 7, 2011, Friday

Another challenging day. Doctor Magenau told us today that this would be a long haul. Ron continues to take a heavy dose of steroids to control his graft versus host disease which for him causes skin and GI tract problems. In addition he is diagnosed with 2 viruses which have developed and are a challenge to treat because he is on steroids. The treatment plan for now is at home medications in the form of ointments, pills, and IV infusions which I am able to administer. He also returns to the hospital 4 days next week for labs, infusions that can't be done at home, light therapy, and doctor visits. We much prefer this instead of hospitalization. The steroids basically kick your butt, so Ron is using a walker now; it especially effects your big muscles; he really notices it in his thighs.
His weight was almost the same today, so adding gummy worms and Dots to his diet must have helped! He eats very small portions of everything. Nurse Jan was very tired today because of watching the Tigers beat the Yankees. It was a nerve wracking game, so I had a terrible time falling asleep. Then up early and off to the hospital!
We are excited about the weekend at home in the apartment. Love and thanks for your support, Ron & Jan
1455 Oak Valley Drive
Apt. 103. Bldg. 26
Ann Arbor, MI. 48108

Thursday, October 6, 2011

We have stayed at home again today. Ron has a visit to the Cancer Clinic tomorrow; at that point we will have more information about the viruses. An infusion of cidofovir to treat the second virus is scheduled. For you with medical contacts, it is the BK virus.
Ron and I went out for a drive today. The fall colors are beautiful already, and with the bright sunshine, it really showed them off. Tonight we watch the Tigers in the decision play-off game.
Tomorrow will start early for us. We will need to leave for the hospital by 8:00 and will be there at least all morning.
Thanks to everyone for your good wishes delivered in a myriad of ways. It means more to us than you probably realize.
Love, Ron & Jan

Days 41-42. October 4-5, 2011

We are back home after a full day at the hospital. Ron had a lab appointment, doctor appointment, and his third light therapy. He continues to feel very weak due to the steroids he takes which combat the symptoms of graft versus host disease. He has now developed a second virus because of his suppressed immune system. The viruses are ones that he carried but didn't develop when his immune system wasn't compromised. His steroid dose has been decreased, but it is a balance between steroids to control GVHD symptoms and allowing the immune system to work.
Today's blood test results will determine if he needs to be hospitalized again for more aggressive treatment. He continues to lose weight but has not had a fever. His goal is to eat at least 600 calories a day. He has been able to add a few gummy worms and Dots to his list of food allowed, so that has added calories and carbs to his intake; he is on a very low fat diet. He does not want to go back in the hospital unless absolutely necessary. We really like Ron's primary transplant doctor, Dr. John Magenau and his clinic P.A., Tim Higgins. They are a good team. And Ron and I continue to be a good team.

Sunday-Monday Oct. 2-3 Days 39-40

When we are at the hospital, we log on to the Internet on the hospital network. At the apartment we use our Verizon Five-Spot wireless which doesn't always work here as well as it does at the lake. Yesterday it was especially frustrating, so in the event this continues being an issue, I might not be able to make my daily entry.
That being said I am going to admit that Ron's recovery has been more difficult than I imagined. He is the most physically fit and healthiest 63 year old I know, so it has caught me off guard that there are stubborn complications as he continues his journey to good health again. We are continually told that the issues with graft versus host disease are expected and that his symptoms are not in a severe stage at this time. The main issue now is handling the weakness - no appetite - dehydration cycle which is hard to break out of. The U of M Home Med service which delivers his medical supplies to the apartment is bringing extra hydration for his daily IVs. If this cycle can't be broken at home, he will be hospitalized again. After talking to a BMT nurse at the clinic today, that is a real possibility when we go for his clinic appointment Wednesday morning. The CMV virus is still evident in his blood, and that count has risen since discharge and the change to oral medication for it. His other blood cultures drawn Friday are still negative. The lab continues to watch them for several days.
The hardest part of caregiving for me is seeing Ron so sick.
Thanks to everyone for continued support, prayers, good wishes, and positive thoughts. We can feel the good vibes out there!
Love, Ron & Jan

Saturday, October 1, 2011: Day 38

No news on the blood cultures is good news. A peaceful day here in the apartment: watching football, napping, doing a little laundry and cleaning, and sorting through mail from home. Trying to absorb the reality that October has arrived, and Ann Arbor has a frost warning for tonight! How did that happen?!

Friday, September 30, 2011: Day 37

Things did not get easier today. Appointments at the Cancer Center in the University Hospital complex took up our morning, and Ron is weak, so the walking was a real effort for him. His bloodwork revealed that he is slightly dehydrated, and he had an elevated white blood cell count. This count could be a result of the steroid treatment, or he could have an infection. He was sent back to the lab to have blood cultures drawn from all 3 lumens of his port and from his arm. They will be able to decrease the steroids again next week, but it is a balancing act with their positive effect on the GVHD symptoms and their negative effects on the muscles.
Ron is eating and sleeping more here at the apartment, so I am hoping that we will soon see some improvement in his strength. We should hear back from the lab tomorrow if there is any concern that needs to be treated more aggressively. He is already on antiviral and antibiotic pills.
Continued thanks for your prayers, supportive thoughts, and good wishes for Ron's full recovery,
Ron & Jan

Thursday, September 29, 2011: Day 36

It is great being back in the apartment! We are settling in, and I am using my nursing skills again. Ron feels quite weak. The last two weeks have been hard on him. He will need to walk to start to regain strength and muscle tone. The high dose steroids are very hard on the muscles. The GVHD of the gut also diminishes appetite and tolerance for many foods. He is on a restricted diet, but it does have a variety of food choices; hopefully, he will be able to eat more. The various creams, ointments, and lotion for his skin help control the GVHD of the skin. The doctors continue to reassure us that he is doing well. We return to the clinic tomorrow morning for blood tests and an appointment with his primary physician, Dr. Magenau.

Wednesday, September 28: Day #35

Ron was unexpectedly discharged today. It was a nice surprise, and we were back to the apartment by late afternoon. He still tested positive for the CMV virus, but at a low enough reading that they changed him to a pill medication. He also had his second light therapy treatment in his room. It takes about 4 hours. (ECP).
From his port, tubing takes blood into the ECP machine where a centrifuge separates plasma, red blood cells, and the white blood cells. The white blood cells are collected in a bag and are treated with a drug called UVADEX; the treated cells are exposed to UV light inside the machine. ( reminded me of a miniature tanning bed) the treated cells and other blood products are all returned into the body through the port. The patient is then very sensitive to sunlight, so for 24 hours Ron must keep skin covered and wear special sunglasses. ECP light therapy is not yet approved by the FDA for this purpose although it is in Europe, so Ron is part of a study. He also is having Embrel injections for 8 weeks as a part of this study. The nurses have told us repeatedly that he is so fortunate to have these treatments to combat his graft versus host symptoms.

Tuesday, September 27, 2011 Day 34

We did not receive the results of the blood test for CMV, the virus that Ron is being treated for, so we do not know when he will be discharged. Nothing new so that is good news! He will have his second ECP light therapy session tomorrow morning in the room; these treatments minimize skin and gut issues related to graft versus host disease. We can hardly believe that it is almost October.

Day 33 After Transplant. 9-26-11

The nurses brought us a small cake to celebrate our 41st anniversary. We rounded out our anniversary dinner with beef broth, rice, and Popsicle for Ron, and I packed my dinner: peanut butter sandwich, rice cakes, and banana. The gift of the day was finding out that Ron's bone marrow biopsy brought good news. It was leukemia free. The new word of the day is cellularity. That is the percent of cells in the biopsy sample, and his was 60% which is excellent. The results of the cell genetics will take about another week. That test will determine the percentage of cells that are products of the transplant. For Ron and me this falls into the category of "star wars". Or as Niccole has explained a few technology innovations to us: it's magic. We did not find out any blood test results for the virus that is in his blood. (CMV). A good day.

LaGrange, Indiana September 26, 1970

Happy Anniversary to us! September 26, 2011 #41

Sunday, September 25, 2011: Day +32

We are spending the evening going through a week's mail from home and of course, watching football. Tomorrow will be a day when we have more information that will determine Ron's progress and continuing treatment. The results should be back from the bone marrow biopsy and blood tests. Hopefully, the CMV virus will no longer be in his blood. Also, the medicine for the virus can damage the graft, so blood counts might drop for awhile. Ron had to go back on one of his rejection meds today because there was some flare-up of graft versus host rash. He did not feel well this morning but has improved during the course of the day. There are no indications that the biopsy will not be leukemia free.
For some bone marrow transplants, a patient receives his own harvested stem cells. For some, a patient receives stem cells from a related donor (family member if there is a match). Ron's donor was unrelated, so even though the donor was a match and had the same blood type as Ron, there is a higher incidence of graft versus host disease and complications.

Both of us are anxious to be back at the apartment, so our family visits can be enjoyed there ---although the escalator rides with 3 of the grandchildren were pretty special today! They also enjoyed looking at the artwork, legos, and playing crazy birds while Cale and Jess spent time with Ron. Precious moments. It is always good to see our siblings and spouses, too.
Love to all, Ron & Jan

Saturday, September 24: Day 31

It feels like things are more on track and moving ahead today. The new meds to settle Ron's stomach are helping, and he is eating a little more. So, the plan is to walk more, spend more time up in the chair, eat more, and gain back some strength. The steroids knock down the graft versus host disease but are very hard on your muscles. They have already started to taper off his rejection meds and steroids. By Monday night we will know more about his discharge. The bone marrow biopsy results should be back, and he will have a blood test to see if the virus is gone.
This was a Michigan at home football day, so I came to the hospital earlier than usual. We are enjoying watching the games, and it is just quieter here on the weekend. We both hope that this will have been the biggest bump in the road. It beats you down when something new has to be addressed. Scary stuff. We are doing okay and hope to be in the apartment together in a few days.
Love, Ron & Jan

Friday, September 23: Day +30 (after transplant)

Ron will remain in the hospital until at least Tuesday. The IVs for the CMV virus (called the induction phase) require larger fluid IVs as well, and it is too much of a balance to administer at home. I was willing! After the virus is undetectable in his blood, he will have a maintainence pill for CMV for 14 days. So in summary, he had 3 weeks in the hospital, 1 week in the apartment, and now 2 more weeks back in the hospital. Hospitalizations following a transplant are the norm, but it is still difficult.

Thursday, September, 22, 2011 Day 29

Hearing that there will be bumps in the road and living through bumps in the road are two entirely different things. We had hoped to be back in the apartment together tomorrow, Friday. The treatment for GVHD has gone well, but Ron has tested positive for a virus in his blood abbreviated as CMV. It has reactivated and is measured "in copies". This is a virus that he carried prior to the transplant, and they have been monitoring it. Because his immune system is suppressed, it has reactivated but usually responds well to treatment. So what does all of that mean? More days in the hospital until he can go on a pill form of the medication.
Ron did have his eighth bone marrow biopsy today. They gave him meds that made him feel better than he had in a long time. (his words). When he told Sarah, his nurse practitioner that, she said, "that's because you're doped up.". All of us laughed. Afterwards he slept well for about 2 hours.
Our best case scenario for going home keeps changing. There is a small chance that he could go off the IV and on a pill form some time this weekend and go home. But he will also have to be eating and walking more. He has lost 25 pounds in the 5 weeks he has been here.

Wednesday, September 21: Day 28: First ECP

Today Ron is having his first extracorporeal photospheres ECP treatment. He will have a weekly treatment for 6 weeks, then bi-weekly while we live in Ann Arbor, and then monthly for a total of one year. Thie goal is to treat his GVHD with less steroids and to treat the symptoms of rejection. He has responded to the steroids well, but the ECP corrects the immune system which is out of balance and attacking his skin and gut. High level steroids have side effects, so less is better.
The ECP process is nothing short of amazing. Through his port he is connected to a machine which takes blood into a centrifuge, separating the red blood cells, plasma, and white blood cells. 5% of his white blood cells are collected, treated with a medication, and subjected to UV light. The cells are transfused back into his bloodstream and signal the immune system to "back off" from the attack on his good cells. This process takes 3-4 hours. Right now Ron is sleeping as the treatment is progressing. When not an in-patient, he will go to a clinic for the treatment. It is in the Med Inn building where I stayed before we rented the apartment.

Tuesday, September 20: Day 27

Things seemed encouraging today. The PA referred to Ron as a "responder" meaning he gets good results from any treatment. He would laugh at this, but it goes back to the fact he is in good health. He was always active and only took a daily vitamin pill. Tomorrow he will have his first "light treatment" called extrcorporeal photospheres. (ECP) It will take most of the morning. This treatment will be once a week for 6 weeks and then at less frequent intervals. It is in combination with Embrel , and together they combat GVHD. His symptoms of GVHD of the skin and gut are lessening at a good rate. He has added rice, bananas, noodles, and scrambled eggs to his liquid diet. We are moving forward.

Monday, September 19: Day 26

Although there wasn't much doubt with the symptoms Ron has, the biopsy from the scope was positive for graft versus host disease. He does not have a severe case, but it will be necessary to keep his diet very simple for 1-2 months. He is on a clears diet, adding 1 or 2 bland foods tonight. (noodles and applesauce). Because they are adding foods from a short list, it is called a GVHD level 1 diet. If he tolerates those foods well, he will move to the GVHD level 2 diet. He will be able to go home from the hospital when symptoms subside, and he is able to eat more. It could be yet this week. His dietitian spent time with us today, and I have some work to do before Ron comes back to the apartment. I will box up his Oreo double stuffs, red licorice, potato chips, and other foods in the pantry that he can't have. No junk or fatty food for awhile!! So today wasn't a surprise, but it was still disappointing for us. I remind both of us that they successfully treated him for the severe sore throat, then the rash and itching resolved, so this is the next bump in the road.
The head of the department is the doc on rounds for two weeks. He came to U of M from M.D. Anderson in Texas. He has a lot of expertise in bone marrow transplant. When we return to clinic appointments, Ron's primary BMT physician will see him.

Sunday, September 18: Day 25

This is our kitty, Blue, who has totally kicked us to the curb, enjoying life at Wall Lake with my sister and brother-in-law, Anne & George. He is a needy kitty who always wants to be on your lap, getting his head scratched, or nudging or patting you to get more attention. Luckily, they are enjoying his company, and he has had a seamless adjustment. As Andy says, "good; one less thing to worry about" and that is so true.
Today started out very well with Ron feeling better than he had for awhile. He slept well, and the itching is nearly gone. Tomorrow we will find out more about the diagnosis and treatment for his GI issues. That has not resolved with the current treatment of steroids. His light therapy will start this week, and he will also have another bone marrow biopsy, his eighth. We should have a lot more information regarding his progress by Friday. I feel weary just thinking about his tests and treatment scheduled for this week; I am assuming that everything will move ahead as scheduled even if he remains in the hospital.
Love, Ron & Jan

Saturday, September 17, 2011: Day +24

Ron's itchy rash is definitely subsiding, so there is more concern about his GI tract at this point. We will not know more until Monday when his biopsy results are known.
So what do we do? We watch football! I have been reading light fiction on the IPad. I am also halfway through the third book in The Hunger Games trilogy but had to take a break; it felt too intense, too dark, and too much energy required to imagine the setting. It is an effort to concentrate at times.
I hope that Army friends, Bob and Ann, who we first met at Ft. Sill in the early 70s, will not mind me sharing special words that someone had expressed to their daughter Laurie a few years ago. I have read them over and over because they have touched me, too. I understand why Ann will never forget them.
"Allow this enemy no room in your thoughts. Do not be discouraged but rather courageous. Face this with a firm resolve and a cheerful heart. We are with you for the long haul."
Thanks to everyone for prayers, kind and positive thoughts, and special words that cause us to pause and reflect.
Love, Ron & Jan

Evening September 16 Day +23

Although this is not where we want to be, it is, at the same time, a safe haven. Ron was moved to a different room late this afternoon; actually just down the hall but into the Bone Marrow Transplant area where all the expertise for adult BMT is. He is receiving IV steroids every 12 hours, and the doc told him if his GVHD symptoms subside well, he should be able to back off from the dose of steroids. His symptoms are an entire body rash and diarrhea. He is on a clear liquid diet. A biopsy and images were taken during his flex sig scope this morning. Besides the skin and GI tract, GVHD can affect the liver, but his blood tests indicate that has not happened. The skin biopsy Monday did verify that he has graft versus host disease. Some disease is good because it shows that the new cells are attacking any remaining leukemia cells. But the GVHD symptoms show that they are also attacking good cells, so he continues to take his anti-rejection meds, and the steroids treat the effects of the new cells attacking good cells. It is a balancing act with the meds, and this will continue for some time. It is the main reason Ron is required to live close by for 100 days after his first discharge. The goal is to be weaned off most meds by December.

Morning: September 16

If you would like to send Ron a note / card, please use our apartment address. I will check it each day. He was admitted to 8B but will probably be changing rooms to 8A when a room is available in the BMT unit. This is his 7th stay on 8B, so our medical friends are taking good care of him. He didn't arrive on the floor until 8:30 last night, so it was a long and upsetting day. They have an overload of patients..maybe it was the earlier full moon. This morning Ron is having a flex sig scope to determine if the GVHD has effected his GI tract. Regardless, he is on high dose steroids to treat the effect of GVHD on his skin--itchy rash and redness; almost like a sunburn.

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


Following are words that I saw in the infusion area of the cancer clinic yesterday when Ron was in a pre-hospital room after being admitted at his morning appointment. I found them comforting.

Be gentle to yourself...
Take kindly the counsel of years, gracefully surrendering the things of youth..
Nurture strength of spirit to shield you in misfortune.
But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline, be gentle to yourself.

You are a child of the universe, no less than the trees and the stars; you have a right to be here.
And whether or not it is clear to you, the universe is unfolding as it should. Peace...

Day +22: Back in the Hospital

The next challenge has arrived. Ron had a restless night. The rash and its itchiness escalated. He already had today's appointments scheduled, so at that time we found out that his GVHD is now Stage 3 in severity, and he needed to be admitted for treatment with high dose steroids. It requires early and aggressive treatment. He has been in an infusion room since noon and has already received the first medrol IV. He has slept almost the entire time, and it would seem that he already has some relief. They also believe that the GVHD might also be affecting his GI tract, so he will have further testing for that tomorrow. Dr. Choi told him that the best case scenario would be that he could return to the apartment on Monday or Tuesday.

Wednesday, September 14. Day +21

Still grinding, as Ron puts it. Things have stayed about the same for 2 days, and we go to scheduled blood tests and the same doc (as Monday) tomorrow morning. The days pass more quickly than you might imagine. The family visits are special days for us, and it is nice to have family come to the apartment rather than the hospital setting. The 2nd cooler of IVs and other medical supplies were delivered today, and it felt good knowing that I now have the skills to administer them myself. It is amazing what you can adjust to and learn and feel like it is your "new normal."
Ron's IVs are given through his port; I do not have to put in an IV. At this time he has two infusions, and they will continue for at least two weeks. It is hard to believe that 3 weeks have passed since the transplant. Ron feels discouraged at times because of the lack of energy, and the itchy rash is relentless. Hopefully, we will find out something more tomorrow. As we have passed various milestones, there is a brief time of celebration before the new challenge/goal is confronted, and you are reminded that this will be a long haul. Ron has been told that it usually takes a year to attain the new normal, but just look at how much is already behind us.

Tuesday, September 13, Day +20

Ron doesn't want to go back to clinic until his scheduled appointment on Thursday, so as long as his rash and other symptoms do not escalate, that is the plan. We drove south into Saline, MI, today. We live just off the Saline-Ann Arbor Road and are closer to the Saline post office. Nice town...a functioning downtown and many newer businesses and shopping possibilities at the edge of town: neither Ann Arbor or Saline seem to be the typical Michigan town that we have seen so much which has closed factories and downtown businesses. They have adjusted or did not depend so much on the auto industry for their economy...probably the University of Michigan and its health care facilities have helped a great deal.
It is much cooler today, and both of us love the change of seasons that Michigan delivers, but we have to be careful what we wish for. The snow will fly soon enough. Hoping that Ron does not have to go to clinic before Thursday...

Monday, September 12, 2011, Day +19

Today's visit to the Cancer Clinic was more efficient so not so stressful. After Ron's blood draw we went to a new (for us) lounge on the clinic floor. Its atmosphere was relaxing, and Ron slept during the hour wait for his appointment. We met with the 5th doc of the Bone Marrow Transplant (BMT) team and a new PA as well, but this is a good thing..to feel acquainted with several of the doctors. She said that his rash now looks like GVHD--graft versus host disease. Mild GVHD is a good thing, showing that it could be destroying any remaining leukemia cells. This is called graft vs leukemia. At the same time you don't want the donor cells to be too aggressive in attacking the host (Ron) cells. Once the rash is more widespread and if other symptoms present themselves, Ron will go on a stronger steroid medication. GVHD affects the skin first, then can show up as diarrhea and decreased liver function. All of this can range from very mild to severe, so we watch and wait. To this point he has not had a fever. Another skin biopsy was taken to confirm that the change in his rash is GVHD.

Patriot Day 9-11 Day +18 (after transplant)

There has been much to reflect on today: The 9-11 anniversary, how it has affected our kids' military obligations, how it affected all of our lives, and all of the amazing things that our family has experienced in this decade. There is much for us to be thankful and grateful for.

Ron continues to feel a little better today. He is sleeping longer at night, and two days away from the hospital was a treat. Tomorrow we return early for bloodwork and a doctor appointment. They monitor several things and adjust medication as needed. It should go more smoothly than last Friday. The visiting nurse came today and observed as I did the IVs and dressing change for Ron's port. His port is in his chest and will be used until after this 100 day period of treatment.

Saturday, 9-10-11 Day +17

Today seemed relaxing after the stress of yesterday's first clinic visit. I am sure that everything will soon feel like we are falling into a routine. We did get out on the walking path briefly today but are anxious to go again and go farther. It was very much a TV football day for us. Ann Arbor was crazy for their first night game at Michigan Stadium, and unfortunately, I fell asleep the last 2 minutes and missed 3 touchdowns.
Ron's sore throat was slightly better this morning, so I hope we are turning the corner on that issue. The medications schedule is getting into a routine with 46 pills to take (the number varies;some prescriptions as needed),steroid eyedrops, 2 IVs, and on Saturdays he also has an injection.
The picture above is pontooning on Gilead Lake. We went on boatrides most days when we were home this summer between hospitalizations. Thanks for your continued support.
Love, Ron & Jan

First Clinic Visit, Day 16 after transplant

Ron returned for his first clinic appointment this morning. We left at 9:45 and returned to the apartment at 2:30; it was tiring for both of us. After returning home, he needed an hour nap before he could eat "lunch." Some meds were adjusted because of his itchy skin and sore throat. Then it was time to start the IVs, so it has been a full day. The home nurse will check in with us on Sunday, and he goes back to clinic Monday...really hope that it feels like we are getting into a routine in a few days. I now appreciate those 8A nurses more than ever!

Our apartment address can be found on the September 5 entry.

Day 15 and 100 to go...

Bone marrow transplant patients are required to live within an hour of the hospital for 100 days after discharge. Serious complications can arise quickly, and most patients do require follow-up hospitalizations. Ron plans to be the exception. He is a great patient, virtually never complaining about anything they ask him to do.
Our first 24 hours in the apartment went well. I have things to organize yet, but the medication schedule is under control, and the visiting nurse helped refresh my IV infusion skills. Ron and I did run to Meijer early to pick up the morning newspapers that we like to read and a couple other things. He wears a mask, and is not allowed to go to stores during their busy hours. It felt good just doing a quick errand together. The little things don't seem so little any more.

Wednesday, September 7, 2011, Day +14

It feels really good to be at the apartment with Ron. He almost immediately fell asleep in the new recliner ... Just like his favorite one at home but in a different color. His IV infusions will take 6-7 hours each day, so he needs a comfortable place to relax. Ron is out of the hospital, but there is a long road ahead of us. We are learning to celebrate the moment. He has over 20 medications at this point, but meds will be adjusted and discontinued as he progresses. The biggest issues now are avoiding any type of infection, accepting this level of fatigue, and he has soreness in his mouth and throat. A home nurse will come in the morning, and his first return visit to the Cancer Clinic is Friday. I feel comfortable with the expectations for his care-giving.
For those of you familiar with Ann Arbor, we live very close to the intersection of 94 and Ann Arbor-Saline Road on the southwest edge of town. We are close to newer strip malls, many restaurants, Briarwood Mall, and a large Meijer store. The drive to the U of M Medical Center is 15-30 minutes, depending on traffic. Game day traffic is a nightmare, so that would be an exception; our normal route is directly by Michigan Stadium. Only a sidewalk separates the stadium itself from State Street. The street banners say, "This IS Michigan."

Tuesday, Sept. 6, Day +13 (after transplant)

This has been a busy day! Plans are in motion for Ron to be discharged tomorrow! His medications are ready in the hospital pharmacy, the home med and home nurse services are scheduled, and his first return clinic appointments are scheduled. I will be reviewing my nursing skills to care for Ron's neostar port and to administer IV meds. He will also have injections and several meds in pill form. I can do it! After 22 days in the hospital for the transplant, he is ready for a good night's sleep. The doc had told us that the earliest possible date he would be able to go to the apartment was day 14 after the transplant...tomorrow is day 14. Wow!
Ron has received an amazing number of birthday greetings. Thanks to all of you for making this birthday special in spite of it being spent in the hospital. Thanks, too, for the many other expressions of support. We have felt surrounded by positive thoughts and prayers by so many.
Sincerely, Ron & Jan

Labor Day, September 5, Day +12

Ron continues to progress in his recovery since his stem cell transplant on August 24. His donor cells are engrafting in his big bones and beginning to produce white blood cells, red blood cells, and platelets; this is the work of the bone marrow. He now has a new immune system taking over. He may acquire any allergies the donor had, and he will need all immunizations again. If his donor had had a different blood type, his blood would be in the process of changing over to the blood donor's type. At the +30 day bone marrow biopsy, they will be able to tell what percent of his blood is the donor's DNA.
Because the big bones continue to work hard, Ron has bone pain especially in his lower back and sternum. Another effect has been hiccups. Because his bloodcounts are recovering quickly, he may be able to go home to our Ann Arbor apartment in 3-4 days. The apartment's mailing address is:

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

September 4, Day 11 (after transplant)

Ron's white blood cell count is just beginning to come back which is an indication that his new stem cells are engrafting and in the beginning stage of producing new blood cells. Another indicator is the bone pain that Ron is experiencing today. It made him quite uncomfortable early this morning but is now controlled with pain meds. He has also received two units of blood, so that should make him feel stronger. We will probably be out walking in the hallway by evening today. Both Unit 8B and Unit 8A made birthday banners for his room, and food services sent up a birthday cake. They have become like an extended family over the past now 18 months of treatment. So we celebrate this special day with gratitude for all of the medical support, family and friends who have surrounded us with positive vibes, and to the donor who made the transplant a reality. Amazing.

September 3, Day 10

The med (steroid) that they gave Ron for 3 days to control his nausea during chemotherapy is the same that he is taking now for 2 days to control his rash. It has worked well, and along with hydrocortisone cream has alleviated most of the itching. He has had some low BP numbers for two days, so they increased his IV fluids. (bolus--if you have a medical background). Because they determined by the rash biopsy that the rash was not a direct meds reaction, all meds have stayed the same. It does seem to help if meds are pushed into the IV or dripped more slowly than what is the usual.
Ron is now getting neupogen which will help boost his white blood cell count, and his new stem cells will begin to produce new blood cells in the next few days. There is a slight chance that we could be going to the apartment by the end of the upcoming week. Ron has been enjoying his mail but has not read his email for several days. Some of the meds and fatigue have interfered with using the computer (IPad). Things should improve in several ways over the next days. We are about to begin the upswing!!
Thanks for your messages of support and your caring.
Sincerely, Ron & Jan

Ron & Jan

This is an experiment to see if I can add an image. Our Ipad wouldn't let me do it, but I am on the computer in our apartment this morning. I noticed also when I wanted to add a comment this morning, I had to scroll down to anonymous after typing the comment; then to get it to post, I had to preview first and type in a code word that was provided. I am off to the hospital...it is game day at Michigan today, and I drive right by the stadium so am interested to see how activities have already begun. The game is at 3:30, and I will not return to the apartment until about 10 tonight. Love to all, Jan

Friday, September 2, 2011 Day +9

Engraftment Syndrome: the diagnosis of Ron's rash from the biopsy taken yesterday: basically what that says is that it is not a result of a medication or early graft versus host disease. It's his body's reaction to the transplant process in general and is being treated with steroids. The lotions and meds should clear it up in a few days. He is still rashy but not so itchy tonight. That is the story for today. Things will be a little quieter here over the holiday weekend. It is hard to believe that it is Labor Day weekend! Enjoy whatever plans you have made...or just relax with an extra day at home.