August 31, 2011: Day +7 (after transplant)

Ron has begun his 3rd week of this hospitalization and passed the 100 day mark for total days at U of M Hospital for his treatment of acute myeloid leukemia. He will probably be hospitalized for at least 10 more days. It all depends on how he reacts to the engraftment of his new immune system and how well he tolerates his low blood counts over the next few days. His medical team has been treating him for a rash the past 24 hours. They have determined that its probable cause is a drug reaction..more tweaking as well as adding antihistamines and hydrocortisone cream for his skin. The itching is annoying!
We will miss celebrating Labor Day at Gilead Lake. Our pontoon boat is already in storage. What a celebration it will be when we can launch it next spring! Enjoy the holiday weekend.
Love, Ron & Jan

What is Ron's address?? Scroll down to the August 18 entry.

Day +6 Tuesday, August 30, 2011

Ron continues to grind through, as he puts it. Other than nausea and fatigue, his symptoms have been mild...no fevers or pain. He has just the beginning of mouth tenderness. His white blood cell, red blood cell, and platelet counts (all produced in the bone marrow) have been falling slowly and are near the transfusion level. I have added an app to my phone to time Ron's laps when walking. 17 laps = 1 mile. He walked 13 laps tonight.
The nurses are great on 8A. Ron has the same 4 or 5 nurses, so you establish a relationship with them, and it is good to have the continuity, medically speaking. The nurses and nurse practitioner are truly the heart of his care. They're doing an awesome job...The Michigan Difference is the motto they follow. This is an amazing, award winning medical center.
Thanks for your support and kind wishes; we feel the presence of your positive thoughts.
Love, Ron & Jan

Day +5: A Good Monday

We are starting to look ahead a little more. For awhile, just dealing with everything in the moment was more than enough to absorb. On day +30 Ron will have a bone marrow biopsy to retrieve a sample to see what percentage of the cells are produced from his new immune system and what percentage are from his old immune system. By the biopsy on Day +100, 100% of the blood cells should be from his new immune system. Along the way he will discontinue some anti rejection meds and taper off on his remaining meds.

Almost all transplant patients have at least mild symptoms of graft versus host disease. (GVHD)..or some rejection. Ron will probably start to experience some symptoms in about 10 days. He is a part of a study that is treating him with Embrel now and at day+28 starting a light therapy. More later on this; I am especially excited that he is a part of this study as it may reduce GVHD and his need for steroids.

A good day. Thanks for your continued support and concern.
Sincerely, Ron & Jan

Day +4

It almost seems like a normal Sunday evening watching football together. Ron's room has a small flat screen TV mounted on the wall. Both of us had a good Sunday afternoon nap after knowing that hurricane Irene had passed where Niccole, Andrew, and Matt live. Matt (Newport, RI) will be without electricity for about 3 days. He said that he'd experienced worst storms at Gilead Lake.
Ron is feeling weak but doing okay. He eats at all 3 meals but his appetite is down, so he doesn't eat a lot. He has lost about 15 pounds. Medically speaking, an uneventful day is a good day. This was a good day.

Saturday, August 27: Day +3

Ron's bloodwork today indicated that he has moved into the time period when he is neutropenic which means his white blood cell count is extremely low. This is the expected outcome of chemotherapy. His other blood cells, platelets and red blood cells, are dropping, too, so he will soon enter the transfusion dependent time period. About Day +12 his new immune system should start producing new blood cells. If his donor had had a different blood type, Ron's blood type would have changed. (but he was also A+)
Ron had an MRI today to check on neurological changes. They do it all here...24-7! The test was to check to see how he was reacting to part of his anti-rejection medication. The tweaking of medications continues.

Day +2

Overall, it has been another good day. Ron does not feel as strong as yesterday but no fever or major issues. They tweak his meds as needed to control nausea, blood pressure, mineral levels, etc. Normal meds for him is a daily multi-vitamin so he hates knowing that he is on so many different kinds of medication.
Today we have been more concerned with Hurricane Irene, and how it might impact Niccole, Matt, and Andrew's families in Virginia, Rhode Island, and Maryland. Our eyes are on the weather!

Day +1: First Day After Transplant

It was a good day. Ron felt much better. His appetite is much improved, and both of us are glad that transplant day is behind us. One of the studies that Ron is a part of requires him to record his exercise. He has a pedometer, and he will chart his steps daily. At this time he has to stay on the unit; this will be the case for about two weeks.
Once again we have so much praise for the nurses who care for Ron. The nurse practitioner is excellent; she does such a thorough job of explaining things to us, and never makes us feel rushed. She grew up in Sturgis, Michigan...about 18 miles from where we live. There is a real sense of community in Unit 8-A. Yes, it was a good day.

Day of Transplant: Day 0

Everything has gone well. Ron had his pre meds starting at about 10:30, and the stem cells were brought to the room at about 11:30 for transfusion/transplant. It felt like high drama for us with a huge feeling of relief when the actual transplant was done. Then both of us slept for about 2 hours! Ron continues to nap. Part of his pre meds are also sedating, and neither of us had slept very well or very long last night.

The stem cells had an amazing journey from somewhere in Europe to Ron. The final count was 5.6 million cells; it looked similar to an IV unit of blood and was about 1/2 liter in volume. The transfusion lasted about 1/2 hour. These baby stem cells will have traveled to the marrow in Ron's big bones in the next 24 hours. There they engraph and mature to white blood cells, red blood cells, and platelets. This recovery (a new immune system) does not become apparent in blood tests for 12-14 days.

By the weekend Ron will be transfusion dependent, needing transfusions of red blood cells and platelets, and his immunity will be very low. Extra precautions are in place to help prevent infection. But today we celebrate because this amazing opportunity to find a cure for Ron has occurred. We are humbled by all that has taken place both medically and through the support of family, friends, and University of Michigan personnel.
Ron & Jan

T Minus 1B and Counting

Tomorrow is Day 0: transplant day. The stem cells arrived at the Detroit Airport at about 8:00 this evening and will be processed here at the hospital. (counted, checked, last typing etc.). A transplant team will do the transfusion in the room tomorrow morning about 10:00. Anyway, that is the last word from Sarah, Ron's nurse practitioner, and we don't anticipate another change of plans. I will update you tomorrow! We are having quite the mix of emotions on the eve of this day that has been the goal since mid May when Ron relapsed.
Thanks for your concern.
Love, Ron & Jan

A Change in Plans! Day -1A

The stem cell transplant has been changed to Wednesday. Not enough stem cells were harvested in the donor's first procedure, so a second will be done tomorrow. During the exchange of information with Ron's P.A. and the transplant coordinator, enough clues about time zones and the stem cells arrival at the Detroit Airport 9:00 AM Wednesday were revealed to guess that they are coming from Europe. They should be processed and ready for transplant by early afternoon.
This day is now referred to as Day -1A, and tomorrow will be a second day of rest: Day -1B. The stem cell transplant (or bone marrow transplant) will still be on Day 0 which is now Wednesday, August 24.

Day -1: A Day of Rest

Tomorrow is the stem cell transplant! It is possible that it will not take place until evening. The International donor is having his stem cells harvested today, and they will be flown to the Detroit Airport. A professional courier handles the transfer to University of Michigan Hospital. The cells are processed and counted...about 2,000,000 cells are transfused. If there is a surplus, they will be frozen and stored in case he needs more later.
Ron is feeling a little better today, and we are anxious to hear an update on the transport of the stem cells. We are so grateful for Ron's previous weeks of care on 8B that made this transplant possible. His former P.A. came to visit us this morning and wish Ron well. We appreciate your interest and concern as you follow this blog. We feel the positive vibes rolling in.
Ron & Jan

Day -2

The chemotherapy is completed! Ron continues to deal with some nausea, but he hasn't vomited today. He isn't interested in eating much, but we are hopeful that his appetite will return some by tomorrow. Today he has started taking by IV an immunosuppressive drug (tacrolimus) in preparation of the transplant-- to lower the risk of rejection of the new stem cells. Everything continues to be on schedule, and his doctor says that he is tolerating everything very well.
Jan

Day -3 and Counting

The day that Ron was admitted was day -6. He will have his last round of chemo tomorrow, Sunday, day -2. Day -1 is a day of rest, and the transplant is on day 0. Today was the first day that he had vomiting from the chemo. (of all seven rounds of chemotherapy). He has not felt very well all day, but we are settled in watching the Detroit Tigers now.
I taped family pictures on the wall today, and we saw the doe again down on the soccer fields. We had seen her in May, June, and July, but today there were 2 fawns with her! Next week Ron will pass the 100 day mark of days spent in the U of Michigan Hospital in the last 17 months.
I am going to try to make a short blog entry each day for the next two weeks...perhaps longer to keep you informed of Ron's progress through his bone marrow transplant. Thanks for your support. Jan

Day 2 Chemotherapy

We have both transitioned from celebrating the opportunity for a bone marrow transplant and making the preparations at home and our Ann Arbor apartment to concentrating entirely on the process Ron has now committed to. He is definitely feeling the effects of the chemo which is harsh, but medications do control the side effects. Today was quieter, and both of us napped this afternoon...not so many interruptions for blood tests, staff visits, and information both gathering and dispersing. We are feeling settled in to this environment on 8A: the bone marrow transplant unit.
Ron & Jan

Thursday, August 18, 2011

Our move to Ann Arbor has gone smoothly. Our apartment is totally furnished, including linens, kitchen items, and even a grill with charcoal and lighter! Traveling to the hospital in the morning I pass the U of M stadium in less than 5 minutes; it is beautifully lit and reminds me of the Roman Coliseum with its many arches. With low traffic at this time I can arrive at the hospital in about 20 minutes. Ron was admitted as scheduled on Wednesday, and these two days have been incredibly busy with paperwork, tests, questionnaires, and initial visits by a large number of medical and support personnel who are responsible for his care during the transplant. We have met part of these caregivers from earlier hospitalizations.
Ron's chemotherapy started early this morning. One of the chemo drugs required several follow up blood samples which will be flown to Seattle overnight for special testing. The tests determine the exact dose for him. He will have a 4 day regimen of chemo, a day of rest, and then the stem cell transplant on August 23. They have started him on several precautionary meds to lessen side effects.
So we have arrived at the goal that had been set once his AML relapsed in May. We are so grateful for this opportunity to find his cure, but it is also a very scary time for us. We are also very grateful for the international donor who has begun the neupogen injections to boost his bone marrow's production of stem cells for the harvest. The coordination required to make all of this happen is truly amazing.

Ron's 63rd birthday is September 4. Following is his hospital address in case you would like to send him birthday and get well messages. I know that would mean a lot to him. He has always been very sentimental about recognizing others special days.

Ron Hover
U of M Hospital
Unit 8A Room 8409
1500 East Medical Center Drive
Ann Arbor, MI 48109-0110

Thanks so much for your support and positive spirit. Love, Jan
Ann Arbor, MI 48109-0110

Returning to Ann Arbor Soon

Our days at home have passed quickly. Last Tuesday and today have been all-day trips to Ann Arbor for final tests and appointments required for Ron's bone marrow transplant. We will be home over the weekend and then move to Ann Arbor on Monday. The last few days have been wonderful with family visits and summer weather. There is nothing more special than cuddling with a grandchild next to you or on your lap. They are a constant reminder of life's blessings and the power of a smile and laughter. All of the kids and grandkids have been heading home to Ohio, Maryland, Virginia, and Rhode Island as the new school year is approaching quickly.
Ron's admission to the University of Michigan Medical Center is Wednesday, August 17. He will have chemotherapy and then the stem cell transplant on August 23. His donor has had his final clearance, and all of Ron's tests have verified that he is ready for the transplant. How could this possibly be "the easy part"? Ron will probably be in the hospital until mid-September. (which includes his birthday) and we will live in Ann Arbor until mid-December, so he can be followed closely as his new immune system develops from the stem cell transplant. I will give out his hospital address as soon as I have it and put out an all-call for a shower of birthday cards for September 4. I know that this would be something that would be very meaningful to him. Ron doesn't pull up this blog to read it, but I do read to him any messages that come in. Thanks for your continued support. So many have told me how they check the blog...not necessary to leave a comment; we know that there are many of you following this journey through the blog. We are so thankful for the goodness of the international donor and for all friends and family who have supported us during the last 17 months. You have made a huge difference in our lives and helped us cope.
Love, Ron & Jan