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.

Thursday, September 1, Day +8

Ron's medical team continues to treat and try to find the cause of his rash. The dermatologists visited today, took pictures, took notes, and then took a punch biopsy of the rash this afternoon. Preliminary results will be in on Friday. Because he is now at the low point of immunity, he has mouth and throat pain in addition to the itching! He has medications (lotions, meds for itching, throat and mouth swishes,) to control discomforts. Today he also had his first transfusion of platelets; this was prior to the biopsy because they wanted to wait until his platelets bumped up.
I am glad that football season is starting because that helps pass the time; both of us enjoy watching college and pro football. We continue to follow the Detroit Tigers...easy to be a fan with their good season. Michigan has a home game tomorrow, so that will take traffic issues to a new level. I am planning to come to the hospital early and leave late. That is my general pattern anyway. Because I nap at the hospital 1-2 hours during the day, I only need to sleep 5-6 hours at the apartment. The drive to the apartment ranges from 12-30 minutes, depending on traffic. It has worked out extremely well. I have my own washer and dryer and can pack food for the day. Because we need to live in Ann Arbor 100 days after discharge, it will continue to be a great situation for us. I haven't had time to use the hot tub, pool, walking path, or exercise room yet, but I see that in my future.
Love to all, Ron & Jan

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