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.

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