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.