January continues...

Nature has been full of surprises! Where did this winter come from? We have snow or frigid cold or wind everyday and on some days, all three!! We have experienced being snowed in and our Cooper's hawk fly into the great room windows twice. We feed the birds, and he can't resist hunting on our deck. He even perches on our chairs under the covered deck.. I really thought the window was going to break. The winter scenery has been breathtaking and aggravating at times.
The memorial service for Ron's mother was on the 18th. We honored her life and memory and enjoyed spending time with family and friends. Now everyone is back in their routines except when the weather interferes with school.

I have reached a point where I know that I need some help with Ron's care. This milestone was passed when he ventured out behind the garage in 10 degree weather. He had put on boots, gloves, hat, and hoodie and wanted to move some wood from our woodpile to the back of the truck. He fell in snow that was about 10 inches deep and had to crawl to the garage. He cannot get up by himself when he falls. I came home from having my teeth cleaned and found him on his knees in the garage. It hadn't been long but he was cold and visibly shaken.
When I left home, he was in bed for a nap. I continue to be totally baffled to what his thought process was, how he was able to physically get as far as he did, and why he didn't nap at all on that day when he sleeps 2-6 hours each day, and my appointment was at 4:00. I knew that I would not be able to leave him alone any more, so I am having family-help to stay with Ron when I have an outing. I am starting with twice a week on weeks we are not in AA for appointments. That feels like a comfortable starting point, and I am ready to accept help on a regular basis. It will seem odd because we have been together 24-7 for a long time now except for a few exceptions.
Love to all,
Ron & Jan

Little Sister, Big Sister

Lily and Abby

Catching my breath...

We have had a full and emotional week. Ron has been sleeping 13 of the last 15 hours (and still sleeping), so I know it took a toll on him too. We traveled to Ann Arbor for 3 days last week. Ron had two of his extracorporeal Photopheresis light treatments and an infusion of antibodies. He also saw Dr. Mag who ordered a CT scan of his lungs because they sound junky. (My word to describe the lung sounds) we could only get a "sit and wait" appointment which sounded ominous to me, but we only had to wait an hour. I wheelchaired Ron over to University Hospital from Mott where his appointments are. All of the clinics and the hospitals are connected. When we arrive for appointments, I drop Ron off after we load our belongings onto a wheelchair for him to push. It is more stable than walking with a cane. Then we have a wheelchair if he needs to sit, and it works well with winter coats to haul as well as my notebook, calendar, IPad, and our bags.
Ron's lungs are not great but fortunately, not bad enough for admission to the hospital last week. His pneumonia has been antibiotic resistant infections which require IV antibiotic treatment..in the hospital. I was additionally concerned because Ron's mother's memorial service was planned for last Saturday. But, events unrolled as planned, and the weather even cooperated for Cale's family to drive from Bowling Green, Niccole and Cole to drive from Virginia, and Matt to fly in from Tampa. Ron's brother Rick had made all arrangements concerning Esther's death and memorial service, and everything played out well. The service and the social gathering of friends and relatives afterwards truly did bring some closure...that word is over-used but says it well. I think both of us felt a sense of relief that her life was honored in that way and that the memorial was just over. Ron was exhausted by last night, had a rather shaky day yesterday, and hopefully many hours of sleep can help him recuperate. We are home this week but will return to AA next week, and he will have pulmonary testing and see his pulmonary doctor and have his next treatments.
A really special moment for me was seeing the kids and grandkids sitting around a table and visiting and catching up---and maybe talking about us a little too-- at the social gathering.
Love to all,
Ron & Jan

Impressive Snowfall

A lot of our snow has now melted! It was a little scary being snowed in for two days, and thank heaven that we didn't have an emergency. It is amazing how much you can find to do just around the house! I continue to work on correspondence and sorting and organizing things.
We both enjoy watching play off football and college basketball, so we keep entertained. Andy has sent us many pictures of our new granddaughter born in Germany. He even sent a video clip of her starting to cry because I had told him that I love newborns, even that newborn cry. Of course, we think she is adorable! What a happy way for us to start 2014!!

Watching the snow fall, fall, fall...

This is a good time to finish my Christmas cards which have now morphed into New Years cards! We are a few hours into the next snowstorm which will last about 24 more hours. I have finished the laundry and am remembering how when we first retired, I would laugh because it had been over 30 years since that had happened. The real miracle was that I washed and dried Ron's hearing aids, and they still work. Yes, I always check his pockets--especially for Kleenex but those hearing aids are tiny, and I missed them. Could have been a several thousand dollar mistake!

Time to update you on Ron's progress. We traveled to Ann Arbor for the last two days of 2013. Ron had two extracorporeal Photopheresis treatments. ECP. He will continue to have a pair of treatments every other week. We are so glad that Medicare took over the cost from Tricare when Ron turned 65. The treatments help to take the edge off the aggressiveness of his T cells which continue to attack his skin and have made his lungs have chronic issues. His bloodwork December 30 was stable except it showed that his immunity is very low now. Ron did not want to travel to AA in the upcoming week, so his infusion IVIG to boost immunity is the following week. We will spend 3 days in AA.

I am trying to let Ron eat more things of his own choosing...which means a lot of gummy bears, candy bars, Tom's donuts and rolls, cookies, sweet drinks, etc. amazingly his weight stays close to 180. I look the other way and load up the insulin injections. This decision is based on the nurses' input to my concerns about his diet. If this food adds to his quality of life, so be it. And I feel more balanced on this tightrope of monitoring things.

So looking ahead, I will be glad when he has had his IVIG infusion. He usually feels better because his body is infused with antibodies from over a 1000, yes 1000, blood donors. If you are a blood donor, you are an amazing person. Thank you!! Ron has had numerous white blood cell, red blood cell, and antibody infusions since he was first diagnosed with leukemia AML in April 2010. The infused antibodies help control infection. Ron also takes 3 antibiotics and antiviral and antifungal meds. His body needs a lot of medical support to fight infections.

The snowfall really is beautiful, and when I got up at 6:00 this morning, there were 3 deer under the apple trees right outside our windows. While Ron and I looked out the bathroom window, Blue jumped up on the bathroom chair, put his paws on the windowsill, and he watched too. A surprise from nature that catches your breath.

Love, Ron & Jan

Welcome Lily Grace Hover, our New Years Day Granddaughter

Little Sister, Lily, arrived on New Years Day in Germany at 10:00 P.M. She weighed 7 pounds 9 ounces and is 20 inches long. Big Sister, Abby, approves!