Thursday, January 14, 2010

Day 72

I am getting closer and closer to that 100 day milestone, and we have our fingers and toes crossed that all continues to go well for me and for our whole family. One of the most common topics discussed lately has been our battle with not just the physical side-effects, but also the psychological side-effects of this very long process. It is hard to explain, but the stakes are obviously so high for all of us, and the waiting has become an extreme challenge. Additionally, after the 100 day marker, there are still going to be a number of risks and dangers that we will need to deal with, so some days it just feels like this process will never end. But we push forward and take every day as a blessing, hoping that these days string along and eventually join together into 1 year, then 5 years, and then 20 years or more. But it is difficult, because Ha and I are generally not very patient about anything!

We had some scares last week, as there was some concern that I had more blood clots, which landed us an evening trip down to the MGH emergency room. But everything turned out to be clear and it was an apparent false alarm. The emergency room was quite an experience. Hundreds of people all looking for various forms of help. Some young, some old... the emergency room does not discriminate and it was fascinating to see people from all walks of life traveling through there. By the time we left at about 11pm, they were so crowded, there were stretchers lining the hallways with patients waiting, and there was simply no place to put them. It was quite a scene and we were glad to go home.

Mai and Tal are fully back into their school routine and really enjoying all of their activities. They especially love Tuesdays and Thursdays when they both go together and this past Thursday, they had "Animal Adventure" come to their school. They were able to meet and touch a number of animals, and they claim they touched a tarantula, which I was (and still am) in disbelief about. Brave kids... braver than their own Dad! Ha has taken a tiny bit of time to try some sewing projects, although she is still swamped managing our household, so the more serious sewing projects will probably come when I am feeling better and doing all that laundry, dishwashing and grocery shopping that I am going to owe her!

On a final note, my thoughts today are with the victims in Haiti. The earthquake was devastating and I hope they are able to receive aid quick enough to save the many hundreds of thousands who are affected.

Take care,

Ron

Friday, January 1, 2010

Happy New Year

It has been a busy couple of weeks and I did not realize how long it has been since I provided my last update. Generally, things have been going well and I continue to feel healthy on most days. Channukah, Christmas, Mai's birthday and then New Years all crowded into a 2 week period always makes the end of December a very busy time for us, but all of the activity has been a nice diversion. We lit the candles each night for Channukah, exchanged gifts on Christmas, and celebrated Mai's birthday and rang in the New Year together yesterday, thankful to be home and celebrating together as a family.

Tal's fascination with horses has continued and he now has many more plastic and stuffed horses to play with (thanks to the holidays), and our beautiful daughter Mai is 5 years old (going on 10), and so excited to be all grown up. Ha continues to keep it all together, juggling a huge list of "stuff" (we always wonder why we have so much stuff to manage) and I continue to offer my driving skills and waiting skills when I can, looking forward to the days when I can actually start to do things around here.

On my last weekly checkup, they found two blood clots in my leg, which does occasionally occur after the treatment I have endured. So, I am on bed rest until Sunday and back to giving myself 2 shots per day (blood thinner) to reduce the clots and stop more from forming. Otherwise, my last two checkups have been fairly uneventful.... blood counts and liver enzymes have been stable, and it appears that the graft vs host disease is greatly reduced for now. I am at day 59 today and Dr. Chen confirmed that if all continues to go well, I am on track for release of many of my restrictions at day 100... very welcome news for me, as my latest excitement has been keeping our bird feeders filled.

Wishing you a very happy New Year and all the best for 2010.

Ron