Stand Up to Cancer

Read about it here.

Feeling the Heat, Part 2

Henry has pretty much been holding his own the last few weeks. Some days he will be very tired and sleep pretty much all day long. Other days he will be unable to keep down any food or drink. And some days - like today - he wakes up at 6 AM ready to go and eats a breakfast consisting of a hot dog, Alpha Bits, cheese grits and fresh strawberries - in that order.

We now have a nurse that comes by two or three times a week to check on Henry and bring fresh medical supplies. We were able to get a better wheelchair and a special gel cushion to help prevent bedsores from sitting in the chair all day.

Last Tuesday the air conditioner finally gave up. When we were thinking about buying this house five years ago, the seller told us up front that the HVAC was non-negotiable. We brought in a HVAC inspector who looked at the system. His eyes got wide and told us that these were the original units from 1977 and that they should not be working. However, he added that they looked fine and there was nothing really wrong with them...except that they were operating ten years past their life span. I guess they decided five more years was enough.

We were able to have a shiny, new heat pump installed courtesy of a very generous (and very timely) gift from a relative. Regular readers of this blog know that we attempt to protect the privacy of family and friends by not identifying anyone by name (outside the immediate family). This policy, however, makes it difficult to give due to the many, many people - inside the family and out - who have gone above and beyond the expected support, be it emotional, financial, or devotion of personal time. So, in feeble thanks for our new, comfortable AC, and in homage to all those who have done so much, we give you:

THE UNKNOWN UNCLE!

Feeling the Heat

It was 106 degrees Wednesday as we checked in with Dr. L, Henry's pediatrician. We spent six hours in the ER the previous night after we discovered Henry sitting in a small puddle of blood.

In a nutshell, since Henry has lost all feeling and most muscle control from the waist down, he has been unable to completely empty his bladder The fluid remaining becomes a little cesspool of bacteria and he ended up with a bladder infection. So after six hours of tests, some IV fluids and an antibiotic, Henry came home feeling a little better and even a little more energized than before.

Subsequently, Dr. L gave us a lesson in the catheter, which will be used 3-4 times a day to empty the bladder.

Of all the pain, treatments and procedures Henry has endured, one particular event is burned into his memory. Following his very first surgery one of his doctors unceremoniously and not very gracefully removed the catheter that had been placed during his surgery. Henry never really forgave that doctor for the discomfort and degradation of that moment. Ever since, when any kind of possible procedure has been discussed, Henry always asked, "Do I have to have one of those things? Can you take it out when I'm asleep?" So it was not with great joy that he learned he would have to have one put in and removed several times a day.

But Henry is still full of surprises. As Dr. L explained the importance of emptying the bladder every four hours or so, Henry asked if he would have to get up during the night to have it done.

"No," he was told, " you don't have to wake up and do it."

"OK, then," he replied.

Despite the recent MRI that shows progressive tumor in the spine, and although we have discontinued the Revlimid, we stay hopeful. Henry is getting good results from accupuncture in treating pain and inflammation, and we continue to be proactive in his treatments.

Today is the second anniversary of his first surgery and diagnosis.

It is much hotter this year.