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.