I can’t quite remember what time Randy and I pulled up to UCLA on the morning of March 3, but what I do know is that it was very early—and it seemed that no one was around but the two of us. As we pulled up to the hospital, though, we saw four people standing together in the dark, and soon realized it was our four children (our two daughters and their sweethearts, who have become our additional two!) Seeing the four of them there, we felt less alone and maybe less scared.
Now we were a unit of six!
Once out of the car, and after hugs all around, Randy led the way and ran up the stairs to the hospital, reaching the top before any of us. He was ready for this surgery, appreciative of the opportunity, and eager for it to be over, with him home, and moving forward.
This brain surgery would be performed by a brilliant surgeon, Dr. Linda Liau. Dr. Liau is, we believe, EXACTLY the kind of person most people wish would go in to her line of work. In a field of darkness she brings so very much light. She brings light because of her skill, light because of her manner of interacting, light because of her dedication and extraordinary research and yes, light because of her hope.
If things went according to the plan, Randy would be eligible, weeks down the road, for a cutting-edge clinical trial. A clinical trial of which, Dr. Liau is the principal investigator, and a clinical trial that in many ways, seems to have the name Procovery written all over it.
We understood that Randy’s speech and right side functionality would likely be negatively impacted by the surgery in the weeks just following the surgery, but that then both would likely improve, even beyond his current status. In preparation for this, the night before the surgery, he and I prepared index cards with words we felt would most likely help us target words and communications over the next several days.
However, we soon learned that what was to be a four or five day hospitalization with Randy walking out of the hospital became a five week, exhausting and challenging ordeal, with Randy leaving the hospital in a wheelchair.
This hospitalization really, often, seemed to be one step forward and five back. “Backsliding” never feels great, I would guess, but in this instance (as in many) there was an added level of anxiety on all of our behalves, as we were shooting for Randy to be enrolled in this particular clinical trial and timing and functionality were both factors.
One night, after Randy had spent the week moving from surgery to ICU to the regular hospital, to neuro rehab, then, very quickly transferred back to the regular hospital due to an accumulation of fluid, when Randy and I were both feeling the pressure of “backsliding” we received the following words in an email from one of our amazing, four children—
“One of the rules of Procovery is to accept backsliding. Randy’s will is not what is backsliding but his body’s rhythms are just that; swings of energy and natural flows of healing, rest, and recovery. There will be ups and downs, and he can continue to stay positive and more forward no matter what!”
Hubba hubba, ding ding DING. It is amazing what the right words, at the right time, can do. And time and time again, our kids had them for us. Time and time again, they said just the right thing, they brought in just the right thing, they did just the right thing. Time and time again.
But now, here we are nearly 10 weeks later, and while Randy is still working round-the-clock on his healing path– he is home, with us, where he belongs!
AND, as much as we were afraid it might not work out for Randy vis a vis the clinical trial, he is now enrolled!
More to follow…