PCMC is a little world within a world. There are many dedicated medical personnel who work there, as well as volunteers who try to bring some peace and comfort into the lives of the patients and their families. One of the volunteers that came to visit Ashleigh a day or two following surgery, brought this cat along to provide a little comfort. I felt a little sad when I chose this picture to post. On all of the previous posts the pictures I've shared have shown our happy girl... she looks so weary here. I can only imagine what must have been going through her mind at this point in time.Many people have come into our lives since Ashleigh's death... people who didn't have the opportunity to know Ashleigh in this life. She has a sister, sisters-in-law, nephews and nieces, cousins, and a couple of aunts and an uncle who have all become a part of our lives, as well as new acquaintances we've made through the years.
I have often shared Ashleigh's story verbally... but this has been my first attempt at writing it. Some of the experiences are vibrant in my mind... others are not. I mentioned in one of the first posts on this blog, that I made a video tape "journal" of sorts shortly before Ashleigh died. I had never watched that tape until recently. As I watched and listened, I was reminded of several things that I had forgotten... I also regretted that I hadn't shared more experiences.
Our experience at PCMC is one that I don't remember every single detail perfectly, but I do remember it well. We did receive the phone call from PCMC that Thursday evening August 16, just as the doctor told us we would, we were told that we were to be at PCMC the following Sunday morning August 19.
To say that we were in a state of shock for the following few days would be putting it mildly. Our lives were changed immediately, and would continue to change with each bit of information we received.
Our phone didn't stop ringing and many people came over to our home. Although I appreciated all of the love and support we received, at times it was overwhelming and a bit wearisome, especially when answering peoples inquiries and telling the same story over and over. At one point our friends the Welches, loaned us their answering machine which became very helpful. This was a time when our conveniences of today such as email, texting, facebook, and blogging would have been very helpful. Nonetheless, we truly appreciated the outpouring of love we received. We needed it.
On Friday, August 17, I drove back to St. Benedict's Hospital to pick up Ashleigh's MRI results which we were to take with us to PCMC. It was a strange feeling, holding that over sized envelope in my hands, knowing that significant information concerning Ashleigh's future was literally in the palm of my hands. It would have been nice to simply destroy the contents of that envelope, as if doing so would make all of the bad stuff disappear... unfortunately it wasn't that easy.
We reported to PCMC on Sunday morning as we had been directed; my parents accompanied us. Ashleigh was admitted as a patient and we were shown to the room where she would stay.
It was a surreal experience being there at PCMC. It hadn't even been 72 hours since we were told that Ashleigh had a tumor, since then our lives had been turned completly upside down. As we waited in Ashleigh's room for the Neurosurgeon to come see us, my heart was very, very heavy and my stomach was in knots. This was the scariest, most frightening experience of my entire life.
We've all seen the movies... those scenes where the doctors sit at a big, fancy desk with some poor soul sitting across from them, and they break the bad news... gently. It wasn't that way at all. Suddenly the doctor; Dr. Wright, came into the room... with her entourage. I don't remember how many were with her, but she had a few others in tow. She introduced herself and we all stood around the room (no fancy desk) as she took the MRI pictures from the envelope and held them up to the light. She started to explain to us about this tumor, it was called a brain stem glioma (I just spell checked glioma... the options the computer gave me were gloom and gloomy... how appropriate), you see, the tumor grows in the brain stem. It was impossible to operate in the brain stem, maybe near it, or on it (not good chances there either), but not in it. She continued to explain that Ashleigh could have radiation therapy, if we chose to do that (she repeatedly said, "if you choose", OF COURSE WE CHOSE). Radiation would shrink the tumor... but in a year or two the tumor would come back. My question to her was, "and then we do radiation again?" At this point the harsh reality was made fact as she told me, "no... you can't do radiation again." Basically what she was telling me, and did tell me, was that the tumor would indeed grow back and that there was nothing we could do.
In that instant, it seemed as if it was just me and the doctor alone in the room... facing each other. Everyone else was still there... but it was like an unbelievable dream and they were all a part of it. Although I was looking the doctor directly in the eyes, I could see my mom sitting on a small sofa directly under the window, with Ashleigh at her side. At the same time I saw Mike's reaction as he turned his back, and my dad's arms went around him, I knew Mike was crying, dad was saying something to him... I don't know what. And me... I stood there and faced the doctor... and I didn't shed a tear.
She explained, that on Monday morning Ashleigh would go into surgery and a biopsy would be performed. This would simply verify that everything she had just told us was in fact... the truth.
That Sunday was one of the longest days of my life. We wandered the hospital with Ashleigh, there was a playroom that she enjoyed, and we spent time in her room. She was still dressed in her own clothes, at this point she didn't look like a "patient".
I remember walking the halls of the hospital with my mom when we saw a huge whiteboard with patients names written on it. There was Ashleigh's name; it was surreal seeing it there. I loved how we spelled her name, it was beautiful. I remember as we stood there, that I made a comment to my mom about our choice in how we would spell Ashleigh's name when she was born, and that I never imagined seeing it on a whiteboard in PCMC, in the circumstances we were in now.
I don't remember when my parents left, but they would return to be with us the next morning. Mike and I weren't prepared for an overnight stay in the hospital, we really hadn't known what to expect when we left home that morning. When bedtime came, Ashleigh was able to put on a hospital gown and get cozily into her bed, while I laid next to her and Mike settled down on a chair... both of us fully dressed. It would be a long and uncomfortable night. It wasn't until Monday afternoon that we were able to go home (briefly) to shower, change, see our boys, and then go back to the hospital.
