Primary Children's Medical Center (part 2 "oh what a day")

This picture was taken when we went for our first consultation at LDS Hospital Radiology (Ashleigh loved that aquarium), about a week after her surgery. Radiation therapy was one of the hardest things I've ever had to do in my life. I will be writing about that in a future post.

It was at the end of November 1991 that I received an important letter in the mail from PCMC; it was Ashleigh's medical record that I had requested be sent to me. I sat down at my dining room table that evening and began to read. This six page report included Ashleigh's recent medical and social history, a detailed description of Ashleigh's surgical procedure, a pathology report, and her discharge from the hospital summary. As I read, anxiety began to overcome me, the surgical report was so overwhelming, I really didn't understand any of it. My sons were in the living room just being typical boys, goofing off and making noise. I became more and more agitated as I read because I couldn't understand the complexities of what I was reading; adding to my confusion was the noise that the boys were making in the next room, ultimately it caused me to become impatient with my sons. I realized that this wasn't the time to do this, so I put the letter away for another day. That day finally came.

I had thought about this report recently and actually came across it quite by accident. I opened the envelope and found the six page report just as I had left it nearly twenty years ago, I also found the sketch of the tumor that Ashleigh's doctor at the Layton clinic had drawn for us on August 16, 1990.

On Monday morning, August 20, Ashleigh was taken to surgery. A biopsy would be performed where pieces of the tumor would be removed and studied. The doctor was confident that it was a tumor... but gave us a little bit of hope by telling us that "it could just be an infection", but the only way we would know for sure was through the biopsy. Shortly after we were settled in a waiting room, Mike was called to the phone. The call came from surgery, just to let us know that Ashleigh was asleep and doing well and that the surgery was about to start. Mike rarely speaks of this call, I'm not sure that he has ever spoken of it to anyone but me, but just as the person on the other end of the line was finishing the call, Mike heard the distinct sound of a drill. That is a memory that he has never forgotten.

The "waiting game" can be very long, tense, stressful, frightening, and much more... I wish I could describe adequately the physical and emotional feelings that I felt at this time. I can't, but I will try. You know that bad, sick feeling that you get in your stomach when you know you've done something wrong, or you just have a bad feeling about something? It's like that... only much, much, much... MUCH worse!!! We waited, with that sick feeling in our stomachs, for the Doctor to appear. It's funny how we were so anxious to find out that everything went well... at the same time, dreading to see the Doctor, and when we finally did, the sick feeling becoming worse just at the sight of her. When Dr. Wright finally came from surgery and gave us the news, it wasn't good... it was the brainstem glioma. Of course we were devastated.

The rest of this post I will dedicate to the most significant memories I have of the five days spent at PCMC. First of all, post surgery recovery. Ashleigh was brought to the Pediatric Intensive Care Unit (PICU) where she remained until Thursday, August 23, when she was able to go home. Many of our family members and friends came to visit us at the hospital. We were so blessed by the love and support that we felt during those few days.

I want to share a couple of comments that I copied from Ashleigh's and Christopher's "Family Friday" post on my other blog. This is what Alan and Marivic had to say about their visits to the hospital on the day that Ashleigh had surgery:

What Alan said: "I remember as Ashleigh’s diagnosis was in the early stages (the first couple of days) I got off work at KSL and headed up to Primary Children’s where she had undergone a biopsy. I had just missed Lesley and Mike who had been there the whole day, if not overnight, and had run home for an hour or two to freshen up while Ashleigh slept. So for a few minutes I was Ashleigh’s only family member at the hospital. She woke up and got a little fussy so I had the opportunity to hold and comfort my niece on what was surely an unpleasant day for her. She knew it was her Uncle Alan and seemed happy I was there."

What Marivic said: "Ashleigh was heavenly father’s instrument in giving me comfort and reassurance, during what must have been one of Ashleigh’s most painful time on earth. It was after her surgery. I don’t remember now, but Les and Mike must have left the hospital to go check on the boys after hours and hours of being with Ashleigh. Alan who had been holding Ashleigh had to leave too. Ashleigh whimpered and I asked the nurse if I could hold her. She told me it’s best not to move her but I could hold her hand so she would at least know I was there. I remember holding Ashleigh’s hands and whispering to her. I remember thinking she was mostly unconscious until she grasped my hand so tightly as if to tell me not to leave her. I sat there whispering to her, telling her how much we all loved her. I told her I think Christopher knows she has an owie and if he is allowed to I’m sure he will be there for her, and if he drops by to make sure to tell him his Mommy said Hi. I remember crying for her and Christopher but there was a reassuring calmness on Ashleigh’s face and I felt peace. It seemed as she pressed my hand that she was comforting me instead of me comforting her. Then Lesley came, and as soon as she spoke, Ashleigh relaxed her hold on my hand. She knew her Mommy was back."

The PICU is a big, long room with beds lining both sides. There was a wall behind us and curtains in between the beds for privacy. I remember holding Ashleigh in my arms as I sat on a chair next to her bed. The two of us were alone at that moment and she clung to me as if she never wanted to let go. An 18 month-old girl was being brought to the bed across from Ashleigh, she had just had surgery to remove a brain tumor... and it was successful. There I sat, all alone, holding my frightened and traumatized daughter, and watched the "celebration" of another family that was taking place just a few feet from me. I wanted that to be us. But it wasn't.

I mentioned in my August 16 post that my mother-in-law had had surgery on the day we found out about Ashleigh's tumor. My father-in-law didn't want to tell her about Ashleigh until my mother-in-law was home from the hospital. Bonnie (my MIL) is devoted to her family, and somewhat worrisome about all of our well being. I remember her coming to PCMC, barely able to walk herself after her surgery, and the strength and courage that she exhibited in a positive way, I will always appreciate it.

My brother-in-law Tony came to the hospital as well. I remember standing outside the front doors of PCMC when he gave me a hug. That hug was so tight that it hurt, but I recognized that Tony was hurting, and that hug brought much needed comfort to us both.

Besides the visits from our family and friends, many people sent kind cards and gifts. All of it was appreciated. Our friends the Websters came to visit, Janet who was an excellent seamstress had made Ashleigh a darling outfit which she wore home from the hospital.

One afternoon as I sat with Ashleigh in the hospital, she looked at me and sighed as she said, "ooohhhh, what a day." My precious, little 3-year-old daughter had already experienced some of life's most painful trials. Even now, twenty years later, occasionally one of us will say, "what a day" and the other knows exactly what those words are in reference to.

We took Ashleigh home on Thursday, August 23. It was good to have her at home, back with her mommy and daddy and her boys where she belonged. Our journey was just beginning.

Primary Children's Medical Center (part 1)

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.