Archive for January, 2009

Right around 6:30 AM the room awakens after a limited night of sleep. The mood is tense in anticipation of what comes next. Caitlyn’s biopsy is today, Jan 6th 2009 completing the testing phase to a road map to treatment. Not long after we wake up, Steph and Jen arrive to accompany us down to the OR waiting area.

Caitlyn’s fear level rises sharply minute by minute. Around 7 AM the courier is there to bring us down to the waiting area. We all follow and after a week plus my endurance level has increased enough to keep up with the courier, it’s not a walk that they do but a slow jog. It is not a long trip, 5 minutes tops and we arrive in the waiting area.

Not long there after the liver surgeon arrives and explains what is to be done again, testing of her bone marrow as well as storage in case you would need marrow back later on, biopsy done arthroscopically of the mass in her liver. The anesthesiologist is next in the room and he made the mistake of telling Caitlyn of the tube they would insert to help her breathe during the procedures. At this point I was wishing they sedated her like I had asked before we went down there.

We sign papers after Caitlyn asks for the 1,00th time if she would be allergic to it and he leaves. The nurse hands me a white jump suit (pictures available on YouTube so I am told) as I am walking her to the OR and staying until she falls asleep. Hailee got a kick out of the stay puff marshmallow man outfit.

About 10 minutes later I am handed a mask and shortly after the anesthesiologist returns to bring us to the OR. Within 2 minutes we are there and switching Caitlyn to the OR table. The equipment in the room is frightening even to me, I know Caitlyn was not liking the situation as her color turned white quickly. She laid there with me in a chair stroking her forehead and hair as the work to put her to sleep began. We all looked the same as she clung to her stuffed animal that she has had for years. They work around me as I feel them attacking an IV line around me. I sit there talking as best I could to let her know I was there. What seemed like an eternity was about 5 minutes to put her to sleep. I was told I could remove my mask to kiss her and I did just that as well as retrieved her stuffed animal. I was walked back to the post-op area first to remove the jump suit and then onto the waiting room.

So we waited, we paced, we waited some more as more showed up, Kathleen & my mother as well as Kelly. Steph and Hailee were inseparable and I am pleased to see the strong bond that has developed between them. It was only a matter of time as they are 2 of a kind.

About three hours later the liver surgeon appears and calls Georgine and myself into a room to discuss how everything went. At the time I took in what we wanted to hear, everything went fine and she was in recovery waking up. He explained how he didn’t biopsy the liver because he saw more than was eluded to on the CT scan and MRI’s. Instead he did the biopsy on some of the paritoneal implants. He mentioned he removed about a liter of fluid from her abdomen (ascites) and said everything with the marrow went fine. He then brought us into post-op to be with Caitlyn.

She is awake, alert and nasty understandably. We didn’t care as all we knew was the last test was complete, next would begin treatment for what we were thinking is ovarian cancer. She is worn out and wanting the pain to go away, I believe 3 morphine treatments later she was a little more comfortable. Less than an hour later we were on our way back upstairs to her room. Georgine and Hailee left prior to that to bring everyone else upstairs to meet her, this was a mistake as on the way up Caitlyn requested no more than 2 people at a time. I think mommy was in trouble when we entered the arts section and saw the room filled with people. Knowing what Caitlyn wanted I was a bit tense at this point when we entered the room.

While the after visit wasn’t what Caitlyn wanted, we made it through that early afternoon. Caitlyn was up and to the bathroom like expected late in the day. A few more visitors came and went, around 9PM we were back to the four of us again. It was an uncomfortable day for Caitlyn as well as her parents to say the least. We were hoping for a preliminary result by the end of the day but that didn’t happen.

Day 12 begins after a rather good night sleep for all involved. If I remember correctly there was a 2 hour delay for school (not sure) and Georgine brought Hailee to school from the hospital on this day. They returned later that afternoon as Caitlyn gained strength we started our journey’s back down to the lobby. At some point during the day Caitlyn won the battle of where she wanted her IV, right elbow this time instead of her right hand, covered of course.

Day 13 was no different other than today was a blood work day while day 12 was a lab holiday (that is what we called it). Her ammonia level was hovering around 100 and even though she was still in pain you could tell she was starting to look forward to finding out what treatment she would be going through. Another surgery was looming to put in a life port so that was weighing on her mind quite heavily. Still no preliminary results and there was another liver conference today, Caitlyn of course was discussed but we didn’t hear any news of that discusion.

The night came quickly as visitors started to spread out evenly. Day 14 was about to begin with a meeting with the pediatric surgeon for the morning about the life port. More importantly day 14 would bring us the news we had been waiting for, results of the biopsy. Little did I know at the time how we were to be blindsided again with the unimaginable…

To be continued…