Archive for January, 2009

1/9/2009

It’s an early morning meeting with the pediatric surgeon to discuss the life port to be surgically implanted Monday morning. For the most part this day starts out like any other day. Blood tests, travel down stairs to the lobby for some fresh air and Caitlyn had school today at 2PM. Little did I know what was about to happen in the early afternoon when we awoke this morning.

The early morning meeting went well even considering Caitlyn’s fears, after the biopsy this would be the second go around. Georgine was home and Hailee was at school for the day. The phone calls didn’t stop this morning and my friend Bill was in to visit around noon. Georgine was in contact most of the day as we expected results from the biopsy to confirm what everyone thought all along.

Shortly after 1 PM the doctor comes to the room with a few other residents. She asks where Georgine is and I tell her she was at home awaiting Hailee to finish school. The doctor asks if she could meet us at around 2 PM to go over the results, no later than 2:30 PM. With the doctor still there I call Georgine and ask her to pick up Hailee from school and meet us down there to go over the results. She breaks at that point asking if it is bad, meaning the results. I like to think I was right in telling her no, that this was normal procedure but I know now I was denying what was going to happen.

A few phone calls later from Georgine and they arrive at 2 PM. Bill had left a few minutes earlier to prepare for work and the doctor was now coming back at 2:30. We wait as Caitlyn is in the room doing her school work. There is a table and kitchenette setup just outside the room for the oncology unit to use so we sit at the table. Hailee is in and out of Caitlyn’s room being nosey at the school work like she always is.

I notice Rose, our social worker arrives on the unit and the nurses seemed to gather. The doctor arrives and goes behind the nurses desk, it seemed as if she gathered the troops and headed over to the table. Caitlyn is still in the room thankfully but the door is open. She is far enough away not to hear but I have a clear view of her as the doctor sits down across from me and next to Georgine.

Georgine is to my left and Rose is to my right. The nurses are around us and Hailee is all over the place in and out of the room. One nurse whom Hailee seemed to bond with nicely offered to take Hailee down to Child Life and Hailee having been there for some time now had adjusted to the surroundings and was eager to go.

The doctor started with “I am not sure how to tell you this….”. It was like I had tunnel vision, sort of like as if time stood still. It was explained that Caitlyn has an extremely rare form of liver cancer, Hepatocellular Carcinoma Fibrolamellar type. Next came the prognosis, statistics with advanced FHC put survival rates at 0% for 5 years. I took all this info in, Georgine seemed to blackout a lot of the prognosis info. I continued to listen as Georgine was broken and the doctor continued. I could see Caitlyn while listening to the doctor speak about how chemo by itself is not effective in this case.

I remember the doctor stating that they had seen this only once before and it wasn’t advanced as far as Caitlyn’s. She continued on explaining that we did nothing wrong and how this is how FHC presents itself, no symptoms, no signs and IMO she only became sick when she was in the hospital.

Finally the explanation was complete and I stated to ask questions, broken of course. She had mentioned about chemo not being effective so i questioned if she would need the life port on Monday. The doctor seemed to be unsure and IMO I felt Caitlyn took a huge step backwards with the biopsy surgery so my reasoning was how would another surgery affect her now. The doctor seemed to agree to a point and wanted to meet again on the coming Monday before she would go down for that surgery and after she had more time to research on treatments including looking into phase one studies.

We talked some more and Rose began to speak about placing Caitlyn into Make a Wish, the application was submitted shortly after this meeting and approved on Monday. I asked about quality of life and also if we had to transfer to another center would we be able to maintain the relationship there. Of course the answer was yes. I asked for answers to questions that there were no answers to due to the extreme rarity of advanced FHC. At the time this is the chances, .7% of 1,000,000 children have a liver cancer while 1/5th of those have FHC and you can narrow it down even further by 1/3rd of those have it at an advanced stage at the time of diagnosis.

How long did she have this? I can’t answer that other than to say 3 months to a year and a half. In any case this is an aggressive disease. Those numbers are based on asking the oncologist and the liver surgeon with one assumption that this may have been caused by an infection but at this time none of that can be confirmed.

The meeting ended with the reassurance that all involved would do whatever it takes. The doctor again wanted to do some research over the weekend and I was about to do the same. I made sure she wrote down the name for me because absorbing all this was not something I expected, this was the second blindsiding in a 14 day span for us.

We were alone more or less, Caitlyn was still in school while Hailee was doing her rounds. We started calling family and friends to explain. I don’t remember the order of who was called first nor do I remember much of those conversations but again most were on their way or preparing to come down to visit that night.

From 5 PM on we were mobbed with visitors, thankfully as well as this seemed to pass the time. One conversation that sticks in my mind was talking to Kenny and Stuart while outside for some air. It was asked somewhere along the way if we would be staying there. My answer was this “I don’t know. Put a man in front of me and I will knock him down, give me a job to do and I will get it done. For the first time in my life I don’t know what to do. I know I have to fight, I want to fight but I don’t know how to fight this.”

I have known Kenny since 1991 and Stuart for the last 8 years. Best friends and coworkers I could ever have and I made it clear to both of them during that conversation that all the offers of help they were giving were about to be cashed in.

Just like all days before, around 9:30 PM all the visitors were gone. I think the daze that Georgine and I were in continued until we found some sleep that night as we all stayed the night being it was a Friday night. I was last to fall asleep as always, I am a night owl being that I work online.

My breaking point was reached when I went downstairs and outside to sit in the car. I asked myself why of course. I wanted to understand how right down the road there is the county jail, where criminals are given a far better deal than Caitlyn has gotten. I need to understand how this could be, she didn’t look sick before she entered the hospital. It was only after we were there when I started to notice anything and all of that was a result of the tests performed IMO. I leaned on Deb when I called to see what was going on with business, during the phone call business was secondary as could be expected.

Deb had been researching online since I talked to her earlier. This was a tear filled but informative conversation. Looking back now, this is when the “FIGHT” really began!

I am Joe Bagnato, Caitlyn’s father. This blog is our story of our “FIGHT” for a cure, including our version of a case study (never done before in a child with advanced FHC).  The “FIGHT” begins now!!!!