Now we know what we are dealing with. In a sense I almost wish I didn’t know, not sure why but it is frightening to be told of something so rare the doctors don’t even know what to do. I keep thinking back to the conversation in the ER where you could hear the concern in the doctors voice knowing how far along this had spread.

The next conversation that kept coming back to me was the one after Caitlyn’s biopsy where the surgeon had told us he didn’t biopsy the mass in the liver. I realized then that he saw more than what the CAT scans and MRI’s revealed. Even though all the doctors were telling us we did nothing wrong there is no comfort in that reassurance. This is our baby girl and why were we dealing with this but how do we cure this?

That Saturday business picked up so to speak, conversations with family and friends provided the motivation we needed to FIGHT. A visit from Dr. R. who Georgine works for began the learning curve prior to our next meeting with Caitlyn’s doctor which was to happen Monday morning before she would have the life port put in.

Dr. R. came with some print outs of experimental procedures used in treating different types of cancer. Prior to that I had talked to Deb who was scouring the web for information on FHC. Both the information that Deb came up with as well as Dr. R. pointed to resection and debulking. After a brief visit in the lobby with Dr. R. Caitlyn, Georgine, Dr. R. and I went upstairs to speak with the doctor from the group that was on the floor that day.

That doctor was to come in so knowing Caitlyn should not be there for this conversation Georgine brought her back downstairs to the lobby. Dr. R. and I remained in the room awaiting the doctor who was on the floor.

He enters the room with a bunch of papers in hand, he is fully aware of Caitlyn’s condition as we knew. We started asking questions and he provided a few answers referring to the papers in his hand which turned out to be a recent paper written on FHC. He agreed to recommend debulking to Caitlyn’s doctor and essentially that would come down to a decision by the surgeons on whether she would be able to handle that type of surgery at this time. He restated the statistics with this time the average survival rate being 13 months referring to the papers. Shortly there after we all left the room. I remember speaking to Dr. R. on the way downstairs about how horrifying the thoughts of debulking is, removing a large portion of Caitlyn’s liver and removing as much as possible of the other tumors, nodules and lesions.

Rejoining the lobby party I stepped outside for a minute to call Deb and Kathleen. I gave Deb Kathleen’s phone number to get in touch with her to pass along any and all information. I also called Stuart and those 3 people from that moment until late Sunday night worked as a team to acquire any and all information in regards to FHC. I told them all I didn’t care what it was I wanted a copy of it as the meeting Monday morning was fast approaching. 2 days is what I had to do research before that meeting. Sunday night I went home for a few hours to print out all this information to bring back to the hospital and read, several hundred pages.

It’s around 11 PM by the time I get back on Sunday night and everyone is either sleeping or about to fall asleep after a pretty routine day. I at this point am running on pure adrenalin considering the lack of sleep in the weeks prior. I sit down at the table where we had the conference on Friday facing the room with the door still open. Being able to look up into the room and see Caitlyn was my motivation knowing I had to learn this disease in a matter of hours. My biggest question was whether she needed the life port at this time knowing chemo is not an effective treatment. My other concern was it was another surgery and IMO the biopsy had a rather large affect on Caitlyn and not for the better. A conversation with a doctor a Johns Hopkins on Tuesday would assert my opinion.

Amongst the mound of papers were experimental treatments, the most recent paper written on FHC by that same doctor at Johns Hopkins as well as all other information we could find tracking this disease right down to the first case in 1956. Every paper said something all be it different but leading to the same things, resection of the liver and debulking if it has spread. I learned of how it is treated if we were dealing with just the mass in the liver, transplant or resection would be a cure.

I read the stories of how most are diagnosed when checking for something else, they stumble upon this just like we did. I read stories of 3 year survival all the way up to a 14 year survival. I also read the stories with months of survival as opposed to years. Every case is different and there isn’t much in the way of case studies, none in children in fact and that is one reason why I am documenting Caitlyn’s case.

By 4 AM I was done reading and headed off for a few hours sleep. The meeting was to be around 10 AM. Bright and early Caitlyn was awake and so were the rest of us. Caitlyn was NPO again as the life port was to be put in today.

The doctor comes in and Georgine and I sit down with her at the table to discuss what we were going to do from here. She had researched as well over the weekend as well as had been in contact with the national cancer institute to determine protocol for the drug Sorafenib. She rambles off the statistics when using this drug and the numbers lower yet again. 10.7 months as opposed to a placebo (doing nothing) at 7.3 months. It does show promise in shrinking down though which by a group determination at this time Caitlyn could not undergo the surgeries to resect and debulk but we would seek other opinions on that matter. She had mentioned how Chemo in coordination to this drug can provide additional shrinkage.

My turn came. I started in with the surgeries of course and asked for a presentation to be written for other opinions. I questioned the protocol and if she was able to find a phase 1 or 2 study, there was none. We talked about the doctor who wrote the most recent paper on FHC at Johns Hopkins and we agreed that he would be the best to contact. Within an hour we had the presentation in hand and were faxing everything down to Johns Hopkins for that doctor to review. We also worked on getting in touch with Sloan Kettering. By the time the meeting was over we were in full swing with the doctor here understanding we wanted her to act in our behalf to work towards whatever it takes to FIGHT as well she would be continuing towards starting her on Sorafenib based on guidance from the NCI.

I felt an empty sense of accomplishment if that makes sense. I was able to communicate with the doctor on the same level but we still didn’t have an answer on how to treat or in what way to treat. The presentation that was written is frightening considering the questions about the affects of chemo on the ammonia level which is now being stabilized with medication. We do however know what the FIGHT is. Our hope is to decrease the sizes and eliminate some of the smaller stuff so resection and debulking can take place. The thoughts of this hope is terrifying to Georgine and I knowing how extensive those surgeries will be. Our FIGHT is against time as the days and months ahead play out. My only wish is to be up to this challenge.

To be continued….