Sunday morning hits after a sleepless night for me although Caitlyn did manage to grab about 6 hours thankfully. The phone rings in the hotel room, it’s me waking up the natives 10 minutes prior to the alarm at 6:50 AM. They were already up and about to head back over.

Shortly before Georgine and Hailee arrive back at the hospital the lab tech comes in to take several tubes of blood, Caitlyn of course is nervous as heck due to her fear of needles (she even had to cover up the heplock while it was in). I think I am up to $60 in iTunes cards at this point (later on we went to arbitration with Caitlyn securing a pair of uggs and some iTunes cards, I got off easy). Slowly, resident after resident come into the room along with another doctor from the oncology group. Where is your pain? She still hasn’t had any or at least nothing noticeable to this point.

The rest of Sunday the 28th of December 2008 was filled with CAT scans and MRI’s. I think we maybe finished 2 tests as the MRI was delayed due to emergency patients being flown in one after the other. It seemed like the helicopter pad didn’t stop that day.

Caitlyn was tired by 5 PM and it seemed like the visitor’s didn’t stop this day understandably but some people who I never met before came and I asked them to leave, a friend of a friend is great but now wasn’t the time for me to be dealing with that and besides Caitlyn didn’t want them there to begin with. Understandably Caitlyn is confused about what is going on and doesn’t want the wrong thing getting around.

At some point during the evening hours after my sister had already gone home I had talked to her on the phone again (please note I think this is how it happened but can’t be sure). Not sure and I may be wrong about this but I believe it was explained to me during this conversation that a benign tumor doesn’t normally spread. Knowing that Caitlyn has several at this point it sunk in that what we were dealing with was cancer at least to me at this point. The only question was what type in my mind at that point and I was leaning towards ovarian based on what the doctors were saying and what lead us to the initial CAT scan. Hindsight is 20 / 20 and looking back on that now knowing that Caitlyn has advanced FHC I would accept ovarian cancer with open arms at this point.

Anyway back to the time line, the crowd disperses and the rest of the family heads back to the hotel leaving me and Caitlyn to talk once again. This night the questions became a bit more serious. Do I have a tumor and is it cancer? How do you answer that to a 14 year old girl who 3 days earlier, the only care in the world was which Christmas present to open first? This was the first conversation where I told Caitlyn that all she had to do was “FIGHT”. By the time I talked her to sleep she knew I would never leave her (same goes for her mother) and also knew we wouldn’t do anything to hurt her.

Sometime after she fell asleep I went outside and called the hotel room after I broke down. I then called Deb who was thrown into running my online businesses and tried to help her help me, it wasn’t working as i could not concentrate on business but thankfully she stepped up to the plate and took care of things.

Monday arrives and the same routine starts all over again, blood work then tests, CAT scans and MRI’s. Today was to be the upper portion head and chest as well as a bone scan (boy is that like watching grass grow).

The chest CAT scan wasn’t able to be performed as she needed to take a medicine to prevent a reaction to the contrast that was not given so tomorrow would be a day for that.

A few events happened today, Adam Graves (former NY Ranger) came to visit at the hospital. Both Caitlyn and Hailee didn’t think much of it because they don’t follow hockey and neither do I but my sister happened to be there and the four of them happened to be going to the game that night at the garden. This made my nephews day!

Next, a good friend of mine came to visit and brought Christmas presents that we hadn’t exchanged yet to the hospital. No big deal but Hailee received something that she already had. What happened later on was a great inspiration from a 9 year old. The hospital has a program called “Child Life” who run the activities such as arts and crafts for the kids as well as they distribute donated gifts to all the patients. Today they brought in stuff for both Caitlyn and Hailee, makeup for Caitlyn and a game for Hailee. Later on in the day Hailee told her mother that she would like to donate that gift she received because she already had one. Sometimes they surprise us in selfless ways! A few days later she did exactly that, walked the gift down to the “Child life” office and donated it.

The last event of the day was we started to have symptoms. INR was elevated as well as her ammonia level. Treatments were to monitor the ammonia level as it wasn’t at a level to treat yet but was above 100 (normal is said to be below 50) and to treat the clotting factor in the INR Caitlyn was given 2 units of frozen plasma with benadryl on Tuesday. Needless to say, Caitlyn spent most of the evening asleep as well as the overnight on Tuesday after the last CAT scan was performed.

Both Monday and Tuesday nights we did the same routine. I would setup the laptop facing her and we talked until she fell asleep. The questions remained and I just kept telling her the only thing she needs to do is “FIGHT”.

New Year’s eve was a calm day. The only test left to complete was the biopsy tentatively for Friday the 2nd. Caitlyn’s worst fear was for surgery. More labs done today and the ups and downs of her ammonia level was in full swing, up to 140 on this day if I recall correctly. The visitors seemed to slow today and were more spread out thankfully. Our cell phones never stopped.

We did meet with the liver surgeon who would perform the biopsy and Caitlyn grilled him with questions of her own. The night was finished off watching The Jonus Brothers perform at the New Year’s celebration in NYC. It isn’t a long stretch to figure out what my resolution is for this year, it is all I can do and I will never stop doing it.

To be continued….