Archive for February, 2009

Less than a day after sending off the results to Johns Hopkins I was able to speak to the department head there on Caitlyn’s plan for treatment. At the same time, Kathleen pulled some strings and we were able to have the team at Mount Sinai hospital in NY review the same results, my brother in law Jim hand delivered them there earlier that morning.

Speaking to the doctor at Johns Hopkins was helpful to me in many ways. He explained how she is too far along at this time to do any kind of resection or debulking. He explained how doing anything at this time would run the risk of speeding up the process and I agreed based on the effect the biopsy had on Caitlyn even though that was minor compared to what she needs to undergo in terms of surgery. He did mention contacting a specific oncologist at Sloan Kettering which I attempted to do as soon as I got off the phone with him.

A little while later after speaking to that doctors office I relayed the info to Caitlyn’s doctor and she was trying to contact him as well. A short while after that Kathleen received an email back from Mount Sinai with the same basic answers as Johns Hopkins but what is ironic is they recommended to speak with the same doctor at Sloan. I am going to jump forward here for a second to complete about this doctor at Sloan. So I am stressed at this point because for whatever reason this doctor didn’t call back after several conversations by several people to his office. As it turns out he left for a conference the next day and it took another call from me a week later to his office to get him to return a call to Caitlyn’s doctor. The end result was he couldn’t agree with Caitlyn’s doctor more in terms of the plan for treatment.

Earlier today, Tuesday, Caitlyn had her Make a Wish interview. Submitted into the program on the 9th, approved on the 12th and the interview on the 13th. Not to shabby in turn around time. This was a process let me tell you. Finally something put a smile on Caitlyn’s face as well as mine to see her smile. They came bearing Jonas Brother’s gifts as well, a calender, book and poster. I found it interesting how they determine a child’s one true wish LOL. They ask a wide range of questions and then pair the answers against each other. At one point Caitlyn was stuck on a choice when Hawaii and Disney world came up together to choose. I suggested another shuffle and she was allowed to do so. The very next one came up with Hawaii against meeting the Jonas Brother’s. Hawaii went out the door at that point LOL. At one point something was asked and explained how they don’t consider what the family wants the wish to be. Doesn’t matter as whatever Caitlyn wanted was fine with us and we have only one wish, a cure would be all we need.

Caitlyn continues with school 2 hours a day in the hospital and has pretty much settled in to where she is at this point. Still, being able to go home would pretty much help all of us at this point. By Wednesday the doctor determined the protocol for treatment and was acquiring the drug Sorafenib to be administered that evening. I must say this is not something you can just take a prescription to your local pharmacy to get. It comes from special pharmacy’s and even they give you the feeling that they are looking at you funny when you mention it. As the doctor is explaining the protocol to us the social worker steps into the meeting to tell us Caitlyn’s true wish has been approved. She had 2 choices on the dates to meet the Jonas Brother’s, one being at Atlantis in the Bahamas and the other in San Juan PR. Even the doctor’s eyes lit up with Atlantis but it was up to Caitlyn to decide. Thankfully the date for Atlantis was before the one in San Juan LOL. More good news, we discussed when she would be able to go home and received an answer. As long as she tolerated the medication good Saturday looked good for a release date.

Three days and we would be home, I left to go home later that evening to get some work done and make an appointment to have my right shoulder tattooed with the “FIGHT” and the phoenix that you see in this blogs logo, that was set for Sunday coming.

Arriving at home I noticed the house appeared cold so I went and checked the oil burner. Has oil but the house is cold, this sounds expensive and I don’t have the time to be messing around with it myself so I called our oil company to send out a tech. I explained how and why I couldn’t take a chance with not having heat so he quoted me a price and was to come Thursday to do the repairs, $550 later grrr. Jumping forward again, a month later I am into it for triple that as you fix one thing something else goes bad double grrr. An hour later I was headed back down to the hospital to help pack for the return home.

9 PM Wednesday Jan 13th Caitlyn took her first 200mg pill of Sorafenib, no food for an hour before and after. The same the next morning, no food an hour before or after 9 AM as she takes this twice a day. She was started out on a lower dosage Wednesday and Thursday to see how she tolerated this. 600mg a day was protocol so 1 pill in the morning and 2 at night would be the final dosage which she was increased to on that Friday. No diverse reaction after 24 hours and the doctor moved up her release date to Friday. Lucky me the heat was fixed on Thursday LOL. Jump for joy were outta here soon. time to start bringing home the baggage, 2 car loads Thursday night and I was given a ride back down to the hospital from Stuart so we could all travel together on Friday.

This was like trying to move a studio apartment, we had accumulated quite a bit of stuff in 3 weeks time at the hospital. I never imagined the logistics involved being this difficult but it is what it is considering the bag of medication and treatment book we call the bible, everything is in that binder including phone numbers and information about Caitlyn’s meds.

Friday morning we saw all the doctors and nurses before she was discharged. I have to say, all of us take with us strong relationships with everyone involved with Caitlyn’s care as well as some families we sat and talked with who had children in the arts section. Quality care is what we received and words can’t say enough about it other than to say thank you!!!!

By noon on Friday we were home. It was as if time stood still arriving home with the Christmas tree still up. It’s hard to describe but coming home was almost a feeling as if being lost.

To be continued…