Saturday, January 27, 2007

we have lift off!

Yesterday we spent 10 hours at NIH getting consents signed and getting the Avastin and CPT infusions. The day was very long, but everything went great! The nurses were able to get good blood lines, quick urine samples, and the infusions caused no problems! So far, Sean has yet to experience any of the side effects of the CPT, which is awesome (diarrhea and vomiting did not sound like something that would be friendly to a person with limited mobility)! So we have enjoyed a day of rest after our day out yesterday. We are in the process of lining up a home care nurse to come in and help out, make sure that we are doing everything right, and give any additional ideas on how to make life easier. We are also going to have a physical therapist come in and help do some patterning exercises with Sean and get him moving again. So there are quite a few things on the horizon and we are looking forward to moving on and making some progress. Thanks to everyone for being so understanding, sorry for any of the calls that have not been returned, or returned late, and updates being scattered. We are trying to create some sort of balance in our lives, which has been challenging, but I think that we are making improvements everyday and making it work for us!

Saturday, January 20, 2007

new tests and trials

I have never really felt as though God was testing my strength and will, however, a new day has dawned and this is like the final exam! Yesterday was Sean's monthly appointment at NIH with Dr. Fine. The morning started well, but then getting Sean to the car and in the car was quite a challenge. I hadn't realized just how difficult it was going to be for Sean to get out of the house until we tried it. The steps were a problem, but getting into the car was an even bigger problem! Finally, some of the neighbors came out and lent us a hand and it worked like a charm. So after that the rest of the day went off without a problem. Dr. Fine says that the MRI showed more growth in both the cerebellum and the brain stem, however, after looking at the scans (which came from two different scanners and were two different sets of pictures) I couldn't see much change. Either way, the docs feel as though the Avastin has begun to flatline so they are going to put Sean on a "new" trial. This next step will be adding a drug, called CPT-11 to the Avastin treatment as a sort of piggy back drug. This new drug will go in and keep the tumor cells from reproducing now that the Avastin has cut-off the blood supply to the tumor. The combination of these drugs has worked great with colon cancer and Dr. Fine has said that they have had good results with the combination in brain tumor patients. So Sean will start the new protocol next week. The hardest part of this is that he isn't really suffering any tumor symptoms, all of his problems are steroid related. He is now down to only .25 mg of steroids per day. Our next step is to get a physical therapist to come in and help us figure out some low-key exercises Sean can do to build up his strength and help me learn some ways to help Sean move around more efficiently. So that is where we are heading. Being home, as sad as it was to leave school, will be wonderful. Actually, I am looking forward to the challenges that await us, overcoming those challenges together, and reaping the rewards when it's all behind us!

Thursday, January 18, 2007

last day

Well today was my official last day of work. It has definitely been a bittersweet day. The kids had a really rough time today with myself and the new teacher being there, they gave me such a hard time that it made it kinda easy to leave at the end of the day! However, saying "see ya later" to my teammates was very difficult! They were super sweet and we have made plans to go out to dinner soon! Everyone has made this transition so easy, it has been wonderful! I am definitely going to miss everyone a whole lot, but I will be going back to visit. On the other side of things, I am looking forward to being home with Sean and Brutus everyday and taking care of things at home. I am also hoping to get some scrapping time and definitely looking forward to starting and finishing a lot of projects around the house. So tomorrow is Sean's appointment with Dr. Fine at NIH and we are looking forward to what they have to say about his current state. We are hoping that we can get in touch with a physical therapist to come in and do some work for Sean and show me some ways to help him move around more easily, but we will see what they have to say tomorrow. Well I guess we will be updating again tomorrow or Saturday morning. Hope everyone is doing well.

Sunday, January 07, 2007

Happy New Year!


Welcome 2007! Okay, so I am a few days behind, but it has been a little crazy at the Carabine's during this first week of the the new year. Sean, Brutus, and I welcomed the new year very quietly this year, hanging out at our house watching Love Actually and the ball dropping, reminiscing about our days in Times Square! It is so hard to believe that yet another new year is here. We are looking forward to all of the challenges and blessings that this year will bring us.


Here it is the first week of 2007, and we have already faced our first challenge. Sean is coming down off of the steroids because the tumor is stable and the steroids are no longer needed...or so we think. He is taking .5 mg/day which is a very low dose, but it has really taken a toll on his body and functionality. He has limited mobility and his energy level is extremely low. (Here is where I place my disclaimer: Sean's tumor is not causing any of these problems! The symptoms he is experiencing are somehow related to the steroids. We are thinking that the steroids may have messed up the body's natural production of something, but we haven't quite pegged it yet.) That said, after a lot of hemming and hawing, Sean and I decided that it would be best for both of us if I resign from my teaching position to stay home and take care of hubby. So my last day of work will be January 18th and then I will be home to make sure Sean is taking care of himself everyday! So right away our new year is starting off with some major changes. We do want to thank everyone for being super supportive and understanding, it has made all the difference in the world!


As if that wasn't enough to consume our week, Sean somehow ended up with Pink Eye, in both eyes! So we have spent the week trying to get rid of that, and trying to keep me from getting it. But this morning everything looks pretty clear, so we are thrilled about that!


Well, that is all I have for now, but seeing how this year has already started off exciting, I expect that I will be updating more frequently.