May 22nd - Toronto Visit.

Had an appointment in Toronto yesterday. Mel and I left at 330 am to arrive for the 1045 appointment time. We had a fairly good trip up, stopped a few times for coffee for Mel and tea for me and a 730 am muffin breakfast. We hit Toronto at about 8 am and sat in traffic barely moving for the last 18 km. Took us 2 and a half hours to go the remainder of the distance. We arrived to a very packed clinic at 1030 am and registered for my appointment. We then sat in the big waiting room and didn't get called in until 1230. Then we sat in the smaller waiting room for another 45 minutes before someone came to speak to us. We saw Dr. Gupta who is the medical oncologist that has been guiding Dr. Nicholas on the chemo protocol that I have been on. She said my scans only show tumor stability and that the chemo has not done anything. She believes that my tumor is chemo resistant and doesn't understand why because the only other two cases that they had of adult neuroblastoma in the past 10 years were extremely responsive to the chemo. So therefore, chemo is being discontinued. To me, that is great news. Chemo has been very harsh on me. I've spent 90% of the last 3 months either hugging the toilet or hospitalized. Dr. Catton the radiation oncologist was also in the room and told me that I was very "unique". I asked him not to use that word as it's not a good thing to hear in this particular case. I don't want to be unique. I WANT TO BE CURED... Afterwards, Dr. Catton proceeded to explain that they have high hopes that the tumor will respond well to radiation therapy. And spent the next ten minutes trying to convince me to do the radiation therapy in Toronto, which would be half hour rounds daily, Monday to Friday for 28 days. I explained to him that I don't have the finances to spend a total of 5 and a half weeks in Toronto and I don't want to be away from my husband and children for that long. He finally agreed to find someone in Ottawa and work with them and have the radiation done down here in Ottawa. So within the next two weeks radiation should be started in Ottawa. Following the radiation I will get a 4 to 6 week break and then finally surgery. They are saying sometime near the end of August, beginning of September. Hopefully the plans stays. We ended up eating in the little cafe at the hospital and then leaving Toronto at 130 pm and drove back with fairly no traffic. Stopped once at Burger King cuz I was craving a whopper. And stopped for gas. Got home fairly late in the evening and tried to relax. I feel some disappointment towards the whole appointment because I spent a lot of money and time to go up there, with not the best of strengths as I am still recovering from my hospital stay and am still on antibiotics. I didn't even get an exam or anything while I was there and felt that the doctor's were rushed and I didn't get the answers I went up there for. A 13 hour total drive there and back for a 15 minute appointment that in my opinion, could have been done over the phone... I am seeing Dr. Nicholas on Monday and want to mention to him that it was a very hard and expensive trip to make for a 15 minute conversation. Maybe they will consider that before sending me up to Toronto again?  I am going to post in the neuroblastoma support forum and start asking questions about chemo resistance and what they found the next steps were. I've met 2 or 3 adults in the forum that have had adult neuroblastoma as well. Maybe, they will have some answers.

With hope,
Priscilla