Friday, October 14, 2005

Meeting with clinical trial nurse

I met with the clinical trial nurse today, just to go over a few more things and finalise the details ready for Monday. Dylan was weighed at 16.5kg and his height was also measured at 116cm. His trial schedule is Monday 7:30am-5pm where he will have his medi port accessed for the first time to deliver the medication, he will also have an IV put into his hand or arm to draw multiple blood tests during the treatment for the day. He will have the chemo Irinotecan for 1 hour, then wait and hour, then have the Cetuximab antibody for an hour. This will continue for 2 weeks straight, but the antibody will only be delivered on 3 Mondays and the IV in the hand will only be for the first Monday. He will then have a 1 week break, then start again for 2 weeks, then have scans on the 6th week to see if it did anything. If it works, then he will have more cycles. If it does not work, then we will try another trial, possibly being the MIBG treatment. Dylan had his MIBG injection this afternoon, ready for tomorrow’s scan. I saw the radiologist that had read Dylan’s bone scan and asked him if his bone scan was clear does that mean his MIBG scan may also be clear. He explained that the bone scan shows any bone activity. He said that MIBG is much more accurate and the preferred scan for neuroblastoma. He said Dylan may have improved, but it may also be that what is showing in the MIBG scan may be too deep inside to show on the bone scan. He indicated that having a clear bone scan usually means there is no new disease activity in the bone, so that’s a good thing. Only time will tell, I hope I get the results of tomorrows MIBG scan back by at least Tuesday. I am not getting my hopes up, just taking it with a grain of salt and expecting no change so I don’t get myself disappointed.

I have to share with you what Dylan said to me late last night while laying in bed. We were talking about his scans and his new trial and he stopped me and said “I know when it happened mom” I asked when what happened? He said “When God took my cancer away” I said, you do? When? He said “When we were in the airplane” I asked was it when we were on the way to Disney? And he said “No, when we were just about to land in New York on the way back from Disney, when the storm happened” I asked how did he know that? And he said “Cause I was wanting so much for my cancer to be better” Of course, after kissing him goodnight I then rolled over and cried myself silently to sleep.