Just a quick note to let everyone know that since the weekend I have had no phone in our room at the Ronald McDonald House, which also means I have no internet access. It's driving me crazy. I even went and bought a special wireless card for my laptop but even that won't pick up the wireless signal. No one seems to know how long it will be before I can get a phone line, so for now, please forgive me if I do not reply to your emails. It is difficult to use the computer room down stairs as Dylan refuses to sit with me and when he lets me go down, it is usually closed.
Dylan had a bone scan on Monday and is scheduled for an MIBG scan on Saturday after having the MIBG injection on Friday. The doctor has contacted CHOP to start the process of MIBG treatment there. The doctor said that if this scan shows no disease progression, he would like Dylan to enter one of two phase 1 clinical trials. One is 3F8 mixed with another drug and the other is Irinotecan for 2 weeks with another drug given on day 1 and day 8. I am not sure of the details yet. If however, Dylan's scans show disease progression, then he advises us to have MIBG at CHOP as soon as we can get an appointment date. The reason he would prefer the clinical trials verses MIBG is because the MIBG will require a stem cell rescue and Dylan may be left with counts too low for any other type of treatment for 8 weeks. Anyway, we will have a better idea as to what lies ahead by Monday, when we get these scan results back.
It is pouring with rain here in New York and it is supposed to continue all week. I am trying desperately to obtain a rain coat and rain boots, I think I will attempt to leave Dylan with one of the other moms while I head to K-Mart or something...I hope they sell them, wish me luck!