Dylan did fantastic through the night after surgery, pain relief was only needed yesterday morning and by afternoon he was running around playing as usual. He was holding his neck a bit stiff yesterday but today he is completely back to his old self. An ECHO was done on his heart yesterday in preparation for the MIBG study and today he also had a CT scan. I signed the consent forms for the 04-148A protocol today with Dr Modak and also picked up the medication needed to protect Dylan’s thyroid throughout the study. Today Dylan commenced Oral Liothyronine sodium, at the dose of 2 tablets daily to continue for 21 days. He also started SSKI drops (potassium iodide) at the dose of 5 drops 3 times a day for 42 days. Tomorrow we meet with Dr LaQuaglia for a post operative consultation and then we will speak with the radiation safety team who will explain to me about the safety measures required during Dylan’s MIBG therapy. Dylan will have a thyroid blood test on Monday and then we will be admitted into the hospital ward on Tuesday in preparation for the MIBG to be administered on Wednesday. Dr Modak explained that depending on his radioactive levels, we might be discharged by Friday. During the admission period, Dylan will not be allowed any visitors and be extremely limited as what he can take in the room with him. After I speak with the safety team tomorrow, I will have a better understanding of exactly what procedures will be in place during the period of time that Dylan will be “radioactive”. From what I have heard already, I will be allowed to stay with him but behind a lead wall and with limited contact (no cuddling or playing) just the bare minimum of contact like helping him dress and eat. I will also have to wear a monitor to read the amount of radioactivity I will be exposed to. I doubt that I will be able to take in any electrical devices such as the computer, cell phone, game boy or ipod because they would have to be destroyed if they carry any measures of radioactivity after been exposed to the room. This will be a very stressful time for Dylan and I, but it is only for 4-5 days. The following Monday will involve commencing the arsenic treatment, which will continue everyday, Monday through Friday for 2 weeks. Approx 2 weeks after the arsenic treatment, Dylan will have another MIBG scan and that will complete the protocol. To read more about the 04-148A Protocol click HERE The full documentary is now on the NKU website and can be viewed in 4 parts HERE
