Sunday, July 16, 2006

Heat Wave

Today was very hot in New York, Dylan and the rest of the RMDH children had lots of fun playing out on the 3rd floor terrace in a small pool and with water balloons. It was too hot to go out anywhere. I met with the radiation team last week and they explained a little more about the MIBG therapy precautions. Dylan will be admitted on Tuesday morning and in preparation for the therapy, he will have to have a urinary catheter placed as he cannot have the MIBG isotope sitting in his bladder for any length of time. This will remain in place until he is discharged, which will either be Friday or Saturday depending on how quickly the radiation levels go down. I will be allowed in the room, but with two lead screens separating us. I am to have as least contact as possible with him, so I am only allowed to touch him if absolutely necessary, like assisting him with something like dressing or eating. I will have a small beeper type monitor pinned to me which will indicate the amount of radiation I am exposed to. Preferably they do not want me to stay during the night, unless Dylan protests too greatly. To my surprise after mentioning this to Dylan, he said he is fine with me leaving after he falls asleep and for me to return in the morning. This may be fine with Dylan, but it will be very strange for me to be at the RMDH without him, the doctor didn’t mention about a parents protest! I keep telling myself and Dylan that this is only for 3 days, we can do it, it won’t be as bad as we think. I was happy to hear that they will allow Dylan to have his ipod with him and it will not have to be destroyed afterwards. Dylan had a smile from ear to ear when he heard that. Most children have a special blanket or a cuddly toy, well Dylan has his green ipod mini, he spends every night falling asleep to his favorite songs. The best part is Dylan is unlikely to have any side effects, so at least he will feel well. Dylan is coping well with taking his new medications for this therapy, potassium, magnesium, Loperamide, Liothyronine sodium and iodide (sski drops). Tomorrow we head into clinic for a blood test and for his medi port to be accessed, then Tuesday morning he will be admitted. I will try and update during the week to let everyone know how he does. Thank you again for all the wonderful supportive messages left in Dylan’s guest book, you give us a tower of strength.