Family's together!!

We talked with Dr. Gajjar about the clinical study and signed all the necessary consent forms. There was only one study that he thought was a good fit. We talked about the others that I had read about on line, and he was willing to make any phone calls necessary to try anything. Some would have required us to leave St. Jude’s, so we decided to go with the one study that we were eligible for here. He reiterated over and over again, that it IS just a study. It is in Phase II, and they have the dosing right, but haven’t seen an overwhelming response to the patients in Phase I. We’re giving it a shot anyway, and hoping and praying that with the radiation, we will be granted a miracle.

Today Sophie was sedated again for 2 hours so they could do what was called the radiation simulation. Today was the first time she was pretty cooperative for the access to her port. She realized that even though it looks scary, the numbing cream really does work, so it’s not painful. We’ve had the hospital staff remove the needle each time it’s been used so far because we want her to be able to take a bath (especially after those frequent bedwettings which we are still dealing with). The simulation required yet another CT scan and MRI, and a casting/mold of her face. They took measurements and marked the spot(s) were the radiation will be concentrated. The mold will be used to fit her with a mask that she’ll wear during each treatment. Once radiation begins, the actual treatment will take about 20 minutes a day for 6 or so weeks, but because she will need to be sedated, it will be about an hour and a half procedure each day.

Sophie has been taking most of the appointments in stride. We have been honest with her regarding the schedule for the day, and she is much more cooperative when it’s just a consult, and we can tell her that we’re just going “to talk” to the doctor and there will be “no pokes.” Believe me, when we tell her that there will be pokes, she is pretty resistant, and asks, “Can we please just go to the cafeteria?”

We look forward to a week end without appointments, and are glad that our family has arrived. It is a tremendous support to have them here, and of course we were very excited to see Baby Sarah again. We are holding on; some days it is harder than others to remain hopeful, and we find our thoughts wandering. But then it must be the power of your prayers which gives us a glimmer of hope and a continued focus. Thanks again for your thoughts and prayers. Sophie is our little angel and we believe your prayers will deliver a miracle.