Its been a long few weeks!

As you know, we went to see Shane's oncologist at the beginning of the month. At that time, Shane had completed his scans and gotten preliminary results back from his GP. When we went to see the oncologist, she had not read his scans. We were told that she was going to review his scans and submit them to the drug company that conducts the clinical trial. I was to call her the following Friday and find out what the next step was. Also at the appointment, Shane had blood work done to follow up on his thyroid levels and measure the calcitonin in his blood, this is the marker for his cancer.
Right on time, I called the doctor's office and left a message with her secretary relaying the information the doctor had told me to say. A few hours passed and no phone call back, as 5:00 approached on Friday, I called again. The secretary told me that she emailed the doctor all of her messages and that she would get back to me.
That was our last contact with Shane's oncologist. I guess I should say her office. It is unfathomable to me that a Dr, an oncologist no less, has so little respect for a patient and his life. Granted Shane's cancer is slow growing, and we are so very grateful for that, but it is still growing. We are living with this every single day for the rest of our lives, it is not going away. I wanted to continue to call her, but Shane said no, he had completely lost faith in her. Not only because of this but because of past situations as well. We trusted her with his life and she can't bother to call us back...
So needless to say these last few weeks have been very difficult for us! I felt like we were in limbo. What were we going to do, the doctor we had was not calling us back and now we need to find another doctor. We immediately thought of the doctor we had me at Johns Hopkins. I called his office and his assistant said that Thursdays were his call days and if we didn't hear form him on the first Thurs, then he would call us on the next Thurs. Ofcourse he didn't call us that first week, it was torturous! The not knowing anything was really getting to me. The following week, I called his assistant again giving her a nice little nudge. Thursday came and went without a phone call. By this time I was starting to lose faith, but my husband, got on the phone and called the assistant himself and and told her that he needed this Dr to call him because his life depended on it. So, at 4:45 on Fri afternoon, we received a phone call from the Johns Hopkins Dr. He is willing to take Shane on as a patient! He is also running the clinical trial that the other Dr had at Penn as well as a different trial he is working on. This new Dr happens to be one of the best when it comes to Thyroid Cancers, so I feel very comfortable that we are moving in a positive direction. It is just a shame that we had to endure what was dished out at us through Penn. But now onto greener pastures. We have an appointment in the middle of March and we will take it from there.
As for the kids, today we went to CHOP. They both met with the endocrinologist and Dani had her follow up with the ent. Ethan's thyroid level is a little high, so he needs a med adjustment, otherwise he is doing great! He didn't even cry during blood work, so proud. Dani had blood work today to measure any calcitonin level, which we do not believe there will be. We have scheduled an ultrasound in April and her surgery is scheduled for May 17th.
It has been a very long, emotionally charged month for us. Hopefully now we can relax a bit before we go to Baltimore and then head into the spring for Dani's surgery. Thank you all for your support!

Last week, Shane went for his 3 month scans.

When the report came back, it said that there was some growth on the left side of Shane's upper chest and arm pit. Obviously we were concerned. Today we to Penn and met with his oncologist. First of all, she had not read his CT scans only the report. I told her we were not happy with that and questioned why she never reads the scans when we come see her, as I always send them down to her prior to our visit. She gave us some excuse as to most patients usually bring scans to their appointments, and I told her we are not most patients. I hope she got the hint that she better have the scans read from here on out when we come down for future visits.

Anyway, as I said she did read the report and was not very concerned with Shane's growth. The one tumor that grew the most was under his left armpit and that is not a dangerous part of the body. So now the doctor is going to compare the scans to the scans taken in October and his initial scans from 2008 and see if she thinks there is a 20% growth. If she feels that there is 20% then she will submit the scans to the drug company that is conducting the clinical drug trial. They are the ones that make the final decision. So now we wait again. We will not know anything more until the end of next week the earliest. Just a little update.
Until then...