Today was our first full day at St Jude. We were very nervous because I knew today would be the day we would meet all of his doctors and nurses. The people that will be with us through this whole process. The people that will save his life.
I am grateful that they start from the beginning at St. Jude. Meaning they do all of their own tests and will redo any tests that were already done just to verify results. So once again I repeated how it all began, in the morning before school, with a seizure, yes he had been healthy up until then, and on and on. I’ve said that story so many times I don’t even cry anymore. But I am grateful that they want to get to know us and know the whole story, from the beginning.
His main doctor came in the room. He’s the specialist in AT/RT and the whole reason we chose St. Jude so meeting him in person was emotional but also a relief. He was wonderful. He said a lot of things that were hard to hear but I walked away with the one thing I needed that I hadn’t really heard before “we have hope” he said. And I lost it. Because there was a moment we weren’t so sure. AT/RT is very aggressive and survival rates aren’t high, but “we have hope” is what I took away from that meeting. Its all I needed.
We had many assessments and Caleb was a little nervous at first. Tyler offered to hold his hand when he had to get up on the table. Caleb was comforted and was so brave the entire day. His favorite appointment of the day was physical therapy. He walked in the room and saw that they had a bin of Bowling pins and he lit up. So the PT told him to set up all the bowling pins, and then let him kick the soccer ball to knock them all down. He couldn’t believe how strong he is. He threw balls at a target on the wall too and hit it every time. We are grateful that he is so strong starting this whole process.
We finished up all our appointments in the early afternoon. I never thought I could be so exhausted just going to doctors appointments but we all went back to the room and took a nap. It’s an emotionally draining process more than anything. We are still wondering why we are here and why all of this is happening.
Overall we are happy with our choice and feel 100% that we made the right decision but coming here, but it doesn’t make it any easier. I still would give anything to return to the normal life we had 2.5 weeks ago. But I know once we settle into more permanent housing we will start to find our new routine here. Our “new normal” won’t be easy but as long as we are together as a family we will make it through.