Today we have had many conversations with doctors. Here is a rundown of what we have learned and where we are going with Grant.
He was diagnosed with embryonal rhabdomyosarcoma. How's that for a mouthful? They have classified him as stage 1 group 1 (I think it's "group"). There are lots of details to our conversation I'm not going to outline here, but basically the next step is to have the enlarged lymph node in his abdomen removed and dissected (transected?). There are not a lot of places to have this done and our urologists recommendation, where she said she would take her child if it was her, is the Mayo Clinic in Rochester, Minnesota. We went from planning a visit to UVA next Wednesday to discuss paths forward to planning to be in Rochester next week for this operation. We spoke with the urologist at Mayo Clinic and felt comfortable with her. She is very experienced with this operation which she performs with another doctor. And, they are both in our insurance network...miracle! One less thing to deal with.
After the operation, they plan on a couple days of recovery so that will be most of the week. Kim's sister, Heather, is planning on coming out and being with our other kiddos during the week. Again, a miracle to have such willing, ready support--comes from being part of such a wonderful family. Thank you, Heather. The next steps will involve chemotherapy (almost certain) and possibly radiation both of which can be done at UVA.
We just got off the phone with the oncologist for an hour. She was very kind and helpful in giving direction, answering questions, asked and anticipated, and clearing up some misconceptions. She said the good news is that this type of cancer is treatable and curable with a fairly high success rate. The chemo drugs typical to this treatment are quite toxic and have a laundry list of nasty side effects so the road will be tough, but the road has a high potential to exit into long-term success.
One of our primary concerns since we found out Grant's condition is how our other children would handle it. After I got home from work, we sat down with Ellen and James and explained Grant's situation to them. It led to some tearful and tender conversations. I gave each of them a priesthood blessing, again more tears, but sweet experiences. Then we had Ava and Clara come in and we explained in somewhat simpler terms the same thing. Slightly different reactions but still tender. Then we brought Grant into our room. After explaining to him, he looked off into space and said, "I wish we lived in a house made of jell-o." That's a pretty accurate depiction of how he is handling this. He doesn't really understand and perhaps that is for the best. Chemo treatments likely will be a weekly thing for him, so he will learn soon enough.
We are eternally grateful to all of you for your love, prayers, and everything else. We know many of you sincerely wish you could do more and thank you for that. Know that we love you and feel the love from all of you. Prayer is real. We also invite you all to join us in a fast for the little guy this weekend. Feel free to reach out if you have other questions. I didn't cover all the details but tried to give the general picture.
Ben, Kim, Ellen, James, Ava, Clara, Grant, and Sam.