Well, I need to finish this and get to the hospital to hear how many rounds of the hallways Gideon did today and how many stairs he climbed. They’re very interested in how many stairs we have in our house, and the answer is: a lot. But we’ll manage.
Thought I’d use today’s post (which was supposed to be Friday, June 6, but is being posted on Sunday, June 8) for a fuller description of Gideon’s cancer, so if you’re not all that interested feel free to skip this. He’s on his second full day at Spalding (as of Friday), and they’re working him hard. I’ll leave in an hour or so to spend later afternoon and most of the evening with him, along with Jim. His wonderful, wonderful grandparents will probably be there too. People have been so great about visiting. The look on the aide’s face one evening when she peered in the door and saw six of us sitting around Gideon’s bed was just priceless. Visiting once is great, and we appreciate so much those who have done that. Visiting regularly is even greater. Thank you, one and all.So Gideon’s lymphoma is non-Hodgkin anaplastic large T cell, Alk 1 positive, CD 30 but no CD 20. I’ll translate that a little bit, but first will say that I had no idea what lymphoma actually was until this tree fell across our path. I hate to say it, but in my former ignorance I thought of it as something not all that serious, when it’s actually a cancer of the blood, in the same horrible family as leukemia. Whereas leukemia affects the leukocytes, or white blood cells, lymphoma affects the lymphocytes, which are produced by the lymph glands. Gideon’s case is Stage IV, meaning that the tumors have migrated outside of the lymph nodes themselves. I wished I hadn’t asked about his stage after I was given that information. But it’s confined to the bone and hasn’t spread to any organs. Gideon thought at first when he was told that he had tumors in several places on his spine that it was all over for him, as he interpreted that to mean that the cancer had metastasized. As it is, though, his prognosis is good. The “Alk 1 positive” refers to a certain protein on the surface of the tumor which is very responsive to one of the new chemotherapy drugs, so Gideon is going to have the standard CHOP chemo protocol, but will probably have the O drug (which is very toxic and has high side effects) replaced with this new one. That’s the plan, anyway. Apparently this type of lymphoma is very rare, with only about 5% of non-Hodgkin lymphoma and 1% of lymphoma overall. The “Alk 1 negative” form is much more lethal, with only a 15-45% recovery rate, while the positive form is 60-80%. That’s not 100%, of course, but we’re thankful to have the success percentage that high. It’s very strange: in our small church there have now been three cases of lymphoma, including Gideon’s, in the past five years. Plus, my nephew Cody’s wife, Katie, had a bout with it in 2009-2010. One man in our church, a husband and father of two, died. The other case, a young man about Gideon’s age at the time, had to have a bone marrow transplant, spent weeks living in a special apartment with only his parents allowed to be around him, and is now doing fine. Katie is doing great and just had a baby in February. (They named him Jaxon. Isn’t that just the cutest name? I call him Jaxon the Saxon.) Gideon has four more radiation treatments to his upper back area and six more in the lower back, with each area being treated once a day during weekdays. That puts him at Thursday, June 12, for his last upper treatment and Monday, June 16, for the lower back At that point they’ll do an MRI to see how much the tumors have shrunk and how well the vertebrae are healing, and I assume that they’ll decide at that point when they’ll start chemo. Jim meticulously recorded that Gideon will have six chemo treatments at three-week intervals, which takes us into late October if they start it right away. It’s going to be a long slog.