Turns out there’s an endless variety of ways I can butcher the word “scan.”
So, as those of you on Facebook know, yesterday’s scan was almost as good as we’d hoped it would be. I say “almost” because, while Ana’s tumors remained stable (hooray!) they are still there. One of the larger tumors showed less metabolic activity (can I get another yay!) but one showed slightly more, which is kind of baffling and conflicting – but those two words describe every step of the processs with this disease anyway, so I’m going to choose to ignore the doubt this casts in my mind.
So…NEXT STEPS. I expressed some concern over the fact that Ana’s had four PET/CTs in the span of four months. Just to give you an idea how much radiation this involves – or rather – how seriously they take the amount of radiation involved with this test – the PET/CT suite is NINE FLOORS DOWN in a building that is not actually connected to (or anywhere near) the children’s hospital. Also, I noticed yesterday that when they went to get the stuff to inject into Ana’s IV, it wasn’t in a nice shiny clear syringe, but it was encased in a lead capsule which was then attached to a syringe. The capsule was housed within a metal box which was further removed from another metal box. Someone had written “Have a great day!” on the last box. I almost took a picture, but I think the nurse already thought I was weird based on the questions I was asking the director of the place. (she’d wandered in to say hello at this point – or maybe make sure that none of the toxic material leaked…who knows).
Me: “So…uh…is this nine floors down because of all the radiation involved with this test?”
Director: “No, no, no…it was just what was available at the time.”
Me: “But we are nine floors down?”
Director: “Uh, yes, we are.”
Me: “But theres no danger then? Like if this facility was in the main part of the hospital?”
Director: “Well…ah…it’s just better that it’s out of the way…you know…from the school and everything.”
Me: (thinking to myself) What school? The medical school?
Anyway, so Dr. Yamashiro noted my concern about the constant testing and he said he said they may have identified a unique enzyme that’s being expressed by one of the fused genes that’s causing Ana’s mutation. At least, that’s how I heard the explanation – it was riddled with enzyme names and complex genetic terminology, so my mind watered it down a bit. This enzyme may be expressed in her blood and used as a tumor marker. They can test for this marker instead of constantly scanning – the idea being that if it’s going down, it means the Jakafi is working to stop the tumors from growing. He wants to see if he can get the insurance company to increase her Jakafi dose too. I hope they say yes. If they don’t…I don’t know. Change.org?
We’re also waiting for a battery of results from Ana’s latest tumor which is still undergoing genetic testing. There may be other drugs (according to Dr. Yamashiro) that he could use in conjunction with Jakafi to target the other half of the gene mutation. Essentially, he’s looking for the off switch for this thing instead of hitting it with tons of chemotherapy and radiation. He did mention that low level chemotherapy may be a next step (this does have side effects, but usually aren’t as bad as the heavy stuff…still makes me a little queasy to think about it). As with the targeted drugs, he wants to get the results of her latest test back before formulating a plan. The fact that the tumors are stable buys him more time to figure all of this out (can I get another “hooray!!!)
I asked if we’d be having this conversation ten or fifteen years ago – you know, about all this complex genetic targeting and trying to come at the tumor with such specific drugs rather than chemotherapy. He said, “We wouldn’t have been having this conversation two years ago.”
Ana was diagnosed two years ago. All of this new technology has become available SINCE her actual illness manifested. That blew my mind. I’m so thankful we found Columbia and Dr. Yamashiro (almost by accident, since our insurance made us go there for the transplant).
I’m also very thankful for the candles, prayers, well wishes and positive thoughts that you absolutely showered us with over the past week. You kept the bad luck away and we now have another reprieve.