Yesterday, after months of stability and good news, the bad news we’ve been dreading finally came. Ana’s CT scan showed that some of her tumors are growing, the largest one by over a cm. It also showed more tumors in her lungs, which may actually mean growth of tumors that were previously too small to see on the scans. The small comfort of the day was that they didn’t see tumors anywhere other than her lungs.
Except for very close family, Ana didn’t want me to say anything to anyone. I can’t blame her. Writing these words, even now, makes it all too real. But there are so many people following Ana’s story and she finally agreed to let me post an update today.
At this point Ana’s options are slim. She is no longer a candidate for the invasive lung surgery that I’d feared so much back in June. I don’t think she ever was. At that time she had fewer tumors and they were somewhat smaller, and the theory was that Dr. Middlesworth would go in, remove what he could see and feel, and we would hope that would be the end of it. But then Dr. Yamashiro presented the miracle of Jakafi, and that was our next beacon of hope. They also needed to focus on the newly identified pelvic tumor, which was large and growing fast. Now we know that putting her through two invasive lung surgeries would’ve only bought some more time – possibly – before the tumors returned. But it would’ve debilitated her twice over and hugely impacted her quality of life. It can take three to six months to heal from one thoracotomy.
Ana’s not a candidate for a lung transplant (I asked), because the disease is metastatic. If they had known that when they discovered the liver tumor, then she wouldn’t have been a candidate for transplant then either. However, it may not have been metastatic back then – the high dose of antirejection meds she took right after transplant may have exacerbated the spread of the cancer, or the transplant itself may have, or the biopsies she got when they originally tried to diagnose her, or maybe it would’ve happened anyway.
Dr. Yamashiro presented us with two treatment options, possibly three. The first is to try an oral agent that may constrict blood flow to the tumors which may again slow their growth. And – a more aggressive option – chemotherapy. He prefers the second option as being slightly more likely to stop tumor growth, but this isn’t based on experience – it’s based on a random few cases where chemo effectively stemmed the growth of tumors similar (though not the same) as Ana’s.
The problem with chemotherapy with Ana’s cancer is that 1) it’s been tried before and wasn’t very effective and 2) Ana’s cancer is slow growing and not a “traditional” neoplasm – in noncancer speak, that means it doesn’t typically respond to chemotherapy. Hell, it’s not even a traditional inflammatory myofibroblastic tumor because it doesn’t have the ALK mutation (a mutation that has been shown to respond to various drugs). He also said that as the big tumors get larger, they can try to treat them with radiation – this is pretty much a palliative treatment – it won’t make the cancer go away because it would be targeted to specific tumors in her lungs and not the whole lung (that would be too dangerous for a number of reasons).
Since they detected Ana’s recurrence in an MRI last September, the language of Ana’s treatment approach changed from finding a “cure” to “giving her more time.” Now, it seems we’re faced with another impossible choice. Put her through chemotherapy that may not work – likely won’t work given the history of this type of rare tumor and her own history with chemo – or continue to treat the tumors in her lungs palliatively, giving her a much better quality of life, but possibly less time. Dr. Yamashiro is going to process all the new information from yesterday’s scan and give us a call on Monday so Jim and I can discuss next steps. Ana has to be part of this decision-making process even though she’s only thirteen. We have to balance her wishes with the ultimate plan, factoring in that her priorities may be short-sighted (she doesn’t want to lose her hair again), but also that she’s already been through so much, and the painful chemotherapy (in particular) was not effective.
There is no definitive outcome. There is no roadmap for this. I don’t know what to do. But if we can’t slow or stop the growth of these tumors – either through chemo, drugs, radiation or magic, then Ana may start showing symptoms as early as three months from now, and could be quite sick within six months. It depends on how quickly the tumors grow and you can’t really go by how quickly they’ve been growing up until now. Apparently cancer has a tipping point, and once you hit it, things can move fast.
My child has a bucket list. After we figure out what we’re doing on Monday, my goal is to try and help her experience everything on it. I think that’s going to mean fundraising again because we don’t have much money and I hate that. I wish I’d sold 50,000 books by now and I could spend all my time helping Ana with her list. I wish I could do at least that much for her.
This blog has always been about healing Ana, and that hasn’t changed. We’re still trying to heal her, we’re still hoping for a miracle. But the other day Ana rolled her eyes and said I should’ve called it “Healing Jackie” because it wasn’t about her, it was about me. I can’t argue that point. She’s right (as she so often is). She’s the one going through this, but so much of this blog has been about what I’m going through – emotionally, financially, even physically (weight gain, TMJ, stress…)
But Ana is the one who has to endure the treatments, and give her body up to the doctors or submit to my wishes, or Jim’s, in matters of her own health. It’s a journey I can’t truly take with her. Her wishes will factor into every single decision we make going forward – which hasn’t always been the case in the past.
One final note…Dr. Yamashiro stopped her Jakafi yesterday.