Obstacles and Options
We finally made it to CHONY (Children’s Hospital of NY which is what I’m going to call Columbia Presbyterian from now on..) on Thursday, in spite of forecasts of snow, sleet and ice. The roads were clear and we had no trouble making it in by Ana’s noon appointment. It was Ana’s first appointment with Dr. Connolly, the radiation oncologist who will be in charge of her treatment, should she get it.
Our understanding was that this consult would precede the actual treatment. It was kind of a meet and greet/information dump and would be followed (fairly quickly) by the mapping of Ana’s tumor in preparation for the zapping process (my technical term for radiation).
However, as with everything on this journey, it wasn’t as simple as that. Dr. Connolly explained that Dr. Yamashiro wanted to speak with us after the appointment with her to discuss surgical options again. Now, we’d thought surgery was totally off the table because of the volume of tumors in Ana’s lungs, so this was kind of a WTF moment (which I kept to myself). Dr. Connolly then went on to explain the highly technical process of the specific type of radiation Ana would get. I’m not even going to try to get technical here. This is basically my key take away…
There are multiple beams of extremely low level photons that are aimed at the tumor. The dose is extremely low where these beams touch collaterol (healthy) tissue, but they arc in a bell curve – at the top of that curve is the highest intensity radiation. Through an elaborate process of machine configuration, ball bearings, fairy dust, and the pulling of levers and knobs, the bell curve hits the tumor and delivers the biggest dose of radiation. Then the arm moves and delivers another dose in a different location. The multiple beams means there are multiple bell curves all hitting the tumor in close intervals, but leaving the surrounding tissue pretty much unscathed. This is all painless and takes about 45 minutes to an hour per session. Ana will need three sessions, plus one initial session to actually map her body (including creating a foam mold which is placed over her body.) Here’s a picture of the machine.
Ana must remain absolutely still the entire time (the foam mold helps), but can listen to music and also take something to help with anxiety. She won’t be sedated though (they sedate kids 5 and under because of the need for them to remain perfectly still). Once the process begins, it is imperative that it continue (e.g., she can’t miss any of her appointments). Also, they need to put three tiny freckle-like tattoos on Ana’s body which are essentially targets. This didn’t go over well with Ana, but it’s more because she’s afraid it will hurt “to get a tattoo.” But Dr. Connolly explained that these are extremely tiny and essential. Once the marks are placed, they absolutely cannot move or it compromises the efficacy of treatment.
So apparently not all tumors respond to radiation, and this wild card was something I wasn’t fully aware of. There is absolutely nothing in the literature about Ana’s specific tumor type receiving this type of radiation. Dr. Connolly says she’s treated rare, nonspecific tumors before and they have responded, so she feels that there is a good chance Ana’s will as well. But, quite frankly, this wasn’t particularly comforting. Ana’s reaction to this uncertainty was to say, “Isn’t that the case with everything?” Yep. Pretty much. However, sometimes they find that radiating a tumor in one location creates an immune response in the body which shrinks other tumors. That’s obviously the best case scenario. I was ready to sign on the dotted line and get the process started, but…
We said good-bye and went to Pediatric Oncology to meet with Dr. Yamashiro. He told us that he’d recently met with a surgeon who visits the hospital monthly (he’s from Denver). This surgeon is doing amazing things with lung tumors, and he had recently shown Dr. Yamashiro a minimally invasive procedure that was nothing short of miraculous. Dr. Yamashiro wants to make sure that radiation won’t compromise Ana’s lungs for this procedure (if it is an option). He wanted to speak with Dr. Middlesworth (the surgeon who removed Ana’s pelvic tumor in August), the radiation oncologist and the miracle doctor from Denver before committing to radiation. He also mentioned low dose chemotherapy as an option insteaad of the high intensity treatment we’d discussed. Low dose chemo has less side effects, though hair loss is still possible.
So these are Ana’s options:
- Stereotactic Radiation to the largest tumor (it’s a bit over an inch, the size of a large marble)
- Minimally invasive endoscopic surgery to remove multiple tumors
- Low dose chemotherapy
- High dose chemotherapy (the kind that requires hospitalization)
- Possibly a combination of one or more of the above
We essentially left without any answers and no specific treatment plan…again…except to continue the votrient at the higher dose, which is definitely causing more obvious symptoms (most notably stomach pain/loss of appetite). Ana has already lost 3-5 pounds.
Even with all this uncertainty, I feel very confident in Dr. Yamashiro because he is constantly re-evaluating Ana’s options and presenting new ones to us on a monthly basis. My gut feeling is that Ana’s cancer is a puzzle he’s trying to solve, and he’s not jumping at the standard treatment like some doctors might. I believe if she was still at Westchester, she’d have started chemotherapy already. Dr. Yamashiro is considering everything from how Ana feels about chemotherapy, to how her tumor reacted to it in the past (not at all), to new technologies that make the most sense with the least amount of collateral damage on her healthy tissue. Ana’s lungs are actually quite healthy now in spite of the many tumors, so any treatment she gets for the tumors must be considered carefully. The more treatment (whether that’s surgery or radiation), the more lung damage there will be. In short, he’s doing his job and doing it well.
And a final note on wishes:
I heard back from the New Girl folks and they’ve confirmed that we can visit the set the week of 2/15 (Ana and Emily have no school that week). I reached out to Jeremy, my contact at Hope & Heroes Children’s Cancer Fund, and he immediately called their travel agent and booked a flight, hotel and rental car. We leave on 2/15. I am going to use some of the money we raised for Ana’s wishes to help pay for certain things, like transportation to and from the airport, food, etc. I still don’t know the date of our visit to New Girl, but the girls see as excited to go some place warm and possibly visit the beach as they are to meet the cast of the show.
We’re also working on redoing Ana’s room and, thanks to Maddie’s Mark, 100% of the planning for that is being taken care of. All I’m doing is sending suggestions and lists of things Ana would like for her room. It’s looking like the room redo will be done at some point in March. We’ve begun to go through Ana’s things and clear out her room in preparation for that. We also don’t want Emily to feel left out so I painted her room and we went to Ikea last week to get her a few new things ($400 for a bed, shelves, night stand and two lamps!)
Finally, Jim and I took the leap and bought a new (used) car, a purchase motivated by needing to reschedule Ana’s radiation consult twice due to the weather. We traded in my old Honda (90+ thousand miles and 11 years old) for a 2013 RAV4. It was the strangest car purchase I’ve ever made, because there was very little joy attached to it for me. I found the car on Prestige Toyota’s web site, reached out to get a trade in value for my Honda, then went in the next day and made the purchase in roughly under two hours. I did test drive it (and it was fine), but barely even glanced at ANYTHING else. I am stressed over the new debt, but glad we now have a reliable car to get us to and from the city, and one with all wheel drive so a few inches of snow won’t strand us (our other car is a 2007 Toyota Matrix which has begun showing its age).
Here’s a picture of the girls at Ikea – it was a great day except that Ana’s stomach hurt her the entire time. She’s since started Zantac daily to see if it helps with the constant stomach upset.