If I’ve learned anything in the last week, it’s that I’m not cut out to be a genie or a fairy godmother. Granting wishes is complicated stuff – even with lots of help. I’m exhausted.
But, I’m also excited because some of Ana’s wishes are solidly on their way to being granted including her trip to the set of New Girl (thanks, Maia) to meet the entire cast (especially Zooey Deschanel), ice skating at Rockefeller Center (thanks Liz and Kim)- complete with VIP tickets and a possible “top of the rock” tour, and a fantastic shopping/very girly day in Soho (thanks Sara!) spent getting nails done and feeling like a Kardashian.
And speaking of wishes, I’m still very determined to get the cold caps for Ana but it’s turning out to be quite complicated. This has been my all-consuming obsession for most of the week. I’ve reached out to two different cold cap companies, as well as a hospital social worker because I need SOMEONE at the hospital to help me pull this off. She’s been amazing. She’s working with an organization called The Rapunzel Project to try and get a biomedical freezer for the pediatric infusion center. They have one at the adult infusion center, but Ana needs to have it nearby (as in, next to her bed) because the freezers keep the caps frozen at -30 degrees and the caps must be changed every 25 minutes for up to eight hours.
The first place I called was Penguin Cold Caps and I fully intended to use them, but after speaking to the rep, I felt a bit baffled about the cost. It’s $600/month to “rent” the caps plus a $500 deposit. I could knock the cost in half by renting used/imperfect caps which the rep assured me were perfectly functional, and I definitely will do that if I go with this company. Even so, if Ana gets ten months of chemo, that’s the vast majority of the money we’ve raised to grant her wishes. Also, what the hell am I paying for? They don’t provide any service – no training, no hands on seminar, no supplies beyond the caps themselves – NOTHING. So why is it $600/month? It seems like price gauging for desperate people and I’m not okay with that shit.
So I looked into another company called Chemo Cold Caps. They charge $400 per infusion, but at this point I have no idea how many infusions Ana will get so there’s no way to even begin to estimate the cost. Even so, their customer service rep was a lot more pleasant to deal with than Penguin and more informative. They also take care of some of the details when you use them, like shipping a thermometer with the caps so you can monitor temperature and making sure to order dry ice if it’s needed (if Ana gets an outpatient infusion, then she’d need dry ice so we could freeze her head for three hours following the infusion. A car ride home with a frozen head…not fun).
In terms of next steps for treatment – we learned today that Ana was approved for the targeted drug that Dr. Yamashiro explained reduces blood flow to the tumors, sometimes causing them to shrink (or, at the very least, preventing them from growing). The drug is called pazopanib and is usually prescribed for kidney cancer or various sarcomas. She’ll start it within the next week or so, and she’s scheduled for another full-body CT scan (chest to groin) on 1/16. That scan will tell us what the next steps are, I guess.
Pazopanib has some serious side effects associated with it including nausea, weight loss, hair discoloration (but Ana’s hair is now fully highlighted so hopefully that won’t be an issue), increased blood pressure (we have a home blood pressure cuff), and vomiting. It’s scary, scary shit. I also read that it can cause infertility and made the mistake of mentioning this to Ana who got very upset. But…if it works…she gets more time.
Even so, I think it’s important for Jim and I to understand all of the risks of every single medication they present to us for Ana’s treatment, and I have to admit that I haven’t been great about asking about future repercussions. Because, what choice do I have? But this infertility thing really upset Ana. She said one of her wishes is to someday have children to which I said, “You can adopt.” But I know that seems very dismissive to her – and maybe it is. It’s like telling her, “It’ll grow back,” when she gets upset about losing her hair. All of these things are taken away from her. So many things, and I have learned after two years that I have to take them seriously because it’s HER body, HER life. Thus, my descent into the cold cap rabbit hole.
In truth, I’m relieved that she’ll start this new drug even though the side effects scare me. Maybe it will work. Maybe she can avoid chemo for a while longer, or maybe forever. To me, as her mother, it represents hope – a reprieve – more time for us to grant her wishes. The insurance company initially denied the drug, so the fact that it’s been approved (thanks to the diligent work of her amazing team at Columbia), is nothing short of a Christmas miracle.
So, I’ll take the miracle – even though it may come with thorns.