Ana had a follow-up visit with Dr. Martinez today, so all four of us headed into the city and made a day of it. We charged the girls i-devices, packed extra water and practically sang road trip songs on the way there. It was the first time Ana has been back to Columbia since the rejection episode in May.
I had a list of questions for Dr. Martinez. I guess I was optimistic about the trip – Ana’s doing so well. She’s five months out from her transplant and even though she’s still on a ton of medication because of the rejection episode, I’d started to imagine life away from the shadow of the hospital. But today was eye opening. We’re really just over the first major hurdle and, although it’s a huge one, today’s visit made it clear that Ana’s at the very beginning of a long journey.
First, there weren’t any major medication changes today (I’d hoped there would be) She’ll continue to take all of her medication until this morning’s labs (we got them locally) come back. If they show no change in her enzymes, then she’ll finally stop taking prednisone and possibly Norvasc (the blood pressure medication). Dr. Martinez did reduce the Norvasc dose by half, but that was the only medication adjustment she made today.
Over the next three months, Dr. Martinez will begin to reduce the Cellcept, which is the other anti-rejection medication. Once Cellcept is discontinued, she won’t need to take Prevacid because I guess it’s the cellcept that causes hearburn. She’ll also stop taking Acyclovir within the next month (this is an anti-viral medication) Ana’s also taking a drug called Ursodiol which will be discontinued in about a month. Ursodiol treats gallstones, but it’s also a drug that helps to rebuild and repair bile ducts. I’m not sure how – it’s one of those post-transplant drugs that are important for healing.
By the time Ana starts school in September, she will be on only a few drugs – tacrolimus (the drug she’ll be on forever), possibly Bactrim (an antibiotic that protects her from, among other things, toxoplasmosis and various bacterial infections), Magnesium (although I’m not sure about that) and…I think that’s it. She’ll be down to one blood draw per month. By the time she’s a year out from transplant, she will only need to get an MRI annually. We talked about the possibility of weaning Ana from anti-rejection medications completely (some day). That’s a whole other post – for now, we’ll stick with the program.
Dr. Martinez explained that once Ana stops the Bactrim, she’s at a higher risk for infection from the cats. We have to be very careful about ensuring she washes her hands and we keep surfaces as clean as possible. I’m going to take the cats to the vet this month to get their annual vaccines and also get tested for toxoplasmosis and Bartonella (cat scratch disease). The cats can be treated for both of these diseases which will make things safer for Ana. You may be wondering why we have the cats at all, since they pose a risk like this – but you haven’t seen Ana with these cats. They are her joy. I truly believe they have been a huge part of her healing and happiness these last five months. If you are soulsick, your body can’t fully recover. The cats have soothed Ana’s soul.
Ana’s going to need MRIs every three months for the next six months and Dr. Martinez wants her to get them at Columbia. The pediatric radiologists there don’t spend as much time reading films that come from an outside source (we’d gotten Ana’s MRI at a facility in Kingston last month). Ana was really upset to hear this – the facility in Kingston was great, and local and comfortable. The study itself came out crystal clear. The reason the radiologists at Columbia don’t spend more time on outside films is that they don’t get paid for it. So much for convenience. We need to know that the experts are looking closely at Ana’s studies, so I don’t think there’s much we can do about this except shake our fists at the sky and be happy we don’t live in Buffalo.
We also learned that Ana will likely have numbness on her stomach along the incision for her entire life. It’s a big incision – I mean, it’s her entire abdomen. Dr. Kato had to cut the nerves and that is just a fact. Ana was pretty upset about this. I guess she thought that feeling would eventually return (so did I). I know it seems like a small price to pay for her life, but It’s hard to feel broken…forever…when you’re just a kid. As we get older, we come to terms with our bodies not doing what they once did – hips hurt, eyesight goes, sometimes we get sick and things are never the same. But imagine having to come to terms with your body not being what it was when you’re only 12? Imagine this happening at a time when your body is still growing?
By the time we left the hospital, I was much less enthusiastic than when I’d arrived. Everything is just so overwhelmingly final. Columbia will be a constant presence in Ana’s life – the way NYU is always with Emily. Right now it all feels oppressive and unfair. I know this sounds ungrateful. I know I sound like I’m complaining. I guess I am (complaining), but I am also really and truly grateful for Ana having come so far. I’m looking forward to so much. I just wasn’t ready to completely admit that the ending isn’t exactly as I’d hoped it would be. Those of you who have experienced cancer in your lives know what I mean. It’s a door that doesn’t completely close.