You know what I hate? I hate it when you craft the perfect blog entry; full of updates, wry wit and biting satire of our current state of affairs, hit the “publish” button — and watch as your web browser freezes and your entry vanishes into the ether. This is what happened to me last week, and in an attempt to refrain from throwing our laptop out the window, I opted instead to walk away for a few days. But, I’ve worked through my frustration (like I don’t have enough to be frustrated with right now). So, let’s try to get back to business.
Here’s the stories we’re working on for the 11 O’clock entry:
1. Not quite a bug, but…. Kids grow fast — this was something Vampmommy and I have been told many, MANY times since Vampbaby was born. And, although cancer has railroaded the normal glee of watching your child develop, our little one has continued to make some of the regular strides you’d expect. Almost overnight last weekend, our little baby turned into a boy. Perhaps it was the sneakers we had to buy (he’s gone up a shoe size) or the teeth that are popping out daily — or maybe it’s the fact that he’s added a few inches in height — but it suddenly seems that referring to him as “baby” seems entirely inappropriate for this 19 month old boy. So, Vampboy it is……
2. What did you say? While Vampboy has been tolerating his treatment pretty well, we are dealing with a myriad number of complications that, while they may not leave him passed out in a drug-induced stupor, still leave us with some stress and sadness. Of particular note is that Vampboy has started to lose his hearing. This is a common side effect from one of the chemo drugs, and it’s only the upper register, in a zone of hearing that is only available to canines and human kids (if you’re over 30, I have bad news — you’ve lost it too!). It doesn’t really impact him in any significant way, and we knew it was coming, but it didn’t make the discovery of it any easier to swallow.
3. It depends on what the meaning of “is” is…. I’m having a particularly difficult time answering those who ask how Vampboy is doing. Not because it’s emotionally difficult, but rather because my answer doesn’t quite speak the truth. I am still amazed at how we adapt to situations when we have no choice. Part of me still can’t believe this is all happening, yet we’re in our 10th clinical week of treatment. My reaction to a question about how he is doing only reflects his condition in context. So, while these days my answer is “fine” and “well” and “good”, I thought I’d provide a picture of what that level of existence means under these circumstances. So, this is what him doing “fine”, “well” and “good” looks like:
* He has a tube coming out of his nose that goes into his stomach. That’s he gets all of his anti-nausea and other drugs through while we’re at home. It’s a combination of about 6 drugs given between one and four times a day each. And, when he’s not throwing up, a slow but steady stream of a combination of pedialyte and formula drips into his tummy to provide some nutrition, as he’s not eating.
*His port is accessed all the time. This means that he has a needle sticking out of his chest, covered with protective tape. Attached to that needle is the IV tubing that helps us give him TPN (this is intravenous feeds, which he’s hooked up to for 12 hours overnight), as well as for blood work, some meds at home, and all of the chemo drugs he receives in the hospital.
*He pukes — on a “good day”, it’s only once a day. On a bad day — once an hour. All of this fun usually happens overnight, leading some to speculate that there’s some acid reflux issue. Regardless, without every medication given on time, no doubt we will continue enlarging the profits of the company that makes All Detergent with at least a small load of vomit-stained laundry per day.
*On a good day, Vampboy has the energy to play and be active as if he were not in this situation. While this is a good thing, it is challenging to be in this condition while trapped in the hospital. Not to mention the fact that his need for feeding requires him to be tethered to one pump or another 24 hours a day.
*Transfusions of blood and platelets are only done once per cycle, as opposed to two or three times. We now accept blood transfusions as simply as if they were giving him mac and cheese for lunch, but it is still a big deal. Note: let this serve as a public service announcement to all to, when you can, give blood. It is certainly put to good use!
*He’s home, or at least his hospital stay is short. He is in right now beginning his 4th chemo round, but barring strange things (which are always a possibility) he’ll be home Friday.
So, now you know what “good” is, which is not so good — but we’ve seen it bad (VERY bad), so taken in context the above is a cakewalk.