Ben revealed a new skill this week during antibody therapy: he’s a natural coach. We heard phrases like “Is that all you got?” and “Give me more!” when he was giving us direction on how to alleviate the pain. Like I had mentioned in prior posts, his pain tends to be focused in the abdomen, back, head and neck during the infusion of antibodies. He says that it feels like his skin is taking the brunt of it, sometimes it feels internal, but mostly it’s the skin. Heat packs applied with close-to-rib-cracking amounts of pressure is what helps the most.
“Rub! Rub! Rub! Give it all you got! Don’t stop! Whatever you do, DON’T STOP!” These demands were given with the excitement and energy of a coach watching his team play in a tension-filled championship. His enthusiasm worked. His “team” gave it all we had. I have to admit, I like hearing him in “coach mode” instead of screaming out in intense pain – like he did on Monday. While both outlets keep his oxygen saturation at 100% (which is what we want) I prefer the “give it all you got” method as opposed to the “Why, Lord, why?” that he was screaming on Monday.
Monday. Ugh. Mondays are the worst. The first day of 3F8 is the longest because he has to get his port accessed, blood drawn, labs completed, height and weight assessed, be seen by the staff and go over all the questions of what went on during our three weeks off therapy. THEN the 3F8 is ordered (based on weight), THEN the pharmacy has to make it (I imagine people in lab coats stuck in a small cubicle with bunson burners and rows of test tubes wringing out mice to fill little baggies with mouse essence – I know, that’s weird). THEN it comes back to the ninth floor which starts the pre-medication process and eventual infusion into the kiddos. The staff has to space this out because it’s horrific enough to have a couple of kids screaming at the top of their lungs at one time, it’s quite another to have an entire floor of kids shooting through the roof in pain all at once. Also, since the kids have been off therapy for a couple of weeks, their bodies haven’t built up any tolerance to the antibodies. Once Ben’s infusion began on Monday, he started his screams of “Why, Lord, Why?” and “Make it stop!” and “I hate this hospital!” He screamed so loud for so long that his vocal cords began to sound like he was screaming in two separate pitches at the same time. And at a very high frequency. Then, once the pain subsided, he fell into a dilaudid-fueled sleep. Mondays usually result in no earlier than a late afternoon discharge from the clinic followed by an all-afternoon and evening snooze-fest intertwined with occasional bouts of mind-numbing pain. Good times.
The days post-Monday, however, have been a bit easier this time around. The pain is still horrific during infusion but Ben uses his amazing coaching skills to give us direction. He knows where it hurts and knows what he wants us to do to alleviate the pain. I couldn’t imagine him going through this therapy when he was, say, three years old. The little guys aren’t as verbally astute, which makes the process a bit more difficult to navigate. I hate that Ben has to go through this at all (of course), but there are a couple of benefits of him being a bit older this time around. I’m glad he can tell us what to do.
Ben is currently sleeping off today’s infusion. Once he wakes we’ll head back to the Ronald and hopefully he’ll feel up to doing something fun tonight or tomorrow. We’ll be in NYC over the weekend because he has a bone marrow biopsy on Monday. Don’t worry, nothing was found, this biopsy is just part of the normal 3F8 protocol.Â Then, in between round two and three of antibodies, Ben has to take accutane. Getting this drug is a big, crazy ordeal. He had to be enrolled in the “iPledge” program. This means he has to “pledge” to not get pregnant during this piece of his therapy since Accutane is famous for causing severe birth defects. This is funny on so many levels (not the “birth defect” point, but the “Ben getting pregnant” point). First of all, he’s male. Secondly, he’s got lots of girlfriends but I am confident that my nine-year-old isn’t “active” in that capacity. Third, there is no way his “swimmers” survived the Hiroshima and Nagasaki we’ve had to put his body through. In other words, he’s reproductively challenged. Big time. But we still made him hold up his hand and pledge not to procreate during his Accutane therapy. Actually, I’m making that up. All I had to do was sign a release that stated I understood the dangers. Man. If I had a dollar for every time I had to sign something like that regarding my son….
Well, I should go. Ben’s lips are swollen (allergic reactions like swelling, itching, and hives are common with this 3F8 stuff). Admittedly, he’s still incredibly adorable given the over-sized lips. I think I’ll go steal a kiss.
Have a great weekend, everyone. And as Ben says, remember to “give it all you got.”