As we finished round 4 of chemo, I felt like I was spending time with an old friend. I keep hearing the song, “Back in the Saddle Again,” on a constant loop in my head. I now know what to expect. I know that for four nights the alarm needs to be set every 1 ½ hours to change his diaper. I know the way Liam tolerates being awakened to be changed and how to do it as stealth-like as possible with minimal sleep interruption. I know to have all diaper changing needs including gloves and butt paste, the special concoction that is formulated at the hospital to ward off painful diaper rash associated with chemo, within arm’s reach. I know that he’s going to want his feet rubbed in order to go back to sleep after I interrupt his rest. I know to have extra PJs close by because invariably they’ll need to be changed at least once but more likely twice during the night as quickly as possible. I know to have two or three plastic-lined sheets layered on top of each other on his bed so that if one gets wet, I can simply pull it back and have another in place. I know to have a flashlight close by to inspect Liam’s butt for signs of diaper rash without having to turn on the light, or, as Liam calls it, “the sun.” I know to have a container right next to the bed to collect the chemo-laden diapers. I have the routine down. What I don’t know how to do is deal with his withdrawal. He’s barely talking and seems like a shell of his former self. He doesn’t want to walk and when he does, insists on leaning forward with his head resting against my hands as he shuffles along and Larry pushes the IV pole or carries the backpack with the pump. He’s not sad nor is he happy. He’s very indifferent towards everything. He’s tired. Very tired. But every once in a while, he shows a glimpse of his true personality and smiles his adorable smile that makes his eyes twinkle or gives me the hush sound as he hears the sounds of sirens outside. Those glimpses are all I need to keep gently nudging him along, but the glimpses are too infrequent. We’ve also noticed a very discernible change in his attitude when someone asks us how he’s doing or wants to talk about his medical condition in front of him. He withdraws even more so we’ve instituted a policy to not discuss how he’s doing in front of him. While logically we know his body has been through a lot, it’s difficult to not have our son’s sweet personality full of discovery and wonderment fully present and accounted for. And while he was deemed recovered enough from surgery to withstand another round of chemo, it seems that he hasn’t shaken the feelings of insecurity associated with waking up in the ICU of NY Presbyterian with a face full of strong “chemo tape” (tape so strong it reminds me of electrical tape), a tube down his throat breathing for him and another down his nose. He doesn’t talk about the time in ICU. He hasn’t said a word about it, but I know he remembers. If he remembers his favorite cleaning person Gabriel, after not seeing him for more than a month, he certainly remembers his short but painful stay in ICU. One of the most amazing things about Liam is his innocent, open, trusting disposition. Now he’s guarded before deciding if he’s going to smile. When we ran into Zachary and his Mom leaving the hospital on Friday as we were arriving, Liam accepted the birthday present they thoughtfully picked out for him but he simply wouldn’t smile. As soon as they were out of our sight, he smiled at me with excitement for receiving a present. When someone comes to visit, he acts indifferent until they leave and then he wants to know where they went and when they’re coming back. He acts wounded, but we can’t tell if we’re reading into the situation and if he truly is wounded or if he’s just recovering from the cumulative effect of four rounds of chemotherapy, multiple in patient stays, and a long, extensive surgery in a 10 week period. I suppose it’s a little of both. I’m hoping he’ll very quickly erase the memories that are preventing him from showing those wonderful personality traits and come back to us. I know he will but every hour that I don’t have him here, a little piece of my heart breaks for him.
It’s easy to focus on the euphoria of a successful surgery, but the reality is that he is very skinny from not having eaten in a week (his appetite was just beginning to recover when the fourth round of chemo began); his skin is literally hanging off in places I didn’t know skin could hang off of a body; sitting is very uncomfortable because he doesn’t have enough fat to cushion him in a sitting position; and I can literally feel every bone in his body. I find myself holding him very protectively and cradling his head against my shoulder or chest like he’s a newborn. I want him to feel comfort when he’s in my arms and being in either my arms or Larry’s is the only place he wants to be. Someone told me it takes an adult a week to recover for every hour they are under general anesthesia. If Liam takes half the time to recover, that puts him at five weeks to fully recover from surgery and have him running around, pushing his dump truck and chasing Ella. Now, throw in another round of chemo which, apparently, makes you feel like you’re suffering from a really bad case of the flu, and that recovery time may be more like six or eight weeks. I think there was a part of me that was hoping he would awake from surgery and feel pangs of hunger now that the tumor that was pushing against his stomach was gone. I was hoping he’d be like someone whose sight is regained during surgery and there would be an immediate improvement. At this point, what’s giving me comfort is knowing that the primary source where the cancer cells were dividing and multiplying is gone and the surgical pathology report that examined the 14 separate specimens taken was, in Dr. Kushner’s words, “very good.” Someone else at the hospital told me something that puts things into perspective…as badly as Liam feels, his cancer feels even worse. We’re excising a demon in his body that doesn’t easily let go. This demon doesn’t know what it’s up against. It has to deal with all of us who simply will not back down. On Friday, one of the nurse practioners on the neuroblastoma team told me she couldn’t believe how extensive the network of people who are fighting this battle along with us and supporting us is. Every child who is fighting a battle like this needs the same support. This is not one that anyone would want to do alone. And we’re very, very, very fortunate to have so many people keeping us in their thoughts and prayers. Maybe a trip to Disney World is in order when this initial phase of treatment is finished…some fantasy and fairy dust could be just the thing Liam needs.
-Gretchen
