It is 5 pm and as i watch toby sleep, i cannot stop the tears. i've never written during chemo, because it's so hard to sort everything out. there's a huge amount of purely physical challenges and an equal amount of information to digest. there's the awful sights and sounds of the pediatric ward. and then there are the continuous waves of emotion, which are pushing me down today, no matter how hard i struggle to rise above the surface to take a breath.
this is our fifth time here, watching toby as he endures the onslaught of chemotherapy. much is familiar: today we see a tiny baby hooked up to yards of tubes, an 8-year-old with such a shrunken body that she looks like she’s four, many children who can't walk or move or stop vomiting, kids with skin color so unnatural and mottled that they look like preserved scientific specimens, children with disfigured limbs and anguished faces, and we hear many, many screams of pain. We are exhausted and depleted and sad, but shocked anew each time we witness the barbaric treatments for this most terrible disease. The children here are all enduring the worst and it should not be so.
There’s also the unfamiliar: this cycle carries with it the risk of further hearing loss. Toby already has some difficulty discerning the difference between the letters “t” and “f” and “s” when they appear at the beginning of words. This is called high-frequency hearing loss and it can worsen with this cycle, to the point where hearing aids are necessary. This is also the first cycle that we’re starting at a very low bodyweight and the first time that Toby is completely without eyelashes, adding another uncomfortable element to the mix. His eyes are constantly irritated without eyelashes to shield light and dust. Toby’s counts rose over the last week, but not nearly as high as in the past. His marrow has taken a real beating and it’s obvious that his little body is struggling to keep afloat with so much working against him: there’s the huge scar left over from surgery, and the four new incision points from bone marrows that were done on Monday. There’s the low counts that cause exhaustion and the low weight that makes sitting in any position uncomfortable… the bones stick out everywhere and there’s just no fat left to cushion him. And there’s the overwhelming nausea from the drug cisplatin. My brother called this chemo agent, “the worst of the worst.”
Today we also have to contend with the unthinkable: a possible 6th cycle of chemo and a possible 2nd surgery for the lesions in Toby’s neck, followed by more chemo. Our doctor spoke of these steps today, and he'll determine if they're necessary once this cycle is complete and followed by a full work-up of scans: repeat CTs, MIbGs, MRIs and more bone marrows.
Through all of this, Toby doesn’t complain or cry. He is in pain, sick, hungry, nauseous, and unbelievably uncomfortable, but he’s still making conversation, still pointing out that the taxi medallion number appears on the top of the cab, as well as on its license plate, still occasionally smiling.
And my biggest fear: that this intervention will “break” my beautiful child. That he will not be Toby once this is through. I look at him and cannot believe what he is enduring. And I wail.
Ed Clark, Christmas Guest
11 months ago