Living with cancer is a roller coaster, both real and imagined. Just as Toby, Mooki, and Stephen were attempting to have a few quasi-normal days, something that Toby desperately deserves, the neuroblastoma crept back to the fore (as if it had ever gone away) reestablishing itself and making sure to squash any chance at normalcy. This is the reality of living cancer.
Life has been hellish since Thursday, when Mooki and Stephen received the call to return to Sloan because one of the images on the MIBG scan “lit up” where it hadn’t done so previously, signifying the potential of disease progression. Five days, and two additional scans later, it’s still not clear if the neuroblastoma has spread or if the “lighting up” is nothing more than an inconsequential “artifact.” Mooki and Stephen’s every moment has been filled with uncertainty, fear, doubt, anger, and loneliness. They have been left to assume the worst and like so many times until now, their resolve and hope has been repeatedly trampled upon. This imagined torment of cancer is all too real and just as devastating as living with its physical manifestations.
Hopefully, by tomorrow it will become more apparent what the significance of the abnormality seen on the MIBG scan is. It is extremely important to know exactly where and how much neuroblastoma remains in order to know what the next best treatment for Toby is.
The life that Mooki and Stephen once knew is a thing of the past. Each morning they wake up and make sure that Toby is comfortable. They give him his medicines, check his “tubies,” feed him breakfast and then make the trip to the hospital where they spend their day while Toby endures an assortment of poking, prodding, and testing. They return home late in the evening where they briefly catch up with Yoni, feed Toby, give him medicine, get things ready for the next day, pay bills, and collapse into bed. Often sleep comes only after long periods of thinking “what if” and then the cycle resumes the next morning.
In my prior posts I have reached out to you for a variety of reasons. Today, I would like to do so once again. Just like Toby, Mooki and Stephen also need some semblance of normalcy in their lives, if only as a pleasant distraction. Instead of eating the wonderfully prepared meals in the familiar (and at times depressing) environs of their home, they need to eat out with and at friends’ homes. Instead of spending countless hours alone at Sloan, they need some company to help pass the time. This would be a huge deal for Mooki, Stephen, Yoni, and Toby and while they may not be able to or may not feel like accepting each and every invite, please make the offer.
Ed Clark, Christmas Guest
6 months ago