Updated: Apr 27
What is it like waiting for your baby to get rescans?
What is it like sitting and anticipating a day you hope to celebrate, but even though you avoid the worry and the fear; it sits in the pit of your stomach, like a lava hot rock, just burning from the inside out?
What is it like putting your two year-old through 46 infusions of aggressive chemotherapy and having to WAIT 4 entire months to see how they are working; all while knowing that even if the scans come back completely perfect showing no tumors, he will have six more months of treatment??? Six more months of Infusions that make him feel nauseous… That confuse his sleep and his hunger… That make his bones ache… that turn him into the sweetest sour patch kid you’ve ever seen. But literally THAT outcome is your prayer??
Because if the tumors are completely gone, he only has to have two infusions a month instead of five, which reduces his time connected to a drip from 102 hours down to 48 hours. Please God, Please!
What is it like wondering what size each of the nine tumors will be and whether or not his bone has grown back at all in his hip or his skull?
What is it like running from every single thought that starts to land in your mind… The what ifs… what if these rescans are like our first and show no results… What if these rescans are like our second and show a handful of new tumors? What if we have to find a new specialist and start doing inhibitors? What if it’s not working like it was working before?
But you hide from these thoughts… No. You SPRINT from these thoughts. Every time one starts to sneak up on you like the underdog closing in on the three times gold medalist, and the tears start to well up, you fucking hit the pavement with complete disregard as to whether or not you have another speck of oxygen in your lungs. This doesn’t matter… You run your heart out because that thought and that result is not acceptable.
Unless that’s what God chooses.
A reminder to yourself that helps you breathe.
And then there’s this… What is it going to be like prepping your little warrior to have anesthesia for 7th time? A seemingly simple process for you and I…
But putting your child in a state of NPO… (no food or drink) Your child who has arginine vasopressin deficiency, which has created extreme trauma, wrapped around restriction of water and drinks. A trauma that makes him die a little on the inside when you tell him that he cannot have a drink of water because he fears what used to be the literal truth that could happen. And now you have to schedule your preparation for anesthesia making sure that you do your best to keep him comfortable.
Inside stream of thought:
“Give him medication at 6 PM… try to get him asleep by 7 PM… Wake him up at 11 PM… Try to encourage him to drink his protein shake that he usually has at 3 AM.. the one he cannot live without… Give him Benadryl and melatonin to get him back asleep by midnight when he can no longer have any food… Wake him up at 5 AM to make sure he starts drinking water so that he is over hydrated and less fearful… Get him medicated by 5:30 AM. Get him to drink more before 6 AM. Cut off all drinks at 6 AM and do EVERYTHING in your power and will to distract him so that he does not realize his restrictions… so he is not catapulted into a state of complete fear and stress. Somehow continue this distraction through the drive to the hospital where he will scream as they access his port, which he hates every single time because it includes a curvy push pin being pressed into a medical device surgically implanted into his chest.
And then there’s the radiology waiting room… That damn radiology waiting room. The one that he’s seen over and over again and he knows what’s coming. The one where they inject him with radioactive material and make sure it’s moving smoothly through his entire body so that they can take proper scans. The one that makes his kisses and tears taste like metal. The one where he knows how badly he wants water and he cannot have any. The one where he has literally screamed for hours on end waiting for his turn to go under the high-tech, MRI and pet machines. The one with the wall decorated in skis and boots and cameras and trees… The wall that mom stands him in front of for minutes upon minutes trying to distract him to get him to point out the little pictures. He doesn’t wanna point out the little pictures!!!! He wants a damn drink of water! And no one will give him one!!! AND HE’S FURIOUS ABOUT IT!!… Will they ever give him one again? Will he die a slow death of dehydration? His body hurts on the inside and he just wants it to be over.”
So what does it look like waiting for your baby to get rescans?
It’s fucking hard.