I don’t think we will ever get used to or get over the feeling of our stomachs sinking every time Brooklyn goes under anesthesia.
I have lost count, but sedation has happened maybe 25 or 30 times in the past 11 months. Checking in at Pediatric Sedation is a disgustingly normal Friday for us.
Think of a time when you put your child or loved one under anesthesia. Then think about holding them in your arms when they’re 2 or 3 years old, listening to their high-pitched screams or hearing them shout, “The room is shaking!” or seeing their eyes roll back as their body falls limp. Then you do it over and over and over and over and over again. Week after week, month after month. Disgusting. And totally normal.
That’s how today began. A totally disgustingly normal Friday.
Brooklyn happily pushed every button all the way through the parking ramp, up the elevators and even through the automatic doors in every hospital hallway. She sat on the check-in counter, recited the spelling of all three of her names and confidently stated her birthday. She reached out her right wrist and said “this one” — because she knew they would put her hospital ID bracelet on next. After a weigh-in and measuring for Brooklyn, her teddy bear and her giraffe, she watched, without flinching, as the nurse stuck a needle into her chest port and drew out the old blood. Totally normal.
The procedure went as planned; they removed spinal fluid and replaced it with a poisonous drug, just as they have done so many times before. They also gave her a flu shot as an attempt to prevent influenza. After she woke up and ate breakfast, we headed up to the pediatric oncology floor for another chemo infusion into her bloodstream. Our final stop was up, again, to the dermatology clinic to get a new medication for her poor face, covered with patches of red.
Another five-and-a-half-hour morning at the hospital. The rest of the day was occupied with puzzles, books, playing outside and playing grocery store. Brooklyn flips from cancer patient to 3-year-old in a matter of seconds. Totally normal.
Even though this all feels totally normal sometimes, it totally sucks. There’s got to be a better way.
But for now, we will keep signing the consent forms that remind us how dangerous and toxic this treatment is and that there are potential side effects that will haunt us for the rest of our lives. We will continue to hold our baby girl while she screams as her eyes roll back in her head. And we will continue to feel those massive pits in our stomachs every 28 days when she has to go back for more. Because as terrible as this is, for our family and for many others, it is just … totally … normal.
Written by Michelle Vaith, Brooklyn’s mom
