Since Angela and Summer left this past weekend we have been learning more and more about what will be in front of us for the next 7 months. It’s very structured and we have to wonder if that routine will be a relief or maddening by the time we get through it.
First things first… Summer was hit with all of her tests over the past few days. Covid (obviously), MRI, PET Scan, Spinal Tap… You name it. She has been poked and prodded to check her over since her last visit, 5 weeks ago. Overall, the nurses said that Summer’s physical condition and energy are beating expectations. The MRI results were good and nothing was seen visually, but we do not have results from the spinal fluid exam.
Scanxiety. Its a thing. Until we get those lumbar results, you have to be on the edge of your seat.
Between tests and pokes. Angela and Summer saw nurse Katie and started talking about the routine for the Chemotherapy.
4 days of Chemo and 3 days off.
The 4 days of Chemotherapy will do “in-patient”. Summer will be in a room in the hospital that is essentially a suite. One side is her “hospital” side and the other side will be a bedding area for the caregiver on hand. I have yet to see what the room looks like. Angela and Summer were checking in tonight at 8PM to start day one tomorrow.
Will Angela be able to leave and grab a bite or do anything during those 4 days? Are we with Summer 24/7? We have no idea how this works right now. Maybe I should spend more time on the St. Jude Facebook groups, but I honestly don’t mind learning our way through some of this.
The three days “off”? Not sure what that means either. Are they filled with tests? Are we isolated from society? Again. We will learn more as we work through this.
It’s all tough to wrap your head around especially when you think about holidays and being there 4 or months into the new year. I keep thinking it could be worse. Some patients we have talked to have spent years in Memphis because of diagnoses that require far more treatment. Those families pack up the house and move to the Memphis area for the duration of treatment. We have said it more than once that Summer may want direct her career aspirations to living in the Memphis area. Once you are a St. Jude patient… You are forever covered for treatment by them.
Its a blessing, and a curse?
Believe me… We are thankful beyond words. Never doubt that.