Second semester of senior year is supposed to be carefree and filled with anticipation. For the last few weeks, our time has been filled with anxiety and hospital stays. I’m happy to report that Bella is finally getting back to her routine after being released from the hospital last week. On one of her last nights in the hospital, I came to the realization that for the first time ever I did not put the hospital address in my navigation when I was returning from Minonk. I can’t even count the number of times I’ve driven to St. Jude Clinic in Peoria but I’m a bit directionally challenged so I usually use navigation. Driving it twice a day to go back and forth to work is not the commute I typically have to Fieldcrest but somehow I now find myself used to it. As I drove on autopilot, I just kept wishing Bella was in the passenger seat by me. That finally happened! After 10 days she was released and we finally both slept in own our beds. I would like to say we feel well rested but we have lots of much-needed sleep to catch up on.

Bella is also finally fever-free. She still has the virus in her blood which sounds like a nasty little bug and takes a while to get over the symptoms even though we are so relieved they finally found the culprit.  Dr. Inaba shared that in this phase of therapy, this can happen. For the rest of the treatment her immune system will not be able to fight it, so she will be on medicine twice a day along with another med. twice a day for the fungal infection she also has. Bella takes meds exactly at the 12-hour mark with weekly labs drawn to ensure the dosage of meds is keeping the virus suppressed. This will continue until her levels are in a safe range. Her last labs in the hospital showed that her hemoglobin was down a bit so she ended up receiving three units of blood before discharging. Previously she had three units of platelets. So to all the donors out there a HUGE thank you! My words will never be enough to all who take the time to donate as I know there are shortages.

She had her last LPIT (that’s the treatment that happens under anesthesia where she has spinal fluid drawn and chemo inserted into her spine) on Tuesday. I was pleasantly surprised they did it because she also had a temperature of 100 and didn't seem herself; this week she has been extra tired and her back is super sore. In Peoria, I stay in the room for every LPIT and this one was brutal. Since Bella is so athletic she can be a tougher poke (in my layman's medical terms). The NP could not get spinal fluid for her sample after 8 doses of propofol and four or five pokes from the mid to lower spine she finally got her fluid to start dripping (she did not get the VIP memo Dr. Inaba shared). I was in tears especially when at one point she jumped like she felt it. Uuugghhh, anyway her last LPIT is done & over! I hope to never witness one again!

On Bella's Mychart app, so many test results are popping up that I have no clue what is what anymore. With the two meds that both start with "V's" Bella keeps it straight even though another side effect is her blurred and spotty vision. This Wednesday was her first day back to school since Feb. 23. She is beyond exhausted this week between all the chemo and the virus/infection her body is using all her energy to fight. That is not stopping her; she has been going to softball practice but taking it easy. We all know by now Bella’s brain doesn’t have a “slow” or “easy” mode even when her body does. I just want her to feel better and for this stupid lil virus and infection to go back to where it came from! Bella may have said it best “nothing can ever seem to go my way” when it comes to side effects.

But for now, we watch the Taylor Swift concert on Disney, write college scholarship essays, and do our best to soak up all the senior moments while she can. 

"I said remember this moment, In the back of my mind . . .You held your head like a hero"-   "Long Live" T. Swift