We were told by our nurse case manager today that the treatment protocol for High-Risk Neuroblastoma is by far one of the hardest on both the patient and the family, and we can certainly attest to that! We are approaching the one year mark of Caroline's diagnosis, and our whole family is just mentally and physically exhausted; honestly, we are very "over" this process. But, we won't quit, we won't slow down, and we will continue to remind ourselves that this schedule and strain on our family is temporary. If Caroline can endure the actual treatment, we can certainly keep forging ahead at full-steam...even on the days we feel like we have nothing left.
As of now, we are scheduled to go back into the hospital for Round 2 of inpatient Immunotherapy on Monday, 11/19. We will be in the hospital for Thanksgiving week, and will likely be there for 12-14 nights, with a possible 1-2 day break in the middle (but based on Caroline's recovery from this first round, we aren't counting on the break).
The pictures we decided to share this week show part of her current daily/weekly routine, which includes: many oral doses of liquid medication, a shot in her arm, double-lumen Hickman line flushes, a sterile central line dressing and clave changes, and most challenging of all, 4 oral pills she has to swallow (which can take her 1-2 hours per day to get down!!!). Caroline has been a super-strong trooper over the last year, but it's apparent that even she, too, is getting tired of this grueling routine. She misses her friends, and wants to be a normal kid doing "normal" kid things; she's starting to notice what she's "missing out on" more and more.
We would like to say THANK YOU to all of our friends and family that have stuck with us throughout. We are aware that everyone has their own lives, and problems to deal with, so we appreciate that continued outreach and support! Much love!!!
The Lantz Family