Relapse Cycle 2 - Day 1

Wednesday, September 30th

We arrived at Clinic bright and early this morning. Avery once again did perfectly with vitals and getting her port accessed. Her counts had dropped again from Monday but not enough to delay chemo. Her ANC was 790, and her platelets were 88. We spent the rest of the morning waiting for her room to be ready.

Avery was admitted to the PICU as a precautionary measure to closely monitor her sodium this round. They have also decided to reduce her cyclophosphamide dose by 33% and reduce her IV fluids. Since you typically aren't admitted directly to the PICU unless it is an emergent situation, they don't provide transport services. A sweet nurse from Clinic had to escort us up(with Avery being pulled in the wagon).

As soon as we arrived, the room was swarming with people wanting to hook Avery up to monitors. This completely overwhelmed Avery and caused her PTSD to go full force. She was screaming and kicking, and they were unable to even get a single set of vitals. After some alone time, I was able to get a set of vitals myself minus the cardiac monitoring. Things continued to go poorly from there. All of the teams involved continued to discuss the situation with no true compromise reached. The PICU would not give Avery her chemo unless she was on continuous vitals despite the insistence from both the Oncology attending on service and our Neuro-Onc doctor that continuous vitals and cardiac monitoring were not necessary.

As parents we were forced with an impossible decision, but we reluctantly agreed to move Avery back to 8QB(oncology floor). Due to this afternoon of issues, we were not able to start her IV chemos today as planned. We will start those at 8am tomorrow. We were able to give the oral chemos though.

We are honestly pissed and baffled that the PICU team would deny a 6 year old the care she needed. Unfortunately, there is only so much you can "force" a child to do, especially a child that is a hard negotiator and as smart as Avery. Our team had put this plan in place to allow Avery to be in the safest place possible to receive this chemo(given our issues last cycle). Sadly, Avery will only receive the care she needs in the PICU if she returns in an emergent situation which is what we were trying to prevent in the first place. Patient relations will be getting a call from me tomorrow to discuss our displeasure with how our case was handled today!

Once we were back on 8QB, Avery's demeanor and cooperation changed almost immediately. She has made slime, played, gotten all of her vitals and meds, and interacted so sweetly with her nurses! We are hoping for a restful night with no surprises.

Please pray for:

- Minimal side effects from chemo

- Stable and safe sodium levels without requiring PICU intervention

- Rest

- Effectiveness of chemo against the tumors