Daily Dose: January 7th, 2021

Yesterday Beaudin had his t-cell collection, Apheresis, procedure. The day began early with a 7:00am check-in, and ended late with us pulling into our driveway around 5:45pm. Overall things went very well, and let me just round that excitement out with, I am so glad it’s over. Those kind of long hospital days are just so draining emotionally, and seem to necessitate (for the adults) a day or so of recovery. Beau on the other hand is out running around the cul-de-sac like a child full of spirit.

We are SO lucky that CHCO (Childrens Colorado) has adopted a new procedure to place PowerWands in stead of P.I.C.C lines for this procedure. PowerWands are, more or less, a glorified IV that has a straw on the end about 3-4″ long that is placed (via ultrasound and P.I.C.C team) into a vein in the upper inside arm. area The process is able to be completed without sedation (sedation has it’s own slew of risks) and removed without significant discomfort (discomfort that is very common removing a P.I.C.C line.) The placement is still an uncomfortable procedure, as you have to lay with your arm extended, the tender skin of your under arm facing up- a most vulnerable position, while they place the line.

Beaudin was offered anti-anxiety meds for it, but declined when he found out that they may interfere with his ability to finally try out the virtual reality set at the hospital. About 10 minutes before the procedure we were informed that we couldnt be in the room with him during the placement because it is a sterile procedure. That was not what we expected. So, we let Beau know and luckily he was already working out the virtual reality and was ok with this change. The Child Life team at our hospital does an amazing job in these instances. Our Child Life specialist was with him for the entire procedure, helping him with virtual reality, and whatever else he needed to distract himself from the task at hand. Child Life is intended to focus 100% on comfort for the child. They are not dressed like a doctor, they don’t talk like a doctor, they just show up as a friend. Beau has a lot of comfort with the Child Life team and I am SO grateful for them, especially in moments like this when Josh and I are not allowed to be in the room.

As far as the actual cells go, for the Cd3 t-cells, the goal was 1x 10^9, but they were able to collect 2.5x 10^9. So that’s great news. They are stored, frozen, in Denver until final decisions are made about where we are headed, then they will be transported.

Today we spoke with our team in Denver and made a plan for interim chemo while the CHOP study red tape continues to unwind and we get insurance approval and then a time slot in the study. Though that process is slow as molasses in winter, we did get assigned to an oncologist at CHOP which felt like progress.

We will start-up oral chemo similar to what we were doing before and then add in monthly lumbar punctures with intrathecal chemo, with the idea being that we keep the cells at bay until the CarT transfer is ready.

There is still not a confirmed timeline for CHOP. The unknowns are so hard to work inside of, but our only option, and so we carry on!

There is a lot more to say about yesterday, mainly all the emotional stuff, but I guess the “update” is something along the lines of, things went “well”, we collected well over the amount we needed, Beau rocked the PowerWand placements which really helped boost his morale, and we have a plan for the next couple of weeks.

One foot in front of the other.