As we’ve mentioned before, time is rarely what we want it to be. Things either happen painfully slow, or alarmingly fast. This week has been of the abruptly fast variant. 

We received a call on Tuesday afternoon that Mayo was ready to conduct the “simulation” of Addi’s treatment on Thursday (today). We knew we were sort of “on call” for these appointments, but when the call comes and they ask you to drop everything in 48 hrs, it’s jolting in a variety of ways. Addi was just recovering from strep and returned to school on Wednesday. But so be it. 

The simulation is essentially a series of CT scans, MRIs, and fabrications that will allow the treatment to be administered with very precise targeting. It includes using a laser light grid to create a “map” that aligns with the markers they installed a few weeks ago. When this map is combined with the MRI images and CT scans in a 3D model the doctors are able to determine locations, angles and depths to apply the proton beam treatment down to the millimeter. The treatment plan itself is still under development as they use these specialized scans and models to make final decisions. But we understand that we can expect to be called anytime after two weeks for her to receive the first round of treatment. 

Addi did incredible, her anxiety was low as she matures and understands what to expect. So brave, so strong. She can even answer questions her older sister might have about her appointment... 

CC: “Why can’t you eat before your appointment”

Addi: “Because I’m going to sleep and the food messes with the sleepy medicine” 

For a brief moment, it’s easy to get carried away and think… AFTER we have overcome this scary, terrible thing, and Addi is all grown up - you wonder if she’ll have an incredible ability to support, communicate, and empathize with others. Maybe a soothing nurse like her grandma, or an explainer and problem solver PA like her auntie. 

Anyways… can’t get ahead of ourselves. 

We ended the day by meeting wit Dr. Bendock (our neurosurgeon and team captain if you will) and his team. We appreciate his relational posture and the meeting served as a helpful check-in. We also spent time with an imaging technician that showed us a crazy 3D digital model of Addi’s brain and the areas they plan to target. 

After spending 7 hours at Mayo Phoenix we headed home, with a quick stop for a special treat of Jets Pizza,  grateful to have completed one more milestone of this journey.  Next stop will be scary because it comes with its own risks. But we know the riskiest thing of all is for another bleed to occur. The steps we are taking are what’s necessary to make it less likely for that to happen. 

Thank you for the prayers and support. We feel very loved, and that means a great deal.