Clinical Trial Update

Sunday, April 18th

Avery's vision is her left eye continues to worsen. By Tuesday, the blurriness of her left eye had become more pronounced, and she could not focus on or follow what she was trying to look at. At the recommendation of our team, Avery agreed to patch the left eye which would in turn help her see more clearly through her good eye. She has done so well with the patch this week. By this evening, though, she can barely even open her left eye lid. Thankfully she is not in any pain, and she doesn't seem to be scared of this new symptom.

We traveled to Gainesville, FL on Thursday and met with Dr. G from the University of Florida Neuromedicine Hospital. We went over Avery's history, and he had previously reviewed her medical records. We discussed the trial, the process, and the time commitment. Shon and I agreed that we want to move forward once/if Avery becomes eligible.

The trial would consist of two lumbar punctures(a week apart). During the LP, they would inject an oncolytic Measles Virus(MV-NIS) into her spinal fluid. MV-NIS should attach and fuse to host tumcell membranes and kill the tumor cells. On Day 28 they would retest her spinal fluid. If tumor cells are still present, they would consider it a failed attempt, and we would seek other therapies for Avery. This will require us to stay in Gainesville for 2 weeks, and then we would travel back and forth for some follow up appointments to test her blood counts and for virus shedding.

This is a Phase 1 trial. They are currently proving the safety and toxicity levels of the injections and are not testing for efficacy yet. There is no guarantee for good results, but given that the current therapies have failed, this is the best option we have. Our team at Children's agree as well.

In order for Avery to be able to be accepted, there are multiple criteria that must be met first. She unfortunately does not meet any of these yet:

- ANC >= 1000

- Platelet count >= 100,000

- CD4 count >= 200

- Pass a CSF flow test

- Be 32+ days past her last dose of Avastin

We will continue to hold any other treatments in hopes of her reaching these thresholds. We hope that she will recover enough to begin before her disease progresses any more. She is approaching 4 weeks without chemo.

We were able to enjoy the rest of the weekend by surprising Avery with a quick trip to Disney and Universal. We all had the best time! Avery's mind wanted to do much more than her body would allow, but she didn't let that stop her from riding all of the rollercoasters and making the most of each day! She was able to catch up on her rest on the very long drive home today.

We return to clinic later this week to check her counts.

Please continue to pray for:

- Count recovery

- No new or worsening symptoms

- No disease progression

- MIRACLE results from this trial