When it rains...

Monday, April 12th

Avery has been experiencing worsening symptoms since our clinic visit last week. She began vomiting again on Friday, has been having intermittent headaches, is more tired than usual, and is showing some increased weakness in her legs.

We went to clinic this morning to get an LP. Avery got very nauseous and felt terrible when we first arrived. They gave her some Aloxi and IV fluids, and she perked up a little. Her neuro exam revealed that her left pupil was dilated and not responding to light/dark as it should be. She has also begun complaining of blurred vision in her left eye. They ordered a head CT to check once again for widening ventricles and hydrocephalus. She was such a brave girl and did perfectly getting the test. It showed no issues with pressure, which means that the disease is irritating the 3rd cranial nerve. Since there wasn't increased pressure, they were able to proceed with the LP as planned.

She was once again so brave getting sedated for her LP. This was only the second time she had ever gotten it done in clinic, so it is still new and scary. She was very upset when she woke up from sedation, but luckily we were able to head home after about 45 minutes.

The results of the LP were not what we had hoped for. They showed there were clusters of tumor cells in her CSF. They also check the glucose and protein levels of the CSF. Her glucose was 5 (normal is 60-90) which means that the tumor cells are actively consuming all of her CSF glucose. Her protein levels were also raised which coincides with disease.

We had hoped and prayed for the treatments to hold off the disease much longer, but it has proven to be too aggressive. Her brain is very sick, and her body is very tired. We are temporarily increasing her steroids to help combat some of the symptoms. Her ANC was 450 today meaning she is neutropenic again, so she will require a Neupogen injection for the next 2 nights.

Shon, Avery, and I will be traveling to the University of Florida on Friday to discuss the Modified Measles Virus (https://www.clinicaltrials.gov/ct2/show/NCT02962167 ). This could potentially give Avery more time, but there are no guarantees. She may not be well enough to even participate. We have more very difficult decisions to make keeping in mind that Avery's quality of life is our #1 priority.

We had to have a discussion with Ella and Lexi tonight to let them know where things were headed regarding Avery's prognosis. It was a tough conversation and one that no one, let alone 10 year olds, should ever have to hear. Please say an extra prayer for them!

Please continue to pray for:

- Improved counts

- Protection from germs and illness

- No new or worsening symptoms

- Peace and comfort

- Complete Earthly Healing