Relapse Cycle 1 - Day 1

August 24th

We started the day with an eye appointment at Children's South. Avery did great with the exam, vision test and getting her eyes dilated. Thankfully the exam showed so issues or abnormal pressure on the optic nerve.

Immediately after, we headed to Clinic 8 at Children's Main to meet with our Dr and Nurse Practitioner. They showed us Avery's brain and spinal MRIs from last week side-by-side with the MRIs from May. We were able to see the extent of the disease and spread.

Next we discussed our short term plan. We will complete this first round of chemo next week. We will rescan the brain and spine in exactly 3 weeks to see how the disease responds to the chemo and how well Avery's counts recover. After scans, we will either proceed with a 2nd cycle of chemo, or move straight to radiation(either because the disease didn't respond well or because Avery's counts struggled to recover). After radiation, she will likely begin maintenance chemo, and we can possibly look at other therapies such as virus therapy, immunotherapy, T-Cell therapy or vaccine therapy. Each stage is dependent on the response of the previous one, so we can't really look far past Step 1. Today with the state of Avery's disease, they could not give a curative dose of radiation, so our first goal is to minimize the disease to a smaller field where a curative radiation dose could be given. The discussions were difficult to have, but we trust that our team has Avery's best interest at heart 100%.

We finally made it up to our room after 4pm. Avery had to get a COVID test and her NG tube placed right off the bat. In true Avery fashion, she put up a good fight! She had a good rest of the day painting, doing Legos, and watching movies. We even took a stroll around the floor and got to see some of our favorite nurses. Avery received 4 chemotherapy drugs today along with a whole other host of meds. I got to administer my first chemo today in order to practice so I can give it when we get home. It's hard to believe that a week ago Avery wasn't taking a single medicine, and today, this is her regimen:

We started Avery's feeds back at 10mL per hour. We will meet with nutrition tomorrow to discuss if we will just do night feeds or continuous feeds. Since beginning steroids over the weekend, her appetite has finally picked back up, but we know that most of these therapies will work to suppress her appetite. They are planning to place a g-tube as soon as she recovers from this cycle. They could not delay starting chemo today, nor did they want her to have an open wound while her counts plummeted, so we temporarily settled for the NG tube.

Avery is resting peacefully after a long hard day. I have no doubt she will wake in the morning ready to take on Day 2!

Please continue to pray for:

- No or minimal side effects from the chemotherapy

- Significant response of the disease to Cycle 1

- Protection from illness and complications

- Complete healing on Earth