Relapse Cycle 1 - Day 4

Friday, August 28th

It never fails that after I post my nightly update, things start to go south. Avery got settled to sleep fairly quickly last night. They kept watching her ICPs because they were jumping higher than earlier in the day. Neurosurgery decided to moved her CT scan up from 4am to 10:30pm. We quickly headed down to CT. Avery woke up on our way down, but she did an awesome job getting her scan and laying perfectly still. We got her settled back to sleep, and I tried to do the same.

Around 12:45, neurosurgery came by to tell me that her ventricles were once again slightly enlarged from Tuesday's scan (around 6mm bigger). They were considering reopening her EVD to allow some pressure relief, but they were waiting on the call from our main neurosurgeon. Shortly after I settled back to sleep, Avery woke up crying with headaches. They were able to give her some pain meds, but they didn't last long and only provided temporary relief. Sometime in the early morning they opened the EVD to allow it to drain the pressure.

Dr. Johnston came by and said they decided to place a VP shunt today, and that she would be going down for surgery in a matter of hours. Timing in Avery's case was once again difficult to maneuver, but they needed to get it done before her counts started to drop due to the chemo. There were risks associated with placing the shunt now, but the benefits outweighed the risks. Delayed wound healing, increased risk of infection, and potential for spreading the cancer into her abdomen were the biggest risks. The shunt is a valve in her brain that allows the excess cerebrospinal fluid(CSF)to drain through an internal catheter into her abdomen. The excess CSF will be absorbed by her body. Typically medullablastoma is spread through the CSF which is why it is usually only found in the brain and spine. Since we are now draining the CSF, which we know has tumor cells in it, into her abdomen, we are running the risk of spreading the cancer out of the central nervous system.

She once again did an amazing job today! For the first time ever, she rode in the hospital bed to surgery and didn't even cry when we had to tell her goodbye. The surgery went very well, and she was brought back up to the PICU after recovery. She slept off the anesthesia for a few hours, but she was like a new kid when she woke up. She hasn't had any headaches, and she has had increased energy and appetite. She played with toys, Facetimed with her sisters, and ate almost 3 cups of chocolate ice cream this evening. The incision in her abdomen is pretty sore as is her neck, but those should feel better in a couple of days. They used nylon sutures which will have to stay in a couple of weeks before being removed due to the expected delayed wound healing. Her biggest complaint of the day, however, was that they had poor internet connection while she was waiting to be put to sleep!

She is about to receive her oral chemo for the night. They are still treating her sodium issues, and we hope to get those under control soon. We have a repeat CT scan at 4am tomorrow because we are apparently too well rested and don't have anything better to do at that time of the day... haha.

Please continue to pray for:

- Minimal side effects but maximum benefits from the chemo

- Sodium levels to get under control

- No infections or illnesses

- Complete healing on Earth

***Please also lift up a special prayer for our friend Destiny and her parents. They were given the news that no parent should ever have to hear "There is nothing else we can do." Please pray for a miracle that only God can provide for this beautiful, spunky, full of life little warrior.