Friday, August 21st
It has been a difficult past 24 hrs trying to process all that has been thrown at us. Avery has Leptomeningeal spread which means that cancer cells have spread to the thin layers of tissue that cover the brain and spinal cord. She has several nodules along her spinal cord and a large number in her brain as well. The largest in her brain is currently measuring 2.1x2x1.7cm. Our first goal is to get this disease stable in order to reduce the radiation field.
On Monday morning, she will have an eye exam to check for pressure changes and ensure there is nothing pressing on or near her optic nerve. After that, we will head to Clinic to discuss further with Dr. Friedman and team. She will start chemo on Monday which we believe will be an inpatient regimen to begin with. If things go well with chemo for the first 2-3 days, we should get to go home and continue with oral chemo. Her cycle will last 7 days and will include irinotecan, cytoxan, temozolomide, and etoposide. They are hard-hitting chemos that will plummet her counts, so we will be back to giving Neupogen injections at home until she recovers. They will do another MRI on 9/11 or 9/18. If her disease responds significantly to the chemo, they will likely do another cycle(hopefully outpatient), and then follow with radiation. If she shows minimal to no response to Cycle 1, they will move forward with the radiation immediately.
Avery has been very susceptible to neutropenic fevers when her counts bottom out. This has historically landed us back in the hospital for an additional week each cycle. Please begin praying now for us to avoid this scenario.
She will likely be getting an NG tube next week as well, as she might not have time to recover from a g-tube surgery. Treatment is very time critical right now, so we will trust our team to help us make the best decisions for Avery.
Avery has been suffering from headaches and nausea/vomiting this week. They have started her on Dexamethasone(steroid) twice a day to help alleviate some of those symptoms. Of course, she spit out the very first dose.
Luckily she felt well enough to get to go to her Calendar of Hope photo shoot today. She got to get her makeup professionally done and dress up as her own version of a super hero. It was the absolute highlight of the week(for her and us)! When they begin taking orders, I will provide more information for those of you interested. All proceeds will go to Angel's Hope which is a wonderful organization that supports pediatric cancer patients and their families.
Please continue to pray for:
- Relief from headaches and nausea
- A fun weekend at home before she begins chemo
- All of her nutritional needs to be met
- Strength and courage for Avery(and all of us)
- Complete healing
Praying for little Avery and the entire family.🙏
My husband and I will be praying daily for Little Avery. We are so sorry she and her family and friends are battling this terrible problem at this time. God be with each of you and bring strength and healing to this sweet little child.
God bless you all and our prayers , thoughts and concern are always with you. We love you guys, Michelle and John
Prayers for a fabulous weekend and for next week to go smoothly and for complete healing. You all are so strong and especially Avery and pray she will tolerate all her treatments.
Gregory and I pray healing prayers, in the name of Jesus. His hand is merciful and mighty God, wrap your arms around Avery and her precious family. We call upon your anointing power to intervene with this enemy , cancer. It has no place in this sweet baby girl. There are prayer warriors speaking and praying healing May God heal this family’s heart Hang in there. A lot of prayer warriors are lifting y’all up 🙏❤️