Tuesday, October 13th
It was another rough night. Avery woke up around 1:30 am in excruciating pain. She wasn't able to have pain medicine yet, so we gave her Tylenol. Thankfully she fell back asleep, and we were able to give her pain medicine when it was due. She woke up in the same pain this morning, but another dose of pain medicine was able to give her relief and allowed her to feel well enough to play a little.
She didn't require blood or platelets today, and her ANC had risen to 10. She has continue to run fevers on and off all day. Our biggest concern for the day was trying to find the source of her pain. They ordered an abdominal and pelvic CT this afternoon. The scan revealed that she has Colitis/Typhlitis. She is already on Flagyl which is the correct antibiotic to treat this. We have temporarily stopped her feeds to give her a "bowel rest". Typically that also means no food or drink by mouth as well, but we are just going to start with feeds first. We will continue to try to stay on top of her pain, but unfortunately, she may not get much relief until her counts rise and her body can help fight it off. This afternoon and tonight she was also hit with the diarrhea that often comes along with this ailment.
We met with the Radiation Oncologist to discuss the plans for Avery's radiation. She will receive radiation 5 days a week M-F for 6 weeks. Because of her age and anxiety, she will have to be sedated daily for this. This will be Craniospinal which means to the full brain and spine. They will also target areas of the brain with extra boosts as they see necessary. Short term, she will experience nausea, fatigue, difficulty swallowing, skin irritation, headaches, low blood counts, neutropenia, and possible short term memory issues. Long term, she may experience hearing loss, secondary cancers, heart trouble, learning disabilities, endocrine issues, and her growth will be stunted. It will take her hair much longer to begin growing back than compared to chemo treatment. The goal of radiation is to see the disease shrink or possibly disappear, but it is considered a success if the disease simply remains stable. As with everything in this journey, it is a lot to digest and adds new worries to our already overflowing plate. It is difficult to accept that Avery's future may not ever look like we originally dreamed it would be, but our goal and hope right now is to simply give her the opportunity for a future.
Please continue to pray for:
- Relief from stomach pain
- No more fevers
- Rest
- Recovery
My heart is broken and through tears I read your post. I still believe God will save this baby, and I will not stop praying and asking for His will be done. Love to you all.
My heart goes out to you Lori Beth and Shon. No parent or child should ever have to go through this. Stay strong in your faith and know he is always with you. Believe, trust and hope. Prayers, love and thoughts always are with you and your family. 🙏🙏🙏🙋♀️❤️🌻👨🏻🚒💪🏼💪🏼💪🏼
Lori Beth, Shon and precious Avery our prayers are for a complete healing and a bright future for Avery here with all of you! Hang in there Mom and Dad, you are doing a great job! Please give her a hug for all of us s in the Waters family. God bless you with everything you need.
Continuing to prayers for sweet Avery. Praying for the entire family.
My prayers are always including Avery and the family. My heart aches that she and all children with cancer have to suffer so but hopefully all the treatments will give them their future. Love you all and hope the pain goes away quickly for that sweet "Hero". Loyd is in our prayers also and Deb.