Wednesday, September 9th
It was a long tough night followed by a long tough day. Shortly after Avery fell asleep last night, she woke up screaming in pain. We thought it was her rash on her bottom causing the issues so we continued to use creams and pastes to try and soothe her to no avail. They ordered Tylenol for the pain. She had worn herself out and finally fell back asleep after midnight. She whimpered and cried out all night long. Around 2:30, she woke up again screaming in pain. The ordered a one time dose of oxycodone. This helped with the pain and allowed her to finally rest.
Her platelets were 41 this morning, so we started the day with a 4am platelet transfusion. Her Hemoglobin was still good, so no blood was needed. Her ANC is still zero.
We discussed the pain and the rash with the team. They ordered oxy every 4 hours as needed and a hydrocortisone cream. Avery continued to wimper and cry out all morning. She didn't want to put any weight on her right leg and didn't want to sit down on the potty when I took her to the bathroom. After constantly peppering her with questions and observing some of these behaviors, I came to the conclusion that her pain was not all from the rash as we originally thought. We ordered her a dose of pain meds, and she quickly fell asleep. We called the team back in to discuss the new concerns, and our NP came up to talk through it with me as well. Given these new symptoms, along with some other random things we were chalking up to chemo side effects, they believe that disease progression in her spine may be the culprit. After discussing with our oncologist, they made the decision to move up the MRIs from Monday to tomorrow.
Avery has continued to be in pain most of the day. The pain meds are wearing off after 3 hours or less, She will not sit up or get out of bed and has refused to since before noon today. Her latest dose of pain meds has not put much of a dent in her pain, so we are requesting something stronger. She is giving more to her right leg and only moving it slowly and cautiously in bed. We hope to get a handle on her pain so she is able to rest.
Unfortunately, there was no fun or smiles today. Avery did manage to throw me a grin as she pulled out chunks of her hair(that has started falling out) and handed it to me. She has a haircut coming in her near future, but we've left the decision up to her on when she wants it done.
Please pray specifically for:
- Pain control
- Rest
- No disease progression in her spine
- Answers and a plan to provide her quick relief
Rest well sweet Avery!
We lift you up for healing and comfort! May God’s face shine upon you!
In His Holy name we ask it.
Amen.
Sweet girl and family, there are more people praying for you than you can imagine! I hope you draw strength from my prayers as much as you give me inspiration for your brave fight!
Friend of Aunt Lana!
Love and prayers!
Susan
Scottsboro
Praying the pain can be controlled, rest for Avery and you (and regained strength ), no disease progression in her body, answers for a plan for relief.
LB I am so sorry.....I am just heartbroken you all have to endure this. We continue to pray over sweet, strong Avery and for your entire family. <3
Praying for pain to be controlled and that she has not had any progression with her cancer! Rest and peace for you all!❤️❤️❤️🙌🙏🙏
Praying for pain management, rest, and no disease progression.