Wednesday, January 29th
Avery had a tough night last night. She continued to struggle with pain and kept spiking fevers. At 2am she had a temperature of 103.1. They gave Tylenol, took cultures, and did all the things they normally do.
Her weight was up again this morning, so they gave her another dose of Lasix. Her pain continues to breakthrough about every 2 hrs despite the morphine drip, so they increased her drip again.
Her temperature hit 106.3 around 8am. They ordered more Tylenol, a cooling blanket and continuous monitoring via the pulse ox and chest leads. She felt so miserable that she barely put up a fight. Her O2 sats had dropped to around 90/91, so they ordered oxygen for her. She wouldn’t wear the nasal cannula(no surprise there) so they set up a blow-by oxygen delivery which is where a mask is set up pointed towards her face. It seemed to do the trick and get her sats back to where they needed to be. Her heart rate has been hanging out in the 130/140s most of the day due to the fevers. They also ordered a Chest x-ray and abdominal ultrasound. So far nothing looks out of the ordinary.

Her temp lingered at 103 for a good part of the day and finally made it down to 102.6. It is back up to 103 tonight an hour after receiving Tylenol. They started her on a third antibiotic, Gentamicin, to broaden her coverage. Her cultures have all come back negative so far.
She has continued to have breakthrough pain all day and has been receiving extra doses of morphine as allowed. You know the pain has to be bad for her to ask for medicine. Her mouth is so swollen and full of sores, it is pitiful. We are all ready for her to get some relief, but unfortunately it won't come until her ANC begins to rise.
And because she just couldn't seem to catch a break , today happened to be the day to change her central line dressing. Her poor skin was raw and awful underneath the dressing from the Thiotepa. She cried out in pain as they had to sanitize the site before placing a new dressing. They placed Mepliex between her skin and main dressing to help protect her skin and prevent any infection. Thankfully, she only has to have a dressing change every 7 days.
Her platelets were down to 49 tonight, so she is about to receive a transfusion. Once the transfusion is complete, they will push another dose of Lasix to level out her fluid intake and outtake.
This has been her worst day yet throughout her whole chemo journey. The one bright spot of the day was that she hasn't vomited even once. We are praying for engraftment(when the blood-forming cells you received on transplant day start to grow and make healthy blood cells) to take place soon to give her some relief, but we are still a few days out(at minimum).
Please continue to pray for:
- No more fevers
- Pain management
- Rest
- Engraftment to take place soon
Dear God, please heal this precious baby. Give her family the strength to help sweet Avery through this challenge. She is one special, tough little princess. #brAVERY💕💕
As you said, these are the toughest of days and you and Shon are still faithfully standing by her side. How faithful you are in loving your baby girl and taking care of her as only a mother can do. You feel her pain and weep with her through the suffering. We all wait to hear the better days that are coming! Times of joy and laughter with the whole family celebrating her victory! Stay strong!
Bless her heart. Thank you for keeping us updated. Continued prayers for all of you. 💕❤️🙏
My heart breaks into for Avery and all of you. Oh God please please be with this precious child. She has endured sooo much. Please please God grant her some rest. Prayers for no more fevers and for her pain to be managed so she doesnt have to suffer. I don’t understand all of the medical terms but I do pray that the next step, engraftment, will take place as soon as possible. Please God fill that hospital room with your presence and your peace. Praying that tomorrow will be a better day.
God bless her little heart😔. And her family also.. As I have followed along this journey with Avery,it has been amazing how she is such a fighter! Not very many adults could endure what she has..I just want to say my heart hurts for her,and mom and dad also. To have to go thru this with your child I know is almost unbearable.I just want you to know I care,I love to see those little smiles. I pray that she will have a break thru,that God will touch her small body and make it whole again. I lost my oldest granddaughter to a car accident in 2008, she was 17 and had been with me most of her life... And…