Neutropenic Day 8

Thursday, September 10th

Avery's pain continued to progress through the night. By 10:45 last night, her 9:30 dose of pain medicine hadn't provided an ounce of relief. They ordered a one time dose of IV morphine. As soon as she received the morphine, she vomited, so we gave her something for that too. She finally drifted off to sleep right before midnight and was able to sleep until about 4am.

Her platelets were 46, so she received a platelet transfusion about 4:30 this morning. She started showing signs of pain again at this time, so she received another dose of oxycodone. She slept until right before 8am when the pain woke her again. Our amazing nurses advocated greatly for her and had worked with the team to get her on scheduled morphine before shift change even occurred.

Despite the added meds, she was so far behind on pain management, that her scheduled dose of morphine plus an extra boost did not ease her pain this morning. She cried out and whimpered in pain all morning. When it came time to take her for her MRI, I had to pick her up to carry her(as we always do). She screamed in pain and continued to scream all the way to the 1st floor. We transferred her to a bed and had to leave her as she was being wheeled into MRI still screaming in pain. Thankfully the sweet nurse from imaging was able to deaccess and reaccess her port while she was asleep to save her any additional pain and trauma today.

A couple of hours later they wheeled her back up to the room. She was still hurting badly and now mad from the anesthesia. Even after a dose of morphine, we still could not even get her settled enough for a blood pressure reading. While she was in MRI, Shon and I met with the palliative care team to come up with a better plan for pain management. They increased the size of her oxycodone dose and scheduled it for every 4 hours. They also added an "as needed" dose of morphine available every hour. Once she was able to get her afternoon pain meds, she settled down and watched the iPad. She still doesn't want to be touched or moved at all.

Good news - Her MRI showed that it wasn't new disease causing her pain. Her overall tumor burden was reduced by 25% with some specific areas seeing a 50% reduction in size. This means that the chemo did its job well which is what we had been specifically praying for.

Bad news - We still don't know the source of her pain. Tomorrow they will do an ultrasound to rule out an abscess or blood clot. Since she has zero neutrophils, her body would not respond to an abscess or infection like a normal body would. Indicators such as redness, swelling, and pus would be absent. If they rule those things out, they will look into bone pain as a possibility. We need answers and a solution fast to get Avery out of pain.

She has not spiked any more fevers, but she has come close a time or two. Her ANC still remains at zero, so we need that to start rising. We will discuss next steps in regards to treatment with our team soon. Her count recovery could play a big role in what we do next, as we don't have time to allow her an extended recovery. It's a terrible position to be in knowing that we are about to put her back through this same pain and misery with another treatment.

99.9% of the day was downright terrible, but in the midst of it all, she managed to give us one smile. It's things like this that allow us to hold on to hope that there will be better days in the future. And, it is that hope that allows us to make it through the hard days.

Please continue to pray for:

- Quick identification and resolution of Avery's pain

- Successful pain management

- ANC to begin rising

- Wisdom and guidance for the next steps of treatment

- Rest