Consolidation Day 41: Rough Waters

The past two days have been pretty rough for our little princess. Friday was Scarlett’s fourth day of chemo this week. It started off fine – a “simple” 45 minute infusion followed by de-accessing and then home. Scarlett hates getting de-accessed. The nurse removes the dressing over her port and then removes the butterfly needle that delivers her medications. She has always struggled with removing the dressings. She has very sensitive skin and the dressings are very sticky and painful to remove. She tries to curl up into a ball and cries every time. But this just makes the process worse because it’s harder to remove the patch when she’s all curled up. She made it through and Brock brought her back home.

Just as they were getting home, the office called and said that her lab results had just come in and they needed her to come back to get a blood transfusion. In order to get that blood, her port would have to be accessed again and then de-accessed when she was done. This made me absolutely irate. Not only was it not convenient to have to worry about getting Tate and Evie taken care of and drive back to the hospital but that meant two more painful procedures in one day and an increased risk of infection. Every time her port is accessed, there is risk of infection. A port infection can lead to sepsis because that tube goes straight into a major artery. So Brock brought her back, waited an hour for a cross match and then three hours for the infusion. We were just upset that she was discharged before her labs came back. She wouldn’t have had to have been accessed again if they had just waited.

After she got home, Scarlett was very agitated. She wouldn’t eat supper even though we had her favorite pizza. She finally told me as I brought her up to bed that she had a tummy ache and wanted to throw up in a bucket. While she was vomiting, we realized that through her 8 hours at the clinic, they hadn’t given her any anti-nausea meds. Once that nausea starts, it’s really hard to get it back under control. She has been sick to her stomach and crabby all day today (and who can blame her). She vomited again today.

As I gave her a bath tonight to clean her up, I looked at her and, for the first time, I saw that my baby is truly sick. She is so tiny and frail looking. She asked to go to bed at 6:45 tonight. I rocked her as long as I could and just looked at her. She lay limp in my arms, sleeping peacefully, I looked at my poor baby with her little hat on her head, her arms and legs so skinny, and her chest so thin that you can perfectly see her port – all three bumps and even the color purple through her skin. Tomorrow will be the same day in the cycle that she was admitted to the hospital last time. I think that of we can make it through tomorrow, I may feel a little better. I’m so afraid of a repeat of the last cycle. It was physically and emotionally exhausting. And I wasn’t even the sick one! We are hoping that after the next 16 days, she will have a week or two to recover again. Then it’s another eight week cycle, followed by another eight week cycle. And somewhere in there will be 9 sessions of radiation. It’s going to be a long winter and I don’t think I will ever be as happy to see the spring as I will in 2015.