I’m pretty sure, actually definitely sure, this is not what Taio Cruz wrote these lyrics for, but man do they fit our day.
We had a plan. One that I wasn’t too comfortable with, but had come to accept. Ava was supposed to be gone one night. She was supposed to be back home with me tomorrow. She’d returned for chemo on Friday and then continue to go to every Friday until the CAR-T cells were ready. When my girl left me this morning at 4:30 a.m. that’s how we started the day. Ava’s surgery went well. She handled it like a champ and I somehow was able to teach. It felt like maybe this would work well and we’d be fine.
Then during my planning period I got a phone call from Kevin and Dr. Cooper letting me know that our understanding of AJ not needing to move into Interim Maintenance was not correct. After rereading the 1721 trial guidelines and putting in a phone call to the study head her oncologist learned that actually AJ would need to begin IM at the earliest Friday or at the latest Tuesday. During IM she will need to check in and stay for 3-4 days until the high dose methotrexate has cleared her body. Ten days later they she will got back and do it all again. She will do this 10 day cycle until her CAR-T cells are ready. This was the first bummer of the day. I didn’t think it was fair to ask her pick a weekend stay so that I could stay with her and so we left it up to her. She chose to begin Friday, I’m pretty sure it’s because she put my needs in front of her own. Somehow this child I’ve been blessed with has turned into this caring and amazingly considerate young woman who constantly leaves me in awe. So while I was stewing over the change in plans, she rolled with it. She was okay with coming home for a day and then heading back to four.
Around 2:00 they got Ava in a room on 11S. They began the apheresis around 2:45. Things were going well for about an hour and a half. Then the machine stopped working and for some reason it could no longer pull blood from her. They had to stop for several hours to determine if the problem was due to a blood clot around the line placement or a kink in the lumen. Shortly after Ava FaceTimed me in frustration. Seeing her upset that it wasn’t working and that they’d gotten minimal blood simply broke my heart. After speaking to Kevin and her CAR-T nurse we learned that if she had to continue the process tomorrow she would not be discharged at all before beginning IM. They would do an X-ray to determine if it was a clot that they could give medicine or if it was a kink which would require another surgery tomorrow to replace the line.
Around 8 pm Ava FaceTimed me again to let me know they were stopping for the day. She told me she was tired, wanted to be done, and didn’t want to do this anymore. Somehow I made through this phone call without bursting in to tears. I cannot adequately express how I feel knowing my daughter hurting and I’m not there to help her. It’s the same feeling I have when I’m at Hopkins with her and leave Kohen and Ellie at home. No matter where I am, I’m failing.
Around 9 pm Kevin FaceTimed me with Dr. Cooper to discuss the finding of the X-ray. It turns out it was a small blood clot so AJ will be receiving medication to clear the clot and could potentially begin pheresis tomorrow. They then told me that there was a chance they collected enough cells today and she may not need to continue. Unfortunately we won’t know until the cells are reviewed tomorrow afternoon. If they have enough cells AJ could begin IM tomorrow meaning she wouldn’t come home, but could be back earlier than if she started Friday.
The level of uncertainty that comes with cancer is through the roof. I’m heading to bed with no idea what tomorrow will bring, but peace in my heart because during our last FaceTime sweet AJ was back to smiling and being her positive self. The only certainty I have is that this child of mine is a warrior.
4 thoughts on “I throw my hands up in the air sometimes saying ayeoh, I gotta let go…”
I am in total awe of Ava’s courage and strength! Praying for her and your family❤️
Hang in there sweetie. Praying for you and the rest of the family for their strengths. Love you.❤🙏🙏🙏🙏🙏🙏
We are praying for her prompt recovery!! God is in control at all times! Much much love to all of you!♥️🙏🏻🙏🏻🙏🏻
Sending you prayers. You do have quite a warrior! God bless her and all of you.