I remember every second of December 22nd last year. There are a lot of the details of Sophie’s Lymphoma battle that are fuzzy but this day…this one is burned into my memory like a brand. The second worst day of my life.
On the 20th we had been given the ‘all clear’ to start the numerous tests needed to get Sophie’s stem cell transplant process started. We had a full body CT Scan and GI Tract ultrasound on the 21st. Then the BIG test day was the 22nd.
Aunt Jacy spent the night with Sophie and Jonathan and I got back to Cook Children’s in Ft Worth early that morning. We walked in to Sophie screaming and Jacy was very frustrated. The team at Cooks had come in to start an IV on Soph for her sedation…even though her chest port was accessed. Which is annoying but the port in an infection risk so I get them not wanting to go there. But Jacy had told them that Sophie was a very hard stick…starting IVs had been hell for us for almost 8 months…and that they needed to call the IV team because they have this magical red light that finds a good vein every time. They didn’t listen to her and had already tried to stick Sophie on one hand and in both feet (even though Jacy told them no one, in 8 months had ever gotten a foot line to go in).
Now, disclaimer-Cooks is AMAZING and the staff was amazing….they just didn’t know Jacy or Sophie because we’d only been there for 5 weeks. And they apologized for not listening. It was just very hectic to walk in on an already stressful day to Soph already screaming.
But, we got the IV in finally and calmed her down.
Transport came and took us downstairs to get started. Cook’s didn’t have a PET Scanner so we were escorted across the sky bridge to the next door Methodist Hospital.
It was raining.
A long morning of waiting, sedation, waiting, PET scan, waiting, spinal tap, waiting, bone marrow aspiration, waiting, hearing test, waiting, and heart echo then we were back in our room with a very tired baby. And it kept raining.
My mom, Mammy was there by then to trade off with Jacy and we waited. Results usually took at least 24 hours and with it being 3 days until Christmas, we weren’t expecting any news. So when our nurse came in and said our doctor was coming at 3:00 to conference we were concerned. But at the same time…this was our first day of testing at a new hospital, with new doctors, and stem cell protocol is a big deal so I thought ‘maybe they rush things for stem cell’. It was hope in my heart trying to keep out the panic.
You see, we suspected it was back but we hadn’t said it out loud…not even to each other. We rationalized the bed soaking night sweats with the fact that her tiny body was so weak and exerting her for 3 hours a day in therapy was causing it. We knew her…we knew a spike in her counts was a bad sign but her doctor was positive…and again new hospital-stem Cell…they knew what they were doing. But we knew her. We also knew the chances of it coming back were high. We knew we were fighting an uphill battle…the Everest of hills.
3:00. Time stopped.
I knew the second he walked in that it was back. His face said it all. He had been crying. Out doctor, the pediatric stem cell expert…one of the best in the nation…had been crying before coming into our room to tell us….it was back….it had spread….it was in her entire chest cavity, her bone marrow, her spinal fluid, and was now invading the right side of her heart. And we were done. She was done. Her poor little body wasn’t strong enough for the kind of chemo that would attempt to save her life. If we had tried that, she likely would’ve lost what little brain function she had left…she would’ve suffering more…and still would’ve died.
I was in bed with her and just fell on top of her. Jonathan leaned against the sink counter in shock. My mom had to sit back onto the couch.
She was going to die.
How long? Was our next question.
You know most people hear ‘3-6 months’ or ‘1-2 months’ and I don’t know what i was expecting…because nothing obviously was an expectation for this moment. But when he said…days, maybe hours. I just wasn’t expecting that. The chemo we were giving her was acting like a colander, stopping some cancer but letting some through. So no one knew how long it would take to take over once we took that chemo away.
A lot happened after that. Shocked phone calls to get the word out. Questions of what do we do now? Sobbing on the floor of the chapel. Sobbing in the shower. Walking aimlessly in a fog. Everything was in slow motion. Having the ‘funeral’ conversation.
Because no one ever sits with their spouse and says ‘hey babe, what would our child’s funeral look like? What funeral home should we use? Caskets, Flowers….’ imagine that conversation….then multiply it times 500 and you might get it.
But we had to have that conversation. While the shock was fresh… before it set in. I wanted that out of the way. I didn’t want to be worrying about planning things after. I just wanted to be her mom.
And that’s what I did.
The next day, two days before Christmas we were moved back to Children’s Health in Dallas. Our families helped us pack the room and Ronald McDonald and we put our baby in her car seat for the last time and drove her. I sat in the back next to the car seat….just as I’d done hundreds of times before….but this would be the last.
The fact that that was able to happen at all, let alone so quickly, was a miracle from God.
Even though Cook’s was great…Children’s was home. They knew and loved and cared for her for 7 months. And I wanted them caring for her at the end. Because I was done being nurse and caregiver. I wanted to get in that bed and be mama. To read books, watch movies, sing songs, rub hands, kiss cheeks, and stare. Just stare at her while I could.
And I did. For 13 days. When time stood still.