I sat in ICU Saturday morning sobbing silently next to the bed as Izzy slept. The ICU doctor had just come in with news that she was critical. Not able to make sense of what had happened in only a matter of hours I could do nothing but cry. My mind wandered back to the days leading up to that moment.
On Wednesday we had received the wonderful news that Izzy’s final scan was clear. She had No Evidence of Disease. We still had a long road of treatment ahead of us, but we had made it through the first phase as successful as possible.
Friday evening around 6:30 we told the kids the biggest surprise ever. A company had adopted our family for Christmas and was sending us to Disney World on Sunday! Carter was most excited about missing school but Izzy was ecstatic! She began planning out the days and talking about which princess dress she’d wear each day.
But around 10:00 that same night as I lay in bed next to Izzy I begin to feel her body shake next to my own. I was cold, so I covered her up with another blanket and snuggled closer to her. Five minutes later, still shaking, she sat straight up and started throwing up. I still wasn’t concerned because she throws up a few times a day. But as she sat there she continue to shake, harder and harder.
I took her temperature and quickly found that it was elevated enough to require a trip to the ER for labs. We knew that her count was 1900 just the day before so I had high hopes that it was just a virus and they would send us home. But once we got there we found out her counts had dropped to 300. Anything below 500 with a fever automatically requires a 48hour admission on IV antibiotics. Normally it wouldn’t have been a big deal, it was just protocol, but this meant we couldn’t go to Disney. How would I tell her?
I had just taken her to the ER right by our house and she needed to be hospitalized at a pediatric hospital. They started her antibiotics and called for an ambulance. By 4am we were admitted to Riley North. They we’re out of regular pediatric beds so they put her in a bed in the Pediatric Intensive Care Unit. They assured me she didn’t need to be in ICU and would be moved in the morning. But when they took her blood pressure I knew something was wrong. 46/17 the machine read. They took it several times to be sure it was right, but soon found that it was. The doctors and nurses were talking and I couldn’t understand what was happening. They quickly started her on some blood pressure medicine and we tried to get a few hours of sleep.
By 7am Saturday morning, they understood what was happening but no one had told me. I was abruptly woken by a doctor who came in to tell me she couldn’t have anything to eat or drink in case they needed to place her on a ventilator later in the day. I looked at him with confusion. “I don’t understand. Why would she need to be ventilated?”
I could tell he thought I was an idiot as he explained. “You do realize that your daughter is critically ill? She’s septic, that’s why she’s in the ICU. Her blood vessels are leaking and the next thing I expect to see is her lungs filling with fluid. I want to be ready.”
What? I had no idea what was happening. I thought we were in ICU because they were out of beds in PEDs and this guy was the first to mention anything about sepsis. Clearly there had been a shift change in doctors and somehow, someone forgot to tell me some crucial information.
As soon as he left the room I called our hospital in Cincinnati. I knew the doctor on call that day and as soon as I relayed the information to her I could hear a change I the tone of her voice. I knew something was wrong. She started making phone calls and would call me back later. But for now I just sat next to Izzy’s bed and wept.
We had made it this far, all the cancer was gone and now I risked losing her to an infection two days before our Christmas celebration. We should have never told the kids about the trip. We should have waited until we got to the airport just in case something went wrong. But I was tired of waiting for something to go wrong. I’ve spent six months doing that and I just wanted her to have a couple days of anticipation. But now when she woke up she would be heart broken.
And sure enough, she was. The first thing she said through tears was, “I have to go home. We are leaving for Disney World tomorrow.” And she just continued to cry. Harder now because she knew we wouldn’t be able to go. We never even had to tell her.
I later found out that what can sometimes happen if they have an infection their blood is that starting the antibiotics can break up the bacteria throughout the body and through them into septic shock. So it wasn’t just a coincidence that she was okay at the first hospital and not here, the antibiotic she began receiving at the first hospital had pushed the bacteria out into her body by the time we got to the other hospital. Now her body was reacting. Understand? Neither did I the first time, but I had to keep going.
The rest of the weekend was long. We made another ambulance trip that night, but this time to Cincinnati. She was in ICU until this afternoon when we were moved over to the oncology floor. While her vitals remain stable, she continues to spike high favors accompanied by violent chills and aches. This leads them to believe that there is still a source of bacteria inside her somewhere. They decided to have her central line removed as soon as possible, which will be around midnight tonight. There is a lot that needs to happen between now and next Thursday, the day we are admitted to Stem Cell. They hope to get us home for Christmas but I never get too excited until I see discharge papers.
Someone asked me a few weeks ago how I do it. How do I keep going? Well, the truth is I’m not exactly sure. To be honest I don’t think any of us ever think we have what it takes to get through something like this. Or God forbid something like the school massacre in Newtown. But some of us are forced to find what it takes. I’d love to tell you it was my faith because that sounds like an answer to be proud of. But the truth is my faith waivers on a daily basis. It’s not what we believe about Him or how we try to live our lives. It’s not the way we go after God that gets us through. It’s the way He relentlessly goes after us. Day after day He continues to pursue us offering us gifts of peace and gifts of rest. And somedays He just sits and cries with us by the bedside of our child because this broken world grieves His heart too.