Another lengthy amount of time has gone by between updates about Eva. The reason is mainly this—there isn’t a whole lot to report except that Eva is going about a normal routine as a normal kid. She’s going to school. She’s playing at the park. She’s going on walks. She’s visiting the zoo. All normal things.
She also continues to take oral chemotherapy every day along with monthly visits to the clinic at Rady Children’s Hospital for a chemo infusion. This is our “new normal.”
Last Monday, February 5, was another one of those normal monthly visits to the clinic. I accompanied her that day. Everything went as expected, which is to say it went well. Good “counts” on her blood test: good immune system, strong hemoglobin, everything in order. She received her infusion and we headed home. Eva had a fun rest of the day and was as active as she would be any other day.
By the evening, though, she reported feeling not too well. Audra took her temperature and discovered she was quite suddenly running a fever of 101 degrees. You may recall that fevers are closely watched in oncology patients since they are an early sign of infectious disease. Infectious disease is particularly problematic for patients with any kind of compromised immune system. While Eva’s immune system is relatively strong in this phase of her treatment, mandatory protocol requires that we treat any fever with special attention. If her temperature reaches 101 or higher it is a required trip to the clinic (during business hours) or emergency room (outside business hours).
So off Eva and I went down the highway to Rady Children’s Hospital for the second time in one day. It was outside business hours so we were heading to the ER. When we first told Eva she had a fever she cried (the prospect of visiting the hospital is never fun, especially when it carries a chance of admission overnight). We reassured her of the reason for the trip to the ER and explained that her fever was not her fault. Audra put her in the warm shower so she’d be clean and comfortable in the ER. During her shower, Evas cheerfully asked us to call the doctors to tell them that the shower was making her feel much better and perhaps she could stay home. I had to tell her the hard fact that no matter how well she felt, what mattered was the reading on the thermometer.
We walked into the ER and virtually every seat in the waiting area was packed with parents and small children wearing masks. It’s the height of flu season these days. (Indeed, several young people in the area have tragically died of flu complications this season.) Thankfully, oncology patients are triaged immediately to a smaller, more secluded waiting area. We waited probably a little more than 30 minutes before being seen.
The first step was to access Eva’s port again—another poke on the same day. The ER nurses have plenty of experience with the process, but they don’t have the daily habit that the clinic nurses do. Unfortunately the two nurses helping us failed to get a good access the first time. They spent several minutes trying to get the needle they poked into the port to “return” properly, that is, to allow blood flow out and fluid flow in. Poor Eva was already exhausted and this pushed her over the top. She cried out again and again, “I want to go home! I don’t want to be here! I can’t do this anymore!” It broke my heart, but I had to hold her in my lap until the nurses decided to try a second time.
I also felt for the two kind nurses. They were probably as distraught as Eva was, but they were utterly professional about it. The nurses at our children’s hospital are consistently amazing. They were quite upset at themselves for not having gotten a good access the first time. And, truth be told, this happened once even in the main clinic where the nurses have daily practice with accessing a port.
The second time was the charm, but by this time the numbing cream we had applied to Eva before leaving Fallbrook had mostly worn off. The topical cream stays on her port area for the entire drive down, but the nurses wipe it away when starting the port access procedure. Once the ointment has been removed the effects begin to wear off. So, by the time the first attempt had run its course and the second poke landed, Eva screamed and said it was the worst it had ever hurt. Clearly the pain level was higher than she was accustomed to.
Once she was settled in after the troublesome port access she was able to relax. We both composed ourselves with a long hug. She watched some TV shows and played some games. I read a book. The doctor visited and gave her a quick physical examination. They administered an intravenous antibiotic and some Tylenol. Eva’s heart rate was elevated so they gave her some intravenous fluids as well. After more than an hour of waiting for drugs to drip into her system Eva asked me to read her a story, which I did. Within minutes she had fallen asleep. About 45 minutes later the doctor had given us the all-clear to head home. We had arrived to the hospital at about 8:00pm. We left at about 12:00am. As I buckled her into the back of my car, Eva smiled at me sleepily and said, “Thank you, daddy, for taking me to the hospital.”
The fever did not return the next day, and her blood test results came back negative. Whatever caused the fever was in and out of her system within hours.
The trip was another rude reminder of Eva’s not-so-normal health status. We’re glad for the due diligence and agree completely with the protocol, but an unplanned trip like this one brings back the sense of helplessness that so characterized the early days of Eva’s diagnosis. This can only ever drive us back to the arms of the one who rules over all things—including this trouble—the Lord Jesus Christ. He is Eva’s redeemer in both body and soul. The maladies that seem to define Eva’s life do not rule over her. There is no tyranny in the kingdom of Christ, only mercy and a gracious reworking of all things for a good that transcends all things. This is our source now and our end forever.