All of Alex's scans are done under sedation since there is no other way to guarantee that he is completely still for the test. A radioactive tracer is injected and he must lie still for 50 minutes; during this time, John (dad), Jessica (sister), and I sit with him to ensure that he is quiet and still. (Excessive movement could cause a false reading on the scan since muscle movement and cancer both attract the tracer.)
It's a long morning, which begins when my alarm goes off at 4:30 am and culminates with an appointment with Alex's medical team at 12:40. Alex has to fast because of the sedation, and this time he seems more annoyed at not being able to drink than he is about not being able to eat. He asks for Mountain Dew and is wholly unimpressed with being told he can't have anything. (Alex may be minimally verbal, but he can say Mountain Dew and he can certainly make his displeasure clear.)
There's a lot of waiting, since they require him to report to the PAR (patient arrival and recovery) area a full two hours before the scan. We start the day at the cancer center lab, and they put in an IV and draw labs. Since they've already put in the IV, there is nothing for the nurse at the PAR to do except update and confirm his health history.
We're repeat customers in the PET scan area, and the tech introduces himself, "My name is Donald, we've met before." Alex leaves an impression on people and they always remember him.
After the scan, it's back to the PAR. It's about a half mile walk through the bowels of the hospital to and from the PAR to the PET scan area. The walk feels good since it's a day of so much sitting and waiting. Alex is on the gurney, pushed by a transport specialist, with his entourage in tow. Alex has to be observed for an hour because of the sedation, and they over crackers and white soda. I bring a peanut butter sandwich because by this time Alex hasn't eaten in almost 20 hours and we've learned that he doesn't have any nausea following sedation. He is, however, ravenous. Jess and I go to the cafeteria to grab sandwiches to bring back to Alex's waiting area, and they have chicken tenders, so I grab some. I'm not sure the nurse entirely approved of me giving him the chicken, but we've been through this numerous times before. We also have a short window of time before the next appointment and we don't need to add to everyone's anxiety by being hungry.
Alex gets released from the PAR and we use a wheelchair (because of the sedation, although he comes out of it beautifully) to take him to his next appointment. We get to Grace Clinic early, but it is packed - standing room only. I'm glad that Alex has a wheelchair to sit in. It's almost 20 minutes after his scheduled appointment time before we're called back. Another excruciatingly slow passage of time.
The tech is finishing taking vitals and entering them into the computer when the doctor and PA walk in. They start with small talk and asking about Alex's birthday trip to Disney. We talk about Alex's love of roller coasters and I'm watching their faces, the doctor and the PA, and trying to discern body language. After the brief Disney conversation, the doctor says, "Well, the scan is clear."
He said some more words, something about no cancer, but I can't remember exactly what he said. I was so prepared for bad news, that I couldn't respond. The doctor spoke, and then there was silence. Maybe it was a few seconds, maybe it was a full minute. I don't know. No one spoke. We were all just trying to take it all in.
Then the doctor said no scan for another year.
I guess the best word to describe how I felt, and still feel, is incredulous.
This remission has lasted an unexpected 18 months. When Alex was diagnosed with Hodgkin's, we were told "at least he has the 'good' cancer." While it's true that 80% are cured with frontline chemo, there is no "good" cancer. For those, like Alex, in the unlucky 20%, things aren't so rosy. Alex has had 8 treatments, including a stem cell transplant. He had 10 months of remission after the transplant, and when he relapsed we were told that the options were no longer curative. There were treatments available, but they would only buy time. When he started Nivo (Nivolumab, an immunotherapy, PD1 inhibitor) we were hoping he would be on it for two years and that there would be something new when that drug no longer worked. He developed severe pneumonitis after only four doses and had to stop the drug. We were devastated and then, unexpectedly, a PET scan showed he was in complete remission. Five months later, another clean scan. Now, 11 months after that, another clean scan. Almost 18 months of remission.
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| Alex's medical team at Froedtert Hospital (MCW) - Dr. Mehdi Hamadani and Katie Zellner. |
Here's to you, Alex. You are a brave man. You've fought hard and, for now, you've won. Celebrate.
