I recently auditioned for the 2013 Listen To Your Mother show in San Francisco. I was not one of those chosen to join the cast for this year’s show (a mere 14 out of 54 auditioners), but I was happy just to audition and read my words aloud. Sometimes you don’t realize how powerful something is until you hear it out loud – and see others’ reactions to the words spoken. After reading my piece, the two reps for LTYM and I let out the breath we’d been holding. The reading was intense – just like the days described!
This is an edited version of the raw, harried one that was published over a year ago. I’m proud of how it turned out and wanted to share it even without the benefit of spoken word. I think that this story perfectly describes the ups and downs I experienced with Jack’s diagnosis.
It began when my 5-year-old son Jack seemed less energetic than usual. His temperature was slightly high, but he didn’t have a fever. He had aches in random parts of his body. Weirdest of all, he was becoming extremely frustrated with his favorite activity – Lego building – and seemed to be losing dexterity when trying to fit the pieces together.
While his symptoms were all minor and inconsistent, I couldn’t shake the feeling that something was off. I booked a clinic appointment to get him checked out.
Naturally, Jack perked up the afternoon of the appointment. I even thought about canceling the visit but my husband encouraged me to keep it just to be safe. I felt a bit silly – he was probably just fighting off a cold! I was totally going to be dubbed a paranoid parent.
“Doctor, my son can’t put Legos together! I think he might be dying!”
During the exam, Jack was his smiley, goofy self and barely seemed sick at all. It figures, I thought.
The pediatrician suggested that Jack was probably fighting something off, and maybe he was also low on iron. If I wanted, I could give him iron supplements.
He then turned to leave the room but glanced back at Jack and paused… “I know he has a light complexion anyway, but does your son look paler than usual to you?” I said yes, definitely, and I pointed out the circles under his eyes, as well. The doctor then asked if we wanted to confirm anemia with a blood test. Sure, I said. I didn’t want to have to come back in a few days if Jack still had this weird bug or give him vitamins he might not really need.
Much to my surprise, Jack didn’t get a finger prick like I did when they tested my iron during pregnancy. Instead, several vials of blood were taken in the lab. I thought it was strange, but I was too busy trying to calm Jack’s fears about the needle to ask any questions. And by “calm Jack’s fears,” I really mean “hold him down bodily.”
Despite the traumatic blood draw, we went home feeling somewhat reassured. The doctor had even told me I could send Jack to school the next day.
The next morning the test results were online before I even got out of bed. I opened them immediately…
Okay, so, hm… low neutrophils? What are neutrophils?
Decreased platelets? What the heck does that mean? And what is WBC Other?? Jack’s been trying to tell me for years that he’s an alien. Maybe he was onto something!
Or maybe that is just what happens when someone has low iron or is fighting something off. His white blood cells are at the higher end. And what do red blood cells do again? That’s probably not good that those are low… Okay, lemme go look at the iron test…
Well…his iron looks great! Yay!
But…uh…what does that mean for that other stuff then?
I then did the absolute worst thing a parent can do when faced with a medical mystery – I started Googling. And I’m sure you could guess what kind of results I got – Dr. Google said it could be anything from a staph infection to Lupus … TO CANCER?! My heart in my throat, I shut my laptop and headed to the phone – I needed to talk to a doctor ASAP.
The doctor wasn’t in yet so I spent some agonizing time waiting for a call back. To be safe, I decided to keep Jack home from school. While I was thinking about calling in sick to work, the doctor called me back. He told me that Jack was anemic, but not due to low iron. He wasn’t quite sure what was going on, so he had to speak with a specialist. He said he’d call me back.
By this point, my anxiety was through the roof. Thankfully, I didn’t have to wait long for the second callback. The doctor told me that Jack would be admitted for monitoring – probably overnight – and I needed to take him to Oakland where the pediatric specialists were located. Then he said something that really alarmed me:
“I’ll be watching Jack’s case closely, and here’s my direct extension in case you have any more questions…good luck.”
Oh God, I thought! This doesn’t happen! Doctors from big HMOs in San Francisco don’t give you their direct extensions! SHIT! Something is VERY wrong!
I hung up and buried my head in David’s chest to cry for a few minutes before taking an Ativan to control my panic. I then steeled myself to get Jack dressed and out the door without alarming him. I packed snacks, his magnedoodle, and a few books, and off we went.
Things are kind of a blur from there – stats and vitals were taken by a million doctors and nurses and interns. I think everyone except us knew what was going on with Jack – they just didn’t want to tell us until it was 100% confirmed. They did say that his blood test had caused some alarm because it appeared he had some odd cells and that could either mean they screwed up the test (which was the hope!) OR, if the test was accurate, he could have leukemia. They wanted to repeat the blood test to make sure.
At the end of that day, I was really hoping for Lyme Disease. My friend Becky said she was on Team Mono. I decided that would be okay – just please, NOT cancer. Please, something less dangerous than that.
The next day, it was confirmed that my son had Acute Lymphoblastic Leukemia and we had a 3.5-year battle ahead of us.
It was truly just the beginning of our journey.