One Breath at a Time

4 in, 8 out

Four counts in through the nose, eight counts out through the mouth…over and over. I breathed myself through the scariest moment in my life, while hearing the distant background sound of Robots in Disguise on Netflix. 

My five-year-old-son, Quincy, and I were in the ER, waiting on results from a blood test  - does Quincy have Leukemia?  The blood was drawn an hour ago, and at any moment, a doctor was going to walk through that door and give me either the worst news of my life, or the best news. I wasn’t allowed to crumble in front of him. 

So I breathed.  Four counts in, eight counts out. 

Quincy’s elusive sickness started May 2020 and went on for nine months, undiagnosed. 

It baffled every single specialist who crossed paths with him.  

It started with high fevers of 105 that would last at least six days, coupled with vomiting and nausea.  A blood test with the pediatrician showed extremely elevated inflammation levels (CRP) and we were whisked away to the ER for a rapid admission to Rady’s Childrens in San Diego.  A kid with inflammation that high should be in a coma, yet Quincy was doing jumping jacks on the hospital bed.  They watched him for 5 days until his CRP came down and released him. No diagnosis, no treatment. 

Two weeks later, we were back at Rady’s again for the same reasons. This time they thought he might have Kawasaki’s Disease, or MIS-C even though he tested negative for COVID and had no antibodies. They gave him an infusion of antibodies (IVIG) which meant his vitals had to be checked every 5 minutes for a few hours - scary!  They hoped the IVIG would bring his inflammation down. Four days later, we were sent home. No diagnosis. No treatment. 

Ten days later, guess what, Quincy was sick again. He was basically caught in a pattern of being terribly ill for 6 days, and perfectly fine for 10.  And that went on for nine excruciating months.

Symptoms during these episodes: 

High fevers

Nausea

Vomiting

Joint pain - sometimes he couldn’t walk

Swollen lymph nodes - sometimes his mouth was swollen shut

Sore throat

Mouth sores

Adrenaline rushes

Night terrors

Night sweats

Constipation

No appetite

The symptoms would not all be present for every episode. But that’s the painful list of everything this little guy had to endure at least twice a month.

He was placed under the care of the world renown fever specialist, Dr. Harold Hoffman. He thought perhaps Quincy had Hyper IGD, or Bechets Syndrome, or PFAPA or some kind of Period Fever Syndrome, but after a while, he admitted that little Q is not meeting the criteria for any syndrome.  

Massive genetics tests, micro organism tests, bacteria, fugal, viral tests…X-rays, EKG, Ecco Cardiograms, MRI…everything was considered to pinpoint Quincy’s illness, and everything came back negative. (They did find that his left ventricle was slightly dilated and was pumping out 10% less than it should.)

The list of Specialists we saw:

Allergy/Immunology (Fever Syndrome)

Rheumatology

GI

Kawasaki/Cardiology

Infectious Disease

and finally..Oncology

We were accepted into the Mayo Clinic in Minnesota and had an appointment for May 2021

We also were in the process of getting into LA Children's

We took him to Dr. Charley (chiropractor), Dr. Drolet (Chinese Doctor), Dr. Tran (Naturopath), Dr. Hoang (Osteopath) and they all had either an elixir, herbs, drops or little pills for Quincy, and he took them all… and they all seemed to work for a while, but his illness came back with a vengeance each time. 

The Rheumatology Specialist thought he had a brewing autoimmune disease. Perhaps Juvenile Arthritis or Chrones or maybe Uveitis. NOPE. 

In January 2021, Dr. Tran, our lovely naturopath who helped my sister Marcy gracefully pass away from ovarian cancer (more on that later), had drawn Quincys blood. She called me with an urgent plea to take him to the ER for a rapid re-test. She found 1% immature cells in his blood.  She said she had alerted the ER and already talked to Oncology and Hematology and they were all waiting to see his blood. So, deep breaths. I called Andrew to let him know, and off we went. 

So there I was, four counts in, 8 counts out…Robots in Disguise… extreme focus…Optimus Prime saving some kid from a giant evil crab robot… 

The ER doc casually walked in, “So tell me more about Quincy’s fevers”

Seriously, shift change meetings in the ER need to be reevaluated. This doctor was not informed as to why we were there and the severity of my stress level.  In hindsight, it pisses me off.  There I was about to shatter into a million pieces and she had no clue we were waiting on a Leukemia diagnosis!

I said, “Wait a minute, did you get his blood work back, is he ok? Did you find any Leukemia”?!

“Oh, no! He’s fine. He’s clear. We did not see that 1% that your naturopath saw”. 

But it was there… it was hiding in his bone marrow...