We Are So Lucky

Never thought I’d be saying that I feel lucky right now.  We are in the hospital for the next 5 months battling Leukemia and I'm still grieving over my sister's passing...yet I feel lucky. 

Lucky that it was caught very early

Lucky that the treatment is working

Lucky that there IS a treatment. If we were living in a different era, our story would be much much worse

Lucky that he is resilient  

Lucky he is not the kid in the next room who’s life hangs in the balance

Lucky we have an enormous village of family and friends who have flocked to our side with prayers, gifts, money, food, emotional support… all of which makes this so much easier

Lucky to be reminded of how much we are loved (sometimes I forget because my insecurities are like nasty little demons whispering mean things in my ears)

Lucky to have so much concentrated one-on-one time with both of our boys

Lucky to have been blessed with amazing health insurance…No financial burdens here 

Lucky that Andrew’s line of work is so flexible

Lucky that my employer has been so generous and understanding

Lucky we have amazing In-Laws who live right next door and are a huge help to all the shuffling around from home to hospital

Lucky Quincy is so young and is able to just ride this wave with such grace

Lucky Reece is too young to really understand what is going on

Lucky that I have my sister angel, Marcy, who immediately calms me down when I spin out of control

Lucky that we checked into the hospital for our 6 month stay in March, just in the nick of time to not miss the major holidays

Lucky that when this is all over, Quincy will have a lifetime to proudly tell his tale of Leukemia and how he fought it off with more than just Luck...he fought it off with strength, courage and the belief that he could do it.

P.S.

(Also lucky that he is into meditating with healing crystals! Whole body wellness)

 

Quincy's Little Cell

We thought we were in the clear after that hairy night at the ER but damn it that shift change meeting failed us again.  No information was passed to the incoming ER doctor that night.  Quincy’s blood never made it to the hematologist group that were standing by waiting to analyze his blood!  An automated machine spit out answers that relieved our hearts but in reality, a human eye was supposed to confirm that Quincy was in the clear. 

We learned this the next morning as our naturopath (Dr. Tran) explained to us that the final answer was still pending.  

I shook uncontrollably.

Andrew and I held on to each other in the laundry room.  We were on speaker phone with Dr. Tran while distant background sounds of Dragon Rescue Riders played on our TV in the other room.  All too familiar. 

Word came back shortly that Quincy's little cell was not there anymore. Not detected by the lab machine, not detected by the pathologist.

Whew.

But Dr. Tran was insistent on giving it another look, so in we went to Hematology/Oncology the next day. After a long meeting and another blood draw, it was confirmed that Quincy’s little cell was not there. Since his other blood counts were out of range, they scheduled us for a follow-up in one month.

Let’s not forget that while all of this was happening, little Q was still suffering with his undiagnosed illness.  Still having episodes and in pain. 

A few more lab requests waited their turn for Quincy's temperamental blood. The plan was to see what his numbers looked like while he was NOT sick.. and... they had a few rare leukemia tests too (I thought we were DONE with this Leukemia maddness!) Three weeks later, we were urged to go get poked again which was sooner than we had planned.

Quincy had his blood drawn in the morning. 

That afternoon, Oncology informed us that they found that ugly little cell again, and his counts were now seriously, pretty alarming.

The next day, we were in the clinic getting a bone marrow biopsy. 

Our world spun wildly.

Could this really be happening?

As I recall all of this, I gasp for air. I would not wish this kind of fear upon my worst enemy.

As we waited while Quincy’s bone was being pierced (thankfully he was sedated), all I could hear was Marcy's voice (my sister in heaven) saying, “You don’t belong here...You don’t belong here”.  

But we DID belong there.

A few hours later, as we were at the park with our boys, Dr. Kuo called us and ripped the bandaid off lightening fast, “So, Quincy has Leukemia”. He said it as if he was shocked, which somehow made it ok to hear...“So, Quincy has Leukemia”.

The ground dropped beneath my feet.

As our boys innocently played, I stood there like a statue.

Speechless. 

Motionless. 

No tears. 

Nothing. 

Everything went silent.  

I was forced to take a sharp turn down a dark and unwanted path. 

I was reborn into an alternate reality that sat like a rotting piece of shit in the bottom of my gut.

I died breathing.

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...