Christmas in July

It was Christmas in July ...

Our two boys bonded on a cellular level.  One saved the other's life.  We celebrated Reece's bravery and Quincy's rebirth. 

Wednesday July 20th

Donned in his superhero cape made by Granny B and two other amazing ladies, Reece checked into surgery, fell asleep to the smells of cotton candy and a nice dose of anesthesia, and donated 420mls of his beautiful bone marrow. 

Andrew and I waited for him in the hallway as they wheeled him to his room in the oncology unit.  There he was, orange Popsicle in hand, "Bunny" tucked under his arm, feeling groggy but content.  The doctors were so cute to give Bunny a breathing mask to match Reece's in the *O.R. 

Reece had always wondered what "Quincy's Hospital" looked like. Well, now he knows! 

After a 2 hour nap, Reece woke and hobbled over to Quincy's room in the *BMT unit. His back was hurting and he was weirded out by the IV in his arm, but he was a trooper.  

We all had the BEST day together! We showed Reece the BMT family room and played in there for most of the day with new toys from the Child Life Specialists, played video games, ate donuts, listened to some awesome music by Carl Anthony (the musician who visits the kids here), and watched movies. 

I stayed with Reece in his room that night and it was less than spectacular. Surprisingly, he wanted to go home and be in his own bed. For the past few months he has been saying how excited he was to sleep in a hospital bed and have room service... not so much. He didn't like the room and he didn't like the pizza.

July 21

Bone Marrow Transplant Day

Best Christmas (in July) gift ever... a new chance on life.  Honestly, my Christmas lists to Santa will be blank forever. Nothing compares to what Reece did for Quincy on this day.

Around 4pm, Quincy's life was saved. 

He was asleep, doped up on Benedryll for possible allergic reactions, but nevertheless, it was beautiful. 

"Reece! BOTH hands, Reece... REECE... you're not listening to us"!  Little Bro one-handedly delivered his marrow to Quincy's bedside as we all stressed out that this little 5-year-old might drop the dang bag and ruin everything. Docs were laughing, parents were not. 

Our little warrior was surrounded by family (including Grams of course!), doctors, nurses, a healing touch therapist and a harpist as the marrow dripped in.  If you didn't know by now, a bone marrow transplant is like a blood transfusion, not a surgery. It's a 4 hour drip.

Something special was in the air.  Time stopped. We were caught in some kind of "in between".  Have you ever been at someone's side during the last moments of their life, or been present when someone was born?  There's something different in the air.  You lose track of where (and when) you are... that's the "in between"...  That's where we were...The harp, the healing touch, the quietness, the stillness, the feelings of angels, all these YEARS of sickness finally being put behind us. Best of all, I felt my sister Marcy's presence. I bawled.  God I miss her.  I knew she would not miss this moment, she never missed any moment in my life. 

Quincy woke up after the team left. He just shot right up with a silly grin on his face like he was pretending to be asleep the whole time. 

The rest of the night was wonderful. 

Stay tuned for another BMT chapter...

*BMT - Bone Marrow Transplant

*O.R. - Operation Room

STRONG AS A MOTHER

During Quincy's previous battle with Leukemia, my cousin-in-law (now soul sister) gave me a sweatshirt that states in large bold letters "STRONG AS A MOTHER". I wear it while I'm in the hospital with Quincy. It's my identity these days.

I have been tested this past week... AM I truly strong? Can I handle all of this?... I have crumbled. I have sobbed. I have lost so much sleep. I tried going to the gym but I couldn't get out of my car. I just sat in the parking lot and bawled. 

“No one ever prepares you for Motherhood”. Have you heard that saying? 

No one ever prepared me to be a mother of a child with cancer. How could one possibly prepare for that? 

This past week has SUCKED. 

• My hubby, Andrew, got Covid. 
• We were ALL exposed, including Quincy. 
• Reece got sick with a cough and a fever. 
• Andrew has been quarantined in our master bedroom. 
• I was kept away from Quincy for 7 days. 
• While being separated from his parents, Quincy had to endure his fevers, his cough (he has a virus too, like Reece), a Bronchoscopy, a Lung Biopsy, a post surgery drainage tube coming out of his back, and then getting that tube removed a few days after surgery. Luckily my MIL, Grams, was with Quincy. He did not have to face all of that alone. 

My fears of Quincy having Covid tested my "Strong as a Mother" persona that I've been trying to embody. What happens to a kid with NO immune system, AND a preexisting lung infection, who gets Covid? I imagined every mother's biggest fear. 

What happens if Quincy is not in remission after this first round of chemo? He will have to have MORE and MORE chemo before the bone marrow transplant. How much chemo can his little body endure before things start to become permanently damaged? 

Quincy has been sick on and off for TWO YEARS. He has had more medicine and has had to face more life threatening situations than I have ever had to face and I’m 41 years older than him. 

Will this transplant seal the deal and send him on his way for a lifetime of health or are we gonna have relapse after relapse? 

Have I not had enough shit thrown at me in the past two years? When do I get a break from all of this sadness and worry:

• Ovarian Cancer stole my dear sister, Marcy
• Leukemia plagued my son
• A relapse of Leukemia plagues my son AGAIN

These have been the source of my thoughts and screams and tears.

I'm out of control. 

I need to breathe. 

What was the name of my blog again? 4 in 8 out…come on Mama, you can do this.

Anyway, I truly know what being a Mother is now. During these 7 days away from Quincy, and facing so many of my worst nightmares, I found myself pining for him. Needing to be with him. Feeling as if part of me was missing. 

A part of me WAS missing. He is a part of me and I fully understand that now. 

I am no longer a silly high school hippy going to Steve Miller concerts.. I'm no longer the carefree college girl chugging back beers at my brothers fraternity house...no longer am I the wide eyed actress living out my dreams in New York City...I'm a grown woman with a child who is fighting for his life for the second time in one year.

I am a mother of a cancer fighter.

Keep Breathing

Quincy rang the Victory Bell last September 2021 and we walked outta there thinking we'd never see those lovely nurses again.

We had a magical time watching him go back to school (first grade), make new friends, join the after school choir and dance classes,  go back to swim and karate lessons, and  join a basketball team with his little brother Reece.  Academically, he got all caught up and started reading chapter books and became a math wizard.  We went to Mexico, Hawaii, Santa Cruz... we had a huge trip planned for this summer  -  Greece, Germany, Switzerland and France.   Our hearts soared when he performed in his first grade play, "Patterns in the Sky".  

Every month we took him to Rady Children's for his routine bloodwork/check up and all has been good. Better than good - like amazing.  His blood recovered in record time.  Everything seemed just perfect.

Monday, May 2nd, his routine bloodwork scared the doctors. His numbers were very low. They ran another test that day for the pathologist. They found 11% blasts. We took him back the next day for a bone marrow biopsy. On Wednesday May 4th, we got the news, he was having a relapse. They found 50% blasts in his marrow. That night we checked into Rady's. 

Our little warrior will receive at least two rounds of chemo and then a Bone Marrow Transplant (BMT).  Quincy's brother, Reece, will be his bone marrow donor and here's the good news, they are matched PERFECTLY.  An 18:18 match.  We could potentially be hospitalized and in treatment for 4-5 months depending on how well he does. We will get a few breaks where we will be able to come out of the hospital for a week or so.

Damit this sucks. We were so hopeful these past months just shaking our heads saying, "It's as if nothing ever happened! He's totally back to normal so quickly"!  And now I am saying, "It's as if we never left".  Man, I was scared and in SHOCK and freaked out of my MIND last time. This time,  I'm depressed.

A friend of mine asked me, "HOW are you still breathing"? And the only thing I could say was, "It's just automatic".  I guess my heart is still beating so I'm still breathing, yeah? Since Monday, everything has felt automatic to me. One nightmare leading to the next nightmare and I'm just following along automatically because what else can I do? You gotta just keep going. So, we have leukemia again.. .we are back at Rady Children's again...and I'm still breathing somehow.

This is his amazing attitude right before we drove him back to the hospital.

Miracle Kid

Quincy, the “Miracle Kid” is what his oncologist, Dr. Kuo, calls him.

Why?

1. His hair stayed intact through the first 2 rounds of chemo. (We are in round 3 now and it’s starting to fall out). 

 

2. His blood levels return to normal after each round which has never been seen here. One doctor said, “What’s this kid made of”?!

3. While all the other kids are in their rooms, Quincy is out and about, running and bouncing his basketball, charming all the nurses. They are baffled by his energy during treatments.

4. And the biggest surprise of all:  He’s the only patient they’ve ever had that tested for positive blasts and negative leukemia results after the first round.

Long story short…

After the first round, his bone marrow biopsy showed 33% blasts which led the doctors to believe that the chemo didn’t work.  

Friday, we were told he’d need harsher chemo and a bone marrow transplant.

This was the worst news of our lives. Like getting a diagnosis wasn’t enough… worst weekend EVER…

But they were WRONG.  

Monday, Dr. Kuo came skipping into the room with news that he was in remission!  

So how did this colossal mistake happen?

Bone marrow biopsy results happen in 2 phases.

Phase I, a pathologist looks for blasts. Blasts are immature cells. They don’t necessarily mean they are cancerous. They are just undeveloped cells. 

Phase II, a machine called a flow cytometer, figures out if those blasts contain Leukemia and how much. The results are called MRD results (Minimal Residual Disease). If the MRD is positive, then your blasts have leukemia and vice versa of course. It takes a few days for this report to become available.

Quincy’s pathologist saw 33% blasts and quickly called Dr. Kuo with the bad news. Never in anyones career here at Rady Childrens have they seen blasts with a negative MRD report. So they didn’t think to wait for the flow cytometer report. They just assumed that Quincy still had Leukemia and they wanted to tell us right away so we could start processing the info and get Reece tested to be the bone marrow donor. 

Obviously, HUGE mistake on their behalf for jumping the gun before all the results were in, and believe me, I called a meeting with them and demanded apologies and explanations (I got tearful apologies from all four doctors. They humbly told me that they learned a huge lesson and will approach things differently going forward). One of the doctors told me that she spent her Saturday researching the possibility of having that many blasts but also having negative MRD… she found ONE report. Now Quincy is the second reported case in the WORLD.

What a miracle kid.

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...