Keep Believing

That’s all I can do, just keep believing that Quincy will live a long, happy, healthy life until he’s old and gray. I have to be THAT specific with my manifestation because last time he had Leukemia, I manifested him at 10 years old and leveling up to the 5th grade. Well, shit, he got to age 10 and he made it to the 5th grade, and damnit, he got AML (Leukemia) again. I should have pushed my manifestation out to when he’s old and grey and having lived his best life ever. So, is it MY fault he relapsed again? Obviously, the universe listens when I ask for things, so this time, I will keep believing that he will survive, and I will be way more specific about his timeline when I manifest. 

“Quincy will get through this stem cell transplant easily and successfully. This will be the CURE for him, and he will live a long, happy, healthy life until he is old and grey”. 

This is my manifestation. These are the words I say every day, multiple times. 

Let's rewind a bit.

Preschool - Quincy was sick and undiagnosed for 9 months.

Kindergarten - Diagnosed with AML Leukemia. Underwent 5 rounds of chemo, which took about 6 months in the hospital. Lots of side effects and related illnesses, but he rang the victory bell and was cancer-free for 8 months.

First Grade - He relapsed with AML. Did 2 rounds of chemo and a bone marrow transplant. Little bro, Reece, was his donor.  A perfect match. He rang the victory bell and was cancer-free for 3 years.

Fifth Grade - 2 weeks into the new school year, and, crap, he relapsed again with AML.  He did 2 rounds of a new and innovative clinical trial of chemo and immunotherapy, which put him into remission. Currently, we are in the transplant unit preparing for another transplant. This time, his Dad, Andrew, is the stem cell donor.  I was also a match, but they chose Andrew. 

So here we are, doing this again. I’m scared shitless. No matter how much I believe he will survive this, I am still scared out of my mind. How can I not be? 

This is how I feel: I’m angry. I feel betrayed. I am annoyed and inconvenienced. I feel powerless. I look up at the sky, and I feel disappointed and let down. I cannot hold on to any reasons as to why this is happening to make myself feel better. I have not been able to justify anything this time.  During his last relapse, I firmly believed that he needed his brother's bone marrow to cure him. I thought I had it all figured out.  NOW, I don’t know WHAT to believe….(read this sarcastically with an edge of “fuck you”)  “Oh, wait, he didn’t need his brother’s bone marrow… he needed his DAD’s stem cells.. oh, ok! Yeah, that makes perfect sense.”… I have screamed so loud in anger that I believe I may have caused an earthquake somewhere.

What have I learned after this THIRD diagnosis? That I have no answers, no justifications, I have no control over Mother Nature, and that this certainly is not “God’s plan”… God does not plan anything. I believe we are put into this crazy-hard human experience to find Joy and Love in the middle of this shitstorm of chaos.  

I am a human having a human experience. The only real power I have is how I choose to process this challenging circumstance.  Do I have the strength to decide to grow from this as if I’m being “planted” or am I going to allow myself to be suffocated and “buried” under this pile of shit…. If you know me, then you know the answer…

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.