I carried him in to the pediatrician’s office - he was still fully asleep.
When a kid is sick & tired - this isn’t something to be alarmed with, right? No. Wrong. Apparently, I was wrong.

The pediatricians - 3 of them - grabbed him from my arms & immediately put an oxygen mask on him and covered him in ice packs.
I wasn’t sure what was going on - but suddenly we were in an ambulance to the ER.
He was calm, still sleepy, and opened his eyes when the oxygen was on him.
After a few hours at the Anne Arundel ER, they determined that Jack needed to go to the PICU at Hopkins to get high flo O2. Into another ambulance we go…

We spent 6 days at the Hopkins Children’s Center. 4 Days in the PICU and 2 Days “on the floor” - terms I’ve learned now.

PICU is loud, lots of beeps & constant monitoring.
The floor is more peaceful and less check ins.

Those 6 days were terrifying - we have two older girls who’ve never been admitted.
We still were thinking he just had a bad reaction to a virus - and his immune system was shot.
Friends were telling me that viruses trigger asthma & that they’ve spent time admitted to have oxygen support.
Okay, we started to accept that this could be our new normal. A kid with asthma is all we were thinking…

Jack was discharged on February 5th, 2023.

That next week, we didn’t send him back to school just yet.
A friend of mine brought us a pulse oximeter and that became our go-to tool.
He seemed fine & we took him in for a follow up at his pediatrician.

That appointment was alarming… and not what I was expecting.
Our pediatrician, who had been practicing for over 30 years, looked at me puzzled and scared about the episode.
He said that in his entire career, he had never seen a child look the way Jack did over pneumonia.
He was alarmed because Jack looked like he was exposed to a poison - like botulism.
He reminded me that when oxygen levels are low, your body should labor to breathe.
He said that he wanted us both to consult Allergist, Immunologist, and he was going to consult with his peers.

At this point, we had just spent 6 days at the best hospital in the world & not one person led us to believe that this was odd.

But then I remembered a text message from the week prior - our pediatrician’s wife, a pediatric RN for the same amount of time & who owns the pediatric practice with her husband, had been texting for updates but said this;

“…do they all know that this all started with him not being able to be aroused? That he did not respond to pain and had non gag reflex when we looked in his throat? When we did the FLU/Covid test he didn’t flinch or try to push our hands away. His pulse ox was 88-92 BUT HE was NOT breathing hard at all”

At the time, I was standing with my friend who was working at Hopkins that day - and she said “I think she means she’s worried about something with his brain”
—— and I panicked. She immediately said she was mistaken when she saw my face - but she was right…we just didn’t know it yet.
My response to the pediatrician; “Do you think there is something brain-based they should be looking for” —— February 2nd, 2023.

That appointment was on Thursday. I left voicemails & called around to try and get Jack in soon for Immunology…
would have to wait until next week as it was the weekend.

Looking back, he wasn’t great that weekend. But he wasn’t bad - we had a been out & about, Donut Shack… Birthday Party…Chartwell for dinner…
Seemed a little weak in his legs. Leaned on me a little more than he normally did.
But overall he was okay, so that Monday, we sent him back to school…

FINDING THE TUMOR & OUR 2ND HOSPITAL ADMISSION (FEB 13TH 2023)

Jack was at school for one hour. ONE HOUR.
I see the school calling my phone, I was on a conference call so I muted out & answered quickly…

“Mrs. Taylor, Jack doesn’t look right. He is walking with a gait - seems to be falling down & couldn’t get up the stairs with his class. I know he’s been sick but I would feel more comfortable if you all came to see what we see.”

I sent Jason so I could finish my call, he texted me that he agreed - he didn’t look right - and he was on his way home.
As they pulled into the driveway, I took a video of Jack getting out of the car so we could share with doctors. He was wobbly & fell going up the step to our front door.
I called Hopkins and they said to rush him to the ER.
“This is a new symptom, they said. “Not a symptom of pneumonia.”

We rushed him there, I left a message with his pediatrician and texted his wife what was going on…
Both of them return my call DEMANDING they get a chance to speak directly to the attending physician.
Hopkins is a good hospital - but at times it seems they do not want to listen to anyone else. After multiple comments & continuing to push them…eventually they connected.
And we were off to an MRI…

It was hard, but I persuaded Jack to sit still for it. It was a fast (7 minute) scan & and when we returned to the room, the neurologist said that we didn’t get good images.
That we’d likely have to be discharged and do this outpatient.

Not even a minute after she said that, the attending ER doctor comes in and says, “May I speak with both of you in private?”

WHAT? This is the most dreadful thing a parent can hear - but we were confused. The other woman just said they didn’t get good images.

I say for what - “for the results of the MRI” - I thought you didn’t get a good picture - “we did and I need to speak to you both in private immediately”

…the nurse stays with Jack - and off we go down a hallway to a very small room with a bed and a computer.
In this room, the doctor pulls up MRI images on the screen - points to something I cannot determine I’m seeing - and says;

“YOUR SON HAS A LARGE TUMOR IN HIS BRAINSTEM”

I gasp, I scream. I beg for answers - she has none.
I plead, “please go get someone who can answer me, please, now…please I beg of you.”
That is all I remember… sobbing & repeating myself, “no, no no… no…this can’t be. No…”
Jason, is silent. His silence is deafening. If you know me and you know Jason - this scene would probably not surprise you.
I was irrational, I was terrified, I was angry, I was… sick. And I turn around & see this - I am not even sure why I took the picture….

NEXT STEPS

A young doctor comes to talk to us. He shows us images on his cell phone of Jack’s tumor.
I don’t remember anything other than he said something like “the surgeon Dr. Cohen will be here to speak with you shortly.”

At this point, I’m in full crisis mode.
I called everyone I knew in healthcare to get info. “Tell me what to do, what to ask, who to ask for…”

We have a friend who has worked with surgical robots for years - I called him.
He told me what he knew about Dr. Cohen & that he is the best. Seemingly everyone I talked to agreed.
Could have been minutes, hours, seconds, I truly don’t know. But suddenly, I’m talking to Dr. Cohen and we’re in a room at the PICU.

Dr. Al Cohen. “BIG AL” … the “King”
At the time, I did not know this… but Dr. Cohen is an Angel on Earth.
And God sent him to us.
He was and still is the kindest, most patient, witty & compassionate doctor I’ve ever met.
He knew I was scared & he didn’t sugar coat anything - but he told me enough to understand the severity but to not panic.

He told us Jack’s tumor was large - very large - and he was surprised that Jack was walking around like a regular kid.
He said that with this size tumor in that location, he was surprised Jack wasn’t in a coma. (Stomach drops)
Jack’s case then & still is very rare - but since Jack seemed to be such a strong, healthy boy - he was confident Jack would be fine in surgery.

Surgery would be all day, eight hours at least. They were going to use robots to navigate his brain & to debulk the area pushing into his cerebellum.
But the brainstem is a very fragile area, and if you go too far, he might not wake up. Or he could have brain damage…48 hours from now we begin.

2 days went by both fast & slow … and on February 15th (Dr Cohen’s Birthday) Jack was being wheeled back to the OR.
When they took him into the operating room, he wasn’t asleep yet and had to go to in alone.
He cried for me to stay but we were not allowed.

There I was, on the floor, paralyzed and hysterical, hyperventilating. I could not breath. I could not stop crying.
I limped back to his PICU room, Jason supporting me by my arm. Room was empty, just dust bunnies blowing around the toys & over night bags.

My friend Suz arrived shortly after & stayed with us all day. She kept trying to make me laugh and I politely told her to stop. And she did.
Hours go by - our DoorDash lunch was stolen - we ordered again. Suz, Jason and I sat silently drawing pictures for Jack’s walls.
Suddenly, Dr. Cohen is at the door.

“The surgery went well - we did exactly what we were going to do, we had to stop because his heart rate stopped but we brought him back. It’s okay, it was what we expected. He is okay - it went well, he’ll be back here soon - they’re stitching him up now.”

Thank God. He is okay. He is going to be okay - he is just going to sleep tonight - we thought…

THAT NIGHT WAS AWFUL.

He was sedated and intubated - but they could not figure out the balance between sedation & torture.
Too much sedation and his heart rate would stop & not enough sedation and he would fight his tube.
During the surgery we found out that Jack’s right vocal chord was completely paralyzed which was causing the chronic cough & upper respiratory issues.
He had been aspirating liquids due to the tumor pushing on his cranial nerves.

Sometime that next morning, they removed his tube and brought him out of his sedation.

There he was, my Jack-Jack, awake…
breathing on his own. Thank you, God.