My son in the ICU: I’m leaving, but don’t leave

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You know that song, You are my Sunshine? All my children, from the day they were born, heard me sing that song to them every night for at least 2500 nights straight.

Only I changed the words.

You are my sunshine, my only sunshine….I sang to their baby eyes and wrinkly bitty feet.

You make me happy when skies are gray….it was true, they did. Nothing like a mother and child love.

You’ll never know dear, how much I love you…true as well. Noone understands a parents love until they are a parent themselves.

Please don’t take my sunshine away. Ahhh, here’s where I changed it. I know now it was my greatest fear. So much so, that I didn’t want it mentioned, so I changed an age old song.

I sang, “I’m so glad you’re here to stay” instead of, ” Please don’t take my sunshine away.” I went on to change the other lyrics to match the sentiment…

“The other day, dear, as you lay sleeping…I dreamt I held you in my arms. When I awoke dear, I hugged and squeezed you…I’m so glad you’re here to stay!” Isn’t that sweet?

How I wished as I stood next to his bed holding his hand on this particular day, that I could speak those words into LIFE in that moment….

Three doctors stood at the foot of the hospital bed. In the middle was Chris. The One doctor and friend who had been with Cory since the day he was admitted to the bone marrow transplant unit. I couldn’t tell you who the other doctors or residents were at his side.

The head of the BMT unit was standing behind the head of Corys bed. Cory didn’t know she was there. The consummate professional, always put together, gorgeous, usually wearing heels with no effort, graceful, firm but caring….was a mess. Silently sobbing and heaving behind Cory’s headboard. Grieving before he was gone.

I looked away quickly….no. no. keep it together, Sheyna.

“Hey Cor.” It was Chris.

“Hey.”…. Cory had that partial smirk he got when he was sad….or knew something was coming.

“You heard the results from the scope?” Chris was holding the foot of the bed with both hands so tightly.

“Yeah.”

“The lesions are everywhere inside your body.”

Cory nodded knowingly.

“I’m so sorry…

but we’ve done everything we can do.”

He moved his hand to hold Cory’s foot through the blanket.

I was squeezing Cory’s hand tightly and looking at him to read him, to grasp what he must be thinking and feeling. I can see his disappointment deep in his eyes. I can see it. I can feel it radiating through his fingers as his hand that was holding mine, suddenly resigned. He had the smallest squeeze of hope just an instant before the words, “…..we’ve done everything we can do.” Then he let go.

There was a silence you could see.

“Thank you for your efforts.”  was all Cory said. And he said it from his soul.

His eyes were welled with tears, but he didn’t cry. He looked at me as tears free flowed down my face. I didn’t say it’ll be ok. I just searched his eyes for something. Eyes looking so deeply like you do an infant. You know, infants don’t look away when we lock into their gaze. They look back. and they always, always smile. Our souls are IN THERE. And sometimes our souls need our Moms, and I wanted his soul to know I. Was. There.

He didn’t look away…but he didn’t smile. I saw him. He didn’t want to go. And it broke my heart for him. “I love you, I love you, I love you.” I whispered too many times. “I’m so sorry”. He shrugged as his lip quivered.

It reminded me of the day I left him in his college dorm for the first time. He’d “packed” his clothes by shoving them all in a laundry basket…”It’s fine, Mom.” was what he said when I asked him to fold them, to put them in a suitcase…..to pack “correctly”. But it wasn’t fine when they were laying in a heap on his dormroom bed and he hadn’t met his new roommate and it was time for me to leave. And he, who had 1.5 feet into adulthood, but .5 foot left in childhood at that moment had a look of panic, eyes welled up with tears, but didn’t cry…or like he was 6 and I was watching him look back to me as he got on the bus for the first time with the “I’m leaving, but don’t leave” look.

“Do you want me to help you fold and put away your clothes before I go?”

“Well, I have to be at the dorm floor meeting in 10 min.”

“I’ll do it for you. Go to your meeting. Give me a hug, I love you.”

Same look, different place.

I couldn’t fold and put his clothes away for this trip. It ripped me apart to see that look and know there is NO THING I could do…no task, no nursing duty, no cooking, no folding, no bathing, no store running, no flying across the country, no feeding a milkshake with a straw, no kisses, no bandaid would make. this. better…..nothing. nothing nothing nothing nothing nothing not even a little mom thing- nothing. NOTHING I could do.

Nothing.

The Doctor behind the Headboard had composed herself, came around the the hospital bed thru the heaviness in the room. She leaned over Cory and turned her phone to him.

Her eyes were puffy, her face was red from love and wishing things were different. “I want you to think of this place right now.  I want you to think of these rocks, the formations, and the sand, the beauty.”, she prescribed with her Lithuanian accent. It was Utah…a place to hike called Angels Landing. It looked glorious. The doctor and Cory had made plans to meet and hike together in Utah when he got out of this place. One of the many places he dreamed of wandering. He nodded his head yes as the welled tear finally fell. “You think about THIS. Ok? Ok.”, she said as she tapped the front of her phone screen with her manicured fingernail.

She had sons Cory’s age. She had wanted to save him for Utah, and for his girlfriend, Anna, and for the babies he might father, and for his crazy family that regularly filled his hospital room, and for the places he might go, and for the work he might do.

She left, the doctors filed out. Cory closed his eyes to sleep.

And for the next couple weeks, we never spoke of it again.

Please don’t take my Sunshine away. The other day, dear, while I lay sleeping, I dreamt I held you in my arms….when I awoke dear, I was mistaken… Please don’t take my Sunshine away.

It was never my Song to change.

My son in the ICU: Hope Sinks

Here we are again.

The Conference Room, round two. We were on a white vinyl couch, Dave on one side of me, Charlie on the other. A few of Cory’s people. We were nervous, knowing, but not knowing why we were called to be here. Assuming Cory’s Bone Marrow Transplant doctor would be there since she called the meeting. Hoping she might tell us how they would stop the bleeding, whats next, how they would fix this.

But everyone came. A sea of doctors, and Jenny, Cory’s nurse. She was busying herself with paperwork, so I couldn’t read her face that I’d grown to know so well.

Where’s my breath? I can’t find my breath. I grabbed Charlie’s and Dave’s hands….they would breathe for me.

We know the results of the scope. He was internally bleeding from the fungal wounds in his mucous membranes opening up. “Noone has ever survived this…” the haunting words echoed in my brain that were told to me over a month before. But he WAS surviving this, he was thriving this, he was kicking it….everyone was surprised…and hopeful, right??

Or was it just me?

In seemingly slow motion, the specialists for each part of his body filed in the room. All squeezed into the ever-shrinking conference room around us. Heart guy, kidney guy, pharmacist gal, bone marrow gal, gastro dude….and Chris, one of the BMT doctors who had been with Cory since the beginning. He was his friend, our friend.

When I saw Chris’ face as he walked in the room, we locked eyes. Everyone else around me disappeared and he pulled a chair into the middle of the room right in front of us. His mouth had that slight “I’m sorry”  tilt to it. My face was paralyzed as tears rolled out of my eyes anyway.

He took a deep breath as he rubbed his hands back and forth on his thighs.

“We take an oath when we become doctors.”, he said .

“And one of the most important precepts is that we Do No Harm. We have to assess if further treatment would do more harm than good. And we are struggling with this with Cory. With this in mind, we have come to the conclusion that any further intervention is not feasible.”

He continued to talk but I didn’t hear his words. I could see his mouth moving, could hear Charlie asking questions, could see tears rolling down the faces of many in the room, could feel Cory’s fathers holding my hands too tightly as my mind gave me a slideshow of my first baby, my child, my soccer player, my rock-n-roll teenager, my adventurous, peace-full young man. And in that instant, I knew.

He was never really mine at all.

I began to see people rising as my senses re-acclimated to the room. I rose and people hugged us. What was the plan? What now? I missed it.

I reaffirmed with Charlie and Dave what my mind was trying to assemble of what was said, what I thought I heard, what my brain and heart were digesting. I was standing there with the literal feeling of my body being a thin shell…everything inside had turned to liquid and sunk to my feet.

Lost Hope is liquid, I’m sure of it.

They would tell Cory later. See you at 5.

My son in the ICU:A dog and his boy

IMG_9726All was looking up… again. Every scab that covered 3/4 of his body was healing with the fungal medication he was now allowed to have since the allergy-exposure therapy was a success and he could have the medication. Each scab was shrinking in size and daily I applied the 100% honey that I had been given from the wound specialist to each and every scab after sponge bathing daily. He was eating more milkshake each day in addition to his TPN (intravenous feeding). He was alert, awake, healing, and himself. We binge watched Dr. Who like it was going out of style and he was back to playing trivia games with his brothers and sisters and cousins. He was mentally fighting with everything he had, rarely pushed his button for pain meds….we were all at the top of the roller coaster with views of trees and life and earth for miles.

A resident doctor came in one day in her street clothes, “I will drive to Monroe and get your dog. Can I do that?”

“Ummm…wow, that is so kind, but no. She’s a little temperamental. Dave will bring her on a visit someday.” All the doctors had signed a document that Sunshine (Cory’s dog since she was born), could come onto the ICU unit to see Cory. We were worried about the inconvenience, possibly shaking Sunshine….it just wasn’t working out logistically. The doctor came in with a very disappointed look another day saying that upper-management wouldn’t let her anyway when she approached them about it.

She REALLY wanted Sunshine to come see Cory. What a sweet animal lover, I thought….

“Call me if you ever see blood in his stool.” said his primary bone-marrow transplant doctor (the head of the BMT unit).

“OK”, said I, shelving it away in my Denial compartment.

until…

“….its really dark. Is that blood?” I asked the nurse.

Clank, clank, clank….the sound of the roller coaster slowly reaching the top.

“It might be. Lets take a sample.”- nurse

I called the BMT head’s personal cell number and said “There’s blood.” at 10 PM at night. “I’ll be in tomorrow”, she said.

TOMORROW??? What does this mean? It must not be too bad because it can wait until tomorrow, right?

I didn’t sleep.

By morning he was vomiting blood. It was heart-wrenching to see him convulsing blood up every 5 min while we held a container under his chin. He still had a feeding tube for medications that had to be taken orally even though he was getting all his nutrition intravenously. The nurse suggested we could suction the blood out of his stomach with a giant syringe attached to the feeding tube to possibly alleviate the vomiting.

“Yes.” Cory said.

I began. They sedated him and I sat at his head with a syringe and suctioned out blood on an almost constant basis from his stomach, excreting it into a beacon-like container that I used in high school science class, so they could measure it for the records.

They brought in a Gastroenterologist. He said, “I can go in and do a scope to see what’s going on, but I don’t know if he will survive the procedure’

“Yes.”Cory said

They went in and brought us back Polaroids. Fungal sores and scabs that looked exactly what the scabs looked like on the outside lining his esophagus, his stomach and his colon. They were healing too! But with the moisture inside the body, the scabs were falling off one by one inside of him. Internal bleeding.

Clank, clank, clank……deep breath.

The selfless resident doctor, who was willing to personally go to get our dog, KNEW what was coming and we refused to acknowledge….

Regardless of the valid excuses, I’ll forever regret that we didn’t bring his dog, Sunshine, into the ICU to see him.

Hindsight haunts.

My son in the ICU: Cruising

Mid-October 2013

It was going to be a good day.

Cory’s nurse asked him if he wanted to do a trip outside. This would be the second time he’d breathed fresh air in the 6 weeks since we’d taken up residence in the ICU. Cory was thrilled. He was trapped inside, trapped in a bed, trapped in a diseased body. The prospect of fresh air and the feeling of sunshine on his skin seemed like a lottery winning.

He did have the corner penthouse of ICU rooms with floor to vaulted ceiling picture windows that allowed him to see the sun and clouds even if the view was of the buildings next door. It gave him the illusion of going beyond. We watched the construction progress on the buildings across take place every day. It was reminiscent of boyhood days gone by to be excited about the cranes and what looked like the acrobatics of the construction workers. We even saw a hawk perched at a distance. We were so impressed that it always happened to be there when we looked out. Always there to visit us. Those windows weren’t the same, though, as actually being outside.

This was not an easy feat to get him outdoors. (God bless his nurse-friend for being willing to orchestrate…) There were 4 of us there to transfer him from his bed to the wheel chair. He could not walk, he could not swing his legs over the side of the bed. We all grabbed the corner of a sheet underneath him. 1, 2, 3…lift and transfer.

We dropped him. I gasped and teared up–he didn’t.

He’d slipped from the edge of the sheet and landed between the bed and the wheelchair.The quick response of his nurse to grab him underneath an arm broke the drop and gave us the time to regrip the sheet so he was unharmed. She directed us how to reposition the sheet around him and we lifted again and he was successfully seated in the wheel chair. Mask hanging on his chin , shades on, hospital gown on….he was ready.

“Lets do this.” he said

As we exited the room, the nurse pushing his chair, me pushing his pole of bags of blood and medication…it felt parade-like. He was grinning from ear to ear and waving to his fans as we cruised around the nurses station. One of the men sitting on the edge of the desk was an ICU physician that had been his doctor a month before, but was rotated out. His eyes were wide with shock. And then he smiled at Cory. He said, “I never thought I’d see this moment…” Then shook Cory’s hand. Cory was healing…again…miraculous. The joy was palpable. You’d think we were going on a cruise.

We pushed him out on the patio, pulled his mask on, and he directed us around the play equipment to where to place the wheelchair. I sat on a bench nearby and just took him in while he took it all in. We just sat.

He eventually pulled down his mask, closed his eyes, and took in a deep breath.

He was happy. We were on the boat. Cruising.

We chatted and made jokes about his cute outfit. We looked at the birds.

Life’s clarity becomes simple in the ICU—true, unabashed gratitude for Breath and Fresh Air.

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My Son in the ICU: Living on the Edge

37766_445957641239_1438903_nMid October 2013:

“Hmmm…that almost looks like healing…that would be crazy.”–Dr. Wong

“Things are definitely getting better!”–Dr. Jodelle

“I am very optimistic.”-another doctor…..

These are the words we heard over the next two weeks as the Ambisome anti-fungal drug did its job in Cory’s war-torn body. We were elated. Back on the healing track again.

The blisters were scabbing over, Cory was out of severe pain again and you could see a new-found spark and energy in his eyes. One of determination and moving forward. He was still on the waiting list to be moved out of the ICU. In the meantime, we followed his schedule of occupational therapy, physical therapy, music therapy, natural healing therapy, photo-furisis therapy, and dialysis.

He had his blood tested every hour….(you could ask me anything–blood pressure map? pushing platelets? creatinine levels? culture all lumens? Neutrophil count? EKG, BUN, CMV, EBV, BKV, ANC, Chicken Noodle Soup. I’d had a crash course in bed-side nursing and I took my new job seriously, because this is what parents do, right? Chameleon into whatever our children need us to be, making it our expertise, and going to bat for them when they can’t.)

He couldn’t have a catheter because of the ongoing blood and clots forming in his bladder from the BK virus. So we had to empty his bladder by sedating him, catheterizing, then using a syringe to empty his bladder of blood and clots. We all had our roles. Nurse #1 would catheterize, Nurse #2 would hold the measuring container, and I would syringe and empty, syringe and empty, syringe and empty until there was no more.

Every. 4. Hours. Every day.

So much blood.

But his bladder, full of blood and quarter-sized clots were the least of their concerns. It was just part of the routine. So many hands required for his care, any parent in the room jumped in the trenches with the nurses.

He was still being fed TPN (Nutrition intravenously), still had a feeding tube for oral medications, but miraculously was beginning to eat again. 3 times a day, 3 bites of a vanilla milkshake. It’s the little things.

Our days were full.

“When can I get my arm fixed?” …referring to the broken cadaver bone in his left arm where his Ewings Sarcoma tumor once was.

“What can we do about this?”, he asked as he motioned his hand in a circle in front of his face…referring to his ravaged nose and patched black portions of skin on his face. Though he never once asked to look in a mirror in two months, he could feel it. His nose looked like a piece of charcoal, deadened by the fungus that attacked it. It was evident he would need a prosthetic at some point, but again, not the medical team’s number one priority.  It was magical to hear him discussing his future, though. To hear him be able to think beyond the pokes and prodding that consumed his waking hours. Hope. He had hope and so would we.

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They called in the Ear, Nose, and Throat team to assess. They ordered an MRI. It was explained that if the fungus had permeated the brain lining, there was no treatment. It would lead to irreversible brain damage and death if it had crossed the barrier.

We saw the pictures….the fungus had invaded his nasal cavity and had grown right up to the brain barrier, but had not yet crossed it. The Ambisome had stopped it in its tracks. Again commentary from this doctor that had “Never seen anything like this..someone’s looking out for him.” Another miracle of it stopping Right There—on the edge of disaster.

6 weeks now of living on the edge…

That night the resident ENT’s (3 of them in green scrubs) came rushing in to speak with Cory. It was late, we were settled in for the night. They woke him. It seemed urgent. I pulled my covers off my pull out chair-bed and went to the foot of his bed to listen. They repeated the results of the MRI, then went on to say that they would have to do surgery right away, to scrape away the old fungus from his nasal cavity so that it would never cross the brain barrier. He would have to go in the next morning and that time was of the essence! Cory said, of course, yes. They would bring the paperwork in the AM.green scrubsAdrenaline was pumping, I’m sure Cory’s was too. A New Mission. We had to have our minds focused and ready. His for the battle, mine for the support. I hardly slept. I Googled instead. Everything I read backed up what the Residents had said. Survivors of fungal infections had this procedure done as soon as it was realized so close to the brain. Ok.

At 6:30 AM, I was already up for rounds. Cory was awake and looked ready to go into the ring. Alert, awake, glasses on.

I stepped into the hallway and listened to each medical team’s assessments. There was no ENT in sight, though. I perused the faces of the 10 + doctors that surrounded Cory’s door. The Ear, Nose, and Throat doctors were not there. After a “status quo” report from each team (urology, cardiac, bone marrow transplant, kidney, etc.), they asked the standard “Do you have any questions?”

Ummmm. I shared the visit and details from the ENT residents the night before… we were told he needed surgery??? The look of confusion from every doctor in the room was evident. I felt the urge to convince them I hadn’t dreamt or imagined it…there really were 3 doctors who visited us the evening before. Wires were obviously crossed, but these seemed like pretty important wires to have in the correct place. They would send ENT to talk with us, because no one in this room knew anything about it.

I went and informed Cory to relax. Someone was coming to explain. His look of anticipation transformed to resignation. He slipped off his glasses to sleep. We waited two days and worried about the fungus and the brain barrier and the neglect of the apparent procedure that needed to happen “immediately” ….and finally he came. The head honcho of Ear, Nose, and Throat Land. He was surprisingly down to earth for “the man in charge”. I was suspicious as to why he was here alone and the resident doctors were Star-Treked out of our existence.

“Hi Cory.” He went on to explain that yes, the fungus had not infiltrated the brain, and the Ambisome was doing its job, so we were going to wait and see.

I knew what he meant by wait and see. Wait and See if Cory survived. I wondered if Cory knew too. Even though he couldn’t walk or sit up on his own, he wanted to do something to Move Forward. Get in there and start repairing things. Cory’s will astounded me.

“When we do the surgery, we will bring in pictures of faces for you to choose from. You will lose your sense of smell and some taste. Could effect your hearing and a chance of losing your eyes….and, you know, if that is the case…well, that’s no quality of life.”,said Head Honcho.

Faces? Not just a prosthetic nose, but a face?! I was dumbfounded. Star Trek, indeed…

Cory, though, wasn’t shocked or intimidated by the thought of a new face and no senses. He would take it. He wasn’t focused on vanity or quality of life…he just wanted Life.

He just nodded with that little half smirk of disappointment that they wouldn’t be doing something Now and said, “Okay, thank you.” and shook the doctor’s hand.

More Wait and See…

My son in the ICU: Exposure Therapy

Early October, 2013

A red allergy patient bracelet on top of a hospital questionnaire paperwork

Cory had an anaphylactic reaction (Face swelling, lips blue, can’t breathe) to the anti-fungal drug “Ambisome” early in his Leukemia fight. He wore a bright red bracelet with the word AMBISOME on it to alert medical personnel NOT to give it to him because it could kill him.  The alternative anti-fungal medications are not working. The Infectious Disease doctors say AMBISOME is the only thing that can Save His Life.

Now he is dying from a fungal infection, a complication of his No-Immunity, which is a complication of his Bone-Marrow Transplant, which is all-at-once a complication AND a cure of his Leukemia, which was caused by his Chemo from his previous cancer, that was the CURE of his Ewings Sarcoma cancer.

Yeah.

The irony of his cancer journey does not escape me. It confounds me still. There is a Life metaphor in here somewhere, I’m sure, which I hope to grasp in my lifetime. That the very thing that can Kill him can Save him. Too deep for me at that October moment, because all it felt like to me then was an emotional rollercoaster rising to Hope and dropping to Terror over and over and over and over and over and over and over and over (I cannot write “over” enough times to reflect reality….) again in the matter of a minute or an hour or at most, a day.

Only, it’s not fun.

Because, Feelings and emotions are all fun and games……until they are Real Life.

Anyway, there is a medical plan to bridge the “Ambisome can Kill Him” to the “Ambisome can Save Him”.  It is Exposure Therapy (involves exposing people to larger and larger amounts of allergen in an attempt to change the immune system’s response. Anaphylaxis can occur and this is why treatment should only be administered in a medical environment-Wikipedia)….and it has to be fast, because in the last 24 hours, the heart is once again pin-balling fungus through his bloodstream to land in a map-like appearance on his skin as excruciating large blood-blisters. The growing countries of purple and black land formations of fungus surrounded by rivers and streams of his smooth healthy skin. An invasion.

It was a midnight defense drill. The halls were quiet in the normally bustling hospital. The lights were dim. The children and parents in the neighboring rooms were sleeping. The family set up our chairs in a row about 5 feet from the end of Cory’s bed facing him. We joked that it felt as though we were on Family Feud. We were positioned to yell out the high-point answers to questions nobody asked. Cory was alert and awake and though he couldn’t sit up on his own, they raised the bed so he was upright. He asked if we needed popcorn. This is what we do (our family) ….light banter to break up the heavy fog of grave silence.
Unfamiliar faces filed in with clipboards and glasses. This was the Infectious Disease Team’s team. Their homeboys.
They poked, they prodded, they informed Cory what was happening. The night nurse hung the bag of bright yellow medication from his pole. We watched with feigned composure as we saw it slowly start to drip into his line and flow into his bloodstream.
The laughter left the room with the doctors. It was silent as we watched drip, drip, drip, drip. Cory closed his eyes. I prayed. This is the 1246th time I’ve prayed that he wouldn’t die before my eyes, prayed that his eyes would reopen.
“Cory?” I couldn’t help it. “Mom?” he said with eyes still shut. We all smiled.
So far so good. No reaction. This went on for 6 more hours through the middle of the night.
We chatted, watched a couple episodes of something mindless, until I was called out of the room. I slid the glass door open.
Before me was a scene that looked plucked out of the Apollo 13 movie…6 doctors crammed in the nurses station, all with glasses, button up shirts and disheveled hair from being up all night. They were staring at the monitors in front of them, some in the office chairs, a couple of them perched on the desk, and a couple standing. They were just missing the cigarettes from the 1960’s rendition of the NASA mission control headquarters.

I was looking for a smile, a sigh…trying to read them and ready myself for what they had to report. I see a thumbs up. I am flooded with relief, tears welling in my eyes as I have the urge to fall to the floor. I don’t.
They explain that Cory has successfully been weaned onto Ambisome and has to continually receive it to stave off the life-threatening allergic reaction he had months prior.
Irony.
My hope, my determination is back….as if that has power.
“Failure is not an option.”-Gene Krantz, flight director

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My son in the ICU: Doctors…They are only human.

Early October, 2013

He continued to thrive, relatively…always relatively.

They just kept treating him as they’d been treating him. The anti-fungal that I fed into his feeding tube into his stomach each day was apparently doing the job. He needed less everything as each day passed. Less pain meds, less blood, less platelets, less dialysis, less tests, less vitals taken, less care. It seemed about a week or so passed of doctors ….waiting….waiting….for things to take a turn for the worse.

That didn’t happen. He had More energy, more self-care, more conversation, more movement, more good “numbers”, more stability, more predictability, more healing, more Intention every day. He was waiting for a room to open up on the Bone Marrow Transplant Unit. He required ALOT of care, but no longer needed Intensive Care.

Cory and I or Cory and his visitors had meaningful or meaningless (which was just as valuable) every day. We told him about the Do Not Resuscitate Order. I apologetically told him why they recommended it and I signed it. He told me it was okay….that under the circumstances, we all did what he would of wanted. Then he said, “That’s why I had You sign that paper.” [the medical power-of-attorney….at which time I signed, I never dreamt I would be called on to use].  He consulted the doctors and all felt it would be prudent to revise it under the strange circumstances that he was improving. (It was an absolute Relief to be able to have his say in his medical decisions again. A Relief.) They took the DNR order off.

A Doctor said: “This has never been reversed. I will be honest and say that we don’t understand it. We are meeting every morning (like, 8 doctors…and if you include the residents, well, it’s ALOT of doctors) to decide where we go from here.” I could feel the doctors being more “careful” with what they said to us. There was some dissention in the ranks and they became cautious not to pass that on to us, which we appreciated, but could still sense. Until…

He got a new round of Fungal blisters early October. The month-old ones from the first round were drying up, healing. These new ones came in with the same vengeance and pain that the first round did, only this time we knew immediately what they were. The doctor teams rotated in that day, one by one at different times in the day. They upped the Anti-fungal, they upped the pain meds. Once again, he couldn’t be touched or moved without off the charts pain.

Cory said to me when I asked him if he wanted another ‘push-of-the-button’ pain medication hooked up to his IV, “I want to be Awake.”

I said, “You need to be comfortable, not in pain. There is no need for you to suffer.” He said again, “I want to be Awake.” He did not want to go again into the abyss of pain medication.

“Then we will take the pain meds slow. Can I give another push…you are hurting.” I said. The moans and the groans and the crying out when we or the nurses had to touch him to care for him. There is NOTHING like seeing your child in this level of pain. Nothing.

But, this was not about Me. And as long as he was capable of giving intelligible instruction on his care, we would all respect it.  He was my son, but had grown into a man through his cancer journey. If possible, things would be up to him.

“Yes, push the button.” , he finally said. Through the day we figured out when to give him extra pain meds if certain procedures were occurring, and to back off when he was at rest. So he could be Awake when he wanted to be, and somewhat comfortable when he had to be touched.

In came Kidney, and ENT, and Cardiology teams…..one by one coming in to lift the sheets and look at the new blisters and say, “mmmm, mmmm, mmmm. ” and purse their lips, and then look up at us with the hopeless look in their eyes we’d seen the first time around.

Then, in came Team Infectious Disease. New Face on Rotation that was on last time around, and this is what he had to say: “We can save his life.” He said the magic words. He was like….20? (not really, but that’s how anyone under 35 looks to me these days). “How?”, I say. “He needs Ambisome…..” then rattled off some statistics that I didn’t even hear because I was having a flashback to the Oncology unit when Cory had an Anaphylactic reaction to Ambisome and blew up like a balloon and his lips turned purple and he couldn’t breathe and they slapped a Big Red bracelet on his arm that he still wore that said AMBISOME on it. Aaaaaaand, I was like….see the bracelet? without saying it, just pointing, like duh, don’t- these-bracelets-mean-anything-to-you? He CLEARLY can’t have Ambisome….it could kill him. Yeah, and? “The fungus will kill him.”, he said.

Here we are again. My head is literally spinning. I can’t even manage to put a simple postage stamp on the 25 addressed Thank-you cards (in my junk drawer at home that I wrote 2 years ago) and place them in my mailbox…..and this doctor wants me to understand his point from the 10 words he’s just given me??? I simply said, “I don’t understand.”….which it turns out was exactly what he was waiting for me to say, because then he started to explain….

There was an Allergy team of doctors….another team….that could do this thing called “Exposure Therapy”.  From my understanding, little by very little, they introduce the allergen to the body under supervision, giving the body time to develop immunity and accept it instead of rejecting it. He said we should do this, because the digestive anti-fungal we’d been giving him has been halted by many digestive issues blocking absorbtion. Ambisome would not experience this problem in the bloodstream. And the exposure therapy would make it that he could receive it. OK, great!!!…

But then….In came team Bone Marrow Transplant team (these were the Cheerleaders, the positive, glass 3/4 full docs…..I imagine, because BMTransplants are a relatively new  lifesaving discovery (like 30 years)….it’s all hopeful. Just surviving is hopeful.) They’d been with us from the start, we trusted, and they felt like family. Buuuut…..they were not my go-to cheerleaders in this circumstance. They didn’t buy the Infectious Disease Team’s strategy. “He might not survive the Exposure Therapy. I don’t feel comfortable signing off on that. It’s UP TO YOU.”

(Wait, can we have a debate? With both teams in at the same time? I will provide podiums….please??!!!)

I wanted to say, “WHAAAATTTT??? Up to us? How is this medical decision up to us?? You are the doctors! TELL me, collectively, what is best for my son, and I will believe you becauseyouareDOCTORS!!!!!”, but I didn’t say anything. All the panic was safely in the confines of my head.

RV-AO258_DOCTOR_G_20140829105746

With concern in her voice,  she said,  “Call me when you’ve decided.”  I can still remember the moment of realization that Doctors were human. Praise God for them, praise be…they are the only reason my son was with us, but they are Human. My heart went out to their struggle. I stared at the phone for a couple minutes, shut my eyes and said a little prayer. I breathed and breathed when I wanted to scream and scream, but I was in the room with Cory, so I didn’t.

“Not happening” was what my brain said, but it was. I googled and googled and thought, “There is 1000 years of education in this hospital and I am googling a Cliff-notes version to help DECIDE what path of medical treatment to head down for my son???”…..HUH? At that moment, I felt that my life, as I knew it, was a scam.

I was still the Power of Attorney because of the amount of pain medication Cory was on. I was still the final say. But I knew when Cory was Him, so we made a commitment to make his opinion all we would ever vote for, even if we felt differently (which thankfully never happened). We made a commitment to being His advocate. HE was in charge of HIM and I wanted him to know that.

We had to get Cory’s opinion. I waited until it seemed the meds had mostly worn off and he was somewhat clearminded. I explained at 1 in the morning everything all sets of doctors had said. I said, “What do you think?” He was quiet for what seemed like 10 minutes, but I’m sure was only 2 min. He said, “Let’s Do It.” “Do what?” I said, just to clarify. “The allergy thing.”, he said. He was willing to risk his life to save it.  I agreed. His other parents agreed. To be honest….it was worth a try. The outcome, if it failed, was the same outcome if we never tried.

This life thing…it’s a team effort. No one does it alone.

My Son in the ICU: The Glass IS Half Full

wpid-img_20130919_204052_857.jpgSee the relaxed look in everyone’s eyes? It’s the look of relief and expectancy. Not unlike the feeling of expectancy when small signs of Spring appear after the winter. Seeing with our own eyes the trees budding brings the promise of leaves and fruit, seeing little stems break the earth knowing a tulip will soon follow, or that first day you can take off your coat outside after a frigid winter, because it’s finally warm and sunny…THAT feeling. Because you are at Peace that Spring has finally arrived after all that snow and ice and slippery roads.

wpid-img_20130919_203915_491.jpg In this picture, we are showing Cory all the Love Cory Day posts and pictures that everyone sent in….because we can.

wpid-img_20130919_203903_133.jpgWe are surrounding him with love and all shades of Happy because he is communicating and pointing and Here.  Simply basking in his Aliveness and Responsiveness.

cory family

It’s this day that this All Smiles picture was taken. We are smiling because it’s Spring, smack dab at the beginning of October!! We’ve taken our winter coats off and can’t wait for things to bloom.

The Vigil retreated. And rightly so. Cory was evidently going to be around a bit.

It was confusing to family and the medical staff alike as to what to do next… Leave? Wait? Treat? Wait and see what happens?…….What now??

Family-wise everyone, over about a week’s time (by early October)….went home. To work, school, families, and ordinary life. They still visited, but visited like they were visiting someone in the hospital who was getting Well……not moving in because someone was dying.

And Cory and I created a semblance of an “ordinary life” in a hospital room 5 floors up in Cincinnati Children’s Hospital. He was still bed-bound, but bound and determined to get better, get up and get going. He made progress everyday.

Medical-wise, things weren’t as clear. There was dissention. Cory literally had about 8 doctors, and each doctor had another doctor working with him/her. One Team for each body part. The Kidney team, Bone-Marrow transplant team, Intensive Care Team, Infectious Disease team, Ear, Nose and Throat team, Pain-Management team, Urology team, the Nursing team, etc.

[I want to precede the following details by saying that we have NO complaints about the medical staff. None. These were human beings trying to save our child with everything they knew and didn’t know. I am just reflecting some of our feelings at the time, which were obviously filled with emotion. I am sharing these details and feelings with the mission of being Real. But EVERYONE, regardless of disagreements at times, were acting in what they felt was in Cory’s Best Interest. I have NO doubt in my mind or heart about that. Only Grateful, only grateful, that every single medical professional cared SO much ❤ ]

They attempted to keep a United Front, but it was evident there wasn’t.

One of the Doctor Teams was reported by a nurse to Someone, Somewhere, and was under Some investigation-of-sorts for Something in regards to Cory’s case. That’s all I knew and wanted to know…..I still don’t. We trusted them to work it out, and said so….And apparently they did.

In another situation, we got the impression that One Doctor Team often believed, it seemed, that another Doctor Team was too “polly-anna” with us, using words like “very optimistic”and  “miracle” and consistently focusing on improvements. This May Be, but we really did hear Everything….the hopeful, the hopeless, the good, bad and ugly. We did not have our heads in the sand. We took in the facts and chose to look at the cup half-full (that was Cory’s way…), and that’s all that’s to it. Encouraging us and Cory wasn’t always viewed as a good thing by All the doctors, but we really did appreciate the doctors who did.  We also appreciated the doctors who didn’t. It gave us a very Real sense of the situation.

Regardless, though, we would still be hope-full and fill that room with love and not “give-up” on Cory, regardless! Because that is exactly what Cory verbally told us he wanted.

And as parents, one wouldn’t naturally do anything else. You cheer your kid on in spite of the odds, right? At their soccer game or their hospital bed-side. That’s our job. When your kid is fighting for a goal, a touchdown, a degree, or his life, he needs to hear his parents cheering him on….Plus, it was a win, win.  If he were to live, he would recover with positivity and love. If he were to die, he would die surrounded by positivity and love…. Would anything else make sense for a family To Do in these circumstances??? My experienced mind and heart says, “No”. I’d approach it that way all over again and would hope my family would do the same for me.

Yet, Another Two Doctors (of like 16) wanted us to blatantly tell Cory he was dying, now that he was more responsive, so that he wouldn’t “misunderstand” his improvements. (But…..No One understood his improvements.) These very select doctors spoke about it to us Daily, which felt like Pressure and we resented. (We ultimately felt that this had more to do between them and the other Doctor Team’s different opinions than it had to do with Us, but we were the ones hearing about it.)

We knew Cory. They did not. We expressed this very sensitive information of what he had been through, how life threatening things were, and what some doctors saw his chances to be, to Cory in Cory’s way and in Cory’s time. We slowly told him Everything, as he was slowly gaining his mental and emotional footing….which, frankly, Cory didn’t want to discuss further….so, he acknowledged it, then went on. This was his way throughout his entire Cancer fight. Good or bad, it’s how he wanted to deal with it. He didn’t want to talk about it, give energy to it, or worry. His response was precisely what it had been all along….OK, now let’s keep truckin’.

Because of this, a Particular Doctor (who we had never met before and didn’t know Cory personally or professionally AT ALL) was still not convinced Cory understood the gravity of his situation and this Dr. continued to address it with Charlie and I regularly. It was a priority of our family to treat the medical staff with the Utmost of Respect and Courtesy at all times….. until we could not take his harping any longer. Charlie told him in no uncertain terms that  Cory had indeed been informed, but we were not going to remind him Every Day of this this particular doctor’s prognosis that things were Hopeless. And we didn’t need to be reminded Every Day either that he thinks things are Grave. We Knew. And so did Cory. But, we followed Cory’s lead in focusing on the Living Moment at hand, and Hoping. The End.

We were glad when this Dr.’s rotation was over….

Now that Cory had a say in things again, this was his rodeo and we advocated for all to respect how he wanted to ride. He wanted to Live and that’s what he focused on, so, so did We.

Living: Holding a cup and putting a straw to his mouth by himself. Drinking a milkshake. Swabbing his own gums and teeth. Picking his leg up and down 4 inches with the Physical therapist. Pushing his own buttons to move his bed up and down. Typing a single message on Facebook. Listening to a Tom Clancy book-on-tape. Having a daily routine even though 3/4 of it was still sleeping.

He was too busy trying to Live to worry about dying.

Our Neighbor in the ICU, Jonathon

Cory was doing better (relatively, of course). “Well” meant, first and foremost, he was Alive…..weeks after they said he wouldn’t be. He was showing signs of healing. He was cognitive and clear-minded. We had just written a “schedule” of our daily routine on a white-board, made up of waking up, sponge baths, prayer/meditation, reading, physical therapy assignments, occupational therapy assignments, times of ENT doctors coming in, times of BMT doctors coming in, times of Infectious Disease doctors coming in, times of rounds and visitors, times of  meds.

I met Amy in the “parent-room” of Floor 5, Pediatric ICU at Cincinnati Children’s Hospital. A place where there was constant coffee, on Tuesday’s pizza provided by LaRosa’s, and lots of Tears on cell-phones. It didn’t even phase you to see a parent on a couch in the Parent Room Sobbing and sharing on their cell phones the all familiar words of blood counts & breath counts & open eyes & words said & inputs & outputs….. Sometimes, we talked to one another, sometimes we didn’t. Usually, you just walked by to fill your coffee like you were walking in the mall seeing anyone on their phone, because it was just the way it is in the ICU. But everyone had the same Despondent look in their eyes….it’s like nothing else, and we (Cory’s Parents) would talk of it often. Passing parents in the hallway…everyone had the same Look. A look of sadness, desperation, hopelessness and hopefulness all mixed up.

Anyway, Amy was actually more upbeat than others (she’d just arrived, that’s why)…her son was 24 (a year younger than Cory), had a bone-marrow transplant 11 days before (Cory was going on 74 days), and had lung issues, so was sent to ICU because needed to be on a ventilator. They were from Kentucky, and her husband and she shared their pans of Lasagna and Tuna Casserole with me. They had the cutest Kentucky accents with a smile with every word they said. They uplifted me just while they talked.

We passed each other daily for about a week, in the hallway, the cafeteria, the elevator, or the Parent Room. “How’s he doing?”….and we would get all the STATS(which we both completely understood because we had a crash course in nursing against-our-will).

Then one day, an ordinary PICU day,

Cory had just fallen asleep. I got up to go get more warm blankets, to refill my cup with ice, simple things, opened the sliding doors to Cory’s room and sensed EMERGENCY.  Nurses from who-knows-where and doctors and lots and lots of people were flooding the room next door…(in the same room they all came flooding in when I’d arrived with Cory  in the ICU.)

Bur this was Amy’s baby. Everyone running, machines rolling in….I knew to shut our sliding glass door and stay in. It’s slow-motion from this moment on…..

I turned to the right, and through the small rectangle  window that  connected  our rooms, or maybe it was just outside our room? I can’t remember exactly, but doesn’t matter….

My eyes wide open and shocked seeing the mass of people in that room and the doctor take the paddles and place them on his chest and the words I couldn’t hear. His body jerked and arched, then relaxed, then jerked and then relaxed, and again jerked and relaxed. I turned away, sat on the floor and cried.paddles

How is my child still alive after 82 days and hers is dying after 18? How? Why? Whaaaat? I  prayed the Our Father 3 times. I prayed, “Let their baby live” 12 times. I panic-prayed.

It breaks my heart still. I would give those days to any parent, sibling, or person in an instant if I could. Really would give my whole life for that.

And seeing the paddle stuff in real life on a real human being, on a real Amy’s child….is NOT like seeing it on TV.

I stood back up. Thank Be  that someone shut those blinds. I went and stared at Cory with my heart racing and tears flowing for at least an hour. I was afraid to step back out of the room.

He died. Take that in….Jonathon died. He lived 24  years. Twenty-Four. I was barely getting started at 24. Thanks, Cancer.

I knew he died, because the next morning the room was empty, the bed was made to crisp, and there was no Amy or Jonathon to be found. I missed her, I wanted to hug her, and she was just…gone…and I only knew her first name–Mom.

The “survivors guilt” was overwhelming. And still, in a way, is. I had over a month more with my son….30 more days of conversation, and touch, and physical therapy, and prayer, and hugs and kisses….that she didn’t.

I had told Cory about his neighbor when they were admitted. To give him a sense of Solidarity or that he wasn’t the only 20-something year old in the pediatric ICU of a children’s hospital that had cancer, then a bone marrow transplant, then complications that sent them to the PICU.

I didn’t tell him about his neighbors outcome, and I prayed he wouldn’t ask. He never did.

My son in the ICU: The Brink of Life

It was almost October, 2013

Cory had made a turn from the brink of Death to the brink of Life.

Just so happened to coincide with his transfer from a typical hospital room to a spacious, light-filled, sunny hospital room (still so grateful.). Which was a perfect place, as far as hospital rooms go, for Cory to be, because he was an outdoorsy guy through and through. Venture to say he spent an entire 1/3 of his life outdoors….camping, climbing, cliffing, biking, caving, on trails, off trails….he had no need for material things, just a need for Nature. So it was no surprise that we saw him open up and blossom a little when he could once again see outside and soak up some Sun.

This is what he looked like from the Outside:

His body and face and bald head were covered with purple lesions and sores (but they were just beginning to dry up and show signs of healing)….and we put his glasses on him during the day, no matter what. . Because if he was alert (he was alert and awake longer and longer every day), even if momentarily…at least he could see. The glasses barely balanced on his nose, that he was sure to lose, due to the fungal blister that draped over the whole of it. And he had a feeding tube fed down one of the nostrils, that was only used for medications that had to be absorbed orally. His stomach couldn’t handle food or drink yet.

He now had a PICC Line in his neck, the vein of his existence…literally.  It had been moved from his arm to his groin to his neck because of infection (Forever fighting bacteria that would take up residence in the plastic of the lines)…yep, just stuck right there in his neck. 3 lines that went into one place (that artery headed directly into the heart)….and branched off what looked like 20 lines that fed into the 3. Watching the nurses “change the lines” looked like the wiring of a computer, with electrical lines long enough for them to get tangled in the web of at any moment. And they all fed into this one hole in Cory’s neck.

His PICC line fed him nutrition (because he couldn’t eat or drink), hydration, blood, platelets, numerous antibiotics or anti-virals or whatever the medication of the day was. And all of these things were in bags hanging on his pole, but couldn’t be all at once….so those blessed nurses had to have a “line up” of what to hang, send in, order, take down, and when. See, they could be football coaches, too! —  “Send in the red-blood cells, take out the anti-viral, send in 2 antibiotics and in the Second Half, we’ll send in nutrition….skip the digestive system, go for the tackle and time the Platelets!”— (…and I’m hearing that college football announcer voice right now….) These nurses were totally winning this game in my eyes.

Seriously, In Awe, all. the. time. Nursing isn’t for sissies.

Anyway, he also had an IV in his wrist where his pain medication was administered as well, or whatever additional medication they determined he needed.

He had stickers all over his chest that attached to wires to monitors for his heart and breathing rate, and a pulse ox (like a band-aide) attached to another line that monitored his oxygen. And we could watch it all on the monitor from where we sat….just like on TV.

And he was adorned with different machinery daily….EKG machines or Dialysis machines or photosynthesis machines or respiratory assistance machinery if needed, or x-ray machines when his line would go awry near his heart, or even a portable cat-scan machine when he was thought to have had a seizure.mri

He wore a hospital gown like a sheet that often ended up around his waist, because it was too difficult to fasten or dress him with all the tubes and lines attached.

cory zebraAnd he wore his sisters zebra striped heating blanket over top that she loaned him. So him.

He hadn’t been out of bed in a month, he couldn’t sit or stand.

We sponge bathed him in bed, we gauzed his teeth and gums (because the sores in his mouth never left and couldn’t handle a brush), we held cups to his mouth for sips of water through a straw that we held in place for him as he gradually was able to handle drinking, we applied a honey treatment to his 100+ sores that covered his body, we pushed the buttons to move his bed and head and feet up or down to his liking, we hand-syringed his stomach through his feeding tube to empty it of whatever might be building up in it if he was nauseous. He was 25 years old and could do nothing for himself at this point, and we were his pinch hitters.

And he was BEAUTIFUL.

He was responding with conversation and slight smiles and better “numbers” and signs of healing instead of signs of death. He was still Alive when he shouldn’t have been.

And this is what he looked like from the Inside:

In one of the first few days in the Light-filled hospital room, Cory said in his raspy voice,

“Don’t give up on Me.”

“No way”, I said.

And we didn’t.

From an outsiders point of view, the brink of death and the brink of life might not look all that different, but we could see the Resolve in Cory’s oh-so-tired eyes…THIS was the real Brink of Life. It was in him.

This time, I didn’t have to sign anything on his behalf— He signed off on his Will to Live all on his own.