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: 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.

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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 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.

My son in the ICU: …and then LOVE came in.

Late September, 2013: Cory made an amazing turn. He stopped hurting, we started Hoping, he came back to us mentally and was weaned off his pain medication. Doctors used words like “Miracle” and “Never been seen”.

And Love exploded.

cory & anna cropAnna, his love and friend,…who the moment she got word that he was dying, up and left her home and job in Arkansas, drove 9 hours straight, and came to him. The moment they saw each other brought the hospital room of men and women to tears. The connection, the pure  love witnessed there was more moving than any novel ever written. I can’t even begin to describe it. He came back to life like nothing we had seen so far. She saw beyond his pain and sores and scabs….it’s like none of that was there. And he looked at her like an angel arrived. Charlie even joked, “He’s never looked at me like that!”. Her arrival on the scene brought joy and healing and agape love to Cory and to all of us that witnessed the most tangible connection of two souls we had ever seen. And she stayed with us and with him. Now there were three of us rotating chairs and parent beds at night….and Cory or we wouldn’t have had it any other way. This was Love.

wpid-img_20130917_155114_312.jpgAnd his friends came, all drove, walked or wheeled in and sat around him at what they thought were the end of his days and cried and held his hand and brought cookies and notes and reminisced for him when he couldn’t respond, This was Love.

cory familyAnd family and cousins who used their saved pennies traveled for miles and miles from Seattle, Arizona, Alaska, Tennessee, and North Carolina, and the Uncle who poured his heart and talent into writing and recording Cory’s Song…and the grandparents near and far who held vigil for days, or sent communication and prayers across the miles, or made sure we ate and slept, This was Love.

His brothers and sisters, who sacrificed so much during this time (schooling, time with friends, absent parents) or had countless family meals in the hospital cafeteria or countless hours at their dying brother’s bedside or made wallets out of duct tape for Cory’s lottery money  cory lottery money……This was Love.

Dave&Debbie who stepped up and ran the whole Home Show solo and those family, friends, teachers, and leaders who pinch hit in my other children’s lives when I was absent from my (and their) life while I cared for Cory…This was Love.

wpid-img_20130916_180134_516.jpgAnd the laughter in the room when the crowd was there, piled up literally on top of chairbacks and arms of chairs and all over the floor (I’m sure the PICU team questioned allowing us the go ahead to let family/friends “come thru”, because they surely came but didn’t necessarily go “thru” ), the jumping to their feet and to his bedside to hear Cory muster a word and do anything at all we needed to help.
This was Love.

And the endless emails and texts and care packages and visits from my little friends and big friends and new friends and old friends…This was Love.

And those who sent essential oils and did Reiki and sat silently and peacefully beside Cory and delivered us homemade meals…This was Love.

And the doctors who treated us like family– who showed up on their off days, pulled up a chair and spent their precious little free time with us and chatted with Cory about his adventures, or who offered to personally go pick up our dog from our home to visit Cory, or promised to make a trip to Utah to hike with him when he was on his feet. And they meant it…

This was Love.cory dr. mary (Dr. Mary <3)

And a group of my dear women friends:  daycare moms, church women, old and new friends showed up one day  at Cincinnati Children’s Hospital and brought me snacks and gift cards and written sentimentscory sheyna moms and they went in the church chapel and grasped my hands and prayed with me. Prayed for my family and for my son. They showed up and lifted me up and held me up when I felt like I couldn’t fake my way through one more day, with their lasting embraces. If I shut my eyes, I can still feel it. This was Love.

wpid-img_20130917_131120_441.jpgAnd Jenny….the nurse who jumped through more hoops than I knew to make an Outdoor Trip happen for Cory. 8 people transferred him to a stretcher and rolled him and his lines through a maze of doors and units to get him out to the patio.

And Brian, the music therapist who brought us the blessing of guitars and egg shakers and music to Save Cory. They knew him . They knew he loved outdoors and he loved music, so they made it happen for Cory. From love, not from their duty of their job. wpid-img_20130917_103127_272.jpg

And the close friends of his who gathered around his stretcher that day, grabbed an instrument and played music with him for an hour while he laid horizontally and could barely strum….This was Love.

And his old high school friend who was there that day and in tears asked me…”I just need to know, does he know Jesus?” and I said, “Would it make you feel better if I directly asked him?” and she said, “Yes.” So I went to Cory, outside breathing the first fresh air he’d breathed in months, and I said, “You know how much she loves Jesus, right?” and Cory said, “Yes” and I said, “She wants to know if you love Jesus.” and he said after a moment of thought, “Yes, yes, I do.” and I told her and she looked relieved and took a deep breath and smiled. This was Love.

And his very best friend, who was his sidekick for many years and they took care of one another endlesslywpid-img_20130918_133741_111.jpg ,that Lost her Job for staying at Cory’s bedside for days on end. This was Love.

 Then Abby , Cory’s cousin in Colorado, started a Love Cory Day (that lasted weeks) on September 19th…. she said “Hi guys! we want to celebrate Cory (my cousin) tomorrow. He’s a cancer fighter and a truly amazing kid. To show some love everyone please wear anything red and post a picture. Please support♥” HUNDREDS across the Ohio and the country donned red shirts and made signs and smiles cory abbycheering him on….

This was Love.cory love cory day

love cory day laraIt spread across the nation, literallycory kids, and a friend who’d never met Cory made a Facebook emblem- that people we knew and lots we didn’t- shared on FB and posted as their profile pic in solidarity and support for the miracle we were witnessing ….it said, “Go, Cory, !!” …This was Love.cory go cory

And the prayers, and the pictures, and creativity came rolling in…..Cory once said to me, “Those Prayer Warriors are a real deal, aren’t they? They aren’t messing around.” ….This was Love.

I could go on and on. It all helped. It was all was provided at the exact moments it was needed, because no doubt about it…..God IS Love and it’s the only thing that matters. I didn’t just read it on a page, I lived it. It was overwhelming and precious and it truly carried us.

At times like this, everything else falls away, and you just see hearts…it’s the most beautiful thing.

Cory’s last Facebook post on October 8, 2013, while fighting back mentally and physically from his brush with death.

“Can you get me on Facebook?”-C

“Sure, do you want me to read or type?”-Me

“No, I will do it.” -C

It took him 45 minutes to type this one finger at a time while I held the iPad up on his torso.

First time being on here here in
quite awhile, and my activity will likely remain minimal, but my mom has been keeping me up to date with all the Love, so I wanted to acknowledge and return some of it really quickly. You all kick ass.” –Cory Jay

My Son in the ICU: MIracle Man

 September 2013….I am so touched by Life. The good, the bad, the in-between. I’m touched. And Life brings me to tears often.
My beautiful daughter will say to me, “You are crying, AGAIN?”, because it might be the littlest thing….

So to have an extraordinary experience such as one’s child being in extreme suffering and inexplicable pain and being told he is dying, come to an already cry-ie, emotional, touchy-feely person mom…..where does one go from there?  I found out.

Silence.

That’s what’s next. Silence. enjoy_the_silence

Because there is nothing left. It is the point of realizing one has No Control, No Power, No Influence, No Nothing. A small demonic fungus, the size of a cell…..a cell. Was bigger than Mom. Was bigger than Dad. Was bigger than the doctors. Was bigger than Life.

And that’s hard to fathom. It’s hard to take. But there is No Other Choice. This micro-something has more power over your child than You. You who birthed and invested every emotion and moment and time and energy into this Other Human Being Who Is YOUR CHILD, a piece of you, came OUT of you….then THIS micro-something fungus is determining your child’s destiny and you can’t do.one.thing.to.stop. it. and it is causing him pain unending. And, apparently, neither can the medical community stop it.. Even they have called wolf.

All I could do is Pray. To the one thing bigger than me. Bigger than the demons. Bigger than the micro-organisms.
God.
He’s all I had left.
Please, please, please, God. Even though there are 7 BILLION people in the world. Save MY son. 7,000,000,000,000. Save MINE.
I thought about Africa, I’ve been to Haiti, I thought about the other precious little ones I peeked in at in the PICU who were our neighbors now, I’ve seen pictures of orphans in tons of countries…..Lots and lots and lots and lots of Mothers lose their sons Every Day. But save Mine.
Because why? I could give the same list of convincing, heartfelt reasons that any other mother could…But save HIM. Because I Love You, God, save My Son??
I prayed with my whole self. Offering my whole self, “Take me instead” …to save him. I begged. It was all the hope I had left.

“Whoever does not love, does not know God, because God is Love“—John 4:8

Love.
He showed up. In a big way.

I have no doubt, in direct result to mine and many others prayer….no doubt. Not that we are special in the 7 billion people in the world, because many, I’m sure, share the same story of answer to prayer, but I’ll take it.

My son stopped hurting. He. Stopped. Hurting. I cannot express in words what this is. There are no words. He stopped hurting. If you knew the agony, the pain that I do not have words for that we saw him experience…the fact that it PAUSED.

That, in itself, was a miracle. Thanks Be.

He made a Turn that last week of September. Mentally and physically, Cory started to come back to us….The doctors were Baffled!

Here are my texts to a friend in September :

The doctors said….”never been reversed” ,”that would be crazy” ,”would be a miracle” ,”never known anyone to survive” ,”he has anywhere from 2 days to 2 weeks”….well, God has other plans :)))))
They are now saying, “never been seen” , “miracle”  and “no record of this rally ever occuring”….
Hi friends…Though Cory is still “very sick”, Prognosis has changed! They are talking about moving him out of ICU this week. Miracle Man. Thanks so much for continued love, prayers, and support.

We called him Miracle Man.

My son in the ICU: No showers, No answers, No can do.

Early September, 2013:

I’m wearing the same clothes I wore when I drove 90 miles an hour to get to Children’s Hospital three days before.
After the Saints saved him, I found a chair and pulled it to the side of Cory’s hospital bed, held his hand, and sat. And sat. And sat….I Just stared at him for days.
Eating was not a thing, showering was not a thing, brushing teeth was not a thing, and sleeping was not a thing. I mean, I slept with a pillow on him and my head on it…sometimes.
I’m sure I was a little delirious, but I remember people coming and going, and I remember my mother pleading with me to lay down and get some rest, and I remember his dad, Charlie, arriving at some point.

Etched in my brain is Cory. Bald, hairless everywhere, with a breathing tube coming out of his mouth connected to what looked like miniature drain pipes. White medical tape on top of and under his mouth, holding the breathing contraption in place. A feeding tube down his left nostril into his stomach. A Pic Line covered with bandages and tape in his left arm near the shoulder with more “lines” than I could count, looking tangled and feeding sedation and life-saving medication and blood and platelets into his body.
An IV in his left wrist with more medical tape and more of something else (I couldn’t keep track) into his bloodstream. They could only put so much into one place.
His right arm was still in a sling and couldn’t be used as an access point for intravenous treatment, because the cadaver humorous bone in his right arm was broken…(long story for another cancer)…
He had a “pulse ox” taped to his left finger, he had 3 heart and respiratory monitors stuck to his chest, and he had a catheter.

And he had his glasses on.
Just in case.

I remember thinking so many times, “How can this be?”

But it was.

He very quickly developed blisters all over his back. Some the size of a fist, filled with clear or yellowish fluid, and they opened up, and were a dangerous and painful thing. Skin was prime property for the Invisible Evils…Bacterias or Virus’ or Fungus’…to make their way into his body.

(This is a large blister under my finger that I was trying to show the size of  to text this picture to his doctors.)

We met one of the heads of the Bone Marrow Transplant Unit. Cory was now her patient. She is absolutely beautiful, put together in well-thought-out stylish clothing, a gorgeous Lithuanian accent, and a lab coat. She had showered, brushed her hair and changed her clothes, evidently. It’s the first time I became aware that I hadn’t.

“So. Hmm. Hmm. Hmm….”, she said looking studious as she stood at the end of Cory’s bed . He was sedated, which is common when on a ventilator. She looked at him for too long in between sentences, seemingly giving an indication that she was stumped. “Well, he had a bacteria come up on his labs that caused the septic shock….got into his bloodstream…who knows?  In those long showers? Who knows…..We are treating with antibiotics, his organs have taken a beating, so we will keep him on dialysis and the ventilator. If all goes well, we will take him off the ventilator at the end of the week.” She seemed very matter-of-fact… “no funny business”, I could almost hear her saying from her demeanor….and I’d never met her before. But I immediately trusted her.

“But those blisters…I don’t know.”, she says, pursing her lips and shaking her head. —-(I feel my heart sink. I need them to know. They are supposed to know!)— “They could be from GVHD(Graft vs. Host Disease–the immune system attacking the new body it’s in) or it could be the Septic Shock. They look like GVHD, but they are only on his back??? Doesnt make sense that they are only on his back.”

So…comes down to this. If blisters are from the Septic Shock they will treat by upping the immune system to fight the bacteria……if the blisters are from GVHD, they need to suppress the immune system to suppress the attack on the skin organ. Totally opposite treatments. If they are wrong, the treatment makes the other diagnosis/symptoms worse.

I will forever wonder.

“We will call in Infectious Disease team to get their opinion on the blisters.”, she says.

They would diagnose the blisters, my mom would diagnose my attire. She brought me new clothes the next day….Dark Denim Mom jeans, and a couple Reebok t-shirts…yep, they go on my body, I can button them and they are clean! Good to go. The rest of the week, I rotated these with patient scrubs and white t-shirts that had CHMC permanent markered across the chest.

I didn’t have Dave bring me clothing until the second week…..because Denial was a friend to me, and I thought Cory might actually be back on the Bone Marrow Transplant Unit and I might be back to work the next week…..she said ventilator out by the end of the week, right??? That’s when things go back to the way they were. On his way to full grafting, full immune system on the BMT unit, then home. We Will Be Back On Schedule by Next Week! Oh, yeah! …(Oh, no. But it got me through the day….Denial got me through many, many, many days.)

Charlie was the sensible one, and oh, so diplomatically said on day ….day something…. “So! I will go to the parent room and shower, then YOU can go to the parent room and shower, good plan?”  It wasn’t really a question, and I knew that.  Bless him for trying to bring order and routine and sense into our days there, when I felt none. I didn’t want to leave Cory’s side. I was afraid to go shower, afraid to leave him. But I did.  ”He’ll be okay, he’ll be okay…go on.”

In the shower, I sobbed and sobbed. I was in a ball in the tub. It was the first time, but certainly not the last. I told God….I cannot do this. I cannot. Do not ask this of me….or him.

My son in the ICU: We are Going In.

August 31, 2013

I wrote Cory a text saying I would come a little later tonight to spend the night with him in the hospital because I was going to watch a movie with the family first. (I would spend the nights on the weekends with Cory in the hospital. It was Saturday. I was trying desperately to juggle all that all needed from me…Impossible was another word for that.)  I was, on the inside, excited that it was a three day weekend….I could spend three nights with him, my recovering child/man.  He was doing as expected since his transplant, considering.  I was always trying to balance not “mother henning” him with “being there” for him. He was 25 after all, not 15. I WANTED to smother. But I think I did a rather good job of self-control to respect his Love of Solitude vs. my Love for Him.

I was literally getting in my car to leave when I got the call.

“Mrs. Powell (which Im not, but I answer to both, because I know they mean motherofyourson) …you should come right away.”….”Im on my way…whats happening?”….”Cory is in Septic Shock, he started a fever 30 minutes ago, and now….”…..  “WHAT? WHAT’s THAT?”…..”I cant give you any more information until you are here…..hurry.”…….”HURRY????”….I was on I-75.   I sped to 90 miles an hour saying “Please God, keep him alive” over and over and over and over and over.  I imagined a police car behind me trying to stop me for speeding….I decided ahead of time that I would keep going. He could ticket me in Cory’s hospital room.

I dont remember getting to his room other than I ran and ran and ran. I couldnt be fast enough. I ran into his room filled with 15 medical personel. I squeezed between people like in the VIP section of a concert…..he looked at me with a “help me” look that is burned into my brain. I grabbed his hand and said, “Im here.” He was sick…he was suddenly, inexplicably, really, really sick.

I was just was here last night. We played bananagrams, he won.  We played Palace (which was really called Shithead, but I insisted on finding the real name for the game so Miss Sheyna wouldnt have to say Shit….). I love that he humored me/respected me and called it “Palace” for me…now, I could care less what it’s called. We kept score on the whiteboard of the many, many games of Palace/Shithead we played during his hospitalization. In the end, he won, I lost. How appropriate. cory keeping score

He was sick and helpless and sunken in his face and labored breathing and ohmygodhe’sdying. I never lost eye contact with him…I was telling him everything would be okay when it wasnt, when I didnt know. They were talking and sticking and covering and pumping and watching numbers and pushing meds…. Then they pushed me. They moved me and threw an oxygen mask on his face and I saw his eyes roll back in his head. And they unlocked the locks on his bed and rolled. Fast. Out of his room and down the halls….15 people rolling my son and his “friend”, his pole, with all of the medications attatched that were flowing into his arm. And I went too. We were One Being. Cory and the medical personnel and his “friend” and Me. Rolling…..I can still hear the sound of the wheels on the linoleoum. Pshhh, Pshhh, Pshhh, Pshhh…….

emergency-workers

We were in. New doctors, new nurses…lots of them. One beautiful black woman talking to Cory, so close to his face, comforting him. “We’re going to help you.” “Its ok, sweetie, we are taking good care of you.” She must’ve seen the panic in his eyes. ICU nurses are saints. Saints. Saints I tell you….. I was in the back. I kept trying to get to him, but trying to respect their work, the work of those who went to college 1001 years to SAVE MY SON,….I didnt want to interrupt their saving my sons life. I. Just. Wanted. Them. To. Save. My. Sons. Life. , But I would reach in every now and then…for his hand… to touch his face…his leg. I wanted him to know I was there. “Can you stand back here, Mom?”said someone smarter than me….”Yes.”

“Excuse me, can I ask a question?”, I say to someone I think is a doctor, while they are pumping and pushing and prodding. “Yes?”, she says. “Should I call his Dad to fly in? He lives in Arizona.” …

“Yes.” she says, “I would.”  I did.

It’s getting crowded in there….Hello, GVHD

Mid-late August 2013:

Have you noticed the initials….BMT, BK, GVHD….well, this is just the beginning. The scary part is when you understand what it all means and you are NOT a medical professional….you are just a Mom.

GVHD stands for Graft Vs. Host Disease. And Cory has it…a mild case considering, but he has it. His new marrow is attacking his body like it was a foreigner (shhhhh….it’s not supposed to know). The New SuperHeroes (immune system cells) are confused. They are in a new place and there are different things (likely because the match wasn’t exact) and this new immune system is recognizing the Very Body it’s in(a.k.a. Cory’s Body)  as foreign, as Enemy, and is attacking.

This is two/three weeks since C-Day (transplant “Cell-Day”) and Cory’s skin is discolored and dry and itching. Every night I come, I slather him with Johnsons baby lotion (haven’t done that in 20+ years)…. His back and his arms and his neck and his face and his chest. He is weak. And really, really itchy. If I could type 15 “itchy’s”, I would. We bought him one of those wooden “itch-yourself” hands from Cracker Barrel. It’s his best buddy.

He slowly takes himself to the bathroom 2x a day and literally takes an 1.5 hour shower.

“What are you doing in there?” I call in because I’m making sure he’s still ok…and breathing….and upright.

“Peeling off my dry skin. It’s so uncomfortable. Can you please go buy me powder?”

I ask the nurse for powder. She will put the order in and it will come the next day. He needs it now. I tell him I will go to Walgreens (at 11 PM). He says, “Please bring Tums, too.” Tums. OK.

slowClifton, OH, in Cincinnati, is not the place to be buying drugstore items at midnight. But I go….I look around, bolt from my car into the Walgreens. I find Bond Powder and multi-colored Tums. Does he really think this will help the nausea and vomiting more than what’s already prescribed to be flowing into his veins??  Even if there is the chance of psychological relief coming from a bottle of Tums, I will risk my life to get it for him. And I DO feel as though Im risking my life….

At the check out, I ask the officer at the front door (yes, there is an officer at the front door of the Walgreens with the barred windows in Clifton, Ohio….just saying, my instincts aren’t that far off)..

I say, “Will you please walk me to my car?” And he does. And I have Gold Bond Powder and Tums for my postcancerous, bonemarrowtranplant son, IN HAND. I feel a little like a super-hero myself as I close my door and “All-Lock” as fast as I can.

He is uncomfortable, and obsessed, and damn that skin…it’s definitely attacking his skin. It is literally peeling off, especially his toes and unmentionable places. Whole layers of dead skin just hanging there. And it itches and it hurts. And his eyes…they are super dry and hurt and blurry vision.

There is Acute GVHD and Chronic GVHD. The Acute is temporary…the new cells settle in in these first few months, and adapt and believe this Body is where they Belong. Then there is Chronic, where the cells never quite fit in….and it’s forever, the GVHD flare-ups and battles. But the patient IS alive, and IS living, and IS a Dad or a Mom or a Daughter or a Son…..and they smell and see and love and feel and touch and hug, but they continue to suffer and be treated for the GVHD—never quite 100% because of those stubborn foreign cells…..but, it sure beats the alternative.

Well, at this juncture, we don’t know if his GVHD is acute (which it probably is) or chronic. Before 100 days post-transplant is usually considered Acute, if symptoms occur after 100 days, it’s considered chronic, to fight and treat and flare up ongoing.

Cory is truly, just grateful to be alive, but isn’t afraid to say, “This part sucks.”, if it was warranted….and GVHD does suck. It can attack any organ. (Just through listening and learning and googling, I’ve picked up that the digestive system being attacked is bad,bad news.) So far, it’s just Skin and Eyes for Cory, so we are good. whew…Just a couple of scuffles.

He’s got this…..right??

I come in the room and he is half-asleep and I place the Gold-Bond and Tums on his food tray full of uneaten food that he has wishfully ordered and can’t eat.

As I unbag it and squeeze the items in between his melted milkshake and sandwich plate, and say, “Here’s the powder and Tums…is this what you wanted?”

“Yes”, he says weakly, and is finally finding rest as his eyes slowly open and close. Some meds must’ve kicked in. I’m grateful.

As I turn around to head to the chair/bed I’ll be sleeping on, I hear,

“Thanks, Mom.”

Hearing that chokes me up….If only I could really do something.

“You’re welcome, buddy. Wake me up if you need something in the night.”

“mmmm…hmmmm.” he says.

Sleep tight.

Meet BK…the unwanted house guest who never leaves.

Mid-August 2013:

He was never the same again….after this chemo round, after his transplant.

He just fought. and fought. and fought from there on out.

It started with just a little scuffle now and then, and ended in a war.

The scuffles so far….vomiting as a hobby, anaphalactic reaction to Ambisome, a bacteria now and then that would be knocked out by his antibiotics, and pain of some sort or another all the time.

Good Swings for him are that his Immunity numbers were building, the donor’s bone marrow was grafting(becoming truly part of Cory’s body).

Then Mid-August, a couple weeks in, I came to his room one evening (we had just begun cautiously swinging back into a routine—Mom took days, I took some evenings and stayed over on the weekends).

Cory is on the edge of his bed, holding his pole, pulls himself up to go the 3 feet to his bathroom. I jump in front of him to open the bathroom door for him, and to my shock, there are three urinals lining the wall (plastic containers to measure output)….filled with what looks like straight blood.

“What’s going on?? What’s wrong?”, I say as calmly as possible.

“It’s a virus”, he says. He dismisses me from the bathroom, pulling his many lengthy lines in the bathroom with him….and his Pole, and shuts the door. I am panic-stricken. I turn on my heel and exit his room, on a mission to find the nurse and an Answer.

Why didn’t they call me today to tell me??? …Oh, yeah, he’s 25. They told him.

cory BKI found my answer….BK Virus. And it would be with us, and alive and well in Cory’s bladder Until.

90% of humans were exposed to it in childhood as a primary (first) infection in childhood. The virus usually “goes away” or becomes dormant and many never even felt sick. This virus can get into your blood and spread to other body organs, and it particularly likes to hang out in kidneys and bladders. It stays there, usually causing no harm or sickness because your immune system has your back and this is an easy virus for your Immune System Super-Heroes to keep under their capes.

But then…if there aren’t any Super-Heroes, that means No Capes…(and those silly Viruses laugh at antibiotics)…so these dormant viruses get a second chance at life in a patient with a compromised immune system.

This active virus caused Hemorrhagic Cystitis: Symptoms: Frank bright red blood in urine, pain and burning and high frequency and urgency, and clotting (yes, clotting.) For 2.5 months.

Bless his head-held-high, no big deal Self, saying “Thank-you” to everyone in the midst of the blood, the vomit, the pain…God bless him…please?

They talked like it was common, like it would pass, like this was a scuffle.  But they talked matter-of-fact, really, all the time, so sometimes it was hard to read what we should really be worried about and what we shouldn’t. But containers full of what looked like straight blood concerned me.

So I Googled it. I don’t recommend that… I worried and asked questions and Googled more (bad, bad idea)….and I ended up Really, really, really Worried and Scared and couldn’t do one more or less thing about it than when I started Googling. So I kept the fear in my head and next to my heart and I Prayed.

And if it were possible, my future self would’ve whispered to me, “You ain’t seen nothing yet…”

I prayed and I smiled for Cory and we watched Dr. Who.

For 3 months: Google, pray, smile. Rinse, repeat.

Silver Lining….Love, Dad

cory cousins sibsAmazing that in a 6 week period created out of events of which Cory had NO control (his bone marrow transplant being postponed), that he was able to hug almost every person he needed to OR they needed to hug him before his passing. SomeOne knew of what was to come and gave this beautiful gift of peopletime to him and them. The Godincidences continue to blow my mind.

He called this “The Best Summer I ever had.” as I sat by his hospital bedside in the ICU. He’d had a Miracle. A true, blue Miracle. The doctors used that word, so it must be true (funny how a doctor stating it makes it more official….) But more on that later—The Miracle allowed more Time and meaningful conversation with my son than I had probably had with him in the previous 5 years put together.

1 month of 24/7 together. This was one of those conversations.

“What made it the best summer?”, I said.

I could feel Wisdom coming.

“I just wonder if…” and a tear from him. Isn’t it funny how when you see the tears of ThoseWhoDontCry, it melts you?? I was mush.

“If what?” I say.

“I just wonder if I should’ve been spending my time with you, my friends, the fam. < He really said “the fam”…I love that> I mean, I spent real time with real friends, and the reunion in New Mexico was awesome….” Okay, lots of tears from him now. I haven’t seen this since he was, like, 8 (Be strong for him, suck it up, I tell myself). “I just wonder if I should have spent more Time with everyone instead of exploring all over the country….”

“No, no, Cory…” and I have nothing. I lean over his bed and grab his head to my face. I am trying desperately to keep my composure, because I realize that he is speaking as if he knows this isn’t going to end well. And I wouldn’t change him or his adventurous, nature-loving, exploring and inspiring self for anything. It was HIM to wander and to wonder and he inspired others to do the same.

But he wondered….(so, when it comes down to It… to the End Game–it’s the People, people!) It’s the People we wonder about and possibly regret about and think about in our last days. Did we spend enough Time? –(Take that one home).  Do we spend enough Time with the people we love and love us? He wasn’t thinking about what job he’d had, what schooling he’d had, where he went, what he did…..Cory was only thinking about his People, with sad and happy tears.

baby cory charlieIn his Dad’s, Charlie Powell’s,words….a piece of The Best Summer Ever:

“Are the doctors ok with you flying ? Are there restrictions?”   After dealing with chemotherapy and a compromised immune system this seemed like a logical question to me.   “Nope, I’m good” Cory tells me.    I kind of knew he wasn’t giving it to me straight and I think he knew that I knew,but we didn’t say anymore about it.     

We had been talking about it since March.   My parents 50th Anniversary and the ensuing reunion of sorts would fall just about exactly when Cory was scheduled for a Bone Marrow transplant.     Cory was going to miss it.   As was his nature he didn’t complain much, it’s another unfortunate scheduling issue.     For someone who loved and longed for freedom so much he would roll with it and just consider it something he had to deal with.     He didn’t ever bring too much attention to what he was going through.

So now with several potential marrow donors backing out we suddenly had this window of 3 days that Cory could fly to New Mexico and see the family.    Trouble is… we only have a day or two to find a flight and scheduling and pricing were extremely prohibitive.    Priceline, Travelocity, and all of the last minute deal makers were not helping   I remember these words “I don’t mind waiting and I don’t mind airports” and then “but I understand if it doesn’t work out”.   I almost was ok with that for a second since it was just one day ago that it wasn’t possible anyway.    I immediately felt guilty for even thinking of not trying again.      He needs this.   He won’t complain, he won’t take it personally, he won’t whine or pout or bring more attention to himself, but he NEEDS this.     He’s been through so much, we can’t have this reunion without him.     I searched again and again, made a few calls and found a flight that worked with his schedule,  as he was to report to the hospital Friday night at midnight.      I would NEVER forgive myself if I hadn’t found that flight.    

The next three days I just looked at him.    I am in awe of this man.     He never once talks about his journey through cancer(s), treatments, surgeries, etc  unless asked.    He skillfully deflects certain conversations and makes others feel comfortable.     Instead he’s got a double splint holding his broken cadaver bone arm together, his other arm has bandages protecting pick lines installed in his veins, he’s wearing a signature Cory fedora and he’s just smiling and laughing with his cousins, playing cards, and soaking up the love that surrounds him.      You would never know he was sick by looking at him.    It would be hard to understand all that he’s been through and all that is going through his head.    For now though, It is so incredible to just watch him.   He was truly happy.

                He would say it a couple of times but I know he thought it constantly, he wanted to stay.   He was so glad he made it.    He said it was just what he needed to go back and “power through” the next phase.    He was always grateful for the simple things but this was big for him.      I’m still actually haunted by the fact that we almost didn’t make this happen.   I think about this a lot still.    I, ME, his dad, almost didn’t get him there !!!     I am so glad I tried one more time.  

   cory poell familyIt was just for a couple of days unfortunately and because he had to be in the hospital Friday night and some people weren’t coming in until the weekend.    We decided to take a picture of him and planned to paste it in later. 

Irony that is both beautiful and heartbreaking is when looking at a picture of a person who isn’t with us and wasn’t in certain original pictures, it was he himself who cropped and photoshopped himself in.      Equally as tragic but makes this few days with family more special for everyone that week is that he walked off the plane that Friday night after leaving us, he checked immediately into the hospital.        

Although I guess we knew the possibility was there,  I don’t think any of us really knew that would be the last time he would be able to leave.  “–Charlie Powell, Cory’s Dad.

 cory charlie jim