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… 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.


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.

My son in the ICU….it takes many hands.

So after the first few days of shock, sleep deprivation, and gradual acceptance of the circumstances we were in….

…. my New Life and New Job began on Floor 5, Pediatric ICU, Cincinnati Children’s Hospital.

I knew I had to get over myself. At some point, we have to pick ourselves up, dust ourselves off, take stock of the situation, and get to work, don’t we….

I slept, kind of, finally. There was only one chair that pulled out into a “bed” in that room. Cory’s Dad and I took turns sleeping in a chair stooped over Cory’s bed onto a pillow or in the pull out bed. We played the Parent Sleep Room Lottery every day (a separate sleeping room for one, no windows….there were only a few for the whole floor). But because the unit was fair to all the parents on the floor, we “won” every three/four days or so.  Then both Charlie and I would get a bed for the night. It was nice to be in the pitch dark on a real bed, but it felt too far from Cory and I slept with one ear open in case my phone might ring from the room down the hall.  Most nurses did a fantastic and considerate job of using flashlights to work at night in Cory’s room, so I preferred to just sleep in his room.

We had a routine in the morning… taking turns leaving to get coffee, eat, shower, dress, taking care of phone calls for work, business, our families at home…ready to face what each day might bring.

During the day, I started my PCA (Nurses Aide) training (not really, but felt that way). In these first weeks, we had different nurses every day and every shift. I learned to understand how critical Cory’s situation was by the number of nurses assigned to him.  In the first week, there were 2 nurses whose only job was Cory every day and every shift. They worked the whole time.I mostly didn’t know what they were doing, but I asked enough questions to probably be annoying, and I asked where and how we could help…..and they told us and they taught us. Turns out many loving hands were needed for the simplest acts of care. ❤

The first order at hand was his blistered back…..we were assigned a skin-care-specialist Nurse at first who taught us how to turn him, carefully pull off his non-stick bandages, “clean” the skin, prepare the next bandage with a cream and netting that kept it from sticking to his blisters and open wounds, and how to keep everything sterile in the process (blue gloves were my newest accessory)….the “bandages” covered his whole back. He was being treated with the same protocol as a burn victim, and even though he was sedated, he would wince with pain when he was turned and when the bandages were changed.

Every new nurse would bring new knowledge, or something they’d picked up in their experience that collectively helped Cory and his comfort or safety. For example, because Cory was on his back, the bandages would often bunch up or fall off his back. An “old school” nurse was assigned to him who sat herself down and hand-sewed a vest out of a gauze material to keep his bandages on, another nurse knew a trick for turning him that made it much less painful for him, another was a Pillow Queen that staved away bed sores, and another came in on his day off to cut a bandage for Cory’s pic- line that he designed especially for Cory to keep germs out that no one else knew exactly how to do….the list goes on. and on. and on. These may sound like not big things, but to Cory, immobile and in pain and should have been the “Boy in the Plastic Bubble”, they were invaluable contributions. These were just loving gestures of time and teaching offered because they cared. This was Over and Above the 100 other juggling acts they were managing that stemmed from their years of education…medication and lines and charting and sterility and numbers and math and science and executing directives of putting square pegs into round holes.

We learned where to get our own ice water, our own bed sheets and towels, our own scrubs if we needed them, ect.  We tried hard not to expect the nurses or aides to “wait” on us on top of their already over-burdened To-Do lists. But they would have if we asked.

Our He-roes and She-roes.

I paid attention to every instruction. When new nurses would come in, I felt awkward at first correcting the way they might be doing something for Cory, but they were so gracious…knowing we had already had witnessed and done it many times. Eventually, the nurses passing the shift baton would say, “Ask the parents if you have any questions.” or they would tell the incoming nurse that we would do certain jobs ourselves and the nurse could assist. Eventually, the awkward went away, because we were a Team. Charlie and I were the “constant” in Cory’s care because we were there all the time, and we were his advocates because he couldn’t speak for himself. They were the Pros. We were all learning from each other on Cory’s behalf, and the tasks were aplenty. I took my new job very seriously and I learned more in two months than I could ever blog about in years. Not just medical jargon or protocol, but about People and Hearts and Life.

The nurses, the staff, the doctors, the parents, the family, the friends—the first Team Cory.

(About those blisters—the Infectious Disease Doctors decided it was GVHD.)

Campath was sent in to suppress his immune system so it would stop attacking his skin….It all sounded so backwards. Trying to build his immune system, but having to suppress it…but not too much.

This on top of his Respiratory System, his Urinary System, and His Digestive System being aided by Gizmos and Gadgets going in and coming out of every orifice.

At this point, I still had NO DOUBT that he would make it. I adopted Cory’s mindset—I just focused on each hurdle (no matter how colossal it might be) as a bump in the road on his way back to Living Life.)

“Hoping for flatter ground and some sunshine tomorrow. I miss the sun. I’m tired of these clouds and the wet. Fingers crossed!!”–Cory Jay Powell, Day 33 of his cross-country bicycle  journey.

My son in the ICU: And then the saints came marching in.


So, when the dust settled from the rolling, and saving, and pushing and inserting….and the 15 medical miracle workers dwindled down to 2….and they closed the big glass doors to his room, I praised God in the hallway literally and figuratively.

This is not Cory, but this is exactly how he looked. Profoundly, beautifully Asleep, Peaceful, and Alive.
I pulled up a chair next to his bedside and made myself comfortable. I held his hand and visually took him in, just like when he was a baby.
I wanted to crawl in next to him…like the many times I did on the Bone Marrow Transplant floor or the Oncology Unit…to watch a movie, to play yet another game of Quirkle, to hold him in those so,so few moments he cried, or for him to show me something—some song, some game, or teach me something I was technologically inept at, on his computer.
But he was too fragile… too covered with lines and tubes and tape. So I just sat and praised and thanked God that in THIS moment that He. Was. Alive.

Then the Saints came in. Cory’s PICU nurses for the shift. They showed up every day ready to advocate and care for the physical well being of their patient, and over the course of our 2 month pitstop in the ICU,we fell in love with them.
Then the Troops, Dave and Mom, came in that night. Their eyes big and scared and worried….I finally cried, sobbed really. Longest, hardest night of my life just happened…..or so I thought.
Then more troops— Charlie arrived as soon as he could….I proceeded to spend more time with my ex-husband in the next two weeks than we probably spent together in the 5 years we were married. And it was fine.
See… The ICU has a way of stripping away anything that doesnt really matter in the grand scheme of things. Only one thing mattered to anyone in that room. Loving Cory. Caring for Cory. Helping Cory.
Period. We were his family.

The Good News:
1.He was out of septic shock.
2.They saved him.

To Do List:
1. Get the results from testing to find out what the Monster Bacteria that did this to my son is.
2. Kill it.
3. Heal up those organs.
4. Get off the ventilator.
5. Get out of ICU back onto the Bone Marrow Transplant floor
6 Take Cory and his fully grafted, fully functional germ-fighting bone marrow HOME.

Please, Dear God, please.

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…….


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.

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.

Bone Marrow Transplant—It’s Time!

cory hitchhikingLate July 2013

Cory, as usual, flew in by the seat of his pants (literally flying in from New Mexico to arrive at the hospital at midnight….he arrived at Children’s at 12:15). Turns out he was supposed to be there at 8:00pm and I received many calls from the hospital asking where he was. I don’t think that he informed them of his quick jaunt to his Powell family reunion across the country 3 days prior to his transplant admission, but there ya go.

He went.

He made it back in the nick of time for them to stay on schedule. Chemo was to start immediately—the most intense chemo he had ever had to completely and totally wipe out his immune system and any cells that had any inkling of leukemia. Gone, never to return, wipe out both his good and bad cells. Totally unrecoverable on it’s own. Scary, in a way, being 100% reliant on someone else’s bone marrow to stay alive at this point. We didn’t speak of it.

Then they would replace it with this stranger’s bone marrow, who’s cells would set up shop and create a new immune system made up of healthy marrow and blood cells. (Super crazy that these cells know where to go in this other persons body to make new marrow!)

So, chemo went as usual, but with a little more lightening speed of symptoms. Lost  Cory color and regrown hair within a few days, sickish and weakish and vomiting rather quickly. His vomiting was incessant. They wanted to put a feeding tube in for nourishment since he wasnt keeping anything down, and they said post transplant it can be good to have…none too pleased, he allowed it to be fed down his nose into his stomach, only for him to vomit up the tube with in 24 hours. So much for that.

Then came The Day.

I took the week off work for his Transplant Week. His transplant looked like this:

He is sitting in the hospital bed hooked to his Pole. They brought in the bag of cells, they hooked it up to the lines already feeding into his veins, hung it on the Pole and in it went. It was rather anticlimactic and uneventful other than the banner hanging on the bathroom door that said “Happy Cell-Day!!” with two big yellow smiley faces on it.  The nurses made him a little banner celebrating his “new birthday” (which he wanted no part of–”My birthday will always be my only birthday.”, he said to me with a little roll of the eyes.) He still outwardly appreciated their efforts, but didnt personally embrace the pomp and circumstance. He was just doing what was necessary to get on with life—and he liked it plain and simple. Which it was.

Then we waited. For what? For The Numbers… after day. So many numbers meant so much. Learning the Language of the Numbers took me a long time. At rounds (when all the specialists gather in the hallway of Cory’s room and collaborate and share and decide what’s next)…. We were always invited to the party. Cory always declined. So I would attend . The doctors would rattle off the numbers and I would just end up saying, “Is that good??”  Sometimes it was, sometimes down a little, but overall, he was on the right track with the right numbers climbing and the wrong ones status quo and “normal” for a BMT patient.

He  was in the Bone Marrow Transplant Unit. Still floor 5, but we took a left at the yellow brick road instead of a right.  There was new everything here…new nurses, new doctors, new rules, new parents, new children fighting for their lives.

BMT unit rules: NO eating or drinking in the room.

NO using the patients bathroom.

Scrub upon entering room, scrub upon leaving.

Do not be an idiot and show up with a cough, cold, or illness.

So, when I ate, I went to the Parent Room. Most times, we ate in silence, those other parents and I. Lunch went like this….

I brought my tray in, squirted with hand sanitizer upon entering the parent room….grabbed a clorox wipe, grab a coffee cup, wipe the counter I’d set my cup on, wipe coffeepot handle, pour coffee, wipe the handle of the coffee pot after putting it back, wipe counter again after picking up my cup. Wiped my spot on the table, wiped the arms of the chair I would sit in. I would eat, wipe the table again, wipe the arms of the chair again and push the chair in with my knee. Dump my tray, squirt hands again. Grab three more wipes, wipe the doorhandle to the bathroom, open it, wipe the toilet seat, do my business, wipe the toilet seat again, flush with another wipe in hand. Turn on the water to wash my hands with the other wipe, wash, turn it off with the wipe, wipe down the sink, use the last wipe to wipe the door before and after opening it, turn around and wipe the outside door handle one more time for good measure. Leave room and squirt on my way out.

No Joke. We All were protecting every child on that floor, including our own, because it was a Unit of childrenwithNOimmunesystem.

Germs were more than the enemy….they were Evil little somethin’ somethings on this Unit. They had Power here….a very real instance where something none of us could see could take our children out. Out.

Cory had a fever in the first week…the first of many instances of something making its way in, or something dormant in his body gaining New Life because there was nothing in him to fight it.

I never knew what it was…just knew he was sick now and again that first month. Antibiotics were a daily diet. And plenty of other preventative or post-ventitive or current-ventitive medications flowing from bags into him. I felt clueless and in awe all at the same time, most of the time….of everything.

Then this one time, though, at this one place… they gave him a preventative dose of a yellowish colored medication in-a-bag (an Anti-Fungal a day might keep the Fungus away?)  It’s name was Ambisome .

They hung the bag on the Pole, it dripped into his line and into his vein and into his brain and body, and they left the room.

This was all of a couple minutes, tops, but is in slow motion in my head….He was talking to me—then he stopped. And all at once his face and lips swelled before my eyes, he broke out in a rash, he was gasping for air, I was pushing the Nurse button and said “He can’t breathe, his lips are blue”. And I whispered “It’s ok, it’s ok” to him.

I was remarkably calm. She came in, put Benedryl directly into his IV, and it all subsided. They slapped a red allergy band on his wrist that said, “Ambisome” on it.

No more O’ that.

Welcome Home, Cory.

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