My son in the ICU: PAIN exclamation point

September, 2013, 2nd week in the ICU.

Things were good, considering (“good” was ALWAYS “considering”).

Quick review of two weeks (only 14 days) in the ICU….Septic Shock (organs shutting down, they saved him, Praise God); Breathing Tube trauma; BK virus continues raging(blood and blood clots in urine); ALL organs on some sort of machine to assist functioning; GVHD with his new bone marrow attacking his body with enormous, painful blisters on his back; At least Four different Bacteria/Virus/Fungus detected and treated due to low immunity (and having to lower it further to fight GVHD);  Once breathing tube removed, still fluid in lungs, broncoscopy required.

But….I believed things were “good”.

In reflection, it’s what allowed me to care for him, to shower, to laugh with the nurses or his dad, Charlie, to be hospitable to visitors and family, to be a long-distance parent and wife(from 25 miles away) to my family.  But, I do believe, that I was a better mother to him than the mother who now sees now, in my writing, that things looked rather bleak even though things were improving….

But “good” meant: He was breathing on his own with oxygen numbers rising, they expected him off dialysis in the next day or two, his bacteria was responding to treatment, the GVHD blisters on his back were GONE!, they had removed the urinary catheter due to complications due to clotting, and he was awake (sort-of, sometimes). And in One Day, he was scheduled to go back to the Bone Marrow Transplant Floor!!! He NO LONGER NEEDED INTENSIVE CARE!!!! Our hopes were High and Confident.

Charlie could fly back to Arizona, I would stay in hospital until Cory was completely out of the woods, but would return to work in a couple weeks…Cory would continue to get stronger and better and numbers will rise….Woo! Hoo! Then he would come home! Ahhh, it was all planned out ( in my head) and it’s all I saw. Once HOPE moved into my brain, watch out. Then….

He broke out in PURPLE BLOOD BLISTERS , all over his body. Blood Blisters. Everywhere.

At first, no one said much. We just assumed more GVHD funky blisters. These blisters didn’t distract us from the HOPE from all the improvements! We were still in “WOO! HOO!” mode. Just another speedbump…

Whatever it is.cory blood blisters

But then to find out They. Didn’t. Know. Why.

GVHD doesn’t do this. Bacteria doesn’t do this. They don’t know what does this??????  Cincinnati Children’s Hospital has never seen this. Wwwwhhhhhaaaaaattttttt??? WHAT?

These blisters caused him EXCRUCIATING pain….worse than Ever. We.Couldn’t.Touch.Him.

None of us could Touch him.

But there were things required to Care for him that required us and the nurses Touching him. We had NO CHOICE at times to Touch him to care for him. And it tore us to pieces every time….He would CRY OUT  and

MOAN in Agony,

real live AGONY….

and this was medicated!

The Guilt and the memory still bring me to tears as I write.

I remember a moment with Charlie where we both were upset with  pain for our child…

it was Primal…

saying ” WHAT CAN WE DO?? , What can we do???

It was our souls speaking to one another….helpless for our child we had brought into this world and watching in such intense pain. Pain. Pain….PAIN!!

Really, I can’t describe it.

They put him on more pain medication again…they asked if the Infectious Disease Team could biopsy him? …..Take little round circles of his skin out of him to determine what this was?

“Will it Hurt”, we said?

“Yes.” they said. We heard “YES!”

We had witnessed him in so much pain over the preceding three days. Pain that you could not imagine watching your child go through. Suffering that you cannot envision.

I.Cannot.Describe.It. because I could not even have imagined it, ever….EVER. EEEVVVVEEERRRRR.

So the question, “Will it Hurt?”

Mattered.

Alot. ALOT.

Such pain that we questioned a simple biopsy of his skin.

We didn’ t want to be responsible for one more iota of discomfort for him.

We agreed, after much conversation, reluctantly, thinking the benefit of diagnosis outweighed the additional pain.

We signed. They did the biopsy.

Charlie flew back to Arizona, because he’d already booked the flight when we thought that things were Getting Better.

He waited waiting for word, since his flight was already booked during the Hope Phase.

I would be calling him very soon to come back to Cincinnati.

My son in the ICU….Welcome to the WWE!

September 11, 2013

He’d been on the ventilator about 10 days, and being fed medication the whole time to keep him sedated and comfortable with the breathing tube in. It didn’t quite look like I thought it would at times, because he was in and out of consciousness, still reacted to pain and discomfort, and was very occasionally lucid. Otherwise, he just seemed like he was sleeping alot.

Whatever the current GOAL was…that was our focus….

Current goal: Breathing Tube Removal. Mindset at this time is, “He is getting better, and we will check these last pesky items off the To-Do list and be discharged from the ICU.” His dad, Charlie, decided that when the Cory was off the ventilator, that would be a safe time for him to return home to his job and family in Arizona until further notice. Because if Cory could breathe on his own, then that’s a sure sign of the road to recovery. We all believed that.

So, each day, they slowly backed him further and further off the boatload of medication he was on so they could remove the breathing tube in order for him to breathe on his own.

Welcome, folks, to the WWE!

WWEYes, as in Worldwide Wrestling Entertainment. And as one might (if one was the parent of  Hulk Hogan watching him wrestle), we laughed and we cried through the next (two,three??? It all ran into each other) days and nights…oh, the nights…

The “Made-for-TV” experience began the day before scheduled removal.  It went something like this:

Charlie and I were stationed on either side of his bed, each holding a hand, so excited and expectant as we saw obvious signs of his “waking up”…his eyes open, seeing us, making noises.

Cory is 6 foot 2 inches. He is withdrawing from meds, he is trying to communicate, he is moving….alot. He is not “in his right mind” though. He is somewhere in between reality and sedation….and He. Is. Strong…. and Smart.

And in this in-between state, he has the same goal the rest of us do…..to get him off all of the machinery and tubes and lines, etc. that have him attached to his pole, the monitors, the ventilator, and the bags surrounding his bed.

His methods? By his own hands, here and now.

He was pointing at his breathing tube, and we explained (again) that he was on a ventilator but that it was being removed soon, blah,blah,blah…..and he grabbed it! And pulled! We were shocked!!! Charlie would grab his hand and pry his fingers off and I would try to keep the tube steady. We would “explain” to his eyes…that looked like they were listening and understanding…that he couldn’t do that. That he would hurt himself. That the doctor would take it out tomorrow. Then we would make the mistake of thinking he understood and accepted what we were saying, we would loosen our grip on his hand and before we knew it, he’d go for it again. and again. and again. And we would explain firmly and pleading with him to stop again. and again. and again. All night long, then all day long.

He was pretty much breathing on his own at this point, even with the tube in, so the next day they uneventfully removed it. He had an oxygen full-face mask on to get his oxygen levels up to speed.

Breathing tube OUT, and one less thing for him to grab. We had pillows covering every place he had medical devices attached to him or inserted into him. And we held his hands with ours 24/7. Sometimes he dozed, sometimes we dozed….until we felt him stir and we were ready. Or so we thought.

Then his mission extended to trying to trying to pull off the oxygen mask, or pull out his IV, his Art-line, his catheter, and his PICC line in his groin. Even the simple pulse-ox that monitored his oxygen with a small bandaid-like wrap around his finger…off.

Moved it to another finger…off.

Moved to his toes, he managed to pry it off with his other finger-like toes….off.

Moved it to another toe and explained to leave it there and why. He would look attentive, like he was listening… then he would scooch it off that toe.

It was endless. endless.

The nurse brought in restraints.

We said, “No, we’ve got him.” We were going to hold his hands and talk to him and reason with him and create barriers with pillows to protect him from himself. We’ve got this. Supermom and Superdad.

Then in came Nurse Jenny, a Godsend, who would join our family at this juncture and walk Through It with us until the bitter end. She was assigned to Cory the day of his breathing tube removal, I believe, (lucky girl)….

At some point, we realized that talking with him in this state was like talking with an over-grown 2-year old determined to unstrap himself from his carseat. He heard us explain things to him, stopped for a moment while we were talking, then went at it again! He was focused. And funny at times, which is weird to say, but sometimes the maneuvers he used to try to get things off and out of him were truly comical. He was like Spiderman, all sly and scheming and flexible.

He had these huge feet and gangly legs and finger-like toes that were up in the air moving around that he tried to use instead of his hands because we were holding his hands from grabbing things. He  literally used his high-school-freshman-year wrestling moves to grab my head with his legs into a headlock at one point…..and none of us in the room could stop laughing! I wasn’t hurt, just stuck… leaned over his bed with his leg around my neck while I was holding his hand with my hands. I couldn’t let go of his hand or he would try to pull something out of himself….Charlie couldn’t let go of his other hand. “Cory, let go of your Mom.”, Charlie barely got the words out between trying to catch his breath from laughing. Jenny, who was laughing to tears as well, had to come over and pry Cory’s crossed feet apart so I could sit back in my chair. What a story Nurse Jenny had to tell at home that night…”One of my patients had his Mom in a head-lock today!”

With eyes open or closed, Cory was going for everything to yank it out of his body. And he meant it.

“He’s withdrawing from the amount of medication he was on.”,we were told.
Ok….annnnndddd, when will this be over?
“It’s hard to tell.”
Oh. O. K. That clears things up.

We were offered restraints again.

“No.”…. We weren’t tying him down.

By day 2 and night 2, it wasn’t funny anymore.  He was becoming more stealthy than us. We would wishfully think every now and then that he was rational when he negotiated with us into letting him scratch his nose or something else benign with a free hand, and Boom!…he would grab his feeding tube instead.

He was saying not the nicest things to us when we kept him from grabbing the medical equipment coming out of him either, which hurt our hearts at times. We all, emotionally and physically, were wearing thin.

And we cried real tears when he got his hand snuck under the pillow and got a very real grip on his surgically implanted PICC line with the collection of tubes attached to it in his groin going straight into an major artery and we couldn’t pry his fingers off….we were fighting, and begging, and pleading and yelling for him to let go. He layed there, looking straight ahead, and continued with all his might to hold on and pull….and Charlie, with his muscle, held Cory’s arm in place, reprimanding him while the nurse and I pried one by one a finger off….then as soon as I’d go to another, he’d regrip the other.  It’s like his fingers alone were stronger than our hands. We managed to free the lines from his vice-grip eventually. Terrifying is an understatement.

Then he finally succeeded to rip something out of himself. His Art-Line (An arterial line is a thin catheter inserted into an artery. It is most commonly used in intensive care medicine  to monitor the blood-pressure real-time, and to obtain samples for arterial blood gas measurements–wikipedia). It was in the under-side of his wrist. Insertion is often painful and is done by a physician. Can’t imagine what it felt like coming out, but Cory wasn’t too phased.

It bled a lot, we were beside ourselves, and I felt like we failed him.

They stopped the bleeding, bandaged him up and they decided not to reinsert it under the circumstances. They took his blood pressure manually instead…

Nurse Jenny, who knew we’d been up all night, said during rounds, “These parents need sleep.”  What??? Rounds (where the 15 doctors for your child in the PICU gather outside of the room to give you the update on test results, medications, plans, ect.) was supposed to be about Cory, not us!! In my sleep deprived state, it felt like she was tattling on us. And she was, but really because she was taking care of us….and Cory.

Restraints were Doctor Ordered for Cory, “Certified Nursing Assistant Patient Sitters” were ordered in, and we were ordered to sleep.

We slept for a few hours at a time, then up to sit with him, listening to him tell us why he needed all this off and out of him and speaking some nonsensical things, and us explaining for the 100th time why it all needed to stay in. It was soooooo great to hear him talking again, though, after 2 weeks of the breathing tube being in. We were grateful just to hear his voice.

I hated to see his wrists strapped to the rails of the bed. Really difficult. But we knew now he could truly harm himself in the state he was in. He continued to be agitated, and to try to weasel himself out of the restraints for the next day or so. And sometimes he did. And his legs and feet continued to attempt to work their way around or sneaking their way up like a contortionist, and his obsession with slipping the Band-Aid pulse-ox off his fingers and toes became a sport. It was a constant putting on, off it came, putting on, off it came….After caring for him, the nurses, the CNA’s, the sitter’s were spent.

After another long day for Nurse Jenny, completely taxed from being in the trenches with us at Wrestle Mania, she stood at the end of the bed to say goodbye to us. Charlie and I were back in our stations on either side of Cory’s bed (we had followed doctors orders and slept some the night before, so the “sitters” were dismissed during the day) and none of us will forget this moment:

Cory’s eyes were shut and seemed to be resting for a few minutes and Jenny instructed us, “You two get some sleep tonight” to us, and she playfully held Cory’s foot and said something about behaving himself.  As she turned to walk out of the room, Cory opened his eyes and said clear-as-day with full awareness and intention, “Thanks, Jen.” We were all stunned!! She welled up with tears of relief and looked him straight in the eyes and said, “You’re welcome, bud.” straight from her soul.

He smiled at her and shut his eyes again. There was not a dry-eye in the room.

He was back.

She covered her mouth as she quickly left the room and I went after her out of concern. She was full-blown crying in the hallway and I hugged her through her tears and mine, and then we began to laugh through the tears, as well, as the obvious bottled up emotion and hope and relief and reflection of the previous days came pouring out. Laughing and crying with gratefulness of the simple, human, loving, thinking, feeling words, “Thanks, Jen.”

I was soon to see more of her heart. She’d only known us a few days, had worked her tail off caring for us and Cory (who was 6 feet tall instead of the customary 2-4 feet tall in a children’s hospital) and this woman still signed up to be one of Cory’s Primaries. (meaning that when she was on duty in our ICU pod, she would automatically be assigned to him). I loved her immediately.

Thankfully, Cory got to laugh with us as well, at a later date, as we retold and reminisced the humorous parts of his WWE days. None of which he remembered, but he was amused. 🙂

I remember thinking on so many days…Sometimes it helps to find laughter when nothing is funny.

 

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: 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: And then the saints came marching in.

September,2013…

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.

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