My Son in the ICU: Living on the Edge

37766_445957641239_1438903_nMid October 2013:

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

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

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

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

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

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

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

Every. 4. Hours. Every day.

So much blood.

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

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

Our days were full.

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

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

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

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

6 weeks now of living on the edge…

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

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

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

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

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

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

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

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

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

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

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

More Wait and See…

My son in the ICU: Exposure Therapy

Early October, 2013

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

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

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

Yeah.

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

Only, it’s not fun.

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

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

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

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

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My Son in the ICU: 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.

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: Be careful what you wish for….

Late September 2013:

We were moved One Day from the smallish cramped room on the ICU unit with This window-of-worry:wpid-img_20130916_180134_516.jpg

to the most beautiful Penthouse-like room on the unit with These windows-of-hope(and that’s not all of them!!):cory family

…..We had actually admired this room from next door for weeks before, and once stated  to a nurse who was attending to Cory,

“Wow! That is a magnificent room! The light, the windows!” , I said enviously as I walked passed it and into Cory’s room that was half the size, dark and seemingly cramped in comparison.

The nurse replied, “Ohhhh, you don’t want that room.”

“Why?”

“That’s the room that goes ‘into the light’, …if you know what I mean…. Patients who go in, don’t usually come out.”

oh.

So, when, a couple weeks later, when Cory was actually getting better (a very relative term) and we were filled to the brim with hopefulness….her words couldn’t help but enter my mind as we rolled his bed into that grand corner coveted room on the floor that he was transferred into.

It was double the size, quadruple the windows.  The Sun blessed us all…..it was like arriving on a beach after being in a basement for weeks. We all soaked it up and were SO grateful for the light and space. It was a gift.

“I’ve spent my life searching for spiritual meaning…” Cory was telling the visiting female pastor that happened to be with him as he changed rooms. They had bonded. He opened up to her when she visited him daily. “I’ve found it in Nature most of all. And in Solitude. I love solitude.” She was a beautiful and peaceful and accepting soul. She was exactly what he needed. Funny how God always Provides so precisely and timely.

This room allowed Cory to come back to life in Glory. In sunlight, with many family members around him, with room to Breathe and Work and Rest and Heal…. And come back he did, mentally and emotionally at least.

Physically, well….that was another story. That would be a long, long road.

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

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

And Love exploded.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This was Love.cory love cory day

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

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

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

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

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

“Can you get me on Facebook?”-C

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

“No, I will do it.” -C

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

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

My Son in the ICU: MIracle Man

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

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

Silence.

That’s what’s next. Silence. enjoy_the_silence

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

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

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

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

Love.
He showed up. In a big way.

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

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

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

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

Here are my texts to a friend in September :

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

We called him Miracle Man.

My son in the ICU, If I had a boat….

End of September 2013:

We were waiting, counting days and moments and temperatures that Cory couldn’t shake.

Cory’s dad, Charlie, was the expert temperature taker and our moods would rise and fall according to .5 movement up or down the thermometer reading. If there was movement either way, we would take it again and again within the same hour.

We were told he had days or maybe a week. We were looking for signs of a miracle or signs of death. No gray in those days….black and white, hope or despair, up and down the rollercoaster operated by a fungus.

I was either praying and bargaining with God or googling “signs of death”. Like we might miss it.

Desperately wanting control when we had none.

I googled many sites over and over…looking for a site where he didn’t meet every “sign”. For  a tangible ray of hope. Couldn’t find one. Check, check, check, check—-all physical signs were there.

But I didn’t (or couldn’t) believe it. I yelled at myself in my head and said words like “reject!” or “no!” to any sign of acceptance or negativity in my thoughts. I was Believing God for a Miracle to save my son. I wanted to talk with him again, hang out with him… this all happened so fast. I wasn’t ready and didn’t believe he was either. End. Of. Story.

Then one night, he sat up in his bed (yes, Sat Up). I asked him what he was doing as he picked at his sheets at first and then was clearly reaching over one side of his legs and looking like he was grabbing things and moving them to the other side of his body.

“I’m packing”, he said. “I have to go.”

Thinking he was talking in his sleep, we tried to lay him back down, but he was insistent. So we let him pack. I watched with tears rolling down my face with my first real thoughts of, “He’s leaving us.”

The next day, family came to visit. He started telling everyone where he was….”I’m at the ocean.” and he was so content and happy. To which someone asked, “Who is there?”….”Well, there’s that Lion over there, lookin’ all regal!”– “Where?”– “Over there on the beach.”…And when Jimmy walked in, Cory looked straight at him and said excitedly, “Hey! How’d you get here? By boat??”  He apparently had arrived.cory boat

Well, then.

I googled again….a phenomena known as “nearing death awareness” seemed to fit the bill psychologically. Spiritually speaking, a common occurrence of “One foot in, one foot out” where they are somewhere else, but able to communicate it with us here. Often involving relatives that have passed or descriptions of heaven.

Hmm.

“If I had a boat
I’d go out on the ocean
And if I had a pony
I’d ride him on my boat
And we could all together
Go out on the ocean
Me upon my pony on my boat”…Lyle Lovett

My son in the ICU: There’s a fungus among us.

I found a text that I wrote on September 12, 2013 to my day-care families and said that I thought I should be back to work by the 16th….that’s how well we thought he was doing.

That’s when Charlie bought his ticket back to Arizona. Relieved and optimistic were we. It was the next day, that Cory broke out in all the purple blisters and bruises that I described in the previous post. What a difference a day makes…

September 17, 2013

Charlie had left for Arizona.

The blood blisters and bruises all over Cory were multiplying for four days, still no clue what it was. They had sent bloodwork a few days prior, but a germ that’s sampled has to grow and takes days to do so to diagnose what it is. They had done the skin biopsy as well.

It was 6:10 AM. Rounds could be anytime between 6 and 10 AM, depending.

The usual wake up call from the nurse….”Mom? Mom? They are here for rounds, did you want to attend?”

“Yes!”, I jumped to my feet. Hoping today was the day for our answer of why Cory was in such intense pain and covered with the purple lesions, so they could treat it with the magic of the correct antibiotic, and he could overcome One.More.Hurdle.

He’s a track star by now.

I walked out of the glass doors in my PJ Bottoms, a T-shirt, wake-up hair, and rubbing my eyes. I was usually holding a cup of coffee by Rounds, but this morning was an early visit.

The familiar faces of residents, doctors, and Attendings(the Head Honchos) were there. There was anywhere from 10-15 medical personnel at AM rounds. Many,many were younger than me.

It felt like a Huddle. There was Team Kidney, Team Pharmacology, Team Pain Management, Team Infectious Disease, Team ICU, and Team Nurses would pop out of caring for Cory when the talking actually began. They were waiting for Team Bone Marrow Transplant doctors to arrive.

Something was different this morning. There were more of them here.

There wasn’t any banter among them, which often there was and which I enjoyed. Their smiles and small talk among themselves about the night prior or studies or what their dog did or how cool the new medical app on their I-pad was…..it was refreshing, a peek into life on the outside and a comforting sense of human-ness from them. But there was none of this this morning.

There were periods of absolute silence, where they informed me that we were waiting on the Attending from the Bone Marrow Transplant Unit to arrive. (That didn’t surprise me. The minute Cory hit the ICU, the Attending from the BMT Unit became his daily doctor.)….

But the air while we waited was different than other mornings we had waited. I started rocking back and forth on my heels, my arms were crossed and I was clenching my teeth. My Mom Instincts were NOT getting good vibes. The automatic doors to our ICU pod opened and in walked the Bone Marrow Transplant Team.

The Attending (Head-honcho), looked as put-together as ever, and along side her was one of Cory’s physicians that was with him from the beginning of his Leukemia diagnosis. She apologized, she looked very serious, and she didn’t make eye-contact with me or smile…which was also different. (We were kind of friends by now we had chatted so much…she had two boys around Cory’s age, I knew the rundown on the new decor going into the BMT unit that would be “softer colors, and a homier feel”, etc.) Two women chatting, but Not Today.  Today she was “The Doctor.”

This. Was. Not. Good….I knew it.

An ICU resident started , “Cory Powell, age 25, blahblahblahblah….”. I mentally checked out while they ran down his stats and what meds he was getting, what nutrition he was recieving, basically a review of what we all already knew.

“Stay calm, whatever it is… stay calm, breathe, breathe.”….I was continually coaching myself for composure, for mental focus, and for, well, Sanity.

The taking-turns-talking baton was passed to the next physician, the guy behind the computer-on-wheels with the big sign taped to it that said, “DO NOT USE THIS COMPUTER FOR ROUNDS”.

This computer, was here, AT ROUNDS, Every Day, being pushed around by a different Dr., which usually cracked me up and I even ribbed them about it on a good day.

Today, I only became laser attentive to the mouth moving behind the computer as he looked up and down at the screen as he spoke. “The blood work was taken on 9/13 and infection was found in the blood, there was no growth prior, but they have determined the preliminary growth on the sample is a fungus.”

A Fungus. A FUNGUS. okay.

I was listening for what bacteria or what virus had this time attacked his weak immune system and it is a fungus? …,…Didn”t even know up until this point that that was A Thing.

The baton was passed to Team Infectious Disease which backed up the findings. The biopsy had indicated a fungus as well.

Mold.

Take that in…..Mold. AS IN CHEESE.

But it wasn’t on cheese that you could throw away or cut the mold off.

It was all over MY BABY…..EATING at him from the inside out.

“How? What?? How did this happen?” I stammer. Huh? I just kept thinking, “Huh????”

“Well, we are going to meet later and discuss that in more detail and where we go from here, at….when can you meet, Dr. so-and-so, and Dr. so-and-so, and Stan, does 1 work for you? Ok, I’m in surgery at 12:30, Sue is at lunch at 1:00 and Riley is getting her nails done at 2:00, so let’s make it 3:00…..” says the Attending.

(Not really…obviously thats not really what was said, but that was the level of importance of whatever I heard TO ME—the mother of the child you just informed me is decomposing while alive like a slice of bread that has been in a warm plastic bag too long—-and you want to wait UNTIL 3:00 to explain this to me???)

One of the Attendings is making all the arrangements for us to meet later around their schedules—with the other Attending—and the Primary, and the Resident,… and the janitor? “Let’s call the flipping janitor”, my angry mind sarcastically says in my head.  (remember that sanity part…..I feel myself teetering) They are all talking around me, and my head is spinning and I’m physically feeling dizzy.

“Will 3:00 work for you?” Oh, they are talking to me. “Yes….. I’m not going anywhere.”

I turn to walk back in the dark hospital room. I sat on my chair-bed and stared at Cory, the Cory I’d now grown used to seeing lying in the bed on his back with beeps and lights and lines as his appendages. My Cory that I couldn’t touch because it hurt him.

And I didn’t cry.

I was cried out and numb and angry. I thought about how over the past weeks in the ICU (3 weeks that felt like 3 months), Charlie, Dave and I kept saying and cheerleading and being positive and oh,so hopeful….”Well, you know, he just keeps moving forward. 3 steps forward, 1 step back….2 steps forward, 1 step back…4 steps forward, 2 steps back. As long as he keeps going forward.”  My gut knew this was more than 1 or 2 steps back….they didn’t call for a Meeting of the Minds at 3PM in a conference room for a couple steps back…..

I stared in absolute Awe at the man in front of me, lit up only by a nurses light and blue and red lights on his pole. And I waited for 3:00.

cory handsomeDay 47, Journal Entry from Cross Country Bike trip : “Ugh. Today was rough. Very pretty, but I couldnt get very far and I feel like I just did 100 miles. I didn’t get on the road until noon, and by then it was super-windy. The mountains were fabulous. After the initial climb, I got a nice break on some relatively flat ground and even some downhill. After that though, the road turned and a heavy wind has been in my face since, as well as maintaining a constant uphill drive. Overall, very taxing, but I managed some great pics. I’m camped at the top(ish) of a hill behind a tree. I’m going to sleep and thinking about Downhills & Slight Breezes.” —Cory Jay Powell

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…..day 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.