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….this will never leave me.

September 1,2013…”Mom?” Says the doctor (in this childrens hospital, they call you Mom to address you. Keeps it simple for them, I’m sure, to not have to know names, but it’s meaningful, really…it reflects the real intimacy of what you are all IN together. Someone’s Child is in their hospital bed. Not Mr. & Mrs. SoandSo’s child–Mom and Dad’s child)
He had glasses just like Cory’s and disheveled dark hair and eyes that look like, well, like things aren’t good. I wanted to tell him to get some rest. But he uses a matter of fact tone with just a little singsong in it that softens the gravity of what he is trying to say. And says, ” We have things stabilized, but his heart and kidneys are working too hard, and we need to intubate him.”
Huh?
“If the machine can do the breathing for him (Oh….a ventilator), then it will take the pressure off his other organs so they can heal. We need you to sign here.”

….ok, wait….back this truck up.

Im signing to put him on a machine….one of Those machines. One of the machines on all the hospital TV dramas where families have to decide when to keep them on or take them off at some point. Am I really here? Is that really my son lying there, and he needs a machine to breathe for him?

He signed everything himself up until now. For the last 2 years of battling cancer, he signed all the documents. For every procedure, poke, and prod.
I wanted to consult him….or even consult a familiar face. I looked over at his precious self lying there with things coming out of every orifice….except his mouth. He was inconsultable and I was it. (It was one of those moments I have, occasionally, where I feel like a fraud. I know I am 46 and I feel 50 sometimes,I have a career and 4 kids and a husband and own a house, two cars, two dogs…but, the jig is up! I am Not Really an adult. Soooo, I’m really not qualified to make these decisions. They should really be asking a real adult to sign that paper. Where’s my mother?)

I, Medical Power of Attorney on the scene, never felt more powerless.
(Little did I know that this was a relatively minor sign-off in the scheme of the following two months. But everything is relative…)

“Mom?”….I wish it was him calling me mom.
“So, it’s necessary?”
“Yes.”
“Will he feel it? Does it hurt?”
“Oh, no….he will be completely sedated. We will give him something to basically paralyze him temporarily so his body doesn’t involuntarily react, and we will put the tube down his trachea, but he won’t feel or remember anything”

I signed.
I watched him use a tool that looked better suited for a Kitchen-Aid mixer than a mouth. It was a bit of a struggle to get it in, but he did. And Cory looked peaceful and asleep while the doctor positioned and moved his neck and head to receive the tube, and pull it out and back in to properly insert it.

But he wasn’t peaceful or asleep. He felt and remembered everything.

When he became aware again, was it days?? or weeks?? later (Time is not a thing in the ICU…the Regulator of days, nights, & weeks in one’s brain is officially Off Duty)
…Anyway, it was the first thing he communicated to us (He couldn’t talk, because of the breathing tube, so he wrote it on a white board or typed it on his IPad one finger at a time) was that he was Awake, awake, awake. He kept writing the word Awake. Then he would point at his breathing tube, with pleading eyes to understand, and we finally put the puzzle together….He was awake during intubation. The trauma was evident in his eyes. He would repeat and rewrite it to the doctors…anyone who would listen or read. Then, with his going in and out of awareness and sedation, he would forget he told us….and he would tell us again. Broke my heart everytime. When the tube was finally removed, he told us finally with his voice….he was awake and aware couldn’t move or respond or tell them because he was paralyzed and it was terrifying and it was painful and he was trapped-his word.

I’m sorry. That must’ve been scary. I’m sorry, we didn’t know. I’m sorry, we’ll put it in the chart. I’m sorry, Really sorry. And everyone meant it.

He needed a higher dose to sedate him properly. No one knew. Now we did.

Charlie took a picture of one of his writing communications…He first wrote, “I was awake.” Then sort of wrote on top of it, “I thought I was in a coma.” Then, after all of our repeated apologies, his ever positive, grateful, optimistic self wrote, “I’m here 🙂 ”

whiteboard-225x300

Chemo….Ever heard of Mucositis?

May/June 2013
The goal of traditional chemotherapy is to destroy cancer cells, which are cells that divide rapidly.
But as the chemo wipes out fast-growing cancer cells, they also can damage fast-growing healthy cells. Which is why chemo patients lose their hair.
Due to this, chemotherapy can also damage the cells that line mucous membranes throughout the body, including those inside the mouth, throat and stomach. This can lead to mouth sores, diarrhea or other issues with the digestive system.
This can be very serious and extremely painful. Every part of the body has a job. When the mucous membrane isn’t able to do it’s job of letting the right things in and keeping the dangerous things out, the results can be scary.

I’d pretty much decided by the time he was 24 years old that Cory was a cat. He had 9 lives. He was a walking version of the show, “Survivor”.
He’d survived a major fall from a cliff.
He’d survived a 6 week trip from Ohio to Arizona alone on a Schwinn bicycle that he picked up from a garage sale with $125 in his pocket, a tent and a backpack.
He’d survived a motorcycle accident.
He’d survived Bone Cancer with a grapefruit sized tumor on his arm.

I pretty much expected more of the same this time around.

The first day I truly thought about his mortality was during one of his chemo admissions. The chemo had indeed attacked the lining of his stomach, his mouth, and his esophagus. He was in unbelievable pain, could barely open his mouth and was ingesting Chloraseptic instead of meals because it was too painful to eat or drink.
It was blisters and open sores covering the mouth, through the throat, down the esophagus. Like a burn patient on the skin, but all over the mucous membrane. And the vomiting didn’t help.

Seeing him in pain tore me up. Like any parent, witnessing your child in pain feels worse sometimes than if you were experiencing it yourself, but this was reaching a whole new level.
And the helplessness was awful.

I wished and wished it were me laying in that bed. I would’ve truly taken his place in an instant. I had that thought a million times.

I was on the foot of his bed talking to him. The back of his bed was elevated at an incline and he was talking about how he didn’t feel very good and felt nauseous. It was the normal, daily conversation that week. Then, I’d respond with some question in a feeble attempt to help—when did they last give you nausea meds? do you need the sick pan? do you need to push your button? do you want a squirt(Cloraseptic)? do you want to lay back? do you need to sleep? …..

(“Push your button” was referring to the self-regulated pain medication that he could push the button when he needed it. Of course, there was a maximum dose and time in between, but it basically kept someone from having to be given pain medication when then didn’t really need it. Everyone decided that Cory had an extremely high pain tolerance…when other peoples numbers would be a 9 on the pain scale in the same circumstance, his would be a 7. So this little machine was perfect for him, who might not need exactly what the doctors might think he needed for pain in particular circumstances.)

Anyway, I was asking him something when suddenly he leaned forward with the familiar “Im about to get sick” look. I instinctively went to grab the “sick pan” on his side table and before I could even grab it, he heaved, and blood was everywhere. I held the pan under his face while pushing the nurse button on his bed furiously. The blood kept coming! It seemed like there weren’t any heaves, just gushing. No one was answering the call button! Suddenly, he couldn’t breathe. His eyes were huge and filled with terror, his mouth agape, no noise, no coughing and he started throwing his body all over the place with his arms flailing– I threw my arms around his waist as he started to throw himself off the bed still attached to all his lines that led to the Pole… I screamed Help!Help!Help! at the top of my lungs like it was one huge fluid word. I hear from the hallway, “Someone’s yelling for help!!”and the door was open and 4 nurses came in one after the other. Then I saw the terror in their eyes as they saw the scene.  One said, “Hold him!” to me….I was trying. He was so tall and strong and trying to survive this moment with all his might. One grabbed the suction tube and shoved it in his mouth. “Cory, don’t bite!” one said. He opened it enough that she fed it quckly down his throat. Thank God he started coughing and gasping for air. Thank God, Thank God, Thank God. I felt as if He had heard the prayer I didn’t have time to pray. At the same moment, Cory’s whole body fell limp in my arms, as if he had sprinted a marathon. I looked up to see many had joined us in this smallish room. My mind tried to grasp what just happened. As I scanned the room, it looked like a tornado came thru.

About that tornado….it arrived.

Oxygen mask was on. His mucositis had been bleeding into his stomach. He had aspirated on his own blood.

The doctor was of Indian descent, I didn’t recognize him. He was literally scratching his chin with furrowed eyebrows looking directly at Cory, who’s eyes were closed in exhaustion. Cory didn’t truly meet the standards of admission to the PICU, but the doctor finally said, “I think we will send him to the PICU. We are not equipped here and PICU has a full time Respiratory Therapist and all the equipment needed. He still has blood in his lungs and so he can stay there until it’s cleared because it’s a real risk for infection.” (Practice Run: ICU)  It disarmed me that day, when the doctor had an obvious look of not knowing what to do at first. I got used to it.

That was the day I knew we could lose him in an instant.

Cory spent a week in the PICU and drove the nurses crazy because he was so active. Active and on a lot of loopy medication. They are used to patients whose organs are compromised, often on ventilators and often fully sedated. Cory took 2 hour showers hooked up to his pole, had auditory hallucinations, “Mom, do you hear that? The lady with the dog back there…” as he pointed behind his bed. I stopped correcting him because he would have this exasperated look on his face when I would say, “There’s no lady or dog, Cor.” And he would say , “Listen!!” with big eyes looking at me like I was crazy.  He was constantly up and down to the bathroom, and none too stable on his feet. The nurses looked concerned for his safety from himself on a regular basis. His O2 numbers warranted an oxygen mask and the rattling in his lungs from the blood he had aspirated was present about 5 days, then they sprung him from the PICU.

He had recuperated from his 5th brush with death.

One uncontrollable event, one uncontrollable infection, or one uncontrollable reaction was all it would take. Uncontrollable was the key word. Life lesson of the day.

This was a picture Cory took on his bicycle trip. The caption he wrote says: “I found this right before dusk, where I had to find a camping spot.” He set up his tent anyway.  We often talked about how, without his knowing it, his bicycle journey mentally prepared him for his cancer journey. This seemed an appropriate warning for the cougar he encountered this night–“STOP! STAY CALM!…..If cougar approaches, throw objects &speak loudly!….If cougar attacks–Fight Back!”  There were more cougars to come, and he never stopped fighting back.

.

Chemo and Crazed Mom

1015147_10151697658846240_117636526_oMarch 2013

We’ve been here, done this. I drive Cory and his worn gray backpack back to Cincinnati Children’s Hospital to be admitted. We pick up his favorite “Pre-I cant keep anything down” meal beforehand at the same Chipolte on Martin Luther King Dr. that we frequented last year. We eat in silence, in the car, looking out the windows. “OK, let’s do this.”, he says. He’s fueled up for the fight. Im fueled up for a different kind of fight.

Same route, same garage, same elevator, same floor. This time, last year.

It’s not fair that we are here again. “No one promised you fair”–those words in my head right now are not helpful. Who said those words for the first time ever?? Id like to have a chat with him. I vow I will never say those words to my children, even though I probably already have.

Im a walking contradiction–inside negative thoughts, feeling sorry for all of us–on the outside, making small talk and joking with my son on his way to have the same poison running through his veins that caused the leukemia party that’s in his bone marrow now. I’m really angry.

We are in the elevator and newbies come in. You know you’ve been here too long when you can tell by the expressions and body language of the parents who is new to the Medical Crisis Game. I just want to throw my arms around them and say, “You aren’t alone.”, but today I restrain myself and I force a smile. They’ll need all the smiles they can get. I know I cant tell them it’ll be OK, because it very well may not be. No more rose colored glasses for this girl….because This is not OK.

We go to the main floor, we go to the security desk with all of the evidence in our arms and on our backs that we are coming to stay awhile. They take my Parent Picture and I get an pass to hang around my neck. Security (rightfully so in a childrens hospital) is prison-like safe. Complete with badged, armed officers, and double doors they have to buzz you in to get thru. But you are locking yourself up. Probably why Cory always used the term, “Im free” for his time out of the hospital.

Next set of elevators–Floor 5, please– Oncology.

We get buzzed in, we go to the desk. They recognize him. Like a “welcome home” reception….not right, I tell you, not right. I wanted to pound on the desk and say, “Hey… No! We already had the non-latex balloons and the NO MORE CHEMO poster board and party, remember???” They said cured!  We. Are. Not. Supposed. To. Be. Here.

I didn’t get sent to the psych ward that night from acting or speaking my thoughts. They stayed soundly in my head. Not one person, especially Cory, was aware of the Crazy Mad Mom that resided inside my skin that day, but I understand why people end up there. I was close.

We just followed them to his room…..and set up shop. Pillows here, board games here, computer here, footies on with the non slip-soles, bedside table here, now put sheets on the pull-out parent MostUncomfortable”Bed”ontheplanet (Sheyna, there are worse things) and oh—here comes the familiar friend. The Pole. The pole that held the vein(no pun intended)of his existence in the bags that hung from it. Poison or medication or blood…what’s your pleasure??

I reprimanded myself.

Sheyna….Pray. He needs you….think Jesus.

I know Jesus was there, but I just couldn’t. Sleep was the best option.

Chemo (detour:California)

March,2013…So the plan was in place. We would fly out to California, where Cory had begun his new life in his dream state 6 months before. We would pack up his things to come home to begin 2 consecutive month-long rounds of chemo to bring his cancer into remission.
Why not just do chemo and skip the transplant then, if it would bring it into remission? I’m glad you asked, because I did ,too…..
The reason is that someone has to be relatively healthy to recieve a transplant. And Leukemia, at the advanced stage Cory was in, is an aggressive beast, so remission is usually a short-term affair. So, he would be very temporarily healthy. Just long enough to receive  his transplant.
Point being, the timing of the Plan was essential.

We hop on a plane and proceed to have a beautiful, beautiful time. He had to wear a mask in the airport so he wouldn’t catch anything that could be life threatening or postpone the timing of the Plan….so other than some people taking the long-way-around us when they saw the mask, it was a “normal” trip. Changing planes, standing in mile-long lines waiting to be patted down, standing in the Body XRay machine, dozing in vinyl covered chairs, playing cards on the floor, yawning a lot, people watching, enjoying each other’s company, or comfortable in one another’s silence….
You see, Normal IS Beautiful, but no one ever really gets that until things aren’t normal. Then you Know.
Anyway, we sat at a too-pricey wine bar and shared a flight of wine and ate cheese, crackers, and grapes. And left hungry. We were on our way to California, though, so when in Rome (or on your way to Rome)…

We never spoke of The Cancer on this trip.
We had spoken of it before we left…Alot…in the Shock and Grief and What-Now and I Cant Believe It and You Can Beat This talks…
He cried once in my kitchen. I use that term loosely. It was a shuffle with a look at the ceiling, then a longer look at the floor, a couple short catching breaths, then eye contact. His eyes were welled up and a tear was creeping down the sharpish edge of his cheekbone. I wiped it away. My eyes immediately filled as well and we shared a couple This Sucks quietish tears.
I decided upon Diagnosis, though, that I would never be more upset than he was at any given moment. If he could handle this, then I sure as hell could and would. I did scream and sob, mostly for him, but I saved it for my pillow.
My self assigned jobs would be pray-er, encourager, positivity speaker, and love, love, love & affection-giver, and advocate for whateverheneeded. (Mom Jobs for sure, but what is the point of anything else?) …Oh! and laugher! Most important job of all.

I like that our family eventually resorts to humor in tough times….it’s nice to laugh sometimes when nothing is funny.
Like a little light in a dungeon.
We laughed a lot on this trip.

After landing in San Fransisco and renting a car, we drove in crazy bumper to bumper highway traffic to the San Fransisco bridge. We parked illegally (Cory brought out the edgy side of me), and asked a stranger to take a quick touristy picture. I wished we were tourists.

We got to the funky, eclectic place Cory lived and worked. A goddess-loving, large-wildcat and bird sanctuary. There were 101 really interesting stories about the people who lived, worked, and passed thru there…Cory was lovingly amused by them all. It was a property wrought with contradiction, like life usually is. Gorgeous courtyards and gardens and beautiful animals to the front. Beatup trailers, RVs, and unfinished or abandoned ideas to the back.

Cory was a Cat-Caretaker/Web Designer. That wasn’t on the list of childhood “What do you want to be when you grow up?” choices, but it encompassed his gifts and talents to a tee.
He was the family “fix my computer” Guy, he scored a 4/4 on his AP Computer test, went to college for Computer Science…computers and code were one of his things. And “their website is stuck in the 80’s, Mom”….

He was also an Animal Whisperer. Vanessa (Cory’s bestbest friend from college who lived and worked there with him) and he relayed a story from the winter before of him spending days with a wildcat to remove a string from a surgery it had had to drain an absess. In her words, “Cory spent a week gaining her trust; slowly approaching her in her cage every day saying, “Hey baby girl, I’m here to help you. Will you let me help you? Shhh, it’s okay,” or some variants thereof every single day. Until he could approach her. Until he was able to pet her her. Then he was able to sit next to her and scratch the top of her head with the scissors in his hand so that she’d get used to the scissors near her face. Finally, he was able to try to cut the piece of string. The scissors were too dull- it wouldn’t cut. The wild cat got angry, growled, and ran into her den to hide. It was another four days before she let him that close to her face again. Cory remained calm and patient, stopping by before getting on the bus to college, and also when he got home. He finally got the string out of her face, no problem. From then on, she often let him pet her and play with him.”  He succeeded. The makings of a legacy…

At the farewell dinner the next night I heard that story a few times over from the staff there, coupled with words of love and admiration for him. I sat by a lovely woman (seemingly my age, seemingly unassuming with mousey brown hair and grocery store-shopping attire) who after talking about how wonderful Cory was, and what utter fascination she had for my being a mother(“How did you become a mother?!” Ummmm….), she then proceeded to make a strong case for the reality of Teleportation. For real. I tried to look matter-of-fact while I listened. If only….
When I shared this with Cory and Vanessa, they were not surprised. Cory affectionately laughed and Vanessa only said, “Ive got to get out of this place…” They were observers, employees, and loved the people, animals, and the land— but carried their Midwest sensibilities in their back pockets.
 I enjoyed them together so much.

Vanessa had prepared a room in the resort for me. I was so,so touched by her hospitality, she was taking care of me before Id even arrived. She attended to the little things so I would be comfortable. I decided I’d write to her mother…shed be proud of her, I was sure. She’d raised a Beautiful Heart and through her sometimes tough exterior, Vanessa touched me. I never had the chance to spend much time with her previously, but decided she was family the moment I saw she and Cory interact. Their relationship had the markings of dependability, ease, acceptance, understanding, hardship, laughter and mostly, of uncondition. I could see in her eyes she was scared and vulnerable and worried with the news of the new developments. I wanted to scoop her up and bring her home with us.

In the 36 or so hours I was there, I had the Napa Valley Cliffnotes Experience. We walked the Meditation Labyrinth and the Fresh-Vegetable Gardens on the property, walked to the local coffee shop (a moment I am forever indebted to Vanessa for snapping this picture), visited the local self-employed grocer, made rounds to 4 of the vineyards, ate greasy Mexican food, also ate a Vegan fresh and filling meal, drove with the windows down and the music loud, and took in the breathtaking sight of the landscape. I know why he loved it here.

The Reality of the situation was always floating around us, but for now, we consciously and collectively treated it like an afterthought.
“So, did you call the Mini-Storage place?…oh, good, should we put my name on the contract too?…..the grape vines are shaped so funny, they look like little trees, don’t they?”-Me
“The vineyard is down the road to the right….hang on, first I have to stop at the doctor I’ve been seeing here.”-Cory
“All packed? (why is he coughing?) ….So, are these birds trained, too?”-Me
“The tow place is on its way….Have you met my friend Dragonfly? He’s from Ohio, too!”-Cory
The tow guy had been called out of dinner with his family to come too many miles to tow Corys motorcycle to the storage unit. He showed us pictures of his kids. Cory pushed the buttons to do the lift….I had flashbacks to when he was a little boy.
Cory thanked him repeatedly. He was So appreciative of every human being. All the time.

We had the privilege of raising a Beautiful Heart too.

So-long, California. See you all too soon….

That Diagnosis Moment, Just Breathe.

March, 2013

We went bowling the day before. My son, Cory is left-handed. He used his right hand, because his left arm was in a sling. But nothing stopped him….he just adjusted and did it another way. No biggie.
See that focused face? He got a strike.cory bowling
Diagnosis, March 2013
Cory has a bone marrow sample taken from his hip….they’ve already found something suspicious in his blood.
Cory and I go to a movie while we await the results. We see Oz. We talk about all the parallels of life to this movie.
We had no idea how true that was….The tornado was on its way.
We eat Penn Station (he likes cheesesteak with mayo and banana peppers) and keep checking our phones for four long hours to pass. Having small talk and laughing about meaningless things. We go back to the hospital for results.

There are ALOT of people waiting in the hallway outside our meeting room @ 4:30 pm. This is not a good sign to my mother instincts. All his doctors from his first cancer treatment team were there and a group of new doctors. So many people, they had to bring in extra chairs to sit next to the walls.
Cory and I squeezed in the back of one of the two enormous tables taking up most of the room….are these this big for a reason? Napping? Surgery? Or maybe just to keep their distance….
it shouldn’t be this way. They should be sitting so close and holding your hands and looking in your soul to deliver news like this.
They were all quiet and had forced “I’m sorry” pressed-lips-together smiles on their faces.
I knew it was bad.

Keep it together, Sheyna.
My heartbeat was in my ears.

There is a new face doing the talking. You knew she was in charge of this rodeo. This was the passing of the baton from Team Ewings Sarcoma to Team Leukemia.
“70% blasts (the bad guys) in your marrow. No question, you need a bone marrow transplant.” –world renowned leukemia doctor
“How did this happen???”
(He was cured -that word was actually used- from his previous cancer, Ewings Sarcoma. He’d lost full use of his arm, had a cadaver bone and a metal plate and a really enormous, cool scar that represented the SavingofhisLife, but that cancer was gone. Home Free.)
Not.
“Very, very rare. In less than 1% of cases.”
So, he was unique and special…the one time in life I wished he wasn’t.
The chemo from his previous cancer treatment caused this blood cancer…..

what?

I didnt even know that was a thing….chemo causing cancer?
Then they went on about how they were going to pump more of the same chemicals in his bloodstream….

I can’t breathe.

Cory has no visible affect……he rarely does. He has always been even-keeled & “chill” as his siblings or friends might say. Even as a kid. He was not very demonstrative about strong emotion either way, positive or negative —you had to know him to read him. I can read him. Im reading four-letter-words in his brain. Im squeezing his hand tight and he is squeezing back.
And I feel him comforting me through his squeeze. HE is the calm in the storm.

“What’s the survival rate?”….ugh, why did I ask that?
“25% survive 5 years.”
In hindsight, I did not and could not register the reality of these stats. We joked that if he could make it into this 1% club of getting blood cancer this way, that he could make it into the 25% club of 5 year survivors easy…..
I truly,100%, never thought he wouldn’t make it.
Diagnosis: Acute Myeloid Leukemia