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: 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: Bronchoscopy To-Go, please

September 14, 2013:

Cory wasn’t getting the oxygen numbers he needed. They talked about re-intubating him.

Oh-no! We were not going backwards….As if we had any control. But we pretended.

They have to do a scope in his lungs to see what might be the problem.

What’s fascinating in the ICU is everything comes to you. I guess that’s a benefit, if you are looking at the glass even a little full. There was No transferring him anywhere for a procedure where we wait in the waiting room, take a number and wait for the doctor to meet the parents in a room built for 2.5 people to tell you the results….

Nope, the equipment, the doctors, the nurses, everything came right to us. Front Door Delivery, Room 21. Bronchoscopy To-Go please.

“So, they know what amount of medication to give to sedate him properly for the procedure?? We don’t want the same thing to happen that happened with the breathing tube (where he wasn’t sedated enough and was actually awake for the procedure)….just want to make sure.”,  I say to a New-to-us nurse. She had a great sense of humor and knew her stuff.  Lots of casual conversation after a couple days of being together…

“Oh, yes!  They are using Propofol…”Milk of Magnesia”was the nickname…he will be Out. It’s the same stuff Michael Jackson died from.”…..(errrrr….things you don’t say to the parents in the pediatric ICU….we knew she meant nothing by it. It was a jolt, though, to hear at that at that moment while looking at the milky substance pumping into our son.)

cory bronchoscopyAnd, we, the parents, never had to leave. I kept waiting for them to dismiss us. I felt awkward, like a kid who was in the Teacher’s Lounge for lunch, waiting for them to notice I was there and send me back to the cafeteria. But instead, they handed us masks. We were in the back of the room sitting on our Bed/Chair and watched what looked like a Discovery Channel presentation. The doctor was great about informing us of what he was seeing as he went along, and had it not been being performed on my non-organ-functional son, I would have thought it was really interesting and cool.  As they stuffed a looooong long tube into his mouth without any response from him….The upper lobes, the lower lobes, the brachial tubes…

I now visually knew my son from the inside out.

The organization of the human body amazes me. They found blood, but it looked like old blood, not a current bleed.

We don’t have to re-intubate him. Thanks Be.

His numbers are all going up. His bacteria that is detected every now and a day are treated. He will go back to the Bone Marrow Transplant Floor in the next few days. They are just waiting for an open room on the floor.

Back to Normal—coming soon to a theater near you.

His dad, Charlie, buys his plane ticket home to Arizona for two days later.