Early October, 2013
He continued to thrive, relatively…always relatively.
They just kept treating him as they’d been treating him. The anti-fungal that I fed into his feeding tube into his stomach each day was apparently doing the job. He needed less everything as each day passed. Less pain meds, less blood, less platelets, less dialysis, less tests, less vitals taken, less care. It seemed about a week or so passed of doctors ….waiting….waiting….for things to take a turn for the worse.
That didn’t happen. He had More energy, more self-care, more conversation, more movement, more good “numbers”, more stability, more predictability, more healing, more Intention every day. He was waiting for a room to open up on the Bone Marrow Transplant Unit. He required ALOT of care, but no longer needed Intensive Care.
Cory and I or Cory and his visitors had meaningful or meaningless (which was just as valuable) every day. We told him about the Do Not Resuscitate Order. I apologetically told him why they recommended it and I signed it. He told me it was okay….that under the circumstances, we all did what he would of wanted. Then he said, “That’s why I had You sign that paper.” [the medical power-of-attorney….at which time I signed, I never dreamt I would be called on to use]. He consulted the doctors and all felt it would be prudent to revise it under the strange circumstances that he was improving. (It was an absolute Relief to be able to have his say in his medical decisions again. A Relief.) They took the DNR order off.
A Doctor said: “This has never been reversed. I will be honest and say that we don’t understand it. We are meeting every morning (like, 8 doctors…and if you include the residents, well, it’s ALOT of doctors) to decide where we go from here.” I could feel the doctors being more “careful” with what they said to us. There was some dissention in the ranks and they became cautious not to pass that on to us, which we appreciated, but could still sense. Until…
He got a new round of Fungal blisters early October. The month-old ones from the first round were drying up, healing. These new ones came in with the same vengeance and pain that the first round did, only this time we knew immediately what they were. The doctor teams rotated in that day, one by one at different times in the day. They upped the Anti-fungal, they upped the pain meds. Once again, he couldn’t be touched or moved without off the charts pain.
Cory said to me when I asked him if he wanted another ‘push-of-the-button’ pain medication hooked up to his IV, “I want to be Awake.”
I said, “You need to be comfortable, not in pain. There is no need for you to suffer.” He said again, “I want to be Awake.” He did not want to go again into the abyss of pain medication.
“Then we will take the pain meds slow. Can I give another push…you are hurting.” I said. The moans and the groans and the crying out when we or the nurses had to touch him to care for him. There is NOTHING like seeing your child in this level of pain. Nothing.
But, this was not about Me. And as long as he was capable of giving intelligible instruction on his care, we would all respect it. He was my son, but had grown into a man through his cancer journey. If possible, things would be up to him.
“Yes, push the button.” , he finally said. Through the day we figured out when to give him extra pain meds if certain procedures were occurring, and to back off when he was at rest. So he could be Awake when he wanted to be, and somewhat comfortable when he had to be touched.
In came Kidney, and ENT, and Cardiology teams…..one by one coming in to lift the sheets and look at the new blisters and say, “mmmm, mmmm, mmmm. ” and purse their lips, and then look up at us with the hopeless look in their eyes we’d seen the first time around.
Then, in came Team Infectious Disease. New Face on Rotation that was on last time around, and this is what he had to say: “We can save his life.” He said the magic words. He was like….20? (not really, but that’s how anyone under 35 looks to me these days). “How?”, I say. “He needs Ambisome…..” then rattled off some statistics that I didn’t even hear because I was having a flashback to the Oncology unit when Cory had an Anaphylactic reaction to Ambisome and blew up like a balloon and his lips turned purple and he couldn’t breathe and they slapped a Big Red bracelet on his arm that he still wore that said AMBISOME on it. Aaaaaaand, I was like….see the bracelet? without saying it, just pointing, like duh, don’t- these-bracelets-mean-anything-to-you? He CLEARLY can’t have Ambisome….it could kill him. Yeah, and? “The fungus will kill him.”, he said.
Here we are again. My head is literally spinning. I can’t even manage to put a simple postage stamp on the 25 addressed Thank-you cards (in my junk drawer at home that I wrote 2 years ago) and place them in my mailbox…..and this doctor wants me to understand his point from the 10 words he’s just given me??? I simply said, “I don’t understand.”….which it turns out was exactly what he was waiting for me to say, because then he started to explain….
There was an Allergy team of doctors….another team….that could do this thing called “Exposure Therapy”. From my understanding, little by very little, they introduce the allergen to the body under supervision, giving the body time to develop immunity and accept it instead of rejecting it. He said we should do this, because the digestive anti-fungal we’d been giving him has been halted by many digestive issues blocking absorbtion. Ambisome would not experience this problem in the bloodstream. And the exposure therapy would make it that he could receive it. OK, great!!!…
But then….In came team Bone Marrow Transplant team (these were the Cheerleaders, the positive, glass 3/4 full docs…..I imagine, because BMTransplants are a relatively new lifesaving discovery (like 30 years)….it’s all hopeful. Just surviving is hopeful.) They’d been with us from the start, we trusted, and they felt like family. Buuuut…..they were not my go-to cheerleaders in this circumstance. They didn’t buy the Infectious Disease Team’s strategy. “He might not survive the Exposure Therapy. I don’t feel comfortable signing off on that. It’s UP TO YOU.”
(Wait, can we have a debate? With both teams in at the same time? I will provide podiums….please??!!!)
I wanted to say, “WHAAAATTTT??? Up to us? How is this medical decision up to us?? You are the doctors! TELL me, collectively, what is best for my son, and I will believe you becauseyouareDOCTORS!!!!!”, but I didn’t say anything. All the panic was safely in the confines of my head.
With￼ concern in her voice, she said, “Call me when you’ve decided.” I can still remember the moment of realization that Doctors were human. Praise God for them, praise be…they are the only reason my son was with us, but they are Human. My heart went out to their struggle. I stared at the phone for a couple minutes, shut my eyes and said a little prayer. I breathed and breathed when I wanted to scream and scream, but I was in the room with Cory, so I didn’t.
“Not happening” was what my brain said, but it was. I googled and googled and thought, “There is 1000 years of education in this hospital and I am googling a Cliff-notes version to help DECIDE what path of medical treatment to head down for my son???”…..HUH? At that moment, I felt that my life, as I knew it, was a scam.
I was still the Power of Attorney because of the amount of pain medication Cory was on. I was still the final say. But I knew when Cory was Him, so we made a commitment to make his opinion all we would ever vote for, even if we felt differently (which thankfully never happened). We made a commitment to being His advocate. HE was in charge of HIM and I wanted him to know that.
We had to get Cory’s opinion. I waited until it seemed the meds had mostly worn off and he was somewhat clearminded. I explained at 1 in the morning everything all sets of doctors had said. I said, “What do you think?” He was quiet for what seemed like 10 minutes, but I’m sure was only 2 min. He said, “Let’s Do It.” “Do what?” I said, just to clarify. “The allergy thing.”, he said. He was willing to risk his life to save it. I agreed. His other parents agreed. To be honest….it was worth a try. The outcome, if it failed, was the same outcome if we never tried.
This life thing…it’s a team effort. No one does it alone.