Life's Journey

Henry rested well last night and is still asleep this morning. It's left me with a preponderance of time to think. It's the quiet and lonely times that leave me with wandering thoughts. It makes me think they're always there, but just require solitude to emerge...

Cancer sucks. It robs you of your expectations for life. It cheats children of a carefree childhood. It does not quietly assume your life, but sideswipes it suddenly and abruptly. An unexpected result, however, is that some of those cherished expectations were actually doing some cheating too, binding our daily actions to a possible future, of which there was no guarantee. These expectations had been driving our daily behavior to a destination so quickly that we could not look out the window to see the beautiful scenery passing by.

Since Henry's diagnosis, we've been forced to take back roads instead of the highway and to drive well below the speed limit. We've had to jettison the cargo of our expectations that previously felt so necessary. Our map blew out the window miles ago and we're navigating by feel based only on our moment-by-moment experiences. We're more apt to stop and take in the vistas at the side of the road and while there are bumps, to be certain, they are now serving primarily as a means to appreciate the smooth roads when we encounter them.

Henry's tolerance of his Cancer is teaching me to live with appreciation, compassion, grace and awareness. Life has it's share of pain for each of us. Each person's idea of distress is only relative to his own experience. We cannot experience the heights of another's joy or appreciate one another's suffering without some reference to it. These experiences cultivate empathy and compassion.

By recognizing our journey for what it is, our Life, we recognize that clearing the road of our expectations and allowing it to unfold is the only Way. Before Cancer we had our eyes squarely on the road ahead of us. We didn't even realize we each carry with us an extra passenger, reminding us that this journey must end. We must pause to pay heed, even be grateful for this reminder instead of ignoring it or attempting to avoid it. In so doing, this extra passenger has instead become our guide. It is only by learning to look Death in the eye, that we can see and understand Life more clearly for what it is. While we thought the important work was to get to a destination, it was actually in learning to loosen our grip on our expectations, enjoy Life's Journey and live today. The important work is actually learning to die.

And I said, "Please"
Don't talk about the end
Don't talk about how every living thing goes away

She said, "Friend,
All along-
Thought I was learning how to take
How to bend not how to break
How to laugh not how to cry
But really
I've been learning how to die
I've been learning how to die"

-Learning How to Die, John Foreman

I happened upon this when writing this post. I found it insightful.
Learning to Die - essay by Bro. David Steindl-Rast O.S.B.

An Active Morning

Increasingly Henry is playing more and sitting in bed less. There is less pain, less rash, and less coughing. We're peeling off the medications he's been on and turning down his pain medication slowly Today was our first day with his ANC over 2,000 and we discovered that we need three days above that threshold before we're released. So we're hoping for Monday provided there are no hiccups.

Henry was unhooked for a while today. We went down and picked up some pictures from the photo lab in the hospital here. These were Henry's first printed pictures taken from a disposable camera given to him by the transplant team here. Among the pictures of the closet, his medicine pumps and some mystery photos, he was able to capture several visitors, his oncologist, several of his favorite nurses and his parents. We placed them in the provided album and they're now the focus for any visitors.

When we were coming back from our adventure out, the receptionist on the oncology floor handed us a package from Amazon.com. We proceeded to open it right in the hallway, in front of several nurses who are generally so sweet to Henry. They watched him as he opened new Max and Ruby videos. This promptly cut short our walk and he's now resting quietly watching his second of the three. It was such a nice surprise for him to have and it arrived at an opportune time.

Later today we plan on some construction paper activities and perhaps a repeat of this morning's enactment of wreck-the-cars-on-the-train-track. Good spirits abound and we're looking forward to some easy days ahead.

Freedom

We haven't had much time to write - for a good reason. Henry has been busy playing on the floor and touring the hospital, unhooked. All of his old activities that he loves. It's been refreshing to see. So, this post will be brief, but know that Henry is doing great now and recovering well.

"Daddy?"

"Coming Henry!"

De-intensification

Henry continues to improve steadily, in every area except his insanely itchy rash. We had the dermatology team come by yesterday to offer their opinion. They seem to think that it's related to one of his medicines. Since he's been on over a dozen since he's been here, it's really anyone's guess. The bottom line is that it doesn't appear dangerous, and we'll be putting a steroid cream on it for the next several days. It's still driving him nuts. Fortunately, it doesn't keep him awake, but during his waking hours we are constantly applying some sort of soothing lotion.

He still has some pain, especially related to his mouth and throat. I saw a small amount of blood in his mucous once yesterday when he coughed, but overall his mucositis is already just a shadow of it's former self. It humors me in some way that now when he gets a small string of drool on his cheek he flips out, where just a few days ago he was lying in a pool of it without noticing or caring. It is truly remarkable how quickly those symptoms have improved.

Our goals now are to de-intensify his regimen, to move to hospital discharge. We need to remove his antibiotics one by one to make sure he doesn't resume a fever. We need to gradually turn down his morphine drip while making sure that his pain is controlled. We need to work toward getting him more physically active, out of bed a little bit, but I think that will be the easy one. The spirit is willing, the body will follow when you're three. This will all take several days, but we're hoping to be out sometime around the weekend.

We also found that Henry was very demanding yesterday, and very grouchy. There were a lot of tears, a lot of tantrums, and even hitting, which he never does. He had ups and downs, and we were able to spend some time playing games and talking pleasantly. It's sad to see him so angry, and I wonder what is going on in that little head. Is it anger at what we've done to him, or just the grumpies from one of his meds? We'll never know. I do know that if one of my children acted this way on a normal day at home, I'd be ready to sell them to the gypsies. Yesterday I took great pleasure in watching him use those muscles to kick, his voice to scream, his arms to throw things. Just two days ago I couldn't have dreamed of him having the strength to do any of it.

An Unpayable Debt

Henry is doing much better. While he's still swollen and having pain, he's become more energetic and active which is heartening to Tara and me. Yesterday, he actually sat up for a while to play with a new truck. He giggled and for 20 minutes, I think he forgot where he was. A short time later he was hiding from the nurse, a very good sign that the old Henry was soon to return.

The mucositis, which is subsiding, has taken a backseat to his body rashes. He has some pretty severe itching and I can only describe the looks of them as hot and very uncomfortable. Some areas remind me of a severe sunburn where his skin has begun to peel, some of it bleeding. Fortunately the morphine keeps this pain somewhat at bay as well as constant lotion on problem areas.

He was awake until 12:30am this morning, but then quickly fell asleep after a long awaited bowel movement and after the nurse took down his blood transfusion. He slept well after that, cranky during his 4am vital signs routine, but still down now as I'm writing.

Sometimes I try to imagine this experience without some of the support we've had from family and friends. Emotionally we'd be strung out and tired, alone and stressed beyond belief. We'd be constantly worried about the girls, and I'm certain we'd not be getting near the rest we need to run this race.

I would have never thought it, but the help of strangers has been of a tremendous support as well. The Believe in Tomorrow Children's Foundation, with nothing but word of Henry's illness, immediately put us up for many nights within minutes of the hospital. Accommodations have been convenient, friendly and complete with meals and friendly and empathetic staff and volunteers. They provided us with our recent retreat to Ocean City as well as our current lodging.

Except for the time taken for our care of Henry, Tara and I just spent a nice weekend with the girls and my mother, all together in a fully furnished apartment within a five minute drive of the hospital. These accommodations, collectively called the St. Casimir House, are reserved for patients needing to stay close to the hospital during long treatments, of which, believe it or not, Henry's is on the short end. We'll keep this apartment to use at our convenience for the remaining duration of Henry's high dose chemotherapy and stem cell transplants, another six weeks. It's near the harbor, safely located in Canton and is near amenities like groceries and pleasant areas for walks. The also provide us parking across the street from the hospital entrance which saves much time and cost. Henry will join us when released between and immediately after treatments. It's a wonderful home away from home.

So while I know no one expects returns, we'll forever be in debt for the love, support, and boundless help we've received. We've tried to graciously accept it, use it to keep our family afloat, and with humbled hearts to learn greater compassion and caring for the community around us which is ever so much larger than we could have imagined.

The Corner

We haven't yet rounded it, but I think we can see it.

Henry had a very bad day yesterday. Everything had worsened. His pain was not well controlled. His rash has expanded to close to half of his body, and he was scratching it uncomfortably often. His mouth is full of sores, and his entire mouth and lips are swollen from them. His drool and mucous had become more bloody again (in line with his dropping platelets.) He has been sleeping so much on his right side that his right arm and face is swollen and his eye almost swollen shut.

I talked to the doctors about being more aggressive with his pain control, and they made some larger changes to his doses. He had a much better night, and is smiling for the first time in a while this morning. (Of course, who wouldn't smile with Aunt Molly entertaining!)

There are some bright spots. He hasn't had a fever for about 24 hours. He seems to be drooling less, and therefore coughing less frequently. His white blood cell count almost doubled to 110, which probably accounts for the improvements.

I don't want to jump the gun, or count our chickens, or any other cute phrase you can think of - but I think we're close to rounding the corner. It can't come soon enough.

Our Little Gentleman

Henry's scans and tests yesterday came back negative. We're thankful for small favors. This was some good news in the midst of this nasty mucositis. Henry's morphine drip has been increased again several times and much of the time now he's asleep or glassy eyed. Nobody likes to see their child glazed over from medication, it's far better, however, than being in pain.

At times when the pain overtakes the medication, Henry cries and is angry. "Daddy, I'm not feelin' good." He grunts to display his frustration over it. I can see him clenching his body as his scalp reddens, his temperature increases, his blood pressure goes up, and his heart rate tops 200 beats a minute. The first time I see this any given day, my heart rate follows in kind. I begin to be a bit more calm as the pattern repeats, but there's nothing really relieving about that.

Despite this, Henry still performs his 'jobs' for the nurse, helping her with vital signs. Overnight when he was getting his blood drawn for labs, the nurse was fumbling in the dark trying to reach his tubes amidst the many lines running into him. All on his own he lifted his blankies to ease her search. It was such a kind thing to do for him to notice her needs when he is in such pain. So he gets angry, so he is frustrated, but that was real character.