posted on CarePages June 26, 2011

“The primary function of miracles is not to shock the senses but to bring revelation to grant us a glimpse of the divine and through that glimpse the opportunity to be transformed.”
From a book I picked up at Robin Smithwick’s house.

It was my night to stay with Brenny. Tara and I had spent most of the day rifling through every nook of the Bluff House in preparation for sorting, packing and gradually shipping our lives back to Augusta. This was the Wednesday of the St. Jude Classic, three weeks ago. We had experienced a beautiful morning with Brennan’s first real day as a quasi-civilian in Memphis, With Martha and Margie Lackie assuming afternoon parental supervision duties, Tara and I spent the rest of the afternoon organizing our departure from the Bluff with an overdue sense of free-and-easy eagerness, packing our bags to Van Morrison and talking about details written-off only weeks prior.

Settling into his bed that night at the Grizzly House, Brennan was feeling good, still riding high from his honorary caddy experience at the golf tournament, and cheerfully looking forward to the next day when we were all scheduled to meet Tim Tebow and Urban Meyer, having been tapped as the St. Jude family to tell their story to these two honorary guests early the next morning (Brennan and I showed up early. Tara, Martha, Christopher and Nat showed up in time, but with Nat totally geared out in UGA, shorts, shirt and hat. Tebow entered the room to say, “Really? You came to meet me like that?!?”).

With the golf tournament and its many family oriented activities, this was the week we had adopted as the celebration from which our own three honorary St. Jude celebrities would exit stage-left (any kid, sibling or patient who has ever forfeited part of their youth to the ongoing story of St. Jude’s has, in my strong opinion, earned their rightful place as part of this institution’s esteemed celebrity legacy). While there was much to accomplish before we could officially leave the following week, we all had been eagerly anticipating this event as the final happy act to a long and grueling drama (too often indistinguishable from tragedy.). With Brennan’s energy as strong as it had been in months, it was emerging as a happy-ending and grand finale to a script once too suspenseful for my sheer emotions.

The usual tedium and frustration of moving had been bridled by Brennan’s renewed spirit and the excitement permeating through each one of the boys. We saw it was the tail-end of a miracle, and we were grasping onto it all the way to Georgia.

While delayed, we are, needless to say, still latching hold of the good part and still have our sights set on Augusta for what now appears to be a June 29 departure from Memphis. Of course, not twenty-four hours after the above referenced evening, a line infection kicked in, throwing the whole plan out the window. Another week “in-patient” reshuffled our schedule well past the fanfare of the golf tournament (Bags were packed, and we weren’t ready to go). But, in so doing, we were awarded time to rethink how we are going to best manage our family’s third effort at “reentry.” More importantly, it afforded us a vastly different perspective of the miracle before us.

That wednesday night in the Grizzly house, while Brenny was all wrapped up in his “snuggly” Georgia Tech blanket, with his little body enveloped by the mound of pillows behind him, sipping his red gatorade and literally smiling through an hour of TV before going to bed, I got a text from Tara. Jeni Clark was on campus with Cassidy in preparation for Cassidy’s bone marrow aspiration the next day.

For me and Tara, it marked the beginning of our knowledge that Jeni and Chad were more than concerned that Cassidy’s graph was failing and that her treatment options were on less than thin-ice. The text message read, “Cassidy and Jeni are on campus at Grizzly and want to stop in to say ‘hi’ to Brenny. Martha is staying with the boys and I’m on my way over to see them too.” I had not even time to tell Brennan what I had read when there was a knock on the door.

Cassidy stood with her mom (her “second mom”) Jeni . Her hair was growing back from transplant #3 beautifully thick and curly, and black like most of these kids seem to do after so much chemo. Since we first met 18 months ago this was the first moment when she truly looked like a normal, beautiful little girl. With her curly locks and little blue dress, her shy, smiling eyes lit up our room. But for the ubiquitous sky-blue respirator mask, she would never have been taken for a transplant/leukemia kid.

Almost every visit with Cassidy prior to this day has has been through the perspective of the transplant experience. In the midst of it, whether a good day or not so good, everything is seen through a gray veil. Nothing can disguise the gaunt pallor of having been dragged to the brink and back again. But when life’s light shines again, oh what a difference.

Always able to read my eyes, and keenly aware of my soft spots since we first met almost two years ago, I was relieved when Jeni greeted me with a jab. “Not catching you boys watching anything you’re not supposed to see are we?” she said as I embarrassingly realized that I was watching John Belushi in the Blues Brothers with a 9 year old boy.

Brennan looked over from his movie almost too bashful to say “hi.” But he smiled, waved his hand and managed to get the word out.

Standing still as a soldier at attention, Cassidy meekly waved her forearm and hand. Her elbow at her side as her little fingers wiggled “hello,” she shyly closed her eyes and turned her head behind her mom’s back.

These two kids have been in battle literally side by side for so many months. Experiencing their second and third bone marrow transplants almost simultaneously, bouncing from ICU to critical care to home and back again on virtually the same timetable, both are quietly but keenly aware of their distinctive brand. Every step they make, they are recognized as special and miraculous in both the eyes of God and every one who looks their way. Kindred souls with indistinguishable experiences and potentially identical fates, they have been separated for most of the experience only by physical walls. But shoulder to shoulder in prayer every day for so many months, their positive intentions for one another are expressed every moment of every day. On this night, there was nothing more than a cute, shy little boy and beautiful, shy little girl both sharing the silent graceful diversion of an innocent blush.

One and half years ago, Cassidy took the initiative to paint an army helicopter for “the boy down the hall” from the same home town with the same disease. “To Brennan, from Cassidy” it read. Conveyed with a paint brush and water-colors, that helicopter and the profoundly complex missive therein, accompanied Brennan through all of 2010, gracefully underpinning the courage and faith necessary to complete the year alive.

On this night, she took the initiative to come see her buddy, who she has hardly had time to visit despite the odd commonality of the ground they share. But because of it, I will never forget the kindness of her “new mom” in visiting their friends despite the looming inevitability of Cassidy’s bone marrow aspiration; and I will never forget how, in giving Cassidy a hug goodnight, holding her soft new head of hair while she squeezed me back, I received the identical rush of peaceful energy as when Brennan reaches his arms up for a indiscriminate embrace. They are of the same place.

The world has turned a million times since that night. This was when their paths as pediatric cancer patients diverged; but as the door closed and I lay my head next to Brennan, still laughing at the movie, I looked up at the ceiling and knew that their spirits are converged for all time. Their footprints accompanied each other across rugged ground. But their hearts, sharing both the exertion and solicitude of soldiers after battle, have touched so many in so may different ways that they will always remain in step, heart for heart; beat for beat; intention for intention.

Cassidy is home graciously and stoically preparing for a reunion with her first mom. In speaking with Chad at length the other day, we shared a refreshing conversation about how they are all doing. We made plans for our kids to visit with theirs soon after we return home.

Returning my call, he was at sitting by himself on a bench at Brick Pond Park at Hammond’s Ferry, reading a book on the rarest of cool summer afternoons in South Carolina. I told him that the same cool afternoon blew through here the day before. That Tara and I had a beautiful 30 minutes together outside laughing barefoot in the grass, feeling refreshed and happy because of the same weather that was just making its way to him. I know the bench where he was sitting, the view and beauty of the place where he had escaped for a few minutes to read, think, pray and take his mind off of things for a while (I had been there a thousand times before it even existed). He sounded good.

As we talked he told me how he now believes that the death of his first wife (Cassidy’s “first mom”), which seemed too painful and wrong at the time, was revealing its purpose, its link in the chain of miracles that connects everyone who is capable for forgiveness and willing to love. He explained that Cassidy’s strength in the face of it all, and therefore the strength of her sisters and their entire family and group of friends, has been fed and shaped, in part, by this event that four years ago had to have felt so purposeless.

We’ve certainly been affected by the loss of fellow soldiers along the way; but this is very different. Last year we packed our bags with prayers for Aaron, a fellow transplant patient who passed away within days of our departure. Cassidy is family. She is part of us. She has been with us for the entire St. Jude experience. She is with us every moment as we pack the final bag, make the final clinic visits, say our final “goodbyes” and set our sights on what God has in store for us ahead. But for her, our perspective and, more importantly, Brennan’s perspective, is less tenuous; framed with braids of gratitude, each thread representing thousands of prayers for even the slightest impression of God’s love.

As such, our homecoming will be bitter-sweet. Sweet for the obvious reasons. Bitter for obvious reasons. Learning that Brennan will soon say “goodbye” to a fellow warrior, his wing-man with whom he has fought the fight, at first elicits concern on our part that his spirit may be wounded; that doubt may affect his warrior’s instinct that has been so critically important. But like Cassidy’s mom before her, it also serves to smooth the rocky ground, cultivating security and repose.

In less than a week he will be home. After the last setback, the line infection proved to be nothing more than a line infection. The staph in his central-line fortunately never migrated beyond that point; however, it triggered a chain reaction of responses, not the least of which was the fact that he felt terrible. Whatever appetite he had was stifled by nausea and diarrhea. From a clinical perspective, his new immune system was jarred slightly, revealed by wavering levels of the immune suppressant medications (his tarclimous level was reestablished with IV doses, given that his system was not absorbing things appropriately, PR). We were also concerned about his kidney and liver which must process the assortment of drugs that he takes all day every day.

The most pressing issue affecting the delay was with regard to getting his primary immune suppressant medication, tacrolimous, back to a therapeutic level before leaving. These levels will be checked bi-weekly at MCG to ensure that the does is correct and to tweak if necessary. And finally, given the location of the infection, consideration is being given to removing his central-line and replacing it with a sub-dermal port, which could be accessed bi-weekly for regular lab-work once we return. It would also give him substantially more freedom, allowing him to swim and take a shower. Before this decision can be made, we are testing his liver’s response to a new anti-fungal medication to replace the micofungen, which he now must take IV every day. As long as the micofungen is prescribed, it would be impractical to remove the central line. We hope to have a final decision on that after we return home; but hope for the sake of delivering a him small degree of freedom.

Leaving St. Jude on immune-suppressants is not an ideal scenario. Having a healthy new immune system which seems to be holding back his AML is a god thing. Having it intentionally suppressed with these medications, however, leaves him even more susceptible to bacteria and bugs of all sorts (its like being handed a gun to defend oneself with no bullets). He is being sent home because, disease-wise there is nothing that requires the participation of St Jude. More importantly, he is being sent home because he needs to be there and see that his chances of truly surviving are real.

Tara and I explained to him that he will not be able to do many (most) things he is accustomed to doing at home. Lucky (his dog) can move back in with us, but we are to keep his guest visits limited as much as possible. The outdoors offers him very little, specifically with regard to sunshine. The mountains, which he loves as much as his home and his dog, are strictly off limits.

We explain all this to him as carefully and caringly as we can. Every time he says, “I understand. “Its fine, daddy. I just want to be home.” We are looking at this as if we have uprooted our house, Wizard of Oz style, and dropped it in Memphis. Its a “halfway house” type situation. But at least its halfway in the right direction.

This is the easy side of the miracle. The other is a bit harder to grasp. Were I writing this part of the script, it would have turned out a lot different. First and foremost, Cassidy would greet Brennan at home in full remission and paving the way for another 50 plus years, pressing on as old veterans.

I am not ashamed to say that I have blatantly asked for the miracle of a CURE, for Brennan’s life to be spared all the while knowing other kids around us who are not making it, and have not made it. But is the miracle the CURE? Is it the sudden turn of events when the ICU docs are down to their “bag of tricks” and the kid suddenly turns the other direction, free of cancer? Is it the science? Or is the miracle the experience itself, the people who have changed our lives and the love that we have received and, hopefully, pay forward to the next person? A return to love itself. Fully.

And now we return home, certainly to celebrate the opportunity for our family to live together at home again, but also to greet and touch this beautiful little spirit that has affected our lives forever and our capacity to realize that the miracle is not necessarily an unbelievable event; but, rather, how we respond to what is placed before us everyday.

Brennan has survived his fourth transplant and is currently in remission. That is certainly a miracle. Next week he will embrace the little girl who’s helicopter painting hung on his wall, inspiring him to paint and to express his love for others through little acts of kindness. The energy from that embrace will have miraculous consequences for all of us.

Did the miracle start with a record fourth bone marrow transplant in less than two years, or did it originate through the grace of a little girl expressed with blushing cheeks, as a gift of love for a little boy? Or when a man gave his life to remind us that the kingdom of heaven is within each and every one of us? Because of these children, I believe it is ongoing and that, whether we are here to experience it for another week or a full century, it is experienced through their capacity to forgive and to love.

What a homecoming.