posted January 18, 2012

“Will you make us laugh, will you make us cry?
Will you tell us when to live, will you tell us when to die?
I know we’ve come a long way,
We’re changing day to day,
But tell me, where do the children play?”
Cat Stevens

It is precisely because they play that we press on. As the song says, we’re changing day-to-day, but the children always play. Through our own life-experience with innocence, we have all lived. Whether through our past, our fervent devotion to our own children, or even a glancing appreciation for a joyful child we meet in passing, we are able to taste and feel the purity of life, the irreproachability of love. Things change. People die, but the children always play.

This Christmas was extraordinarily special for two families for precisely this reason. This was Brennan’s, and therefore our entire family’s, first Christmas home since 2008. It was the first Christmas in three years that we were not almost convinced that it was to be his last. It was joyous and hopeful.

At the same time, it was difficult for our hearts and minds not to wander across the state to our extended family in the Chances; a household that too was joyous, and hopeful to the extent that the meaning of this season, wherein the gift of hope defined by the life of a single innocent boy, could not have been more intensely relevant.

Two homes. Two celebrations. Santa showed up at both places. Through chaste surprise, each child, as in millions of homes around the world, delivered the gift of innocent joy. Albeit fleeting, surges of happiness and gratitude are indispensable to those of us who struggle with the day-to-day changes in our lives. If received properly, it is the most powerful gift in the world. How we embrace it, and how long we manage to hold on to it is simultaneously miraculous and elusive.

In our case, our first Christmas at home, after four bone marrow transplants in less than 18 months (not to even broach the aplastic anemia, two bouts with pulmonary edema, graph versus host disease, vancomycin-resistant enterococci and a handful of other typically terminal conditions) being home with a smiling curly-haired boy and his three brothers, exuding delight in every breath, is more than adequate reason to celebrate.

Despite the fragility of Patrick’s physical condition this past holiday season, we all know that his perseverance through three relapses of an incurable childhood cancer has demonstrated to the world that there is more to life than longevity. This kid truly milked more out of a minute than I have of an entire day. I am convinced that through his stamina, his joyous charisma, and his innocent yet bona-fide perspective, that he could do anything; and he paved the way for our family’s determination to Press On (despite the experts.), and for the eventual Cure for neuroblastoma That, my friends, is a Christmas gift.

Two short parallel lives, so intertwined over the past three plus years, ebbing and flowing with the baffling consistency of Old Faithful. Remission, relapse, remission, relapse, remission, relapse. The primary difference for us was that we have been consistently living away from home for such long periods of time. We were home for our first Christmas in seemingly forever. He was home for his last.

Passing through Atlanta to visit our friends, to and from Memphis, had become somewhat of a small tradition for our little gang. Stopping for the sole reason of Patrick’s extraordinary Lego collection has always been a thing of awe for Brennan, giving him new ideas and, I am sure, inspiring him to tackle more challenging projects as he fought the boredom and the pain of almost constant hospitalization. But for us and the other kids too, its just been a place of respite along the road. Shooting water balloons over the hedges at passing cars, as the kids would dart away to their own private hiding place, hearts pounding with giddiness and fear for being being caught; shooting baskets; hitting golf balls across the yard (an the street); There has always been playing army and, of course, music.

Packing up Christmas, for what was to have been a long winter in Memphis, we all stopped by there again on January 3, less than a week before Patrick’s 9th birthday. We had no intention of changing the energy with talks about “last visits” and such, but simply wanted to share whatever residual Christmas joy we had with the Chances, particularly Patrick (Our kids had no idea.). Needless to say, he was not feeling well; but the fact that he had the sniffles and a fever (most likely cancer related versus viral, etc.) required our boys greet him at a distance, not wanting to remotely risk the transmission of another but that could trigger GVHD for Brennan.

Stephen or Erin asked me how I was feeling. I told them I was “tired.” Patrick peeked out from under his blanket while curled up in his mothers lap and told me “You should do some Legos. That’ll help.” And why not?

The girls were not there, which made our experience noticeably less musical than most. The boys made themselves at home, though, as we visited with Christopher stalking the backyard in his Army gear (full helmet, web-gear, etc.) and Brennan filming Nat doing trick shots at the basketball hoop, all for the very explicit purpose of creating a Youtube blockbuster. As always we visited the Lego collection upstairs.

With the Simkins boys playing alone, although taking advantage of amenities with which they have become very familiar and at home, it was a bit like a listening to a virtuoso playing an inadequately tuned guitar. It was great. It was beautiful. But it wasn’t the same without their playmates.

Leaving for Memphis, the hollowness of leaving lingered with me and Tara for a while, as we drove mostly silent, listening to music in the car; however, despite the blatant vacuity of such a heavy valediction, I will always remember Patrick’s last words to me: “I love you too,” he told me as I left.

The boys were great, all the way back; and even starting school the next day, you could feel the groove struggle to find its place. Nat settled in to the Montessori School like an old pair of slippers. Christopher squeezed into his shoes that morning with painful scorn, proclaiming that he had been betrayed about spending an entire winter in Memphis.

But assuaged with the warm New Year’s glimpse of his old friend Fletcher Golden, who greeted Christopher with the soothing charm of a valet, he squeezed me for a long time, looked me in the eye and calmly said, “I love you daddy, but I really want to go home.” By the end of the day, he was brilliantly covered in mud, having played with his classmates near the river-bank looking for driftwood earlier in the day. He was back, playing and ok.

Tara worked that morning, while I took Brennan in for his first clinic visit of the year. He had been away from St. Jude for ten days, and was due for his bi-monthly Cidofovir treatment which helps compensate for his lacking immune system against viruses. It was also the day for his third phlebotomy, which is the medieval process of bleeding the excess iron content from his blood (a condition he has known as hemochromotosis, which is a side effect of having had so many dozens of blood transfusions)

It was one of those cold wet days, that have become to define our winters in Memphis over the past couple of years. Still in isolation for testing positive for adenovirus, he quietly settled into his “medicine room” with a glum sense of redundancy. My collection of Andy Griffith show DVD’s kept him occupied for a while, but waiting and waiting for the next treatment, he started feeling pokey.

Going back to his in-patient playbook, as a means of tolerating the day, he requested some IV benadryl, which always brings on quick and deep slumber. As he slept, one of the Nurse Practitioners, Richard Rochester, came into the room to quietly look him over and ask a few questions. Richard is the man who had been given the distasteful assignment of calling me on the phone on September 15, 2010 to tell me that Brennan’s bone marrow biopsy showed that he had relapsed for the second time. During this visit, however, he appeared upbeat.

“Did Brennan have any rashes or stomach issues over the break?” he asked. “Nope.” I answered him matter-of-factly.

“Are you sure?” He repeated to my somewhat concerned surprise. “Uhhh, yes. I can call Tara to double check if you want absolute certainty.”

“No, that’s ok.” He continued. “The thing is, he looks great and his labs and chemistries are as good as they have ever been. To be clear with you guys, we actually were testing him a bit while he was on break, in removing the Tacrolimus from his regimen. We wanted to see how he responded without it and it appears the answer is ‘splendid’.” [Tacrolimus was one of the two major systemic immune -suppressant medicines he has been on since the 4th transplant.]

“While we still have him on the Sirolimus (the other immune suppressant) and are weaning him on the Predisone (steroids are also effective for immune suppression), the team has looked carefully at his benchmarks, and there is no reason for him to come into the clinic every week. For that matter, we have canceled the Cidofovir treatments all together; therefore, he really only needs to be here every two weeks. You guys can go home.”

Of course, I should have hugged the guy. Instead my mind immediately wandered to the fact that I had just unpacked a carload of winter clothes for the family, and “what about moving again?”; and “how is Nat going to handle leaving his little school to which he has grown so attached, and where he has grown so much and flourished (“Flourish,” by the way is my word of the year. Tara’s is “Limitless”)?

I actually felt a bit confused and undone. Once Richard finished his examination of Brennan and turned off the lights, Brennan rolled over sleeping in his little bed. I just sat there, quiet in the dark room. I thought about whether or not we should actually leave Memphis. Knowing how close we came to a Chronic onset of GVHD in October and November, I thought about just staying. Why not? It was the original plan, after all. Christopher may be a bit p-o’ed, if he ever knew what was going on, but it is still cold-and -flu season. Maybe we should think through this?

I called Tara to talk about all of these things. Assuming this was just another full day us at the hospital, she had asked for the time when she could get in a full day at her surrogate law-office, the Adleman Firm. Like me she was simultaneously delighted and uncertain. We talked about all of the above, but we knew what we had to do.

When Brennan woke up, I told him the news. He rubbed his eyes, grinned at me with a brilliant smile and said “Really daddy!” He then reached up, hugged me and proceeded to get out of bed to put on his shoes. “Hold your horses there, cowboy,” I said trying to keep him at bay until we got full confirmation from the full team. Four hours later, it was official. This time, the Andy Griffith Show filled the wait with blissful ease.

We will head back for Memphis every two weeks. Brennan’s first anniversary of his 4th transplant is January 24. In February he will undergo an extremely comprehensive battery of biopsies and tests, with regard to his leukemia, his transplant and his GVHD. We hope that, from that point forward, and presuming that we avoid any more bugs, the check-ups will become less frequent.

The rest of the week was, as my friend Ben Hale described, a “joyful pain in the ****.” Not only had we just unpacked, we had collected three months worth of clutter, toys, etc. Thanksgiving, two birthdays, Christmas and general disorder can lay a foundation for quite the organizational trial. Also, when we arrived back at our little “Bluff House” in October (thanks again to the bountiful generosity of Steve and Carrie Hanlon). we realized we had actually left a number of things in Memphis this past summer. We were NOT going to leave our mess for our hosts this time around, so Tara and I devised a plan wherein Brennan, Christopher and I would leave over the weekend. She and Nat would stay for another week of school, allowing Nat to finish up a few projects, and properly say goodbye to his friends.

For the remainder of that week, Nat and Christopher stayed in school while Brennan drove around with me organizing this-and that, and Fed-Xing as much stuff home as we possibly could (FedX is VERY generous to families of St Jude’s).

I do not know what it is about leaving that place. But it is consistently and oddly emotional. I think the effort necessary to mentally prepare oneself for an experience that could continue indefinitely, and with even more potential life-changing consequences, is not a thing from which one breaks free easily. Therefore, having Brennan with me most of the time for the various errands served as my emotional crutch. For the rest of that week, he and I spent as much time in the car running here-and there than we did with Christopher on our way home that next weekend. But looking at him, contentedly riding around with me in the backseat, his simple presence offered me comfort; and as the days wore on, happiness.

One afternoon Brennan wanted to visit with Margie Lackie to pursue an art project or two, and possibly enjoy a few luxuries not otherwise available at “the Bluff.” I was making my final run to fully load up the car with its last big Fed-X run.

The sun was out that day. It was warm enough for me to pull out of the drive and call a silent-audible in my day’s schedule to go for a run before doing the delivery thing. Turning left from the Lackie’s street onto Poplar, I looked to my right and noticed a middle aged man and woman raking a vacant lot on the corner. Surrounding the piles of leaves was the bright green of fresh rye grass. The sun filtered through the limbs above, shining light on what I presumed to be a family making plans.

Sometime during Brennan’s second transplant (during his first tour of duty in Memphis), I recalled making this same turn and noticing this same yard. At that time, it was raining. A fire engine and ambulance remained out front, and at the center of the lot was a white brick house with the roof totally burned away. I think I even mentioned this in a Carepage, in some context or other, but I learned that the elderly couple in the house died in the fire early that morning two years ago.

I remember it well. The smell of wet singed wood was overwhelming, and stayed in the car for a while that day, for just having driven by the scene. At a time when I was so prone to self-pity and fear, It was one of life’s snapshots that forced my attention in the right direction. What memories from that place evaporated with the couple who perished? But what memories remained from those who survived and are yet to be established from those yet to imagine? On this day, the ashes were gone. Life was once again flourishing in the ground as the couple worked with intent and purpose.

The next day Brennan, Christopher and I made it to Atlanta. We told Tara and Nat goodbye in a Steak-and-Shake parking lot, before making the long rainy trip back. They played games and watched movies in the back. I listed to music and thought a lot. I could not put my finger on it, but the suddenness of this whole round-trip experience was significant in more ways than one.

We stopped for the night with Rob and Susie Adamson, giving the boys a very short break from the road and a night to play with some of their Atlanta cousins. Our hosts had a beautiful meal simmering for us when we got there. The weather we had driven through caught up with us, and we built a fire on the screened-in-porch to enjoy our company and our meal under-roof, embellished with the rainstorm around us. The children played inside.

We talked about everything, from the holiday, to the quick turn around at St. Jude to Patrick Chance when my phone “pinged.” It was a text from Stephen. Patrick was “unresponsive and would be checking into the hospital for the last time.”

Needless to say, without Tara there, the next handful of days were heavy. I kept Christopher out of school that Monday so that he could play with Brennan while I did my best to un-pack and get things organized around the house… again. Fully decked out in their WWII uniforms, complete with Easy Company helmets, they totally transformed our upstairs TV room into a Lego Normandy, albeit one modernized with Star-wars technology. I would unpack a box, quietly venture into their room and just watch them, praising the innocent integrity of it all, and waiting to hear from Stephen.

I got the text the next day at 2:10. We’ve lost a number of kids over the last few years, and I remember almost to the type of wallpaper, where I was and who I was with when I found out about it. To be honest, I don’t really know what I was doing this time. Piecing it all back together, I think I was in my office for a bit, because I remember texting Tara from my car as I left to get Brenny from Susan before picking Christopher up from school. The most I can recall is simply being dazed, with the inevitability of it all. Like the moment our car was struck form the side and I calmly thought “uh oh” as we rolled over, knowing that this was going to be a hard landing, for some reason the details remain a blur.

Finally picking up Brenny and backing out of the Rice’s driveway, I made the conscious decision that that I needed to stop and tell him right then. Otherwise,we would have been riding in silence with my mind racing.

On Sunday, after receiving the early heads-up from Stephen, I told both boys that Patrick was going into the hospital and that he was very sick. But, I did not talk about the inevitability of it all. Like Stephen and Erin managed Patrick’s status for so long with their kids, I just didn’t see the point. And, after all, he would not be the first kid they knew about. Just the closest.

Before putting the car into drive in the driveway, I stopped and turned to Brennan “Hey Brenny, I have some tough news.” He was fiddling with his I-Touch and looked up at me. “ Patrick died today at 2 0’clock.”

For a kid who has stoically listened to so much difficult news, he truly looked distraught. His eyes widened, and the corners of his little mouth tightened like he was going to cry. But a second later, he looked at me seriously and said, “really? I just saw him. Did you know he was going to die?”

“Brennan,” I said, “I always pray for miracles and try not to give up hope, ever, but we knew that he was not in remission and that his cancer could not get under control. Are you o.k?”

“I’m ok.” Again he said, “I just saw him. Is he going to have a funeral? If he does, I think I need to go.”

With that, we pretty much drove to the school in silence anyway. He in his, and me in mine. I wondered how Tara would tell Nat. I wondered how I would tell Christopher. I decided to wait. “Brenny,” I said, looking in the rear-view as he watched the town pass by through his window, “If you don’t mind, let’s not tell Christopher yet. I want to tell him by myself.” For the rest of the day, the kids played like they always do. Brennan didn’t say a thing.

The only thing missing was Nat, and the boys next door, who had been quarantined because of a bug; but once out of the car, the army helmets were donned and, and they were back to the Lego war, demonstrating a stalemate since the day before.

Brennan maintained his promised silence until the next morning when we all three talked. In speaking to Tara later that evening, she told me that Nat was clearly affected. He’s older, I guess, but after a few questions and lingering quiet thoughts of his own, he managed to focus on the rest of his last week in Memphis, playing with his buddies and enjoying his friends at school.

As we got ready for bed that night, Brennan was asleep early, as he always is these days. Getting Christopher’s pajamas on I told him the news. More emotional than Brennan he said, “I just saw him, he looked ok.” Relative to the kids they see at St. Jude on a regular basis, and on the scale of how Brennan has looked in the past, Patrick appeared very tired and certainly not his best, but not out of the ordinary in our book.

“You know daddy, I know more kids who have died than grown-ups,” he said as he slid into his little camo pajama pants.” Then he looked up at me and asked, “was he scared?”

“No,” I told him. “Its all part of the miracle of life. As a matter of fact, it had been a cold cloudy day and when he passed away a ray of sunshine lit up his face when he left for heaven.”

“So, you mean dying is a miracle just like being born?” he asked looking up at me again as I sat on the edge of his bed. I hugged him for answering the hard part of the question in a way that made my description appear much more insightful than I had ever intended or considered.

“I guess it is miracle, being born into heaven,” Christopher said slipping into the covers. We said our prayers together in his little bed and fell asleep, arm in arm.

The funeral this past weekend, was truly a celebration. As Stephen and Erin intended, and as Patrick determined, what I had dreaded for so many weeks was truly one of the most remarkable and memorable experiences I will ever have. Patrick’s sisters, Madison and Anna were astoundingly bright and steadfast. Certainly keen and passionate about the importance of what was happening in their lives, they served, in my humble opinion, as the benchmark for how we were all to behave and function in that household, or indeed, any household at any time.

Madison sang at Patrick’s funeral with the brilliance and fluent effort of the most innocent and beautiful songbird. And, whether rehearsing at the church, or interacting with the other kids at the house amongst all of the adults they all played as children do. “You know mom,” she told Erin Friday night before the funeral. “Kids handle things better than grown-ups.”

All five of us are back in Augusta now. And we give thanks, for Brennan, in his own spirited but fragile way, and Patrick in his. Two boys; Two paths, that criss-crossed with the most awesome serendipity; Two home comings; Two miracles. For these two boys, whether they play for us in this life, or the next, we Press On. And we thank God for their innocently powerful gifts.