Press on to reach the end of the race and receive the heavenly prize for which God, through Christ Jesus, is calling us.

The verse from Philippians sums it all up for the Press On Fund mission.   The “race” itself is self-evident.  Like hundreds of thousands of families throughout the United States (and the world) the Simkins and Chance families have fought, and continue to fight, the race against childhood cancer, specifically neuroblastoma and AML.   And today, volunteers, donors, friends and family continue to develop tools with which the Press On Fund can compete in this Race.

Reid Memorial Presbyterian Church in Augusta is one such institution which has embraced the cause, and acknowledged the gravity of this fund’s effort and achievements to date with the most appropriate of Fundraising plans: the “Reid Memorial 5K/One-Mile Fun Run to help raise funds for researching childhood cancer.”

“We are so proud and excited,” says event coordinator and Reid member Sterling Ivey.   “In mid-January we had raised over $5,000, and this was even prior to having any runners register,” she noted.  The race itself is Saturday February 11.  Registration begins at 8 am.  Participants can register up through the day of the race.   The proceeds for this inaugural event go directly to Press On and to Reid Memorial Church’s Children’s Ministries.

Brennan Simkins will be in the “Pace Car” at the start of the race, and his father and brothers will run in both his name and in the name of Patrick Chance.   “This is our first organized event since Patrick’s passing and will be a very meaningful and emotional occasion,” says Press On co-chairman and father of Brennan, Turner SImkins.

“Pardon the pun, but the running-thing has really taken off for Press On,” says SImkins.    “People are running marathons, triathlons and organizing events like this all around the country for Press On,” he says.   “A lot of people have run the various national Leukemia/Lymphoma Society runs in Brennan’s name, which has been a terrific honor.   But now most of these people who run again realize they can raise the funds directly for Press On, where 100% of the proceeds are invested in Cures for to the two of the most deadly pediatric cancers, neuroblastoma and AML, thanks to CURE’s generous management of this fund.”

“There are a lot of good folks out there,” he says.  “We are proud to Press On in our mission as they Press On for it.”

For more information about the Reid Memorial event, registration and donation information is available at  Reid Memorial

“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.

NTS

This is our final update. Thank your for walking with us.
Fondly, Stephen and Erin

Thank you to everyone who has supported us through these last five and a half years and especially now. We are very, very grateful. We love you.

When thinking about what I wanted to say today it became clear to me that I wanted to speak directly to all of the children here today who loved Patrick.

When Patrick was only three he became very ill, and we later learned that he had cancer. He did nothing wrong to get cancer. It was a random event. Importantly, neither he nor Erin nor I ever stewed over the question “why him?” We asked God the question of course, but we as a family never stopped to dwell upon the unfairness of it all. Instead, very early on we made the decision to transform this terrible event in our lives into something meaningful and positive. We were able to do this for two reasons.

First, we fought. He fought. We all fought through the expected things like side effects from all of the medicines Patrick had to take; we fought through bad news; we fought through the fear that good news would only last a little while. But we also fought unexpected battles. Things would pop up and we had to refocus on new challenges continually. We fought day-to-day tactical battles, and we also fought strategic wars at the scientific and political levels. We brought together all of the available resources we had to take good care of Patrick. We always maintained hope that Patrick would survive, but we came to understand that the quality and meaning of human life are not measured in years – they are measured in moments.

Patrick did such a wonderful job of grouping his days into work days and play days. Usually he would receive treatment over a week, suffer side effects for a week, then he would have a good week or two before he had to endure another course of treatment. When it was time to play, Patrick played and played hard. He loved a good time.

When its time for you to take care of your duties – whether they be homework, chores, routine medical care, or the fight for your own life – please tend to your duties without complaint, but also keep an eye on the fun stuff just ahead. The fun things always come back, and when they do, please savor every good moment. Be aware of them and be grateful for them. Take time to experience nature, and sappreciate the beauty of God’s creation. Get on the water and in the woods. That’s where Patrick is. Go visit him. We could even go together.

You will have your challenges in life, too. Some of you might get sick one day. Some of you might be leaders in your communities. Some of you might be performers or athletes or doctors. I know you will all have enriching educational challenges. Whatever the source of your challenges in life, you must meet them head on with a determined will. You will need to focus, prioritize, sacrifice, and rely upon your support systems like your parents, friends, teachers, counselors, pastors, rabbis, and coaches to do what you need to do. Then just do it.

I hope that Patrick’s bravery will empower you to fight when you need to fight. And I don’t mean fight like a boxer. I mean you must press on when you are faced with meaningful challenges in your lives. Always believe you will succeed. Always focus on the ultimate goal you are trying to reach and press on until you get there. If Patrick can stare down cancer, then I know in my heart that you can stare down your challengers too.

The other reason we were able to transform Patrick’s disease into something meaningful and positive is the love that he inspired throughout our community of friends and family. To say that he inspired this amazing outpouring of support appears to attribute the credit for that phenomenon to him. Not so. The credit goes to everyone in this church, everyone who could not be here today but who wishes they were. The credit goes to everyone in this neighborhood and throughout the country and throughout the world who showed us love. The credit goes to YOU. When we needed love and support – big doses of it – you came through. You saved us all.

You have played for Patrick, pedaled for Patrick, and prayed for Patrick. A lot of you did this on your own. All of you had the support of your parents and teachers. We as parents know that when children are raised in a certain environment they tend to replicate that environment going forward in their lives.

With that in mind, Patrick’s family asks only one thing of you, but it’s a big and important request. You have witnessed so many members of our community love us. As you go forward in life and this day fades from your memories, please do not forget that you have been challenged to love. Please continue to behave as your parents have taught you through their examples. Do what they have done. Keep doing what you have done. Love each other.

As you continue to pay love forward, please know and trust that everyone in this church and many, many more people love you, too. If something happens to you or your family, you will not be alone. As you have seen, love is not just a feeling. It is a way of life. It is something that we all do. Please take from this experience in your life that actively loving each other will turn even the worst things into beautiful things.

Finally, don’t be sad. It’s OK to miss Patrick and to cry. But be proud. Be proud of him for being so brave and be proud of yourselves for being a wonderful friend to him.

If Patrick’s mommy and I can ever help you in any way, please come talk to us. If you want to talk about Patrick or if you want to talk about your own challenges in life, just talk to us. We will always have time for you. You are always welcome in our home. You see, we love you all the way to Patrick’s Lego castle in heaven and back.

Fondly, Stephen and Erin

Patrick Roberts Chance

January 9, 2003 – January 9, 2012

Patrick passed away peacefully today immediately after a ray of sunshine broke through the clouds and lit up his room. He was surrounded by family and friends. Erin read Madison’s birthday letter to him and then he finally won his battle. In addition to the legacy of love we spoke of last night, he will give two strangers the ability to see. How wonderful that his eyes will continue to behold God’s creation.

We will receive visitors at Patterson’s Funeral Home in Midtown on Friday. We need to confirm those details. His celebration service will be at 2:00 on Saturday at Glenn Memorial UMC on the campus of Emory University. Peace be with you.

Love, Stephen, Erin, Madison, and Anna

In just a little while Patrick will celebrate his ninth birthday surrounded by family and adult friends, nurses and doctors in the comforting surroundings of CHOA where this journey began. There will be no cake or plastic toys or electronic gadgets or even Legos. The only gifts will be boundless love and peace. The girls are working on letters to read to him. He can hear us but can only utter a few words at a time. His cure is very near in time. He looks beautiful. He told us tonight that he is not scared. We are coping by focusing on the imminent cessation of pain, nausea, itching, finger sticks, port accesses, and nosebleeds as well as the anticipated victory over neuroblastoma. He will continue to live in our hearts and minds forever. His legacy will be love. The many children in our lives will perpetuate this way of life for generations. They have grown up in a community of love that has intensified over the last five and a half years. They are witnesses who will testify to what they have seen. They will love their children with more focus and treat each other with more kindness because you have shown them how.

We anticipate that he will pass away this week. It could be minutes, hours, or days away – but not weeks. We will stay in the hospital until he is free. We will have his body cremated. We will sprinkle some of his ashes in Lake Glenville where Norton Falls enters the lake because that is his favorite place to fish and we can see the water flow into the lake from our home. We plan to visit with you at Patterson’s Funeral Home one of the next two Fridays, then we will celebrate his life the next day at Glenn Memorial United Methodist Church near our home. Our spiritual counselors from Haygood will officiate, but we need the capacity of Glenn. We prefer a lighthearted, somewhat casual service that celebrates our son. Details will follow. We look forward to the hugs.

Stephen and Erin

“Gee… tough decision… I could make a $2,000 donation to Press On, or I can rent a great place for our family vacation at the beach or mountains this summer?”

Let’s face it, family always comes first.  It does in our home, and we expect it to in yours.  Consequently, dilemmas like this are usually settled with the comfort of knowing that you are doing the right thing for your spouse and children.  We can find easier ways to help to cause.. right?

But how ‘bout these apples (!!) …    Press On and Geronimo.com Vacation Rentals for Charity have teamed-up to create “OneSpareWeek” (http://Presson.OneSpareWeek.com)   where currently (as of October, 2011) over $7.3 million of vacations are already posted and those can benefit Press-On.  They hope to have over $50 million in available vacations donated by middle of 2012, so check back often as new properties are posted!

Rent your vacation at OneSpareWeek and half or all of the rent will be directed to Press On.   Properties are already posted from FL, SC, CA, CO and even Turks and Caicos!

There is no dilemma.  Simply book any vacation at http://Presson.OneSpareWeek.com, and you will have helped make a significant contribution to Press On.  In addition, we’re looking for generous business owners to provide us with added incentive for owners and for renters, so if you can donate a product or service as an incentive (example- “Rent any vacation home on presson.OneSpareWeek.com and get dinner for two at  Joe’s Steak House”)  Your business will get great exposure on our OneSpareWeek website if you give us some incentive gifts. See website for details.

And, of course, this deal goes both ways.  If you are a property owner and have a special vacation home, hunting lodge, fishing camp, etc., please take 10 minutes to post your home and donate one spare week at http://Presson.OneSpareWeek.com. Your “Spare Week” can mean a big difference for us.  This is an easy way to make a difference in helping Press On fund a cure for both AML and neuroblastoma.

With our OneSpareWeek website, we are hoping to establish an effective and sustainable means of funding Press On, without having to shake-down our friends over, over and over.  This can be a big deal, and can be very meaningful for our capacity to make meaningful investments for new treatments, trials, protocols and drugs.

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posted on December 17, 2011

“Through the years we all will be together If the fates allow
and hang a shining star upon the highest bow, oh yeah,
And have yourself a merry little Christmas now”
Lyrics from “Have Yourself a Merry Little Christmas,”
- from the recollected perspective of CHristmas 2010

Monday, December 5, Brennan and I spent virtually the entire day at the hospital clinic. It was bone chilling cold outside; cold, windy and rainy, three of the primary ingredients strictly excluded from his daily lifestyle prescription. When it is my turn to be accompany this little man, days like this are maddening. Fortunately, he is feeling better, and therefore impatient and eager enough to pursue fun things unattainable on days like this.

In addition to the overshadowing lifestyle restrictions associated with his current situation, he recently broke his foot and is now dependent upon a protective boot and crutches (Don’t know what happened to cause the fracture. He is still suffering from osteopenia from the toxic cancer treatments and his bones are brittle as egg shells. It just broke). Other than just being his friend, doing one’s best to keep his spirits up, there are few tools in the fun-box. Of course we have games, cards, videos, art projects, etc.; but having lived virtually the last three years in a state of such amenities, boredom does take its toll.

In addition to the imperative condition Tara and I maintain for the entire family remaining together at all costs, on days like this, the Brothers come in real handy. Most days we eagerly await the mini-outing associated with picking the brothers up from school. After all, it is a change of scenery. So that Monday, we left the St. Jude campus just in time to make the carpool line. Nat and Christopher have thankfully plugged back into this welcoming and understanding school community with ease strong composure. Of course we chalk this up to the simple nature of the Montessori culture. Finding ourselves back in Memphis unexpectedly with an unknown time-table, the Maria Montessori school is, for the third time, a Godsend.

Leaving the St. Jude for carpool, Brennan was in the back seat laughing at the somewhat off-color country song “Red-Solo-Cup,” which is fortunately too quirkily sophisticated for him to truly understand. Relishing his smile in the rear-view mirror, I was relieved to find his mood spiking in a positive direction. But I also noticed that we were passing the Church of St. Mary, located just a few blocks from the hospital campus. Considering the change in his demeanor, I took a chance and asked him if it would be ok for us to attend the 5:30pm service that day. With a shrug of his little shoulders, he smiled and said, “sure.”

Cresting the Mud Island Bridge, the Mississippi River consumes the horizon. That day it was swirling downstream at more than full tempo. Back in October, it was as low as I have ever seen it, pocked with sandbars and bulkheads that had yet to reveal themselves during our three years here. But if these three years have proven anything, it is abundantly clear that things do change.

Turning into the school lot, the Brothers rushed through the rain from the cover of the little yellow school house; hunched over, splashing through puddles and quickly closing the door. “Brrrrr,” they both groaned, shaking their wet heads. Before I could rhetorically ask “How was school today?”, Brennan announced, “guess what guys, we are going to church this afternoon.” To my pleasant surprise, there was no debate.

We had missed church Sunday, the day before. Additionally, I had been feeling a little rattled and anxious for several days. For weeks, actually, Tara and I had been eager to begin the process of distilling down the layers of medical opinions and data regarding Brennan’s status to a digestible scope which would hopefully allow us sufficient comfort to schedule our return home. Unfortunately, the threat of his last setback was menacing enough to keep our camp intact here in Memphis for a while longer. And there is still much unknown.

Brennan’s status remained clearly unclear, which was taking its toll on our nerves. But this also happened to be the first day of what we knew to be a critical and potentially decisive week for our dear friends and partners in Press On, Stephen and Erin Chance, who were anxiously awaiting the results for Patrick’s scans at Emory in Atlanta. Outside of the St. Jude community, they have been the only family we are close to who have tasted the steely sharpness of the brink, which establishes in one’s being a very odd frequency of sense and presentiment. The Chances are always heavy on our minds, as we try to remain dialed into Patrick’s status. That day, the signal was especially strong.

Working all day in her makeshift office near our squatter’s residence in South Bluff, Tara sounded relieved and grateful for the call to join us at St. Mary’s. She had had a long day away from everyone, while also affected with a funny feeling similar to mine. She said she would meet us there.

By 5:30 these days, it is dark in Memphis. Leaving our car, our collars were held tight. The three boys and I huddled through the windy drizzle from the parking lot to the church. Brennan, struggling a little bit on his crutches up the wet walkway asked me carry him inside. I picked him up, and clutching my neck, he, the boys and I, quietly entered the beautiful sanctuary which was unexpectedly dark and empty. We were the only one’s there. A single chandelier lighted the alter and a single table at its base. On the table were a wreath and four standard Advent candles. Two were lit.

Were it not for the candles, the boys would have been convinced that a service was not to take place; but from wings behind the altar emerged Deacon Ernie. Ernie had been one with whom we often found honest compassion and friendship during the rough winters of 2010 and 2011. Serving as a eucharistic minister for St. Jude, he made the rounds at least once a week and always stayed to talk. He would deliver encouragement to Brennan, and brought the understanding and kindness of an old friend to me and Tara.

He walked over to the alter and placed a bookmark on the day’s readings when he looked up tp realize that he knew the only four people in attendance so far; and not previously knowing that we were back in Memphis, he cheerfully walked to over to greet us. Reaching his hand out to the boys, Brennan removed his wool ski cap, revealing his new thick head of curly hair. Delight and surprise illuminated from his smile. With this greeting, in walked Tara, along with two other couples for the quiet afternoon service. He gave Tara and long hug, then walked to his station to begin the service, which commenced with a refreshing feeling of impending significance.

The consequential part did not stop with Ernie. While it was he who conducted the ceremony on this one day we happened to drop in, the scripture reading for that day grabbed us hard. It was the story of the man presented to Christ by his friends for healing. In the story, these men were so determined to cure their friend that, for their cause, they resorted to the removal of a roof and ceiling in order to lower the man down to Jesus on a stretcher. There were throngs of others there seeking the attention of Jesus, blocking all conventional entrances to the house.

Listening to Ernie, I held Brennan and reached over to hold Tara’s hand. Ernie stepped toward his small congregation and spoke about what makes this “miracle” story different from the rest.

The common thread of all miracles is “faith,” on behalf of the one to be healed or saved, and “love,” on behalf of the healer. Regardless of whether one puts stock in scripture or not, these two commonalties are universal in their premise. But, we were also reminded that there is often a third element; that of “friendship,” as exemplified by the men who went to extraordinary trouble to deliver their friend to the only person in whom they found hope for his cure. They were so determined to help that they ripped the roof off of a house. The condensed version is this: a soul, faithful because of love and friendship. Whether in immediate desperation, or plodding along the the more typical, but always terminal path of life, is this not the story?

“All good things come in threes,” so they say. It is the “magic number,” and of course the religious and spiritual connotations of the number are enough for their own weekly blog. The number “three” has been bouncing off the walls lately, particularly this holiday season. And ending this third week of Advent, we still find our faith tested, bolstered by the loving intent of our caregivers, while praying intensely for so many who seek healing; both for our friends and for our own family.

What has now turned into our third tour of duty in Memphis delivered just weeks ago our third Thanksgiving celebration here. This year’s was quite different, marking the first in three years that all three of our children were seated around the table together, with us.

Brennan even ate his meal. And, I am delighted to report, he is still eating. This one seemingly pedestrian function has been the most noteworthy of barometers, indicating the most remarkable sign of improvement since returning here in October.

He is here because of Graph Versus host Disease (GVHD). Leaving MCG for St. Jude, the symptoms were clear; but we were not aware that it had progressed to “stage 4” GVHD of the stomach and digestive tracts. Of course this whole mess was all triggered by a common cold, which he caught along with the rest of Augusta in mid-October.

While his immature immune system (keeping in mind an immune system which was and remains suppressed with immune suppressant medications and steroids) did respond to the cold virus, the simultaneously went a little haywire. With the immune cells (“little soldiers” if you will) mobilized and armed to fight the viral bug were not programmed to stop their attack (The “fall back!” command has yet to be programmed into their minds.). Keep in mind that one-half of Brennan’s immune system is a total mismatch (in a haplo-transplant situation, or parental transplant, only one-half of the parent’s immune system will match the child’s (right? It takes two to tango). Therefore, the “foreign” soldiers who were on the prowl for the virus, simply kept on the prowl, and began attacking anything that crossed their path. Kidneys, Liver, stomach, intestines, skin… his entire body was seen as foreign and, hence, became prey to his own immune system. When we arrived in Memphis, it was frightening.

The response to a situation like this is to further repress the immune system, effectively shutting it down. While he was already taking the daily medications mentioned above, he had actually been significantly weened from most of them and was looking at the first of 2012 as a possible milestone for freedoms. But sooner or later he was going to get tested, Unfortunately, it came sooner than later, and the test was a bit stronger than one would have hoped. So here he is, all dosed up and no place to go. Instead of a moderate flare-up with the immune system, we ended up with a forest fire.

The suppression involves effectively throwing a wet blanket over everything (two immune suppressant drugs and steroids, plus all of the necessary antibiotics, anti-fungals and anti-virals necessary to provide supplemental protection until he is once again weened.). Once under control, as it now seems to be, the system removed thread-by-thread until we are absolutely certain that there are no flare-ups. Fortunately, the process is very deliberate; and, therefore, very slow.

Each flare-up from this point forward can foster what us called a Chronic GVHD, which is the leading cause of non-relapse morbidity in transplant patients. This potentially terminal form of the disease transpires over time as the naked and unprotected immune system remains stifled by constant immune suppressant medication, which must delivered for the whole purpose of preventing the victim of burning up inside-out. It is a losing game that we wish not to play. In October, Brennan stepped out onto the court for a few sets, but fortunately our team here called the match. Dr. Leung tells us that, for the foreseeable future, Brennan CANNOT get another virus of any sort, as he is currently too revved up inside not to avoid chronic GVHD.

But, again, he is feeling much better. He is eating for the first time in three years. He is active and impatient (all good signs). Going for rides in the car has become our primary form of non-home-bound recreation, giving him a change of scenery from the hospital and the house. He and the brothers are constantly jabbing each other in the back seat with a new game called “punch bug,” wherein the observance of a Volkswagen Bug delivers both authorization and consent to hit your neighbor in the arm (Fortunately, Brennan does most of the hitting, and is never the recipient of much more than a tap on the arm).

He is being weaned from the drugs slowly but surely, and time will tell. But the walls of his bubble are as thick as they have every been. With stage 4 GVHD, we have become even more vigilant about what he can and cannot do. While most of our friends recognize the fragile nature, and hence the gravity of infections, we often find ourselves having to justify why we are not able to participate in certain social and recreational functions. But Brennan’s exposure to anything even remotely dirty is highly likely to trigger an immune response that can trigger GVHD. This qualification takes into account pretty much the outdoors, public places, the sun; effectively the world which exists outside of the imaginary bubble.

His system is so hyper-suppressed right now that his clinic visits will remain at least weekly for the foreseeable future. And, despite the encouraging signs, he is simply too medicine and hospital dependent, and too fragile, for us to return home for good. The stakes are just too high.

So here we are, and here will stay until we are otherwise comfortable to return home for good. But we are positive and still have faith, bolstered both by the love and care he receives here as well as the friendships which abound everywhere. But regardless of where we are, or where we end up, we embrace these three common principles, for Brennan’s sake and for the sake of his friends and all who’s hope is thusly conceived.

I think most of Brennan’s Carepage readers now know that our apprehensiveness with regard to Patrick’s scans, for which we prayed at church on that cold and wet Monday evening, was explicated when we learned the following Thursday that his cancer has metastasized to his liver and that there are no more treatment options. Our friend, who reached through the ceiling for Brennan, delivering love and hope with tethers of his own tenacity and faith, defines for us the third element which has kept our spirits buoyed and our own determination strong.

I have to admit, with so many miraculous examples of friendship delivered into our lives, that gratitude often feels hollow when offered for an innocent child who suffers. But it is the only thing with which we can remain connected. It represents the very fiber of the ropes which connect each of us to those strive to help, and from those whose friendship delivers our own broken souls a place of hope and restoration.

I heard about Patrick not in Memphis, but while on a business trip in Hall County Georgia. It was a trip that started the day after our lesson at St, Mary’s. And it was a trip that began with anxiety on my part for leaving Brennan and the boys for the first time in a while (for those of you who have not read the Carepage entry regarding this difficult message, please note that Erin and Stephen Chance are strongly urging all to please refrain from discussing this with your younger children. They are carefully attempting to manage what their children, particularly, Patrick, hear from others. They are desperately trying to ensure that Patrick’s last months and weeks are filled with hope and joy. We therefore, echo their humble request to remain mindful of what you say, and possibly hear, on this burdensome subject).

I was in a meeting when Stephen called to tell me the news. Sounding as strong as a father can under the grip of such suffocating emotion, he triggered my own recollection of how a father feels when he is told there is nothing more to do for their child (All I can say is that it is worse than you can imagine.). I floundered my way through the rest of the day with single-minded intent to just get my work done, return to Memphis and hug my family.

Boarding the Marta train on Atlanta’s far North side for the airport, I meandered my way entirely through the entire length of the city. Neighborhoods and commercial centers flickered by as we made our way to the airport. At each stop, people boarded and un-boarded through this transitory place, leaving places or seeking new ones. The common detached look of people traveling renders an emotionless veil, concealing emotion. I too looked about stone-faced. Inside, I was crying.

A man in front of me stood, offering his chair for an elderly woman, burdened with too many bags for someone her size. He sat next to me, I turned my head away from the dilapidated smell of moth balls and old clothes. More than anyone onboard, he looked displayed an expression. He seemed sad. I wondered if or for whom he prayed. Was it himself or someone else? Was he alone? Was his heart open to to the love others… to God? He was clearly a thoughtful individual by virtue of his exchange with the lady. Could he be helped from recognition for this courtesy?

I thought, but I failed to reach out. As I turned my head away toward the window, the intercom announced our arrival at Five-Points. We stopped and he stood to leave. A passing train stopped at the platform across from ours. The darkness of the underground station was broken by the lighted windows of the adjacent train. It was filled with school children Brennan and Patrick’s age, dressed in their blue khaki pants and skirts with matching white shirts. A group of girls sat across from one another. Someone spoke and they simultaneously leaned forward with delight and laughter. Behind them the boys all stood in a group. A pair of skinny arms stretched and struggled for the hanging hand straps. One pushed another down into a seat. The victim looked up at his adversary with surprise when a friend intervened. He was clearly defending his buddy when our train lurched forward and departed the station. Thus concluding my silent cinema.

It was a scene I could taste from my own childhood, but from which I could not have felt more detached on that day. What have our children missed because of their disease? What do these children miss, or misunderstand, by virtue of their presumed immunity? What was the man feeling that could not be remedied? The answer is “nothing.”

Our train reached its destination, allowing me to focus on the ordinary tasks of making my flight on time. Leaving on schedule, I noticed that we were taking-off in an eastwardly direction, opposite of Memphis. It was minutes before sunset. The city’s street lights were on, but one could still make out the buildings and rooftops below. Turning northward, I looked down to see a telltale serpentine row of lights, representing the signature outline of Olmsted’s parks along Ponce de Leon Ave. This was the Druid Hills neighborhood, where the Chance family was presumably sitting down for dinner, probably, at that very minute, with friends stopping in for support. Looking down, I made out the Druid Hills Golf Course and Emory University and, from there traced my way up N. Decatur Road to the Chance’s House.

The jetliner turned just so and my window miraculously framed their home, with Patrick’s tree house, toys and balls of every variety presumably still where I saw them last, darkened with imminent nightfall but anticipating another day for play. Staring straight down at that house, I focused for as long as it remained in view, prying the rafters with my prayers for a family and their courageous little boy who’s example is forever bound to whatever faith we can and will ever conjure.

We celebrate their family this Christmas. And, God willing, we will celebrate with ours at home for the first time since 2008, among old friends from Augusta while bolstered by the strong friendships that remain in Memphis until we return (If things go as planned, we will be home for over a week, thanks to an approved leave of absence and the effective collaboration of our team at St. Jude and MCG.).

Because of friends, we gratefully receive the gift of Christmas this year under our own roof. They honor and humble us with the gift of their love, therefore binding us for all time to the love of God. Things change. This does not.

NTS

As I write this, Stephen and Patrick are in Orlando with our dear friends, Scott and Cannon. They are staying at the Nickelodeon Hotel, and the boys were thrilled about getting slimed. They are visiting Legoland today, and to say that Patrick is excited is a vast understatement! Tomorrow, they will fish the St. John’s River and then cheer the Dawgs onto an SEC Championship victory (a tall order, but you gotta believe!). Patrick has been begging to go fishing since missing his annual fall fishing trip in October. I am so happy he feels well enough to enjoy this opportunity!!

Patrick’s treatment in November went well with only a few bumps in the road. He experienced a colossal headache coupled with nausea and an impressive nosebleed that landed us an extra night in the hospital. CT and MRI showed no brain bleeds (a known side effect of his treatment) or other reasons for concern, and we have chalked up the incident to a severe migraine. It was very stressful to see him in so much pain and wait on the scan results, but luckily everything resolved over the weekend. We are hoping that the dosage of his next round will not be affected by this event.

So, next week is scan week… My stomach is already in knots. He will have various tests culminating in an MIBG Wednesday morning. Please pray that the scans will show that his disease is stable or improved. If his scans are good, he will be admitted the following Monday for another round of treatment here in Atlanta. It has been so nice to stay here for treatment despite our love for the CHOP team. The doctors and nurses here at CHOA have been equally wonderful, and it is lovely to be able to see each other during the treatment week. We even managed to celebrate what Anna called my 27th birthday in the hospital cafeteria as a family during treatment week. I wouldn’t have traded that humble dinner together for the fanciest celebration in the world!

I will post scan results Wednesday… hopefully good news!

Erin

Tickets now on sale!!!