My apologies for not getting to this earlier, but I wanted to extend my personal thanks - and forward a "Thank You" from the Kellers as well to all who participated in our prayer events over the past 2+ weeks. The Round-The-Clock (RTC) Prayer Vigils for Joey ended on Sunday at midnight. It was a fantastic success and we saw God do some truly amazing things!
For those who may not have been following closely, Joey Keller is a 9 year old little boy who is a friend of Daniel's. His parents Nick and Elizabeth have also become friends of ours over the past several months. Daniel and Joey met one another in our homeschool co-op and Andrea and Elizabeth knew one another through the boys' shared classes. Joey has been fighting a severely aggressive form of brain cancer for the past few years and has suffered multiple relapses (which typically drastically reduces the chances for successful recovery.) The odds of him beating it have been stated as less than 2%. When Daniel was diagnosed with leukemia back in January, our paths began to cross much more frequently with the Kellers at Riley Children's hospital and eventually Nick and I met and began to get acquainted as well. Over the past several months we've all gotten to know each other on a level that's difficult to describe, simply due to our shared journey: navigating the medical community, cancer, faith, and all the rest that comes with staring a parent's worst nightmare in the face, 24/7, for months (or in their case, years) at a time.
On the evening of Monday Sept. 24th, after having posted a fairly positive report of Joey's health and progress, Nick posted a single line that nearly stopped the hearts of all of us who follow his CaringBridge site with these words,
"Joey either had a stroke or seizure. Just took EMS to Riley. Going to get ct scan. Gotta go."
(You can read the history of journal entries here: http://www.caringbridge.org/visit/joeykeller)
I have set up to get notifications from the Kellers' CB site on my phone and in email, but somehow I missed this and a couple of follow-ups until the following morning when Andrea texted me about it. I hurriedly read through the past few hours' posts and was in tears at the situation that was being described. My heart always misses a couple of beats when the Kellers post a CB entry (not a great demonstration of faith there is it?) but this time just hit me like a truck. To the best of my knowledge, nobody, to this day, knows what actually happened. While sitting in the bathtub that evening, Joey became unresponsive. He was alert & moving, but acting very strangely and not responding to Nick's voice or actions. They immediately called EMS and rushed him to the hospital. His situation went downhill quickly and soon he was nearly catatonic, having seizures, and then stopped breathing altogether.
Every test they ran came up blank as far as causes. The cancer in his brain stem had been causing partial paralysis in various parts of his body recently, but an MRI & CT scan showed that it had not progressed at all. There was no sign of seizure activity in his EEG even though they were watching it happen. In short, they were all stumped but doing all they could to keep him alive. The doctors in the Pediatric Intensive Care Unit (PICU) told the Kellers they should expect the worst and to being making "preparations". At one point, they were even telling Nick and Elizabeth that they needed to start considering "pulling the plug" on Joey's life support. But Nick and Elizabeth refused to give in to this loss of hope and continued to pray and pray and pray. Their CB posts during this time convey the desperation during those dark hours.
Even with as much as Andrea & I have been through this past year with Daniel and the initial ups and downs of the doctors assessments of his "survivability", I know I cannot begin to imagine what the Kellers have been through. The doctors were regularly conferring (i.e. "guessing") about causes, offering widely varying theories and just as differing treatment ideas to the Kellers. All this was compounded for them by having gone days ... up to at least 5 at one point ... with virtually no sleep at all.
Early in that first week, I felt a burden within my own heart to rally praying people for Joey. Now let there be no mistake about my meaning here - there is an absolutely GINORMOUS team of people, literally from around the world, praying for Joey on a full-time basis. The vast majority of them have no clue who I am and many have known the Kellers better and longer than we have. But the burden I had was to see something "formal", something "organized" to get people plugged-into so that we could be sure (and the Kellers could also know) that there was actual Round-The-Clock prayer coverage for Joey ... every second of every day. I asked around to see whether something similar already existed or if there was any single point-of-contact for the veritable army of people around the world collectively known as "TEAM JOEY".
Though a few people had previously organized different events: T-shirt sales (yes, Team Joey even has their own T-shirts!! :), food ministries, and other things, I was unable to find anyone organizing prayer (though many, MANY were praying.)
A couple more days slipped by and then I remember very clearly hearing the Lord's voice telling me that nobody else was going to do this and it was MY JOB to get it done. "OK, OK, OK! ... I have no idea how to do this, but I'll do what I can." I was thinking that I really didn't know how to get in touch with people and wondering whether anyone would even care about what I was trying to organize since no more than a handful even knew me from Adam. Now God never actually said this, but at that point, there was definitely a kind of "If you build it, they will come" moment. :-) Corny, I know, but it at least gave me something with which to move forward.
The only place I knew to start was Facebook - that amazing source of communication, information, and (as often as not) GRIEF most of us have come to love and hate. However, it was clearly the best (and possibly the only) means of trying to connect with the hundreds - possibly thousands - of Team Joey members out there who had no idea who I was.
Now if you're following this blog of mine, at this point, the story is probably starting to connect for you with what you've seen here over the past couple weeks. Without going into a lot of detail, I setup a Facebook "event" to invite people to in order to pray for Joey. I divided up the first 30 hours or so (Sat evening through Sunday night) into 1/2 hr time slots and invited people to sign up for a specific slot. I posted notices on Facebook, in our CaringBridge site, and here in this blog and asked others to pass it on as well.
We didn't get them all filled in time, but we did pretty well as word began getting out and others reposted the info and invitation. Sunday morning I set up 5 more such "events" to get through Friday of that week (10/5). It was a clumsy way to do the sign-ups because people could only request what slots they wanted in posts & comments and then only Andrea & I had to manually edit the event info to add their names. It was a VERY busy weekend for the two of us and we scrambled all day Sat and Sunday to keep up with the requests. But it was a WONDERFUL burden to bear. The entire week filled up in just a few hours really, and we were simply in awe of watching God work as we saw the news spread and people respond. Something like 292 half-hour time slots were filled and many had multiple people in them. It was abundantly clear that this was God's work from the beginning, and my part was more like just pulling the cork out of the hole in the dike. He did the rest and we were more like bystanders as people clamored to get behind Joey, Nick, and Elizabeth in this organized prayer event.
On Tuesday (10/2), we (the Millers) were all at Riley for the start of Daniel's Maintenance Phase treatments and decided to try an impromptu visit to the PICU to see if we might possibly make contact with Nick and Elizabeth (they had no idea we were coming, and we weren't even sure we could FIND them, much less get into the ward.) But as grace would have it, we did find them, and although Daniel wasn't able to come in, Andrea & I were able to spend nearly an hour with them, discuss all that had been going on, and even pray with them. Their exhaustion was so evident that all of us were in tears during much of the visit. But it was such a blessing to connect with them, to see first hand what was happening and get a real "inside" report of what they'd been going through and what they needed.
Perhaps the most important thing we took away from that visit was that the prayer "war" we were fighting for Joey's life seemed to be far more spiritual than it was physical. This was an important revelation to us and, again, we understood that God had orchestrated the visit for a specific purpose He had in mind. (We actually probably shouldn't have been able to get into to see them as non-family members - but when we showed up, a series of "coincidental" events transpired to get us right in to see them and none of the staff even thought twice about our being there. Amazing!) But we needed to get the word out to the prayer team that they must focus on the spiritual aspects at least as much as the physical ones. The Kellers described a "darkness" and depression and negativity that permeated their room and the attitudes of most of the doctors when they came in. It was having a visible effect on Joey - even before he was conscious, and the words of Scripture in Eph 6:12 became a rallying point for us and we tried hard to communicate this to the others in the prayer team.
Not surprisingly, as we posted the information from the Kellers, many people resonated with it and several had even stated that they had been sensing the same thing in their prayer times. This kind of "resonance" and other such confirmations were a common experience during the setting up of the prayer vigils as well - I got several really appreciative notes from people who'd also been burdened with wanting to see something more organized set up to rally people around the Kellers in prayer. So again, we were given a little glimpse into God's work "behind the scenes" that had been going on for quite awhile. He just wanted someone to do something as simple as raise up a banner for the troops to rally behind and they came flocking. In this case, the banner consisted of a few Facebook events with titles about praying for Joey.
We saw people from all over the world and all walks of life - most, complete strangers to one another - come together for a common purpose under a common banner and FIGHT ... on their knees ... for Joey's life, health, and well-being.
As the days went by, we all waited on pins and needles for Nick's CaringBridge posts to hear how things were going. They were excruciatingly far between (for certainly understandable reasons), but we all kept praying anyway. And very quickly (though I know it seemed like an eternity to Nick and Eliz), we saw Joey move from a point where nearly everyone close to him thought it might really be "over" - to a nearly full recovery against all odds and a great deal of medical "advice". We saw an entire medical team astounded by his miraculous recovery. We saw dozens and dozens of people step up and volunteer for time slots as individuals, as couples, and as families - from late at night, to the wee hours of the morning, to commutes back and forth to work, to evening family times ... people filled up the slots and prayed and prayed and prayed. And most importantly, we saw Joey recover from about as close as anyone could come to death and then back away.
Near the end of that first week of the prayer vigil (week & 2 for the Kellers), Joey was doing much better, and by Thursday, he was finally off the ventilator and breathing on his own again ... but we wanted to see him HOME! Several people began to ask about continuing the vigil for another week - "praying him home" as it were. I'd been thinking about the same thing and was grateful for the confirmation that I should continue for another week. This time though, some friends pointed me to a website that would make the process MUCH easier on Andrea & I so that we didn't have to process all the requests manually; rather, people could sign-up themselves for the slots they wanted and see the results immediately (it's called SignUpGenius.com - it was free and really a big help for Andrea & I!)
The 2nd week of the vigil though, never completely filled up. That was disappointing, but it was also clear that we had moved though the worst of it and Joey was doing MUCH better and we were confident that God was working through all that prayer to bring Joey back out of this horrible ordeal. The fact that so many were willing to sacrifice of their time for a whole week - long enough to get Joey off the ventilator and back on the road to recovery - was amazing and enormously appreciated. Those that continued with us through the second week were, I believe, instrumental "participants" with God in getting Joey the next step - which was to return home. Now we do know that MANY others were praying as they often as they could but were unable to sign up for specific time slots for various reasons. We know also that MANY, MANY others pray for Joey regularly and either aren't Facebook subscribers or simply never got the word of our prayer vigil. And we know that God most certainly worked in many OTHER ways than these particular events.When Nick posted a new update on the following Tuesday (10/9) that Joey was intentionally "messing with" the nurses by holding his breath to set off the monitor alarms just to watch them all come running in the room, and then laughing mischievously at what he'd done, I laughed till I cried. It was such an incredible relief, such a JOY, to see Joey "back" among us (and as Daniel frequently noted to us, Joey's name is strikingly close to the word "Joy" and often pronounced in a way that is indistinguishable from it!) The doctors had told Nick and Eliz at one point that there was almost certainly irreversible brain damage after the seizures and that, even if he did recover, "it wouldn't be the same Joey". This of course was DEVASTATING for the Kellers to hear and all of us as well. But Joey's journey has been an exercise in faith from beginning to end, and once again, they refused to accept that prognosis and prayed all the harder. Seeing Nick's post on Tuesday 10/9 was nothing short of miraculous for all of us who had been watching them. God didn't really seem to care about the doctors' prognostications and seemed to delight in demonstrating to us all that medical "odds" and the wisdom of Man mean nothing to Him.
I should note here that this is not to say that we are not all immensely appreciative of modern medicine, doctors, and the technology available to us. We certainly are. Both my wife and son have been direct beneficiaries (and myself secondarily thereby) of the astounding advancement of this technology in recent years as they both go through chemotherapy as well. In this case however, I have been pretty critical of some of the things that the Kellers' medical team said and did ... some really stupid things in my opinion ... things that should be criticized and from which several lessons should be learned. But this is not to impugn medicine or the medical community as a whole and I want to make that clear. Nevertheless, as wonderful as this technology is, it is nothing in comparison with the power, and will of God our Father and Creator. And that is perhaps the greatest lesson any of us can take from the events of these past few weeks.
Joey was released from Riley the following day (Thurs 10/11). Though he's still on a feeding tube due to difficulty swallowing, he's been breathing fine and slowly regaining his memory (a great deal of which was lost during the worst of the ordeal in the hospital.) Most of this seems to be confined to fairly short-term memory, but in the picture below, Joey is instructing some family members (by memory) how to rebuild a rather large and complex LEGO set of his. God is good. :)
If you're still with me - thanks for reading. I know it's been a long entry, but I wanted to capture a few of the amazing details of these past two weeks - at least from our perspective - and bear witness to all that we've been privileged to watch God accomplish. I know it's been very beneficial for our family as well! After 9 months of being pretty focused on ourselves with all that Daniel has been going through, it's been good to get the focus off of us and onto helping and serving someone else. And few others are as near and dear to our hearts and our own journey as the Kellers are. I must confess that we've never been very good at praying together as a family - despite many attempts to make this work over the years. Yet the past two weeks have been a wonderful way for us to rally together over an important cause at least once each day.
We've watched Daniel grow in his own prayer life by leaps and bounds through this and establish a special kind of "prayer connection" with Joey that only another cancer survivor can really have. One of our prayers throughout this ordeal has been that the lessons God has been teaching ALL of us through this time, would not be lost. We pray this for Kellers, for ourselves, for our prayer team, and for all of TEAM JOEY moving forward.
Thank you for your prayers. Thank you for your kind words and encouragement to us. And thank you for your willingness to give - whether thoughts, time, or that special part of your heart that goes out to others with true intercessory prayer. We especially thank those of you who have been our own family's regular supporters and intercessors and may not have known the Kellers previously, yet joined forces with us to pray for Joey. Thanks also for putting up with my continual pestering for more prayer for them! And as always, we thank you for all you've done in praying for and following our story as well.
ONE FINAL NOTE:
Though the Round-The-Clock Prayer Vigils have ended, we have established a more or less permanent page for those praying for Joey. We'll use this to help get word out for specific prayer requests, share our thoughts, info, experiences, and "praise reports" in interceding for the Kellers, and post any future events if the need arises. So please be sure to "like" this page if you'd like to continue with us or just follow what's happening with the prayer team. https://www.facebook.com/PrayingForJoeyk
A similar group was formed by friends of ours for Daniel here: https://www.facebook.com/groups/305553332819553
And you are always welcome to join either our or the Kellers' CaringBridge sites here: http://www.caringbridge.org/visit/joeykeller
and here: http://www.caringbridge.org/visit/danieljmiller
Grace and Peace in Jesus,
- Tim -
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