Sunday, December 30, 2012

Eli Christmas Eve at Betts' house, not feeling well.
Today, December 30, 2012, marks one year since the sky fell. The following is an account of that day and most of the next - the last two days of 2011. We are thankful for God’s blessings on earth of family and friends, his church and the avenue of prayer. But, mostly we are thankful for his promise of a safe haven, a home untouchable by the evils of this earth or any realm. Thank you for your support and prayer this year, we couldn’t do it without you. If you have any memory of when you found out about Eli, I would love to read it. Most of these pictures you may have seen, but they fit the story better. It's a long one.  
 It was just before 1400 hours when the phone rang. I was still upstairs after having put my three-year-old down for a nap trying to make myself do something productive. I cracked the window so I could hear the girls outside on the trampoline on the warm December day and began chipping away at the laundry mountain that was a fixture in our bedroom floor. Housework overwhelmed me easily during the last few weeks, and I had given up on the laundry to the point where I only washed, dried and put it all in one pile in our floor. Then we would just dig for whatever we needed when we needed it. I couldn’t get ahead of it and had no help in getting ahead of it. It just snowballed into this mountain that was used at bedtime as a soft landing spot for the kids chasing each other or a great hiding place for hide-and-go-seek. I didn’t care if they didn’t care, which they only did when I asked them to dig for their own underwear or socks or school clothes. But, when it came time to help me fold and put away, suddenly the mountain-view wasn’t so bad again.
The day before his first MRI he finally felt
well enough to ride the go-kart that Santa
brought at lesat once.
On this day, December 30, 2011, at 1330 hours, I needed a productive distraction, so I lazily picked a garment from the top of the pile and placed it in the proper stack on the bed. Vic, who was off work for the week between Christmas and New Year’s, and our seven-year-old son, Eli, left the house about 1000 hours headed to the emergency room at Huntsville Hospital because Eli had begun squinting one eye at the television. That seems like a mild symptom, but added to other subtle symptoms over the past many weeks it made my mother’s heart anxious this day. It’s hard to say when his symptoms began because it was the flu season and as a family of four kids coughs, headaches, puke, body aches just don’t raise a red flag. Unless there is a fever, I usually just wait it out. But, by the time I wrote the following post on Facebook December 5, 2011, I had already been to the doctor twice trying to figure out what was wrong with Eli: “Suggestions: Eli has been complaining (crying and writhing at times) about neck pain, his side hurting, arm hurting, ear pulsating, and tailbone hurting for over a week now. He has had a juicy cough, headache on and off, and says he has blurry vision. He has only run a small fever on Sunday that I've noticed. I took him to the doc last Wednesday, couldn't find anything. Took him to Urgent Care yesterday, they x-rayed his neck, tested for strep and flu, found nothing. Did no blood work, but said it was viral, gave us Tylenol w/codeine and said he would get over it. Any suggestions on what I can ask the doc about when I see him again, which I know I will, or has anyone had anything like this. I don't know what to do for him, I'm lost.” I was lost, and my heart knew it but my brain couldn’t make sense of it.
The weeks passed, and Eli continued to suffer as I visited the doctor twice more. At the last appointment, December 29, 2011, the pediatrician ordered blood work and scheduled an MRI with the warning to watch for a change in vision. Eli had mentioned blurred vision that came and went, but he wore glasses which stayed dirty and he passed an eye test at one of the appointments, so again, sadly, not the flaming red flag that I evidently needed. The doctor said if his vision changes contact him and head to the emergency room. The next morning, while watching cartoons, I handed Eli his waffles and noticed he was squinting with one eye to see the TV. I said, “Eli, what’s wrong with your eye?” He said, “If I look at it like this, one of them goes away.” I called for Vic to come into the room and said, “That’s it, that’s what he said to watch for.” He agreed. Since the laundry and housework was the most pressing at home, which meant me, Vic prepared to take him to the emergency room. Knowing the long wait of an ER, I prepared a purple sippy cup with water, a little bag of goldfish, and a package of fruit gummies, and then I watched him walk out the door with a book about snakes, and two hot wheels cars.
I felt an anxiety deep in the pit of my stomach that was dull and heavy. My soul cried out in silence as the presence of evil began to reveal itself, but consciously I was distracted and restless. Avoiding chores and feeling the need for a few prayers and good thoughts, I wrote this post at 1000 hours on Facebook: “Please, say a little prayer for my Eli today. Just found out that he is having an "emergency" sedated MRI done this morning of his head and neck. It was scheduled for Jan 9, but he continues to suffer on and off from nausea, body aches, and distorted vision, so they decided to get him in today via the emergency room. He has had a full palette of blood work done which was all negative. So, we are hoping that this will provide a "fixable" answer and get him back to the being the stinker that he is.” I busied myself with this or that, needing to put away Christmas decorations, or find homes for the new toys that Santa brought just days earlier. But, I could not focus. I needed to pass the time while I waited to hear from Vic, so since he was gone, I was in charge and when I’m in charge we go to Chick-fil-A. I put the kids in the car as they were, and me as I was, un-showered, then we headed to the drive-thru. I had a hankering for the CFA “unhealthy” chicken sandwich, as we call it, and waffle fries. I had been doing so well watching my caloric intake, but on this day I needed stress food. I had ordered salad after salad from this place for weeks, avoiding the chicken sandwich that had made the company so successful, but today was different.  Unhealthy chicken all around, except for Caleb who will only eat a peanutbutter and jelly sandwich. After finishing this early lunch, we had time to play and, as someone avoiding housework, I was all in for play.
Vic called me sometime there about lunchtime to let me know that they were finally in a room, and that Eli would be sedated soon to have the MR imaging of his neck and head. I brought Caleb in for his nap, and began slowly, anxiously folding clothes with the phone on the bed nearby. By now, my mind had imagined many grave scenarios - well, grave as far as I could fathom within my limited knowledge and exposure to boundless evil. I had decided that Eli must have broken a vertebra or just broken something in his spine up near his neck. I was sure it was something of that nature which would require surgery and rehab. I fretted to myself that back surgery would be devastating, painful, from which it was near impossible to heal. That was as far down the road as my na├»ve mind could go. I did not have the brain capacity to imagine an evil such as what lie in wait for us. When the phone rang, I could tell Vic was with someone else in the room because of the tone of his voice. He said “Dr. Cox is here and she wanted to get you on speaker phone to talk to both of us at the same time. Eli is still in the MRI machine. Can you hear us okay?” My first thought was, Oh, wow, well, that’s nice of her to think of me back here at home. “Oh, okay, sure, I can hear you,” I said blankly. Then, as if speaking in a tunnel, Dr. Cox said, “Kristie, I’m Dr. Cox. I’m sorry that we can’t meet in person, but I understand you are having to stay at home with the other kids. So, I’m sorry that you are not here.” Then her voice changed directions a bit as if to include Vic, “But what we have found is a mass at the base of Eli’s brain, at the cerebellum, blocking the fourth ventricle. We will be sending him immediately to St. Jude in Memphis for surgery to remove it. I believe we even have an ambulance waiting for him now, as soon as he is out of recovery.” There was silence for an eternity of seconds as I stood motionless waiting for the punch line. I’m not sure what Vic was doing, then I said, “I don’t understand, what is a mass, what does that mean.” And in my mind all I could think was St. Jude? That’s that hospital on TV with all the celebrities that visit. I think kids are really sick when they are at St. Jude. She said, “It’s a tumor, and it’s large. The blockage is causing pressure on his brain from fluid build-up because the spinal fluid can’t circulate within the nervous system. St. Jude is the best, really it is. Vic, you’ll ride in the ambulance with Eli and, Kristie, you can meet them there.” In a quiet, steady voice I heard Vic ask, “So, is he in immediate danger, can he travel, is he stable enough for surgery?” She assured him that he was stable, and that St. Jude would make any calls from there on out. He was now a St. Jude patient.

At that moment, the sky fell with a great crash upon our home. My knees weakened and I trembled under the weight. Each breath I took got shorter and deeper, and I began to pace the floor in our bedroom thinking incoherently out loud. I said, “I’m sorry, I’m having a hard time understanding. This doesn’t sound … This isn’t good. I don’t’ really understand or I don’t know… I think I’m going to faint.” Dr. Cox said quickly toward the phone, “Kristie, please lie down, is anyone there with you?” I said, “No, wait… I’m not going to faint, I’m going to throw up.” She said, “You need to get a neighbor.” Then I heard Vic in the background say “She needs to call her sister on her cell.” “Can you get to a phone, call your sister…. (to Vic) what’s her name?... Call Wendy, have your daughter call Wendy to come. Please.” I said, “No, I am going to faint… no…  I do need to throw up. No, I just need to put the phone down and sit down, can I do that.” “Yes, yes, but call someone to come.” I sat on the edge of our bed and limply let the phone drop to rest beside me. I was suddenly numb, lifeless, empty. I didn’t have the strength to puke or faint. I stared out the large windows on our back wall at the gray woods behind the house. I was devoid of thought and in a daze of confusion and disbelief. Then I heard the girls jumping on the trampoline outside through the crack in the raised window, and I thought The children. What I am doing? I don’t have time to puke or faint. I picked the phone back up and could hear the doctor and Vic talking. “I’m, sorry. I’m back,” I said. Then Vic and I began to make plans for me to meet them in Memphis. When we hung up, the blood flow returned with a rush, unleashing emotional adrenaline that was physically painful and sickening. Trembling, I made it downstairs to get Wendy’s home number off the side of the refrigerator. My brother-in-law Dave picked up, and he being the first person I talked to I just said, “It’s not good, Dave. Eli’s MRI is not good.” He said slowly and quietly, “Oh, no… no. Ok, I’ll call Wendy.” I told him to have her come to the house to stay with the kids because I needed to leave for Memphis where Eli was being taken to St. Jude.

When we hung up, I felt a desperate need to gather and protect. I went outside to the girls, nervously combing my hands through my hair, still reeling from the blow. Their laughter and play slowed my charge toward them, and I took in a deep breath as I approached. I wanted to bask in the warmth of their innocence, but with tears slowly escaping my eyes, I calmly said, “Girls, I need you to come in.” I don’t know why I needed them to come in, but I just did. They stopped jumping, and immediately sat to put back on their shoes, watching me. My 10-year-old, Abbey, asked, “Why do we need to come in, is something wrong with Eli?” Looking at their faces concerned and confused by my appearance, I thought How can I tell them, and what do I tell them. But, I answered her as I decided long ago that I always would and that is with the simple, straight truth. I plainly and sadly said, “It’s not good, girls, it’s not good.” Then I shared what I knew with them and explained the plan for us all so far. We came inside, and at about 1445 hours I wrote the following post on Facebook: “Dear friends, it is not good. Eli has a tumor on his brain. He is traveling by ambulance to Memphis to St. Jude for surgery. I will be meeting up with Vic, who is traveling with him. Your prayers and thoughts are needed at this moment and for a life time. thank you.” Terrified by now, I could feel the eye of Satan. I was sick, nauseated from his presence and regretting my weakness for an unhealthy lunch. As my trips to the bathroom slowed, I began packing an overnight bag with clothes for Vic, Eli and me. Wendy was at the house, Caleb was still asleep and the girls were settled with television and a snack. I didn’t know what to take and was just throwing something in the bag. We can make do with whatever, until we come home, I thought, because I had reasoned that Eli would have this surgery during which the surgeon would pluck out this tumor thing and we would be home in a few days. I packed quickly and lightly, as I always do, but the plan was for me to wait until they left Huntsville Hospital in the ambulance so we could arrive together. Time passed, and the night stole the light to my path. About 1800 hours, Vic called to tell me that they were in the ambulance and on their way. He asked if I wanted to talk to Eli. No, I didn’t want to talk to Eli; I wanted to over-fill my senses with Eli. “He is fine, he’s in a good mood if you think you want to,” Vic said sensing my emotional hesitation. “Ok, then,” I said with a cleansing sigh, “see if he will.” In his trademark slow drawl, Eli said “Hey, mama.” My heart ached and stomach tightened at the sound of his little voice. “Hey, buddy,” I said, “Daddy, said you are riding in an ambulance.” “Uh-huh,” he said and I could tell he was smiling. He continued, “And, mama, guess what. The doctor said we were going to ride a long way to a big city called Memphis to another hospital.” “Yes, I know, baby,” I said trying desperately to control my quivering speech. “Daddy said that you were going to come in the Rav4. Are you doing that, are you coming in Daddy’s car?” he asked hopeful, not because I was coming, but because the Rav4 was coming. I told him yes, and we talked about him being sedated for the first time, and what was in the ambulance, and about what would happen when he got to Memphis. Vic filled me in that plans had been somewhat changed. St. Jude was sending us to LaBonheur Children’s Hospital in Memphis. St. Jude uses LaBonheur for any major surgical procedures. A pediatric neurosurgeon from LaBonheur would take over and we actually would not be at St. Jude for a couple of weeks. It was all such a torrential whirlwind of unknowns and updates. My mind was foggy and I continued to feel physically sick, but I was desperate to get on the road.

Eli before his first surgery
  I had never been to Memphis, and only once had I been west of Florence, Alabama, but then it was south along Interstate 20 coming from Dallas, Texas many years ago. I briefly tried to live in Colorado, but was homesick after only a few weeks. So, I came back to the little town that I hated to love, but I took the scenic route knowing that I would likely not go that way, too often. So, all I knew about Memphis was that Elvis lived there, and it had a high crime rate. So, I threw my bag in the Rav4, gave the kids a kiss and headed west on Highway 72. My head was pounding, and my stomach could not tolerate even a whiff of food, but I drank lots of water to stay hydrated. Alone in the car, I was ready to get down to the business of getting this tumor thing out and getting everyone home. I began making some phone calls to my family and close friends to make sure they knew and talk to them in person, and to other people with whom I had a responsibility. I was working for my kids’ school, was coaching my daughter’s basketball team, was heavily involved in girls scouts, was on a tennis team, was signed up for miscellaneous things at church and my kids’ school classes, so I busied myself for the first part of the trip making phone calls. By the time I got to the Mississippi line I was done and alone with myself in the car. And, I wanted it that way. I didn’t want anyone with me. I didn’t want to have to think about anyone else, if they were hungry, needed a bathroom, if my driving scared them. I only wanted to think about Eli and getting to him. Then, Vic called me to let me know that the ambulance had broken down. I was ahead of them already, but they would have to wait for an ambulance to come from Huntsville. It would take two hours, and then they had at least two hours left to drive to get to Memphis. So, I was in no hurry but still anxious about navigating a crime-infested city at night. I drove straight through Corinth, Mississippi and entered a stretch of highway that was swallowed up by blackness. The 4-lane road rose and fell steeply for miles in front of my headlights with only an occasional pass from headlights across the median. By this time, I had had plenty of alone time with myself and I had not the cognitive strength to reign in my wild thoughts. Bouts of sobbing and pleading prayers would erupt and settle into a numbing calmness. Still fighting nausea and an eye-bulging throb in my head, I was hurting from all the water I had been drinking. Desperate to just get to where I was going, I did not want to stop for anything, but now I was hurting so badly that just needing to go to the bathroom was making me sicker. I didn’t know where I was beyond the road immediately beneath my wheels. Soon a small BP station appeared out of the blackness with a lone street light. I started to pull in then I saw bars on the windows. I sighed and continued on. It was after 2100 hours, so I feared that whatever I found out here to be open would not be a place I dared enter the front door much less use its bathroom. I continued on, but the combination of all the physical pains and the emotions was making me almost delirious. I had to stop and either throw-up or pee, somehow I had to release at least one of the demons. So, I pulled over on a wide shoulder and got out to go to the other side of the car. I opened the back door and the front passenger door to make myself a stall of sorts. It was cold, but so quiet in the black stillness of that lonely road. A steep embankment dropped off in front of me that I hadn’t noticed, and I could now see a white fence on the other side. When I looked up above, I was amazed at how clear blackness could be and I wondered if in the light this rolling countryside could be beautiful. A headlight rose over the crest, reminding me to keep moving, so feeling better I traveled on.

Eli before his surgery showing his Betts the
city, cars, and roads that he watches from
the 7th floor window at LaBonheur
I set my GPS at this point to LaBonheur Children’s Hospital, Memphis, Tennessee. As I finally reached Highway 385 at Collierville, Tennessee, and left the road that almost literally connected me to home, I could see the swell of civilization. Eli was well behind me, so I stopped at a Target that was still open and bought him a Transformer, Vic some dried fruit and pistachios, and me some Dove’s Dark Chocolate. It was 2200 hours, and I dreaded finding this hospital. Maneuvering downtowns and hospitals rarely goes well, and I was solely relying on this Android phone GPS. So, with that, I continued on 385 and did fine until the GPS got confused with the overpassing streets, and the construction of the new interstate, and the interstate that runs east and west says north and south on the signs because the number is even. I was so overwhelmed and lost. I was scared to get off anywhere and scared to continue. Finally, I got off at Elvis Presley Boulevard. Anyone familiar with Memphis has just gasped. I quickly became terrified for my life. Lined with abandoned warehouses, buildings secured with barbed fences, people walking everywhere, police cars literally at every corner. My small-town-girl eyes were burning, and my heart was racing. And, evidently, so was the Rav4. A policeman pulled me over for doing 45 mph in a 35 mph zone. I couldn’t decide if I was relieved to see him or not. With his flashlight shining in one hand and the other poised on his pistol, he asked me where I was going and said my tag wasn’t registering. Oh, no! I am going to the Memphis jail, and I will not come out. A bursting sob spewed out from me, and without taking a breath I relayed the events of the day. In his rough city manner, he was eager to be helpful and gave me directions, which were complicated. He drilled me over and over, at least 10 times before letting me go. He told me to avoid any streets named after presidents or that are numbered… or, I guess that are named after Rock N’ Roll legends. That doesn’t leave much, just trees, like Poplar and Oak Grove, or nouns like Union. But, despite some kind of emotional stupor, I stumbled onto it.
Eli and some buddies and family before his first surgery.
As with most things in downtown areas, the hospital was under construction. Parking was on one side of the street in a garage. Then I had to go down to a tunnel to go under the street, then up to a sky bridge that connected the hospital buildings. It was as much of a maze as was getting there. I found my way to the seventh floor where they had Eli’s room ready for him. They let me settle in to wait and I wrote this post on Facebook just after 2300 hours: I am at La Bonheur children’s hospital in Memphis waiting on Eli and Vic. Their ambulance broke down about half way so they had to wait for a replacement and r a while behind me. But Eli played angry birds while he waited so he was content. He will have surgery here then go to st judes. They have not said but I’m betting surgery will be in the morning. The kids r w my sister. After the surgery we will know more and have a game plan from there. I used my gps to get here but the numbers were off from construction I guess so I got lost. A cop stopped me for doing 45 in 35. Then told me my plate was not registering. Thought I was about to be a made-4-tv movie but turned on the waterworks pretty easily. He said his friends kid had a brain tumor at 19 months old "didn’t make it" he said (!?!!) then he helped me straighten out the gps and I asked him if it was a safe way to go - the boarded up warehouses and barbed-wire topped fences made me nervous - he said "ma'am, u aint safe nowhere in Memphis. He was the bowl of sunshine my knotted stomach needed. Thank u all for ur constant prayers. Please maintain a constant flow.
After midnight, Eli was rolled in to his room sitting up on a gurney. He was smiling but tired, and I took my first breath since lunch at the sight of him. He told me all about the excitement of the trip, and about getting poked for the IV, and watching all the cars on the interstate. He was precious and my senses could never be filled of him. Eli was eager to play with the first of too many consolation toys, and we were given a briefing and then prepared for the night. At 100 hours I wrote this post on Facebook: Update. Doc has not seen mri but said surgery would not be till next week bc er over weekend and holidays reserved for emergency bc crew is scaled back. Said eli did not appear to be in emergency situation right now and the head guy would be coming in to organize a team to determine what the film shows and how to proceed. I will be headed home in the morning to regroup.”
The night passed too quickly, and Dr. Paul Klimo, a pediatric neurosurgeon, had reviewed Eli’s images. At 830 hours, I wrote this post: “Saw main doc today. Wants surgery on thursday unless the fluid backup gets worse. I will be coming home, then come back sunday or monday and switch w vic till thursday. Still lot of unknowns till surgery but none of possibilities sound good.” Klimo explained that because of where the tumor is there was a range of possible deficiencies after surgery. It was possible that Eli might have difficulty talking, walking, or eating. He may suffer cognitive damage from the surgery as well. He prepared us that Eli might not be Eli when the surgery is over. As the situation continued to unfold and Satan’s hand weighed heavily upon us, Dr. Klimo made another visit this time with the images for us to view. We walked out into the hallway to a computer kiosk. He pulled up an image outline that was clearly a picture of Eli’s little body. I recognized the shape of his head and the curve of his shoulders, but otherwise it was just all gray to me. Then with his pen he began to point at the different tumors in his head and down his back. “He has one here, one here, one here, one here,” he said. Then he slowly swiped his pen up and down the image and said, “He has more than half a dozen, all over the brain and spine, actually, and the spinal fluid is infected.” My heart was aching, and soul was beaten. As Satan’s pawn, I went sadly back into the room where Eli was and wrote this post at 1000 hours before heading home to be with the other kids: “Friends, the news is not good. The mri indicates the tumor has spread to his spine and another part of his brain that is inoperable. I fear what 2012 has in store for us. We draw strength from your thoughts and prayers.” This was the first time I heard the words medulloblastoma, cancer, and malignant. Klimo indicated that because the cancer had spread and radiation and chemo would be necessary, he would only resect the one tumor and would be conservative in doing so, in hopes to limit any deficiencies. We were crushed, and with the surgery date set for the 5th, there was a line in the sand for our Eli.
By some power not my own, I drove half-way home that day. Dear friends Jill and Jennifer met me at Corinth, Mississippi and drove me the rest of the way. With little sleep and no food, the nausea and headache continued, and I had no strength to control my emotions. I just covered my face and sobbed uncontrollably the entire way home. A group of friends and family were waiting for me when I got home, a small sampling of the army that was gathering. We talked, and prayed. I was ashamed of my weakness and fear, but they strengthened me and I began to put on my own armor, sharpen my own sword.

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