Guilt

Loss works a painful hindsight on your actions. You become acutely aware of all the actions you could have taken, but did not. With the perfect clarity of your present knowledge, unencumbered by the demands of actually acting, you suddenly become aware of all of these contingencies that in the moment you never even thought of. I find myself going over things again and again, racking my mind for something, anything that I could have done differently.

There's a thousand thoughts about how he got sick. Did I expose him to something, when I held him in my lap with my phone in my pocket, did it give him cancer? Should I have let them do the catscan when he was 4 months old? James' tumor was a random one. Some ATRTs are the product of a mutation throughout all the cells of the body, an innate flaw that lurks patiently in DNA, until tripped by some random event or another. James wasn't that. The only sick cells in his body were the tumor cells. He was perfect in every way otherwise, just as God made him. So I keep asking myself what did it? What tripped that first cell into an ATRT cancer cell, especially one like James' ATRT? A furiously aggressive tumor, even by ATRT standards, it burned through his body and killed him in less than the time he was supposed to have to recover from his craniotomy. That one illusory success we enjoyed throughout our whole stay at the hospital. This is all foolish of course. He didn't get cancer from a catscan, a phone, or something in the water- if anything that catscan helped us because we wound up having a benchmark when James first got to the hospital, so the doctors knew better than to treat him for something else. You hear nightmare stories of parents in and out of the hospital for months without an ATRT diagnosis, their children suffering. We found out in just over a week after James got sick. Nothing caused James' tumor that I or anyone else did. It just was. Somehow knowing that just doesn't help.

Then there's the guilt about when he was sick. When he first got sick I didn't really take it seriously. He's a sick baby, babies get sick. He's throwing up, what's another summer bug. I just didn't worry about it. We went to the pediatricians and I patiently waited for them to confirm my suspicions, toss some zofran our way and send us on our way. I never pushed them to do more. I never thought- hey, could this be serious? Even when we went to Medical City Children's, I remained supremely unconcerned. Here's where the first real guilt creeps in. Shouldn't we have gone to Children's? They found his tumor there. We only saw a doctor right before we left at Medical city and they barely even examined James. They just gave him fluids and got hacked when we made them stop trying to give him an IV after they screwed it the first few attempts. They had an IV team at Children's that did it in one take. I should have been more aggressive, I tell myself. I should've gone somewhere else, found the diligent and sharp intern (never believe people who tell you not to go to teaching hospitals) who first noticed James' symptoms at Children's. I should have pushed for more treatment faster. I should have made them find it, instead of sending us home with James still sick. He deserved a better father than that. Still, I remember being by and large supremely unconcerned, if annoyed by the care we received. He's throwing up, I remember thinking to myself, we'll get fluids, medicine, and life will go on. It's not like he's dying. I probably even made some stupid jokes. I don't remember.

Even on the way to Children's, stopping by the house to pick up clothes and toys for a quick one night stay I remember my worst case scenario having evolved from the weekend to that Wednesday from stomach bug to stomach parasite, as WebMD warned me. WebMD did not suggest brain cancer. Still, I assumed a night of observation would translate into a quick solution and an easy out. Just need to pick out the right med. If anything, I thought I was overpacking, with at least half his toys and about a week's worth of clothes. I remember talking to someone (can't remember who- I remember very little about that day before the hospital) at work that day about James being sick and them asking if it was serious, and my lackadaisical response of no. How could it be serious? He was an eight month old. What happens to eight month olds? My mother asked me if I wanted her to come down and I said no, he's fine. And fool that I was, I believed it. I feel so guilty about that. He must have been in so much pain and here I am, his father, brushing it off as something not that serious, a bump in the road and a one off night at the hospital. I feel so guilty about that, about how "ok" I was until the differential started narrowing. I know we caught it "early" relative to a lot of people, that we were diligent with 4 pediatrician visits and 1 ER visit in a week before getting admitted. Still, I feel like I could have done more. Should have done more.

When he was sick, there's still more guilt. Not pushing the doctors hard enough to get another MRI after his post-op MRI, contenting myself with feeble catscans and still less useful medicines. I worry about how much pain he was in, how little medicine we gave him. My poor little boy. I feel guilty about each and every night I went home to sleep. I had barely three weeks left to spend with him, and I spent more than one night away from his side. I would give anything for just one night in the PICU again, with James stubbornly refusing to sleep, pawing at his leads and his IVs. I'd kill to try to spend another night on the worst of those PICU beds, the uneven vinyl pullout with less padding than my cheapest sleeping bag, barely long enough lay down on, more comfortable your leg hanging off it. I feel so guilty about that. About the Rangers game we went to, the meals out we had. Every moment I spent away from him. I feel guilty about the end. Did I give him the right medicine? Too much? I followed the directions but what if I screwed it up? What if I made it faster.

Above all, I feel guilty about the time I missed with him while he was still here. There are so many things I wish I'd done that I thought I'd have time to later. So many experiences lost. I really don't have words for that. I could lie to you, but why bother? I know better. I assumed I'd have years to learn to be a better parent, and I just didn't get there.

I've read enough on grief to know at this point that guilt is "natural" and part of the healing process, that I'm projecting and deflecting, attempting to avoid the reality that there is no one to blame, no one to be angry at, and no one to seek satisfaction from. As always, academic understanding is useless. I know I'm not going to die on a roller coaster, but my body often disagrees. The guilt I feel about James is a bit like that. I know it won't help anything, I know it can't. I know it won't help me, but there it is, whispering in my ear reminding me of all I could have done. So I just feel it. The silly thing is that nothing I could have done would have mattered. If they'd found James' tumor that weekend, he'd still be dead. If I'd spent every night with him, he'd still be dead. Nothing I or anyone could have done would have made a difference. But I was his father, his protector- I was supposed to be able to do things like that for him. Sometimes I feel like guilt helps me remember that, helps me connect to him in an odd way. It's a link of responsibility. I miss that.

Thank all of you for your continued thoughts and prayers.

Day Twenty

We spent most of the day angry. Yelling at doctors. Trying to impart our sense of urgency in them. Begging for tests, for answers. We yelled. We cried. We pulled all the strings we knew. And none of it matters.

The only thing that matters is the news. We got the MRI. James' tumor is back. All the way back. It's filled the space left from when we removed it, and spread like tendrils from a wildfire through his brain, coating the top of his brain, clustering around his brain stem. The images are vivid and terrifying. And it all happened in two weeks. Two weeks ago, James had a successful surgery. Today we learned in the time between that surgery and the date scheduled to begin his chemo, his tumor has not only returned to full strength but actually become worse.

Rhabdoids are extremely aggressive tumors. James' tumor exists in the most aggressive category of rhabdoid tumors. Our oncologist was genuinely surprised by how quickly this happened. You could see it in his eyes. This changes our landscape, and our world. We now have two options. The first is to take James home, to make him as comfortable as possible, and try to show him just how much we love him in the time we have left. For that, the timetable the doctors are talking about is expressed in days and weeks. Eventually the tumor will damage his brain stem sufficiently that he will simply stop breathing. The other option is to immediately begin chemotherapy- another surgery to remove the tumor would be pointless, as during James' recovery time the tumor would revive itself completely as it just has. Our oncologist expressed extreme skepticism about the usefulness of chemotherapy at this point- given the aggressiveness of the tumor, any gains would likely eventually be erased. Of the children he has treated with tumors similar to James', none have survived.

They asked us for a decision. We couldn't make one. We asked for the night to decide. It's the longest we can wait to begin chemo if we are going to do that- every hour, every day matters. On one hand, for James in his current condition chemo means chemo in the PICU, remaining on the ventilator, and getting sicker. Possibly sick enough to where when it becomes clear that the chemo isn't even buying us time- the most it could do- we won't be able to take him home. We'll lose him here. Home means we'll watch our son die in the room we decorated for him less than a year ago, in the convertible crib that never made it to the a toddler bed stage. There is no right decision. There is no wrong decision. We're beyond that duality.

We don't know what we're going to do. We feel like we're being forced to choose between making James suffer and giving up. I abhor both. We were prepared for a war, for a marathon of chemo and a devastating year of trying to make James better. But we never even got to fire the first shot. James is our perfect angel, he was born perfect in every way, and he remains perfect. Even now, with everything he's been through, his natural resilience remains. He holds on tight to your fingers. He's so far away from stable- so far away from three weeks ago or even Friday. His breathing remains in doubt. His heart rate is irregular.

Please don't tell us what to do. We don't need opinions, or second guesses. Please just pray for guidance and that we have clarity for our decision. Pray that it brings us peace, either way. Pray for James, that he not suffer, whichever course we choose. You all have walked this far with us and we thank you. We will certainly need all the support we can get moving forward.

Day Nineteen

Kara ably summed up the day. Returning to the PICU feels like we've come full circle. Our nurse is the same- we've stayed in the room next door before, and the one down the hall. Our favorite fellow is back with us- and we know the sex of the baby he's having in a few weeks. Any day now I suppose. It was three weeks two and a half weeks ago. We miss the in-room bathrooms from the floor but welcome the heated blankets (which we horde). We still have no idea what the future looks like.

James' sodium levels are improving. We finally got a chance to see his CT scan and the swelling which is concentrated in his brain stem region is obvious. This region coincides with where James had both his surgery and the location of his tumor, so we suspect that some correlation exists, though it may not be explained. Dark, empty spaces mark the ventricles on the scan. James is missing one- a sign that the brain has swelled into the space. This is likely attributed to the sodium deficiency, but the sodium deficiency itself remains unexplained. It's a common problem in brain tumor patients, but we take little comfort in that.

A direct correlation exists between the number of doctors you see and the level of concern about your case. Today we were shooting for the trifecta. Or whatever you call more than a trifecta. Quadfecta? The endocrinologist, with his merona tie (props for savings) flipped inside out our entire conversation and his hands tucked in his pockets, did resemble the neurologist. He also loved to pontificate on hormones, which must come in handy in his line of work. I'm glad, because as the day wore on, our 20 minute lecture in anti-diuretic hormone production and impact came in extremely handy. I even supplied the name for ADH for one of the oncologists at one point. He had a single groupie, the handshake and listen variety.

I am pleased that once neurology showed up they acted promptly. I am less pleased they showed up less than promptly. Although he said he'd heard of the seizure before he had not heard of James' lethargy, which concerned him much more. This is frustrating because it reinforces the feeling that you, the doctors, and the various specialties are playing a game of telephone in which your words, the residents words, and the nurses have to be filtered through several layers before they get to the specialty who needs to make the consult. When they do, key pieces, like lethargy, may be left out. The neurologist gained a fresh sense of urgency when he learned that but we had to get our intern to call him twice to tell him about it. Our intern's been very good to us, and a useful sounding board for our concerns, which have multiplied dramatically over the last 24 hours or so. She's an ally. Our neuro-oncology crash course took a detour through endocrinology, with a touch of nephrology for good measure.

James gets good care on the PICU, but he needs good care now. He's not stable enough for anything else. We're supposed to be starting chemo and James can't even stay on the floor. In addition to the complications of chemo, our move is made worse by the fact that so many of the creature comforts we acquired on the floor- from the air mattress to the less frigid thermostat, aren't options here.

James' appears to still be having seizures- little ones, lesser ones than the huge one last night. His pulse shoots up and he'll have apnea spells. It does seem to be getting better. We're hoping that it is just the sodium- because we can certainly fix that. I worry it's not. But I can't go there right now.

I am trying to stay positive. To locate the good. James grabbing my finger still. The CT scan not showing any spread of the tumor. I'm naturally a cynic- but ironically this process has made me much less cynical. I'm not sure I'd survive if I kept at that. Thank all of you for your support today- it was a long day, and we needed every bit.

Day Six

When I thought about the days that would be the longest, I always assumed that day would be yesterday, waiting on James to get out of his surgery and to know the results one way or the other. In a strange way though, today felt longer. Maybe because some of the adrenaline is beginning to fade and Kara and I are starting to remember that we're mortal. Maybe because we just didn't do much, and so the day crept by in anticipation of action- relatively minor actions- that just took much longer than we thought they would. We thought we'd make it back to the floor by midday, we didn't make it until 7:00.

Last night Kara got quite sick in the evening (food poisoning+ no sleep= violently ill) so I stayed up at the hospital alone with James. I'm glad she rested. In many ways, the evening routine in the PICU has become normal, expected even. Every now and then one of James' levels will spike. It's almost always nothing. After a few days I now know how to silence every alarm, though I'm still working on how to work the IV machine alarms. The silencer only buys you 2 minutes (the ones on the floor, where you can completely mute the alarms are SO MUCH better), so it's worthwhile to find a nurse in the meantime if it's serious. James came through the operation well and was on pain meds, so he woke up only briefly, once at my prompting, to eat some pedialyte which was the only thing he could have because he would be under general anesthesia later that day.

The morning routine starts somewhere between 6:00-7:00. The doctors begin to creep in to make their rounds, and the day nurses arrive along with the changing of the guard. We've become much more adept at medical lingo than we were before- "the floor" for non ICU. The "magnet" for an MRI machine. An "admit" your nurse is getting another patient and will be busy. "Give report" what they do on shift changes.

Our neurosurgeon arrived with his "groupies" as we call them, the assembly of some combination of PAs, residents, and fellows that follows behind him like a dutiful tail wherever he goes, rarely speaking and saving their questions for the walk between patient rooms. I'm glad their are so many of them. It means a doctor is never too far away.

Kara arrived back with a nice, huge, cup of coffee- (a Kara creation, venti mocha cocunut latte) and we started our day. Despite initially being scheduled for an MRI at 9, other emergencies meant that the MRI was postponed until 1:30. Although the wait did eat up a good chunk of our day, we were grateful that we were now capable of being bumped- we'd exited the critical stage in which James' condition required that he be given first priority. Similarly, for whatever reason our room at the PICU was a "special" room with positive pressure that was needed to treat another patient, so we had to move to another PICU room. As no less than three people came in to apologize for this, I got the distinct impression I was supposed to be mad about it. I was just glad we didn't need a special room. I like not being a first priority at the hospital.

That said, I can understand why some people would get mad frequently in situations like this. Yesterday when James was having his surgery I went up to the surgical waiting room to check (for the third time) if they had our contact information correct- all 4 possible numbers in descending order of priority. A man there was complaining to the staff that his entire family couldn't stay in that waiting area. The staff apologized and he demanded to speak to a "manager." While I thought that was a bad approach all things considered- a waiting room is not a restaurant- I understood where he was coming from. There's no control when your child's in the OR or that sick. But you can control where you sit and who you sit with- or at least you'd like to. There are a lot of things I could get mad about. But I choose not to. My anger will not help my son unless I'm angry for him, not for me. In any event, in my experience the staff has been fantastic- little things, like taking a lock of James' hair during the surgery and giving it to us as his first "hair cut" (he's actually already had one) go a long way.

The new PICU room had a gorgeous view of downtown Dallas, far and away the best view we've had so far. I know it's silly to keep track, but it's something to pass the time. The wait for James' MRI kept getting longer- building anticipation. Though we knew the surgery went well there's that nagging need for closure- we wanted to remove the possibility of any more immediate surgeries from our future as soon as possible.

Finally, we received the go ahead for the MRI and met our fourth anesthesiologist so far. It seems strange that a procedure which shook us a few days ago- we were terrified of James going under anesthesia for the first time, now seems tame, almost routine. I don't know that we're used to it or that we ever will be, but we're certainly starting to appreciate relative scale of each procedure, and adjust our concern level accordingly. Ironically, I recall that there was a real question back in April about whether the "risk" of the CT scan were worthwhile given his fall. We're well past worrying about the risk of CT scans- and as Kara said, it's a real blessing that we got that scan so that our doctors now have a baseline to compare James' scan from last week to.

After the MRI we returned to the PICU and waited our the results so that we could receive the orders to move down to the floor. This wait was hardest, though again, the fact that there didn't appear to be a need for him to speak with us immediately can only be perceived as a positive- if he had things more important to do, that meant our son wasn't having another surgery today to remove missed tumor. I finally got bored enough to turn on the TV in the room. Strangely, even though we've had a TV in every room we've been in I'd never turned one on. In a weird way, there had just never been enough down time. We had the chance to meet one of our nurses from a few nights before again. She told us about a camp she ran for children like James who had brain tumors- 220 kids every summer, many of them who had their tumors as young as James and couldn't remember a thing. It was great to hear about so many success stories, all of these little messages lift our spirits and to envision a normal, happy, and of course healthy future for James. This nurse was kind enough to page our surgeon for us, who gave us the results which Kara already described below in some detail. To summarize, good news. The tumor is 95% gone (no one ever expected them to get all of it and we knew they wouldn't) there will hopefully not be a need for more surgery.

Following the results we were fortunately able to quickly move back to the floor and get settled in there, where Kara demanded that I go home for the evening. It was difficult to leave, to let go of the illusion that James somehow needed me there to take care of him. But Kara, as she often is, is right. James needs us rested to take care of him, we're useless to him exhausted and falling asleep in rocking chairs as I did earlier today. So now I'm home and Kara's spending the night with James. I took my first shower out of the hospital since Wednesday morning. I laid in a bed larger than my college dorm bed. I got in bed at 9:00, but was still too keyed up to sleep although I'm exhausted so I wrote this post in bits and pieces.

I cannot thank all of you enough for your thoughts and prayers for James, Kara, and our family. Your support has been overwhelming in just the right way- I am amazed by how many different people from all stages and parts of our life have reached out to us in this time and helped us. We could not function without your support.

Here is a picture of James from about a month ago- he is playing and happy. He likes to throw the parts of this toy when he tires of eating them. I pray that soon we will take many more pictures just like this, normal in every way.

Day Five

Here is my son resting after his SUCCESSFUL surgery today. There are many more things to say about the surgery, and I'll get to that, but the main thing is that the doctors feel good about the outcome and believe that they have removed most of James' tumor, meaning that we get to move on to the next step of James' fight. It's going to be a long journey, but we're starting our right. For those who are keeping score (I am) right now we're looking at:

Tumor: 0
Jamesie: 1

For the first day in a long time, I felt better. This successful surgery means we can move forward with treatment and hopefully put an end to this tumor permanently, allowing James to live the healthy and normal life that he so richly deserves. Thank all of you for praying for us today, the outpouring of love and kindness that we have received and the number of people who have expressed their love for James is overwhelming.

The night before the surgery was rough. Kara and I both had trouble sleeping, as the added anticipation of the surgery complicated our already described difficult sleeping situation. In addition to that, even though we were on the floor, a few items of pre-op prep like a hairwash and an IV at 4 AM meant that Jamesie didn't sleep, so we didn't sleep. As I mentioned before we were thrilled that James finally regained his appetite and developed a love for solid foods. While fantastic, this meant that because James could not eat last night, he was starving on top of being exhausted, as he's rarely able to get much sleep without getting interrupted. He awoke at 12:00 SCREAMING and could not be consoled, he finally just wore himself out yelling and went back to bed. He did the same thing at 2:45. Kara was particularly upset because seeing her only aggravated him- he wanted to eat, and he was furious she wouldn't feed him. Fortunately as the operating time neared, James appeared to exhaust himself and calmed down.

Before the surgery, we were fortunate that one of the ministers with pastoral care at the hospital (who knows one of the pastors at our church who also came this morning) visited us and shared a scripture reading and prayer with her. Perhaps jut as important for our mental health, she also sang to James with us for about thirty minutes while we waited on the transport team to come and escort us to pre-op. Our family was able to see James on the floor before he left, and Kara and I followed down with him to the pre-op area. He was much calmer down there, and fell asleep before they woke him up to give him medicine to put him asleep, for some reason I thought that was funny. After the night, we were worried that he would be rolled away from us screaming. Fortunately, that wasn't the case. Although it was heart wrenching to watch him leave, knowing that he was calm was important. We shared a hug along with a good cry in the hallway and left to find our families.

I'd like to thank the pastoral care department again for providing us with the use of a family room adjacent to the chapel for our family to wait in. The OR waiting room only allows 4 family members to wait. We roll large, so that wasn't really an option. Throughout this entire process, they and the staff at the church have provided steady support and comfort.

Far and away the most difficult part of today was waiting on news. The OR called once to let us know that the surgery was underway, and then were supposed to call every hour to let us know how the surgery was progressing. After the initial "getting started" phone call which arrived 45 minutes later than expected, we didn't hear anything for over two hours. We were becoming concerned. We did all kinds of things to keep ourselves occupied and distracted. Kara's friends read her the latest People magazine and played with her hair. I took a long, repetitive walk through the garden around the hospital and read an article in Texas Monthly about a gamecock breeder. Nothing really helped.

Finally, without warning, our neurosurgeon appeared in the doorway to the family room. Needless to say we were terrified. We had been told the surgery would be six hours, and less than three hours in, here's our surgeon. We both braced ourselves and ordered everyone out of the room, where I think they almost collapsed in the hallway.

Fortunately, the surgeon was bringing good news. The surgery had gone quicker than expected. James' tumor was primarily composed of a soft tissue with the consistency of toilet paper, and it sucked right out. The doctor thought that he had removed most of it, and confirmed that its behavior was consistent with the two types of tumor we had been told it might be. Obviously, we're still waiting (probably 3-5 days) on pathology to confirm what type of tumor we're dealing with. Because of how soft it was, the tumor had come out quickly. Apparently, tumors that are fast and aggressive like James' are composed of a lot of necrotic (dead) tissue as they grow so fast they outstrip the available blood supply. The positive is that in James' case this quickened the surgery, because the dead tissue is soft. Most importantly of course, the surgeon told us James was well and would be returning to us.

Sure enough, an hour or so later we returned with James to our old home in the PICU. This time in a MUCH larger room with a view of something other than the wall of Parkland hospital (I-35 traffic is an improvement). James is quite groggy as this surgery involved more medication than either of his previous procedures, but appears to be recovering well. We have a post-op MRI scheduled tomorrow to check everything out, though our surgeon doesn't think anything will show up. We are thankful, blessed, and finally glad that something good happened after the steady drumbeat of escalating bad news last week.

I want to thank all of you for thinking about James and praying for him today. Today was the most important day of his life, and I believe your support eased his course. Kara and I are continually amazed when we hear how far and wide the network of support that you all have created for him is. Words cannot express our gratitude.