Long Road

posted on CarePages
Tuesday, April 5, 2011

“Choose to think according to God’s word and not how you feel. Nobody is a failure unless they choose to stop trying. Life gets a lot sweeter and easier if we live with the attitude that says, “I will do my best today and I trust God will do the rest. Tomorrow I will begin again and I will never quit or give up.”. Joyce Meyer (stolen from Malisa Boardman Copenhaver’s email quote of the day from 4/2/11l)

Two weeks ago this Sunday I was walking through the Memphis Botanical Garden with our good friend Margie Lackie and Brennan. Possibly the most beautiful spring afternoon this year, and clearly one of the most joyful and buoyant days in many months. Tara and the boys were expected home in two days from Spring Break. As we soaked in the late day sun, filtering through the nascent tree canopy like a pear colored lens, I felt awash in hopeful relief, feeling the warmth of his energy and knowing that Brennan was just hours from completing his first weekend away from the St. Jude’s campus since September. Just the day before he had walked around the block near our little home at South Bluff. Walking mostly on his heels in a Charlie Chaplinesque waddle, he never complained; just held my hand asking me questions about trees, hunting and things about home. That day he had also met the discharge nutritional goals for the week, representing his emancipation from daily dependence upon IV feeds to gastric-tube (g-tube) feeds (a feat which also re[resented my emancipation from the stress of mixing, administering monitoring the daily regimen). And most of all, he was happy and talking with the spirit of a kid in springtime.

Margie was gracious to spend most of the weekend with us. Brennan was getting more adventurous, but I was happy to accept any help that I could. Just before we called it a day, we passed through shaded meadow of daffodils. Brennan agreed to get up out of his little wheel chair for the camera, representing the first father son photo of a spring that just weeks ago I was afraid to imagine. It seemed like every corner of the park was punctuated with couples capturing engagement portraits, reclining on blankets near family picnics, and people willing to step outside of the margins of busyness long enough to turn off the outside world for a moment.

As Brennan slid back into his chair for our final wreathe around the park’s Japanese tea garden, I mentioned to Margie, “It took me two weeks to post the last Carepage, and I am really looking forward to a quiet and uneventful Spring that doesn’t serve up much to report.”

At that time, Tara and I were confidently focused on the goal of taking the entire clan home for Master’s week. Tara and I were already making travel arrangements and talking about coordinating delivery of Brennan’s medical accessories, feeds, etc. Ask these three brothers (or any family from from Augusta, for that matter) and you will be plainly reminded that the Masters golf tournament represents the most beloved annual tradition outside of Christmas (people come home for the Masters who do not make Christmas). For while there, we thought this was a realistic goal.

Now, after almost three hours of trying to piece together the jumble of issues and emotional distress signals flaring about since that time, I have almost reached the point of exasperation. At this point, i think I could have been more successful writing about how not to lose your sense of direction in a subway. My head spins when I try to sort through it all. As a matter of fact, I just deleted about five pages of convoluted details, feeling that a thirty thousand foot perspective can sometimes be more telling than one form ground level. This is particularly the case when talking about what’s now happening with Brennan medically. Yet another example about the flimsiness of good intentions. Best not become too attached to them, as they are more often than not casualties of the real world. Brennan is not going to make it home for the Masters; indeed, it is likely he will still be in the hospital.

Waking up on the monday after our beautiful walk through the park with Margie (the Monday that Tara and the brothers were expected to return), Brennan woke up complaining of nausea as well as stomach and chest pain,. What had been scheduled as a short visit to the medicine room for labs turned into a most-of-the-day experience, and the beginning of a slow, steady tail-spin.

Brennan is still in “isolation” status as a result of his testing positive for the VRE bacteria. This stands for vancomycin-resistant-enteroeoccus, which is commonly found in the digestive tract and is not dangerous whatsoever with healthy people. But, considering that vancomycin is the ultimate antibiotic smart-bomb, kids who test positive must be isolated form the rest of the hospital population for obvious reasons. If you have an infection that can’t be handled with “vanc,” pack your bags.

The very few benefits of isolation are the private clinic suites one acquires, which on this particular Monday proved the perfect place to rest after a dose of morphine and benadryl. His pain had gradually increased throughout the night before, as he awake around 2pm asking for pain medicine, never to truly fall asleep again. Turns out the stuff I have for him at home wasn’t getting the job done; but more importantly, it turns out that his “nutritional” was starting to treat him real wrong.

But when the docs came in late morning, the issue du jour was not the pain in his tummy, but were relative to his liver enzymes. With a normal enzyme level of around 50, his had crept up to around 400. Consequently, blood work for levels of certain medications he takes daily were ordered for later in the day, once his system had had a chance to process what I had given him that morning.

He awoke around 3pm for what turned into nothing less than an extended nap on the toilet. He could barely lift his head, but his tummy was doing summersaults, working overtime but not hard enough to provide any relief. I would sit on the edge of the tub next to the toile, leaning forward to put my arms around him. He would then lean forward placing his head in the crook of my neck to close his eyes. Nothing was coming out but gas and he literally screamed in pain. There we sat for most of the afternoon, stroking his soft stubbly head of hair which has been slowly growing back healthily black.

Tara and the boys were expected around 8, so we saw no problem when our extra lab work was scheduled for 7pm. I figured we go in for a ten minute lab visit and be home in plenty of time to welcome home the Spring Breakers. Waiting at the isolation entrance, a nurse finally came to escort us back to our segregated clinic room; but we had not been there long enough to even take his vitals before we found ourselves back in the bathroom. He started screaming again with the pain. But this time he suddenly looked up and exclaimed “Daddy, I need a bucket!”

Frantically looking around I found one of the kidney shaped plastic vomit bowls that are so prevalent in places like this. I barely lifted it to his mouth when he projectile, immediately filling the bowl over capacity. I held it spilling-over onto his legs, my arms and the floor and frantically tried to grab another, only to have it filled up and overflowing just as quickly. When it was all said and done, I had three of the bowls, with more than an equal share on the floor and about our clothes and bodies as he sat on the john crying in exhaustive relieve.

The stuff was less vomit than g-tube feed product, only backwards. It looked like it and smelled like it, although it was a lot warmer coming out. As the nurse came in to help us out we did our best to determine how much he vomited, not being able to quantify what had spilled over. I said, “I have not idea, but it looked like about two days worth of feeds to me.” In my best guess, nothing that has gone in the g-tube has been digested. It had just been sitting there with no where to go, until…

But he felt better. The doctor on call told us to simply hold the feeds over night, He was to get his g-tube adaptor changed over to what is called a “mickey button” in the morning, which is a much more easily accessed water-tight valve that barely protrudes from the skin, versus the dangly tube that he had since the beginning. Needing to be NPO for this procedure after midnight anyway, we had a good excuse to hold off on the feeds.

So by the time we got back to the house, the brothers were already home. They were brimming with energy and stories about fishing in Charleston, the NCAA tournament and the Wolf River indoor-water park they experienced. It had been a wonderful worry-free and overdue break for these guys, who have not had a vacation in two years without the mortality of their brother looming above it all. Unfortunately, their brother who just the day before was beaming, was out for the count.

From that point forward, he started sliding backwards every day. The first issue was related to the liver enzymes. After his Mickey Button was installed, his lab-work showed the liver enzymes to have increased to 1,400. By wednesday they were at 4,200.

At this point Dr. Leung was talking hepatitis. “He has to have consumed something to have started this,” he told Tara as the team was immediately put to work trying to ID and hopefully eliminate all of the bad things that this cold have been. I chimed in on the phone to tell her that if two macaroni noodles and a potato chip can cause hepatitis, then it very well could have been something he consumed; but of course, my mind started wandering to what I may have screwed-up with his TNP feeds.

That night the doctors had us move him from the Bluff, in the event the source of the liver problem was related to anything environmental. Therefore, an isolation room at the Grizzly House was made available to him, which he moved to directly from the medicine room.

With the Target House isolation apartments all full, this is the only other option available. We had actually moved him to the bluff trying to avoid the Grizzly House rooms; as, after living in what is effectively a standard hotel room with very little natural light for an extended period of time can be depressing. But by this point he was literally counting the minutes for his next fix of anti-nausea medications, providing him relief by their soporific nature. He could have cared less if it was nighty or day. Most of the day for this entire week he was in bed, curled up in pain, or in the bathroom trying desperately, but ineffectively to clear whatever was churning inside of him.

Dr. Leung had explained to us that, as a result of Brennan;s GVHD, his stomach and intestinal lining has been impacted to the extent that the membrane which absorbs nutrients had been majorly compromised. “He has the digestive system of an infant.” He explained to us. “He is going to be sick and he is going to feel bad for a wile,” SO we just chalked it up to this. The feed pump kept pumping and the nausea and stomach pains got worse.

It was with this Dr. Leung’s comments that Tara and I began to lobby with the nutritional specialists about identifying a food product that better agreed with him, recollecting for them how finding the right infant formula for each of our babies was very much a hit and miss exercise; but that through experimentation we were finally able to find the right thing.

But back to the liver problem. Moving to Grizzly, we also stopped giving him one of the two blood pressure medicines that in extremely rare cases can affect the liver (we were told that this side-effect was manifest in less than 1% of cases, which is a place we’ve been residing for quite sometime.).

We didn’t put much stock in the “environmental theory” or the “something he ate theory.” He’s been on the 1 percentile team for two years now; and, sure enough, the next morning his liver enzymes started coming down. Thursday they were back to 1,500 and by the weekend were in the 100 range.

Given the slope-rating of hepatitis compared to a drug reaction, it is needless to say that we were thrilled and relieved to scratch this issue off of our list. Our fears were alleviated to the extent that I slipped out to play golf on Saturday with some close friends, certain that we had dodged a bullet. But walking back into Brennan’s room Saturday afternoon, he was still curled up on the bed. Still screaming with occasional chest and stomach pain. And still in the bathroom half of the time struggling for relief. He had been in the medicine room all day, having told Tara that he felt like he needed to be readmitted to the transplant unit; however, after a shot of IV morphine and a bag of benadryl, he slept off most of the day, keeping Tara and the boys confined to his windowless little room for an entire Saturday.

Perhaps it was the combination of relief provided by the drugs and the fellowship of the whole gang together, but later that afternoon he was ok with going back to Grizzly. I was certainly relieved that he had come around and, as always, looking forward to spending the night with him. But as before, we spent most of the night with his stubbly little head resting on my shoulder as I held him on the toilet for most of the night.

The next morning Tara and the brothers had the morning and afternoon for Church, lunch and a movie. At the Grizzly House, Brennan woke up to tell me the same thing he had told Tara the day before. “I really think I need to be in the hospital.”

“Why, Brennan?” I asked, hovering over him, stroking his ever darkening head of hair, which is actually now starting to show some signs of curls “I don’t, know, daddy. My body is just telling me that I need to be in the hospital.”

Calling the medicine room clinic for the purpose of telling an on call physician that their nine year old “just knows” that he has to be in the hospital is a bit awkward. “Excuse Doctor, you don;t know me or my son, but he says he needs to be in the hospital, can you get a rom ready?” Nonetheless, we soon found ourselves back int he medicine room, with the same nurses form the day before rigging up his morphine and benadryl pole almost as soon as we arrived.

And relief did come. But it was fleeting. Before we knew it he was back in the same bathroom from two weeks ago vomiting up yet another bucket of IV feeds.

Five o’clock rolled around, when I stepped out for the 5:30 Sunday church service. Christopher actually joined me, although he had been to communion class and church earlier in the day. Waving goodbye to rest of the gang, we assumed that by the time we returned after church and picking up supper, we would meet them all back at Grizzly.

The Grizzly House room was empty when we returned. Christopher and I made the walk over to the medicine room Io find Brennan away with his Mom in X-ray and Nat in his little medicine room by himself. “Did you hear?” Nat asked. “Brennan has to go back into the hospital.”

A minute or two later Tara came walking back into the medicine room with Brennan. “Well, once again, our boy was right,” she said. “He’s three for three,” referring to the last two times he told us that he required hospitalization, only to confirm that he did.

As it turns out, he had Pneumatosis Intestinalis. The layperson’s definition is that he has air in his intestinal lining. As it turns out, he colon was severely compacted. With virtually nothing coming out on the bottom end, his feeds were hitting a dead-end and returning out oft he top. The air trapped in his intestinal wall originated as a result of a couple of things. First, the GVHD had clearly eroded the first layer of membrane which absorbs nutrients, thus accounting for his incapacity for digesting food product. Secondly, the undermined membrane had allowed microbes and bacteria from his feces to enter into the intestinal wall, effectively creating a new parasitic environment rich in gasses excreted from the little creatures residing there. These anaerobic bacteria are single-celled, living organisms that thrive in environments in which there is little oxygen such as Brennan;s tummy)

The first response was to give his intestines total rest (TOTAL, meaning no water or even saliva to enter into the digestive system). Changing its role as an intake line, the g-tube’s role was reversed to that of an outtake, A very light vacuum system was attached to extract both anything entering the stomach (spit, etc.) as well as any gas or excess fluid created by what was already there.

For a while, we were told that he would be totally NPO for as short as a week and as long as a month. Any more weakening of the intestinal lining could result in a rupture, which would spill all sorts of nasty things out into his system , which of course was a circumstance we wished to avoid.

Of course we were praying for the short-term solution, the best hope for which was established by the administration of Flagyl, which is is an antibiotic effective against anaerobic bacteria and certain parasites.

Then as the next few days wore on, his blood counts started to drop. His hemoglobin dropped fro the 10ish range to below 7, requiring Brennan’s first blood transfusion since the last transplant. Also, his platelet count dropped by close to 30% in three days, triggering significant concern on our behalf about things a lot worse than parasites. Every relapse, including his aplastic anemia, were preluded by a sudden drop in platelets. Everyone expressed “concern” about this although all the docs reinforced the fact that any inflammation, such as that occurring as a result of the pneumatosis, could consume both red blood cells and platelets. The ultimate confirmation that this is not the issue could only be determined by another positive Chimerisim test, which would show that he still maintains 100% donor cells in this peripheral blood.

This test is typical done weekly, but a snafu in the lab provided no results last week; consequently, more labs were run Friday and will hopefully give us what we want to hear no later than wed. of this week.

Thursday he platelets bottom out at a still healthy 130,000 (they were around 190,00 p the previous weekend) putting us more at ease. Also his hemoglobin has stayed at a steady 10 point-something since the transfusion.

As the week wore on, the pain started subsiding. It appears that the Flagyl has started doing its job, as the latest X-ray showed significantly less gas in the bowel. Also, all of the compacted stuff seems to have finally flushed out. On Thursday he was a virtual fire-hose, and has since been taken of of the NPO status.

The fundamental change in all of this is that he is now off of g-tube feeds and receiving almost 100% of his nutrition via TPN. The g-tube feeds have been started back at a paltry 5mls per hour with a very benign formula called Vivonex, which is something comparable to feeds for premature baby’s. We basically stepped backwards a month in order to give his gut time to heal before gearing up the nutrition again. We are told that GVHD of the gut can take months and months to heal; but with patience and the right care, it will take care of itself.

He is still weighing in around 20 kilos (40.4 pounds). The widest part of his legs are his knees often diverting the eyes from every other little bone which is visible through his ashen skin. But he’s still beautiful. The hair continues to grow and he still has his little Brennan sparkle, which I am confident will brighten our doorstep back home before the end of the summer.

Sunday morning, it was my turn to take Christopher to his first communion class and be with the Brothers for the morning church service. The Cathedral of the Immaculate Conception on Central Avenue in Memphis is an absolutely breathtaking church. The colors, the windows and paintings all exude reverence. Staring in silence, breathing finally from a very difficult week, my eyes are transfixed on the pink stone behind the alter. Time compresses into a single substance. A pink wall reminding me who we were and now are.

Sitting int he same pew we always claim, staring silently around as we waited on the service to begin, I thought back to the countless times I looked up at this breathtaking marriage of art and architecture, spiritually naked; focusing my attentions on the courage to work through all of this; to be a good father and husband; and to somehow return Brennan to us healthy. And just this past two weeks, there we were again, bumping up against the margins, praying that this fragile little bird is once again is able to fly.

The upper walls of the nave contain a series of 12 significant lines of biblical scripture, beneath 12 windows. As I scanned the massive room, thinking about the difference between my intentions today, and my intentions two months ago, I thought: what’s different? Just the week before I sat in this same seat as carefree and optimistic as the next guy. Why should my intentions be any different today than when my emotions are worn thin in time of crisis? Should the passion ever vary because of immediate circumstances, or is it that we all contain adrenaline-like spiritual reserves that kick-in special times?

Certainly my perception on things is much different now than two years ago. I am ever intentionally focused on things for which I should express gratitude, striving to build strength for the things which establish fear and uncertainty/ But should not the same passion which brought me here pleading only weeks ago bring me back again with a commensurate pool of gratitude and positive intentions for others who are in my shoes or worse?

As I looked almost in full circle, actually becoming conscious of the fact that I may appear a little strange to others in the congregation, with my head tilted almost all the way backwards, one line painted on the wall jumped out and bit me again. “The Kingdom of God is within you.”

Love, empathy, compassion, charity, the desire to serve. All of the divine human attributes are in there. And there was my answer. Its amazing how quickly our mundane plans and personal comforts overshadow the very things that we truly need, every moment of every day. Its amazing how a a child who has never masked capacity for for such things, through his cheerful and selfless perspective of his own misfortune is the living evidence I need that God, goodness, love, is inside of him. Therefore, it must reside within me.

I’ve only been wrestling with this week in and week out for close to 30 months. When is it going to come naturally. When, when faced to face with fear, will I be able to look it in the eye with confidence?

Perhaps foolishly thinking we may all get home for the golf tournament this year may have been a bit short-sighted, ambitious and probably a bit selfish. But we are making the adjustment, and will remain grateful daily for the fact that the gift we have in front of us today must be praised with unerring gratitude every moment of every day.

I am taking the Brothers home for a few days later this week. Thanks to the generosity of a good friend, we will get the boys home. I will return with Christopher Friday, but Nat will stay for the duration. He loves everything about the tournament and is old enough that we can cut him loose there on his own.

In the meantime, it looks like Brennan’s status for the near future is bound to St. Jude’s. Our Masters plans may be in front of the TV here at the Chili’s Care center or, If we’re lucky, we may be back at “The Bluff.” Either way we’re going to be with Brennan, and we are going to enjoy every luxurious moment.

On the way back form Church that day, the Fleetwood Mac song “Cant stop thinking about tomorrow” creeped onto the airways. Its a great line, but hearing it after my hour of hard core reflection I though that the line needs to read “don’t start thinking about tomorrow,” at least until you’ve embraced the one in front of you. Sure it’s great to have dreams and goals, but don’t let that eclipse the light of the given day.

I’m not suggesting that we stop dreaming. That is a major part of how we have maintained our sanity over these past two plus years. We dream pretty big around here, as it often get’s us through the day. I have many beautiful dreams and high hopes for Brennan and all of my boys. But I am trying not to lose sight of the fact that, when and if they are realized, they are all uphill from where we reside right now.

Think about tomorrow. Fight for it, but with reverence for the past and gratitude for today. Plans change, that’s for sure. Two transplant patients have died since Brennan was in ICU just over a month ago, reminding us just how darned lucky we are to have something to complain about. We still do not have the results of Brennan’s chimerisim from last week. Yesterday, the hemoglobin held, but he platelets had dropped again, to 100,000 (almost 50% drop in a week). Not the type of data that puts me at ease, but nonetheless, makes be hold tight what I have today.

I am trying to let the boy be my guide. I have faith that the transplant is going to hold. Even so, we have a long road in front of us, and Lord knows we’ve got more bumps and detours ahead. And when they appear, I need to know that the little boy inside of me can still guide me back to that peaceful place. Therein lies the key.

NTS