Posted Jan 16, 2011
And the wolf will dwell with the lamb, And the leopard will lie down with the young goat, And the calf and the young lion and the fatling together; And a little boy will lead them.
Some carepages are more difficult to write than others. This is one of them. Not due to any “bad news” per say. That in itself is relatively easy to communicate. It usually is what it is and speaks for itself. This one I point out because of the amazing tangle of emotions associated with what has been a very complex decision to grasp, meditate over and, ultimately, move forward.
Having chosen a path and moved forward, I can now say with all confidence that the agony and heartache associated indecision demarcates a wretched place. It is a place to tackle, not to dwell; nonetheless, it is a place one must navigate with conscious, spiritual intent. A microcosm of life itself, acceptance of the presence, with an eye toward the ultimate goal, pressing on with emphasis on the good and, for the rest, forbearance. Easier said than done, I know; but one thing we’ve learned living in this world is that there is no other way.
Another unavoidable march through yet another brutal and dense thorny patch. Every step is deliberate and strenuous offering no sense of progress until the other side reveals itself through the briars and leafless crags. Any decisions appears sharp and raged as the inescapable nature of the place itself, asphyxiating the mind, puncturing the heart and draining the spirit. With no clear sense of direction, it is impossible to distinguish this place as a crossroads. All options are painful to consider, excruciating to pursue. Any decision stands to render one scraped and bleeding. Commitment to escape is paramount. It is the most unfortunately familiar territory that there is. With deep sighs and prayers, you trudge forward, grinding step by step until light emerges. The path of refuge.
Having endured excruciating decisions before; fighting doubt, fear, anger, regret – you name it – there can be no greater weight than a decision affecting the fate of one’s child. When no option in front of you appears to be stronger than another, there is not much more you can do but pray and believe that somehow, something will show you the way. God fearing parent or not, if you find yourself in this place, you will pray. I can promise you that.
But through the strands of strayed patience and worn determination, there is peace. Deliverance, in this case (as with many) comes from a little boy. With our decisions affecting Brennan, he must be part of the process; he is the focus and central to everything. This is no time for the panicked parent to make decisions on their own. But therein lies one of the thickest parts of the tangle. How to allow a child to express his or her honest input into a matter which has the potential of damaging their will, the most sacred and powerful of resources at their disposal?
It is beginning to feel that we have come full circle so many times with regard to Brennan’s leukemia and our exhaustive efforts to cure him that we are physically dizzy. Fortunately, Brennan remains steadfast in his cheerful and positive demeanor, and in the strength of spirit that remains so intent in defying the odds.
But his little body has been through the ringer, more times than I care to count. A week ago, he appeared strong and on an upswing. Sunday, his fevers dragged him back down; and with him, little hope of salvaging his third transplant. Indeed since then, with every day of fever, with every test, and with every discussion, the list of options has become more narrow, and the urgency for decision more acute.
Every since our meeting with Dr. Leung last Friday, talk of a fourth transplant has dominated our minds and hearts. Monday afternoon we had a very frank conversation with him and one of Brennan’s PA’s, Lisa Beattie, regarding eminent choices that we must face with regard to Brennan’s treatment. Unfortunately, because of the intense fever this past week, he has produced so much of its own interferon to combat whatever virus is floating around in his body, that the intentional introduction of interferon to his system could be devastating; consequently, the option provided us last Friday is off the table. This left us with quite a choice.
It was this process that was so excruciating. With the facts in front of us, this was the bottom-line: a) wait and pray for for the aplastic anemia to work its course and for transplant three recover (which has been showing signs of activity, but eventually determined to be in a gradual tailspin. Brennan’s chimerisim as of last Friday was 70% donor cells), b) commit to transplant number four with Tara as the donor as the only viable option to eliminate the immediate threat of the aplastic anemia while maintaing a reasonable anti-leukemia effect (fyi… while I remain a viable candidate as a donor for this purpose, precedence tells us that introduction of more of my stem cells will simply introduce cells that are tolerant of the aplasia). c) Well… “C” would include quitting and going home. As our comrade in arms Stephen Chance said, “we did not come all this way to punt.” As long our our player has his heart and mind in the game, and as long as there are plays in the book, we are going to support him with every ounce of energy in our bone. Press On, as we say. Nonetheless, the medical team here, and at any other institution, is obligated to discuss palliative care with all families in our shoes as part of being fair and balanced.
As implied above, the urgency of the decision actually has not been related to any immediate threat of the leukemia, but to that of the aplastic anemia. With a month now passed since giving his body a chance to fight it on his own, it is clear that the only option remaining is transplant. A fourth transplant to fight the aplastic anemia would, in theory kill two birds with one stone, the aplastic anemia, plus restoring a healthy immune system with which to fight the leukemia.
On Monday, Dr. Leung indicated that the 4th transplant with Tara as the donor is the recommended protocol by the majority of physicians on his team. “It is not my choice,” he stated to us frankly. “Ideally, I want Brenna’s body to resolve itself,” he stated, “but now I am afriad that we may have passed the point of no return, leaving this, currently, the only viable option for Cure.” “Palliative care can be pursued as a means of preserving quality of life without the risks associated with Transplant,” he reminded us. “You guys have done more than almost any family I have worked with. But there are young men walking around today, miracles of fourth and even fifth transplants. The difference is that in all of these cases, they were older kids who refused to fight. You are in a situation of having a young child with whom this discussion is quite delicate.”
After Monday’s discussion, I do not think it requires much explanation to describe the enveloping weight of what we were to consider. In our hearts, we knew Brennan would ultimately tell us what to do. First and foremost, with regard to quality of life, we believe we have plenty of that, regardless of where we live or what activities we are restricted to. Even in the transplant unit, Brennan is active, pursuing his own little challenges with Legos, doing school work, joking with his brothers. We may not be home, but he is surrounded by love, here or anywhere. That is quality in our book.
With that said, Tara and I had been focusing our intentions on salvaging transplant number 3. Indeed, an ANC of 300 on Tuesday, and a steadily growing white-count, indicating positive lymphocyte activity had us relieved and floating high for a day or two. “Go ANC! Prayers are being answered,” was our mantra, Tuesday through Thursday. The sense of relief than Brenny may be rounding the corner at the 11th hour allowed us, I believe, to breath; delivering the space necessary to consider the seriousness of the options at hand, ask questions and give more deliberate and less panicked consideration of the 4th transplant, knowing that it was still likely.
Having just deleted about two pages of this Carepage describing the volley of fears, emotions and issues we have wrestled during those few days, suffice it to say that we prayed a great deal; we talked seriously and deliberately as a couple, we confided in experts here at the hospital, as well as with our priest, Jerry Ragan, back in Augusta. We talked to other families who have wrestled with the same question… the Chances, the Clarks. Then the weight started to lift.
With the small burst of confidence brought on by the ANC, Tara found a way to begin discussing this matter with Brennan. This, to both of us, and indeed the entire medical team, was the most important and delicate part of the whole shebang. How do you do it properly without introducing fear or doubt into the discussion? But as the ANC gave us the space to reflect with equanimity, Brennan himself relieved our burden and fear of damaging his spirit in any way.
That night, Tara took Brenny to the the bathroom before bed. Staying at the hospital alone with him (with me wide awake all night at the Bluff with the Brothers) there was a opening in the brambles. She told me that Brennan was in a pretty good mood and talkative, so she decided to talk to him mamo-en-mano. “Brenny,” she said, “how would you react if we told you that Daddy’s transplant had been set back because of your virus and you had to have another one?” She descrined him so clearly, I could see his little face. Eyes looking at the floor and lips pursed, he sat motionless for a moment, then shrugged his shoulders and said, “I think I’d go for it.”
I do not know how many hours I spent praying for the strength to handle this properly; strength for the boys and the capacity to make the right decision. But the answers started to reveal themselves to us on their own.
Confirmation of Brennan’s outlook on everything occurred the next day. Dr. Pilai later came into Brennan’s room to speak to Tara about a number of things relating to Brennan when Brennan stopped what he was doing and his ears perked up. “What are ya’ll talking about?” he asked. Tara explained, “You remember when I talked to you about a 4th transplant. And you remember how hard the third one was, how sick you got, going to ICU… We just want you to know everything if the doctors tell us that they think another one is necessary. What do you think about this?” she asked him again. With Dr. Pilai as witness, he said, “I want to do it. I want to do whatever it takes.”
He knows what is at stake. He’s a smart boy and has been in this fight too long not to read through the cracks. At the same time, as long as the reality of his circumstances contain realistic hope, that must be the context in which every other thing is addressed or implied. Knowing that we can look him in the eye and deliver this, he has taken us by the hand and lead us the rest of the way.
With Brennan’s bone marrow, CT scans and chimerism all in by Friday, we knew we had to pull the trigger. Fortunately, the leukemia has not progressed and remains at an acceptable level of suppression. But the chimerism test revealed 70% donor cells, indicating that the graph is headed in the wrong direction. There has been no mitigation of Brennan’s platelet transfusion dependence, the ANC continues to flounder. We knew where we were headed.
Friday was the day that pushed the issue over the top. That morning I did not awake to an alleluia phone calls from Tara telling me that brenny’s ANC had jumped up top 500. I just had a heavy feeling that this was going to be a heavy day. As we got ready for school, the Brothers were lovely. Nat made lunch for himself and Christopher and even made up his bed. On the way to school, and with a vocabulary test ahead of him that day, Nat gave me a very assertive lesson on the etymology of the word “civic,” its derivations and how we use it today, leading into a surprisingly interesting discussion about our duties to others as members of society. A man passed the car shivering and wrapped in a box, shuffling down the sidewalk with his belongings dragging behind him. Christopher asked, “well, it looks like these civic people forgot about him.”
We turned from Riverside Drive up Adams Street to make a left on Front, which is my usual route to their school form the Bluff. The municipal building and a parking garage reside at the northeast and southeast corners of Adams and Front respectively. To the west is the embarkation structure of the Mud Island tram, which runs in good weather to deliver visitors to and from the Mud Island park (a civic related enterprise with much ambition but also suffering from its own type of anemia.). On the south west corner is another parking garage. Outside of a patchwork wall of mosaics adjacent to the municipal building, the aggregate assemblage of these four corners represents probably one of the mist unremarkable locations in all Memphis, if not anywhere. Nonetheless, the act of rounding this corner as I did this morning with the boys discussing Nat’s vocabulary words, it dawned on me that this place represent above all others the single place in Memphis that triggers the greatest sense of Deja Vu for me.
It was at this corner turning north last year that I remember crying by myself about whether Brennan’s second transplant was failing. It is this corner, that I see, albeit facing the opposite direction, in my dreams of Memphis. The city is desolate. Buildings are empty, and I am alone with the exception of a sense of anticipation that I am there to meet someone.
That morning, I was awash with a genuine feeling of cognizance that the day was important. The feeling was not heavy, nor was it liberating in any way. It was real, like a single unexpected drop of cold water across my forehead.
That revelation came one hour later in conference with Dr. Leung when he presented the last bit of information we needed to move forward. “I am not going to push you one way or the other. A fourth transplant is a serious decision. Palliative care is a serious decision. Waiting for the 3rd transplant to miraculously recover, is a serious decision. But one thing I can tell you is that the longer you wait for transplant, and the longer Turner’s lymphocytes have time to partially recover, the more aggressive we would have to be with the conditioning regimen for transplant 4. This would mean more chemo, more toxicity and a risker protocol for Brennan.”
All transplants require conditioning, clearing the bone marrow for the donor cells. In the case of number four, “light” chemo would be used to obliterate my cells prior to introducing Tara’s. Being that Tara and my cells are a total mismatch (Brennan and I were only 1/2 match), linger cells of mine would be a dangerous proposal with regard to GVHD, etc. The more of my lymphocytes that are present to remove, the more chemo and the more toxicity Brennan would have to endure and the more that would theoretically survive to combat the newly engrafted cells (surefire GVHD). It is of paramount importance that Brennan’s risks be minimized. According to Dr. Leung, we were past urgent. It was time. If we commit to number three in the event that we commit to number four. He believes that in committing to number three for too long would create a point of no return.
Fortunately, all of the organ function tests still show Brennan to be strong. Prior to consideration of transplant, it is necessary to perform a detailed assessment of all major organs to establish their capacity for handling transplant. More often than not, the toxicity of prior treatments compromise things like heart and kidney function. More often than not, patients under consideration for even second transplants are disqualified for this reason. Brennan, once again, though, has defied the odds. Not only is he a viable candidate, many of his organ function tests show him to be stronger than he was prior to transplant number two. I was surprised to see how strong his lungs were after the pulmonary edema episode and intubation two months ago. Bottom line was this: waiting any longer could eliminate transplant number 4 as an option. It was time to commit, one way or the other.
For the last two nights and two days I have felt an amazing sense of gratitude for Brennan, for his fighting spirit and, selfishly, for him relieving my own internal burdens. He made the decision for us.
As of yesterday morning, conditioning for transplant 4 has been underway. Brennan tells us he wants to keep fighting. Indeed Friday morning before the tests were all in and a decision had been made, all of the uncertainty, conferences in the hallway with mommy and daddy constantly leaving the room to “talk to the doctor for a while,” topped off with Brennan’s fevers and generally just feeling lousy, was making him afraid.
“What’s wrong Brenny,” Tara and I asked him as he cried in bed. “I don’t know,” he said I don’t know what is happening. It makes me feel like I might not survive.”
“Well you can stop worrying about that, my little man,” we said, looking him in the eye. “We are here with you every step of the way. Your brothers are with you, your family and friends are with you and the doctors have a good plan for you. You are in the game. So let’s forget about all that”
WIth tis little pep talk he somehow managed to smile through his own march through the forest.. And three hours later, when we told him we were committed to number four, he too has found refuge through his own personally struggle through the crags of doubt. He has a game plan. We have a game plan. The doctors are more confident now than when they proposed this thing a week ago (again being majorly encouraged by his strength as confirmed by the myriad of pre transplant assessment.).
As Tara and I signed the consent forms to pursue the protocol, I realized that Brennan was about to spend his 3rd birthday in a row in the hospital. Mentioning this to the room in general as I signed and dated the documents, Dr. Leung said, “well then we will look forward to celebrating the next 17 birthdays outside of the hospital.”
We are on yet another path. But the goal has not changed, the path is clear, our intentions are pure and the loving and hopeful environment surrounding us could not be stronger. That part will never change; so as we march forward, knowing that more brambles and challenges lie ahead, regardless of one’s direction, our compass will mark the way.
Today we celebrate Christopher’s birthday. We will bend the rules and all sing happy birthday to him in Brennan’s room. Brennan’s birthday is next Friday (21st), marking the second anniversary of life with cancer. Tara’s birthday is the 31st. We have a lot to be grateful for every January. This month we reconfirm our family’s commitment to one another with more assertiveness than ever. Today is a blessing. Tomorrow will be a blessing when it comes.
These next few weeks will be hard, but we pray that with the struggles of each day the blessings shine through. We are grateful for each other. We are grateful for Brennan’s spirit and yet another plan to CUre him of this disease. We Press On and are trustful and confident in transplant number four. Its about time we give a girl a shot.