Press On, Indeed

February 26th, 2011 by Turner Simkins

“I know God will not give me anything I can’t handle. I just wish He didn’t trust me so much.”
Mother Teresa of Calcutta

About a week before Brennan’s birthday, Tara and I stood in the parent room as Dr. Leung and Brennan’s nurse practitioner and friend, Lisa Beattie, revealed to us that Brennan’s third transplant had failed and that he had only two options. Prior to even mentioning the details associated with the highly risky and almost unprecedented fourth transplant, they wanted us to know that we needed to understand that we had already more than fulfilled our duty as good parents. In this context, the majority of our conversation revolved around hospice, as both a perfectly acceptable and appropriate path of care and as a means of providing a humane means of respecting the last valuable days of life. In other words, Brennan’s condition at that time was so dire, and the risks associated with a fourth transplant so high, that some members of the transplant team concluded “enough is enough.” Even Dr. Leung told us point blank, “I tend to agree with those members of the team who are not in favor of further treatment; but, the the majority of the team has so much faith in Brennan and loves him so much, that, if you agree to move forward, I am afraid I have no choice.” He already had the protocol for transplant #4 in his back pocket.

I think I had a Carepage or two devoted to the agonizing decisions in front of us over that grueling and brutal week. Looking back, I believe that Tara and I took so long to make a decision (we were just days out of feeling optimistic about transplant #3 rebounding, with Brennan’s ANC increasing from zero to 300 over the weekend) because, unless presented with a situation in which there were no other options, we never considered anything other than Pressing On. It had been out mantra, for crying out loud’ and, now we have experienced and respected members of the team telling us to pack it up?

Our hope was critically wounded as a result of that conversation. I remember looking back through the glass that separated the “parent room” from the patient room. Nat and Christopher were sitting on the couch across from Brennan’s bed, all of them watching Disney. I was starting to cry, and as Brennan’s eye caught mine, I quickly stepped back so that he could not see my face. “Looks like we’ve got to try hard to find our game faces before going back in that room,” I blurted as much as a means of telling the doctors that we had heard enough of the conversation as otherwise.

Today, however, there was no reason to hide our feelings. Walking into the clinic from a “day-date” together (Margie Lackie had been sitting with Brennan during the day offering us some rare time to enjoy together.), Tara and I entered the BMT floor to see Lisa Beattie grinning from ear to ear. “Has Dr. Wendt spoken to you yet?” she asked, looking like the Cheshire Cat and referring to Dr. Suzanne Wendt who has been the Fellow assigned to Brennan’s case. Tara had actually received a call earlier as we drove between yoga and lunch from one of Brennan’s greatest fans, and the other Nurse Practitioner on duty, Susan Shelton, to tell us to look forward to a call from Dr. Wendt. She sounded very much elated, revealing only that Dr. Wendt had some news we would be very interested in.

Perhaps it was Lisa’s own recollection of our conversation in the parent room that day in January that contributed to her seemingly uncontrollable sense of joy about “the news.” But held to the same pact of secrecy as Susan, Lisa exclaimed, “To heck with it… Brennan’s MRD showed zero percent leukemia. Everyone on the team can hardly control themselves!” she exclaimed.

We had a feeling all day, but to hear those words…. There is no means of describing the response other than to say that we were all grinning and crying just like Lisa.

Ever since Brennan made it out of ICU two weeks, ago, everyone on the team has been glowing about Brennan’s resilience and determination. Every individual who has been even remotely associated with Brennan and his care has been glowing in his presence. Regardless of any previous doubts about this transplant, everyone here has conducted themselves with nothing but both the highest level of respect for our decisions and commitment for his full recovery, representing to me and Tara the most genuine testimony of true patient, and family, care.

Indeed, at its root, it is both much more and much simpler than that. It is love. It is their love for him, manifest in their determination to return him home to his family and friends, healthy and happy. And it is his love for us all which has defined his determination to beat the odds yet again.

If you were ever to write up a recipe for “a miracle,” this might be a good start. A lot of sophisticated decisions have been made a long the way, and a lot of extraordinary medical risks have been taken. But when you get right down to it, you’ve got army of folks who love this kid and a kid who loves them back. God’s grace is always present within this framework.

The way we see things now is that it is a very real possibility that Brennan could be in Augusta and playing with his dog Lucky by Day +100. A lot of pieces have to come together in the meantime, however. He has to start eating and gaining weight (a lot of it). He has to start walking. His blood pressure must be managed. He has a demanding rehabilitation in front of him. Dr. Leung tells us that “at all costs he is to avoid exposure to viruses of any kind,” meaning that for sometime now, he will effectively live life as “boy in the boy in the bubble” without the bubble.

As it stands now, it looks like he will graduate from inpatient to outpatient status (visiting the clinic daily from Target House) on Monday or Tuesday. Just to think…

He is as fragile as fragile can be, and we’ve won too big of a battle to lose ground on the things we can control. But we’re used to this drill and will take it all day long. And through each painful step along the way, we must respectfully acknowledge the grace which delivered Brennan to this point, and which will hopefully inspire others families to keep Pressing On.

A while back I mentioned that I begged God after Brennan’s first relapse to just let us have one more Christmas together. He delivered that, and I wanted more.

At this point, as the father of Brennan, I don’t think I can ask for much more, although you can bet your bottom dollar I am on my knees all day every day that this remission is for real. But we know the reality of it all, and we understand the long term risks associated with the toxic treatments to which these kids are exposed.

So, I don’t think that this gift-horse will mind if I look him in the mouth when I ask that the inspiration of today carries over for others. That the same love and determination that created this miracle serve as a new foothold along this steep path that so many face until there is a Cure. We Press On in large part because of others. May others Press On because of this victory that we celebrate today.

Welcome home Patrick! We Press On because of you, my friend.

NTS

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