Day +11: Walking by Faith
February 21st, 2011 by Turner Simkins
“We walk by faith, not by sight.” 2 Corinthians 5:7
It is Friday morning. I am sitting in the ICU with Brennan and Martha listening to Steve Baughman’s rendition of It is Well with My Soul. Steve arranged this music on the guitar just for Brennan. Today, Steve’s beautiful guitar is accompanied by the syncopated hum and beep of the ventilator and fourteen medicine pumps attached to Brennan. This unlikely rhythm section joins with the guitar to deliver a sense of peace to the room and a multitude of medicines into B’s strong, little being. I close my eyes, taking it all in, and think to myself, “Amen, brother. It is well with my soul.”
The pervading feeling in Brennan’s ICU room is one of positive confidence. Back in September, when we returned to Memphis for Brennan’s third transplant, I recall lying next to Brennan in the Lackie’s pool house the night before he was admitted onto the transplant unit. We were watching Fan vs. Wild on the Discovery Channel. The host, Bear Gryslis, took two fans into the Canadian wilderness for their ultimate survival challenge: to overcome their own fears by trekking down dangerous glaciers and crossing a frigid glacial river. Predictably, one of the fans freezes at the river crossing. It was fight or flight time. Bear, seeing his frozen fan across the river, looks him in the eye and says, “There are three kinds of confidence: low confidence, over confidence and positive confidence. I need you to cross this river now with positive confidence.”
Bear’s phrase positive confidence jumped out at me. Just five days before, I had the same experience at Mass. In his invitation to pray the Lord’s Prayer, the priest says, “Now let us pray with confidence the words Our Saviour taught us.” With confidence. Wow. What a way to pray. What a way to cross a raging river.
A few days later, on Day +2 of transplant 3, I was reading a beautiful book written by an Episcopal nun, Ellen Stephens, Vessel of Peace, A Guide for Pilgrims of the Spirit. In her book, E.S. writes, “The goal is to know and to live in our limits and yet also to walk in the confidence of spiritual freedom. Not in certainty – but in confidence: con fido, with faith.” Vessel of Peace, A Guide for Pilgrims of the Spirit, Ellen Stephens, p. 70.
They say your Word of the Year picks you. Confidence, from its origin con fido or with faith, was picking me for 2011 and preparing me for the currents of the river before me.
Thus, almost four months later, I found myself walking by faith and not by sight into the ICU with Brennan and Martha on Wednesday afternoon.
You would be so proud of our brave, little warrior. I have never seen someone fight with such determination and with such confidence. To say that the last 4 days have been nothing but a struggle for our guy is an understatement. Yet, he faced each difficulty head on and determined to come out on top.
Tuesday night and Wednesday were grueling: fever; unceasing nausea; vomitting; dry heaves; and shortness of breath. Throughout it all, Martha and I could see Brennan whispering to himself, “I can do this. It’s okay.”
It all started Tuesday afternoon. Brennan’s nausea continued to grow as did his fever – climbing to 104 only to be reduced by a combination of Tylenol and cooling blankets. Then, the breathing issues started. Brennan rallied, as usual, and we stabilized his breathing with a little oxygen support. Even though his “numbers” looked good, he was working way too hard to breathe.
Wednesday, it all caught up with him, and as things do in this world of childhood cancer, things moved at lightening speed.
Throughout it all, Brennan never once complained. He never once said “I hate cancer.” He never once said “Cancer stinks.” He never once said “Momma, this is too much. I can’t do this anymore.”
Instead, he quietly told himself “I am strong.” “I can do this.” And finally on Wednesday morning he said, “Momma, this is the hardest day of my life.”
At that point, the nurse decided it was time to move Brennan to the ICU to better support his increased oxygen requirements. Within 15 minutes of arriving in the ICU, it was apparent that we were not going to be able to support Brennan’s increasing oxygen demands without sedating and intubating him.
The difficulty of this decision was compounded by our quarantine from Turner and the boys who returned to Augusta for a quick visit just the day before. Thankfully, Turner, Nat & Christopher each spoke to Brennan over the phone before we sedated him, and Aunt Martha was able to talk to him and hold his hand while I discussed the options with the doctors and made a very quick decision. Chest xrays later revealed the wisdom and timing of this decision. Brennan’s lungs were indeed flooded with fluid believed to be caused by a combination of pretransplant low level bacterial or fungal infection, cytokine response and engraftment syndrome all of which kicked into gear at about the same time. Talk about a perfect storm.
Over the course of Thursday morning, we stablized Brennan’s lung/fluid situation and weaned him down from 100% to 50% oxygen requirement. Around mid afternoon, a pulmonologist from La Boneur performed a broncoscopy. The fluid sample is being analyzed for bacterial, viral & fungal infections. It could be up to ten days before we know the results of these tests.
The hemorragic cystitis in Brennan’s bladder has progressed again over the last several days. It kindly waited its turn for help on Thursday until Brennan recovered from his broncoscopy. Thursday night, a urologist from La Boneur arrived, cleared the blood clotting off the flow from the bladder, and inserted and installed a bladder irrigation and catheter system. Brennan responded well.
His heart, lungs, kidneys and liver all show therapeutic damage from the AML and three previous transplant treatments. We knew about all of this going into transplant #4. Thankfully, all of these organs continue to function as best they can through this time.
Late Thursday, Dr. Leung stopped by to visit Brennan and deliver some good news regarding transplant #4. Brennan’s WBC (white blood cell) count was 1.2, and his ANC was 100. The blood chimerism taken Monday, Day +7, revealed 100% donor cells!!! Dr. Leung says the graft is in and couldn’t be stronger. He believes that as this new immune system continues to grow, it will help resolve many of the underlying issues like the lung infection and the hemohragic cystitis.
We started today, Friday, with the good news that Brennan’s white blood cell count was up to 2.6 and his ANC up to 500!! As our cute fellow Dr. Wendt commented this morning, “At least Brennan is not going through all of this trauma for nothing. The graft is definitely taking.” Thankful confidence.
Later in the day, Brennan was visited by Dr. Leung, Dr. Rubinitz and Dr. Shane, one of the Pharm. D.’s from the transplant team. Shane arrived armed with a joke book Brennan had given him on Tuesday. Shane pulled up a chair next to Brennan’s bed for some guy time. Martha and I quietly faded into the background, and Shane started.
“If atheletes get atheletes foot, what do astronauts get?
Tie your own shoe laces.”
Either Brennan thought the jokes were really funny or really bad because his heart rate and blood pressure began to rise. We all teased Shane about stirring B up. I must admit that we all thought the jokes were bad. Even Shane remarked, “Brennan, I think we should get your money back for this book. Half of these aren’t even jokes!”
So, we retired the joke book and started to work on making Brennan more comfortable. Tylenol. Cooling blanket. An extra boost of pain medicine. Slowly, his heart rate and blood pressure returned to normal. I took a little nap in the parent room while Martha and the nurses kept Brennan company and restarted the guitar playlist.
The plan and prayer is to continue to give Brennan’s organs the support they need in the ICU to get through this very acute time. The next five days will be very critical. Dr. Leung says that Brennan will reveal to us by the end of the weekend how much support he needs and for how long. Everyone is extremely hopeful and encouraged around here.
It is almost midnight now. Aunt Martha is back at the Target House, and the guitar music playlist has finished on the iPod. Brennan’s lungs seem to be clearing more gunk. He is trying to help himself by breathing over the ventilator a bit. The ICU team is carefully monitoring and tweaking everything. I just learned that his ANC is 1600! We haven’t crossed the river yet, but I can see a safe landing spot on the other side. I take a deep breath and add my own humming to the room.
We walk by faith, and not by sight;
No gracious words we hear
From Him who spake as man ne’er spake;
But we believe Him near.
Thank you all for your continued prayers. Brennan has a very strong spirit and desire to win this battle and the overall war. I believe he is doing just that with the Grace of God and your prayers. Please continue to visualize a strong and healthy boy who is reunited with his brothers again soon!
XOXO + Press on,
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