November 28th, 2011 by Tara Simkins
“Don’t believe what your eyes are telling you. All they show is limitation. Look with your understanding, find out what you already know, and you’ll see the way to fly.”
Three weeks ago. November 2, 20011. Augusta, GA.
“Hey, Turner-san. Colleen (Dr. McDonough) and I just talked. It’s time to move this boy to Memphis.”
“Don’t worry. I think we have a window, and we need to take it. Everyone is in agreement that Brennan’s graft versus host disease has finally declared itself. We need to be in a pediatric transplant center to treat this, and Brennan is strong enough to travel today.”
I could tell Turner was worried. Really worried. He missed Brennan, and Brennan missed his Daddy. Neither he nor the other two boys had seen Brennan in 10 days due to the quarantine imposed as a result of Turner and Christopher’s colds, and I just dropped the “and they are going to transport us to St. Jude via Air Med tonight” bomb on him.
It all started mid October. Brennan caught a cold. A nasty cold, the kind that lasts for 2 weeks. But just as Brennan’s doctors had warned for the last two years, that is all it took to trigger a series of events in our young warrior’s little body which quickly landed him in the hospital.
On October 22nd, Turner and I checked Brennan into the Georgia Health Science’s (formerly MCG) Children’s Medical Center. We were supposed to be in Hunt, Texas celebrating Chloe Lackie’s wedding. Chloe, like the rest of her family, adopted the Band of Brothers 2 years ago, and her engagement has been a bright spot in our lives. Chloe lives in Dallas, and during her visits home over the last year, the Band was usually in residence. While Chloe and her mom, Margie, sought to capitalize on these visits by dedicating a significant amount of time to wedding plans, they never allowed wedding plans to interfere with the Bands’ primary focus: capitalizing on fun. Without fail, Chloe and Margie graciously would barricade themselves in the living room guarding the florist and discussing arrangements for the big day while the Brothers ran through the house shooting marshmallow guns and playing indoor hide and seek. Two activities sanctioned by Brennan’s doctors and Mrs. Margie, who is known to enjoy a good marshmallow shoot out!
We were scheduled to leave Augusta early Friday morning. Mimi and Pat Pat were all set to take care of the boys during our two nights away. Everything was going according to plan until Thursday afternoon. Brennan and Turner were sitting in the carpool line waiting to pick up the Brothers when Brennan announced, “Daddy, I think maybe you and Mommie should stay with me this weekend.” He knew something was brewing, and if there is one thing that we have learned over the last 3 years, Brennan knows his body.
So, instead of checking into our accommodations in Hunt, TX, we checked into the CMC in Augusta, GA hopeful that we could ride out the storm at home.
Eight days of 102+ fevers. Multiple IV lines inserted and replaced every other day to administer the necessary fluids and meds since Brennan no longer has a central venous line. Nightly 4 a.m. needle sticks for blood draws.
A break in the fever. Whew. On no. Is that a rash? Yep. The the kind that itches so bad it makes you want to scratch your skin right off.
Then came the nauseau, vomitting, hemorrahgic cyctitis (sloughing off of the bladder wall) and illyitus (fluid in the colon walls). Discomfort. Pain. Restlessness. But, if you asked Brennan, he would tell you that the worst part about it all was he couldn’t see his Daddy. Four days into this marathon, between visits to the bathroom, he quietly sent a text to his Daddy. “How are you, Daddy? I hope you feel better today.” Amazing.
My hope for riding out the storm at home quickly morphed into the hope that we could accurately predict and navigate this series of seemingly disconnected but concurrent storm systems bombarding Brennan’s body. Much like a meteorologist prognosticating as best she can based upon the objective information which presents itself, I found myself assessing, analyzing and guessing,but not really knowing, what Mother Nature might throw at me, or more accurately Brennan, next. The one recurring question: Is what I am seeing evidence of graft versus host disease or is it something else?
Trapped in this endless game of Stormtrackers, coupled with a severe lack of sleep given Brennan’s need to relieve himself every 20-40 minutes around the clock, I found myself exploring yet another part of the ocean looking for underlying still water, diving to new depths of faith and calm, and building on what I have learned surfing the seas of uncertainty these past three years. Yet, still, every now and then a wave would hit me. And I would crash.
One week into our stay at the CMC, I walked straight into such a wave. I am always unsuspecting of these waves. Which I have decided is not such a bad thing. Think about it. Waves are going to come and go. Some gentle. Some bringing things you need. Some washing things away that you don’t need anymore. Some tidal sized. Some tsunami sized. We can’t control any of them. Hopefully, we come up for air, pick the seaweed out of our hair, snort the salt water out of our lungs, breathe again and catch another one. Knowing it will come again in some form. Trusting we will be able to deal with it when it does. But intentionally not muddying the still waters with worry.
As my friend Tamiko Toland recently wrote on her blog ( www.colinlovestractors.com) chronicling her son Colin’s battle with anaplastic ependymoma, an aggressive pediatric brain tumor:
“It’s more like taking the awareness of undesired consequences and compressing all of them into a token and putting the token in your pocket. That token sits there and you know it’s there. Occasionally, you worry it with your fingers, but not so much that you obsess about it. You can take it out, add information to it, but always put it back where it belongs.
The token isn’t a bad thing. It serves as a constant reminder, both of the need to remain aware and the ability to simply say, “I’ll deal with whatever comes when it is time but no sooner.” The token might seem a little heavier or more awkward at times, but facts are facts. Needless worry increases suffering, but it doesn’t change the outcome.”
I knew that worry was useless, but my stomach kept churning. What Brennan is fighting today is not leukemia. Thankfully, his 4th graft remains strong, flexing its muscles against the storms raging inside of him. No, this is not his body fighting leukemia. This is his body learning to live with my immune system, his 4th transplant. This is the next phase. The CURE. The part you hope you get to, and when you get there, you pray will be gentle.
I found myself wondering what on earth Turner and I have done to this poor child.
This thought not only produced more worry, it came with a little bonus gift of self flagellation. I could whip myself from now until the end of time, but that was not going to change a thing, and it certainly wasn’t going to help me help myself or Brennan. And in my heart, I knew this thought wasn’t true. I knew that every decision we made came from a place of extreme love and prayer. We had asked God to lead us, to show us the way. We told Him that we would trust Him and believe in Him. We had promised to Love no matter what happened. The most powerful promise we had ever made.
Remembering the source of all of our decisions and actions on this path, I knew that we had done everything we could to provide Brennan with an opportunity for life, more life. In doing so, we had exposed him to as much toxic treatment as anyone has ever endured. We know his heart, his lungs, his kidneys and his liver have all paid a price. What is that price? We don’t know.
Some people may say that he will never live a “normal” life. But I ask what is a normal life? Is it a life defined by what we know? Do we know he will have limitations in his life? I guess so. But don’t we all have limitations in our lives? Mine may not be a heart that functions at 25% of “normal,” but yours might. And if so, what does that mean to you?
I found myself going around and around. Coming up for air. Being pulled down by the undertow. Again. And again.
With each breath, I heard a little voice. It was quiet at first. So quiet that I couldn’t quite make it out, but I knew that I had to keep coming up for air despite the waves so I could hear the message. There it was. Waiting. A gift. From Love.
Brennan is limitless.
We are all llimitless.
I am limitless because I am of God.
You are limitless because you are of God.
Brennan is not defined by his perceived limitations. Brennan is here to remind us all and teach us all about the possibilities in life. What we can do. He has certainly been doing this for the last 3 years and while our current issues are not issues dealing with leukemia but issues arising out of the CURE, he will continue to push the limits of possibility showing us what he can do with what he has been given in the time he has been given.
The question is not “What is the price for this additional time?”
The question is “What are the possibilities previously undiscovered that can be revealed during this time?” “What will grow from this seed planted in Love if we allow it to grow?”
Let Brennan run his race. Don’t stop believing and trusting now. As a friend of mine Kira DeRito (who has a great blog at www.thethinkerfixer.com) suggested recently, to stop believing and trusting now is nothing more than an innocent sort of arrogance. A belief that I can do a better job holding the reigns. “Yea God, I trusted you last year in the darkness, but what on earth was I thinking?” It seems almost laughable writing about it now.
And with this shift in mindset, this return to trust and understanding, I returned to encouraging the possibilities within Brennan. Who sitting on the toiliet in all his sweetness looked me straight in the eyes and said, “I get all that Mom, but right now I feel like C.R.A.P.” Gotta love this kid.
The Flight: A Welcome Distraction
By the time we made the decision to fly to Memphis, Brennan was exhausted. And so was I.
Thankfully, we were at the end of the quarantine with the brothers, so Turner and I decided that everyone would come to the hospital for hugs and good byes before Brennan and I left via Air Med.
To say the Air Med team was a welcome diversion is an understatement. There we were all piled up in Brennan’s room, the five of us plus Mimi and Pat Pat and Pops, heavy with uncertainty and waiting for our Air Med escorts when in walk 3 guys and a girl in jumpsuits. The light pouring in from the hallway lit them from behind. You could almost hear the theme music. Christopher was mesmerized. Airplane pilots, army nurses, jumpsuits tatooed with emergency medical supplies. You could feel the mood shift in the room and the conversation followed.
The crew was returning from St. Louis where they had dropped off a little boy from Albany, GA who needs a double lung transplant. Half way back to Augusta, they received the call about Brennan. Dan Gates, the crew leader, introduced himself. He and his family have been part of the faithful St. Mary on the Hill prayer warriors. When he learned this transport was for Brennan, he called his family and told them not to wait dinner on him tonight. He was going to make one more trip today. To Memphis.
The kindness of the crew did not stop with Dan. Each man went out of his way to make Brennan as comfortable as possible. The flight was not easy on Brennan. He was really tired and itchy. His gut was killing him, and he had to empty his bladder at least 6 times during the two hour trip, but he managed a smile as he reported on Christopher’s shenanigans in the ambulance ride.
“Mom, you are not going to believe what Christopher asked the nurse while we were riding to the airport.”
I could only imagine. Brennan didn’t make me guess for long. He gestured, flipping his head back and casting his eyes down to Chris’ (the 6’4” Army nurse’s) lower thigh. ” You see those?”
I spotted what looked like a pair of mammoth scissors, “Yep”.
“Well, Christopher asked him if he had ever killed a man with those!” Rightous indignation tinged with a bit of disapproval ran across Brennan’s face and through his voice.
I looked at Chris. He smiled and shrugged at me, and then he looked at Brennan, “Man, you sure have your hands full with your little brother.”
Brennan replied, “I know.”
I said a little prayer of Thanksgiving. Christopher in all of his craziness remains one of the brightest spots for us all. He never fails us. He continues to surprise and sustain us with his sheer strength of personality.
Back in the ICU
Finally, we landed at the Wilson Air Terminal in Memphis, deplaned and boarded an ambulance, along with our flight crew, for St. Jude’s. Due to a full patient load in the Chili’s Care Center, Brennan was admitted to the ICU step down unit instead of the transplant unit. This was preferred to the leukemia floor for his care.
We said our good-byes to our crew and settled into our new room while the medical team began their assessment.
It was 10:30 p.m. c.d.t. Four hours later at 2:30 a.m., the doctor on call sat down with me to review Brenann’s game plan developed by the transplant fellow on call, Alistair Abraham. Everything always comes full circle. Alistair, being a third year fellow last year before declaring his allegiance to the transplant team, was on call each of the three times Brennan was admitted to ICU. Of course, he was on call to develop the plan that would be followed for the next 8 hours upon Brennan’s admission to the ICU this time. The nurses quickly began pulling the thirty-five vials of blood necessary for all the tests Alistair ordered, everything and the kitchen sink, in the hope of identifying whatever viral, bacterial or fungal source might be triggering Brennan’s graft versus host disease. The plan was simple. Identify what we can. Treat it and control the gvhd. Of course, there was always the chance that they would never identify anything and control would illude us.
Over the course of the next several days, Brennan endured a skin biopsy, an endoscopy and a colonoscopy. The results: stage 2 gvhd of the skin, stage 3 & 4 gvhd of his GI tract and gvhd of the liver. Stage 1 is considered moderate. Stage 4 can be life threatening.
In addition, Brennan’s bloodwork confirmed adnovirus in his stool, BK virus in his urine and blood and HHV6 in his blood. You may remember that HHV6 is the herpes virus that wiped out his 3rd graft and landed us in the ICU on a ventilator for the first time almost exactly a year ago to the day.
Thankfully, by the time we received these results, Brennan was responding to his treatments. His response was slow, but steady, and we steadied our focus finding comfort in our understanding and pushing back the demons of what a growing HHV6 virus could mean.
A few tweaks were made to his medicines. Turner and I dusted off our nurses’ hats. Just like riding a bike, programming TPN pumps and food pumps, mixing the necessary concoctions, praying over them and administering them, with faith of the hope they continued to promise. It all came back with confidence and ease. Another grace. We knew we could handle our part, and Brennan was handling his part.
Our gifts are many. The boys have schools and teachers that do everything they can to coordinate with one another and provide a loving learning environment. We have a support system in two cities that make living in either place, and sometimes two places at once, easy. One of the many examples is a text I received Friday, November 4th just two days after arriving in the ICU from one of our many guardian angels, Amanda Wilson in South Bluffs. Like so many others, we know Amanda only because of this journey.
Amanda had read Turner’s Carepage update advising of Brennan’s transfer to St. Jude and sent me this text, “Just had lunch with Carrie Hanlon. She wanted you to know that no one is in the [South Bluffs] house right now.” Within 48 hours after a weekend campout at the Lackies’, the Boys and I were settling back into our old digs in South Bluffs getting ready for school on Monday at Maria Montessori while Turner and Brennan, who was discharged from ICU late Sunday night, were settling into the Memphis Grizzlies House on St. Jude’s campus. No one skipped a beat.
Today. November 23, 2011. Memphis, TN.
Today, we celebrate Nat’s 12th birthday. Together. In Memphis. His greatest gift: both of his brothers being available to celebrate his birthday for the first time since he was in the 3rd grade.
As for Brennan, he is markedly improved. Lisa Beatie, one of his nurse practioners glowed yesterday as she reported all of the improvements we are seeing in his blood work. This information is reinforced by the Brennan who started to re-emerge this weekend. His gut and bladder are healing, his rash is fading, his appetite has returned, he is sleeping better and he even ditched his wheel chair last week!
The bubble, however, is in tact. Dr. Leung’s instructions are crystal clear: be vigilant. The slightest contact with even the most seemingly innocent germ is to be avoided at all costs. Brennan is extremely vulnerable right now because we have coaxed the graft versus host disease into submission by suppressing Brennan’s immune system back to an immediately post transplant state.
Through it all, we continue to watch Brennan break new barriers and encourage other St. Jude’s friends and families as they undergo 2nd transplants and contemplate 3rd transplants.
I have heard more than one courageous young man remark, “If Brennan can do 4, then I can do what I need to do.”
And if we all Press On believing in the possibilities, we will reach the day when there is a CURE, a CURE that doesn’t involve its own issues. Until then, we honor and remember Cassidy and Carissa. We encourage and love Patrick, Cameron, Chase and Andre. We celebrate Colin, Markell, William, Duncan and Mya’s victories.
Tomorrow. November 24, 2011. Thanksgiving: We must risk delight.
These last 5 weeks certainly have allowed us the opportunity to reflect on where we are and where we have been.
Life in Memphis is pretty simple: Support Brennan. Love one another. Gratefully accept the gifts each day brings.
Tomorrow marks our third Thanksgiving spent as a family in Memphis.
For now, the token is back in our pockets. It is getting lighter as Brennan receives the treatment he needs to manage his graft versus host disease.
And we continue as Jack Gilbert writes in his beautiful poem A Brief for the Defense to risk delight throughout it all in the ruthless furnace of the world:
“If we deny our happiness, resist our satisfaction,
we lessen the importance of their deprivation.
We must risk delight. We can do without pleasure,
but not delight. Not enjoyment. We must have
the stubbornness to accept our gladness in the ruthless
furnace of the world. To make injustice the only
measure of our attention is to praise the Devil.”
While we may not be with so many of our friends and family this holiday, please know how much we love you all. Each of you means so very much to us. We would not be where we are today without you. You have believed in Brennan with your heart and your eyes have followed. Thank you, and if I may be so bold as to ask you to continue to hold Brennan in that place where possibility becomes reality. We plan to keep flying.
Again, I turn to Tamiko’s recent blog and share her valediction which captures my thoughts and feelings so well.
“With Thanksgiving approaching, we are again awash in gratitude. We are of course thankful for the beautiful boys that brighten our lives but also the many gifts that cancer has brought to our door: friendship, fellowship, meaningful purpose, and a brilliant pole star to help navigate life.”
XOXO + Press on,