December is a month filled with preparations and anticipation for everyone. There are cookie exchanges, packages, cards, holiday parties and every manner of excitement for the end of the year celebration, however you happen to name it. The Ramers celebrate Christmas, but this year our preparations have been for a very different sort of event.
We have been waiting with diminishing patience and increasing anxiety to learn if the T cells that researchers at MD Anderson collected last month had sufficiently grown. The call came a little over a week ago, that they were successful. Chemo would begin on Christmas Eve and the genetically engineered T cells would be administered five days later.
Our preparations and travel arrangements were hastily made, and filled with gratitude because Brent now has circulating blasts. It becomes a race in AML, to not have a catastrophic event as the disease overtakes the marrow, because it reduces the power of the immune system. Infection becomes increasingly dangerous. Infection is the catastrophic event we most fear.
The day before we were to fly to Houston, Brent developed a cough. I held my breath.
Overnight, only hours from our departure, he required more oxygen. I wanted some for myself.
As the medical transport team arrived before dawn, Brent went into respiratory distress. Heartbroken and despairing, I asked that we fly anyway, knowing that the only way that Brent might live, is if he could get to these cells. I write this from an ICU in Houston, where Brent battles both leukemia and septic pneumonia. They have sedated and intubated him, giving his body time to fight the infection with the help of strong medicines.
While I knew that we would spend our holiday in the hospital, I did not anticipate that it would look this this.
We are so grateful for our new team of physicians and nurses at MD Anderson who are working hard to help Brent manage his dueling sharks. While still very ill, this is clearly where he needs to be. Our whole family is now here. He is surrounded by love.
While the path ahead is filled with uncertainty, I remain ever hopeful. Perhaps with good reason:
We learned on this day in 2011, that Lauren had a sizable asymptomatic brain tumor. This was devastating news for Dan and me, but 9-year-old Lauren called finding it a 'Christmas Miracle.' Two years ago, we managed to get Brent home for Christmas, nearly in remission, contrary to every medical expectation. Last December, we had evidence of a successful skin graft between Alex and Brent, something that has never been accomplished before. This Christmas, we are hoping for another fantastic and improbable gift, better than anything available from Amazon.
I am grateful to be here, listening to the whoosh of the ventilator, waiting for the slow healing. I have faith that it will come.
The Ramers welcome your prayers and send you our love this Christmas.
Saturday, December 23, 2017
Thursday, December 7, 2017
Unexpected and unlikely
I have been thinking a lot about cells. Particular cells. Special cells that, not unlike the RamerNation, have taken an exceptionally unusual journey.
The DNA for the cells were created over 20 years ago. The ancestor cells grew in my son Alex, dividing and carrying on in the most normal of ways. There was no suggestion, for well over a decade, that they would do anything special. It was assumed that they would live out their time quietly in the suburbs.
Two and a half years ago, some of Alex's cells were scooped up and abruptly transplanted into a foreign war zone, where they tried to establish a new life. In Brent's body, these cells struggled and fought with the hostile natives, but they quickly became overwhelmed.
By Thanksgiving of 2015, they were on the verge of capitulation, when another wave of refugee cells arrived from Alex, this time with a great number of mercenary T cells. This influx of special help turned the tide in a remarkable way, beating down the leukemia to undetectable levels.
The conflict continued over then next 18 months, but open hostility was downregulated--perhaps to something more along the lines of aggressive political maneuverings. We watched from afar, really hoping that leukemia was finally behind us. However, over the past summer, going to clinic with Brent was like reading the international section of the newspaper. As lab reports trickled in, I worried that all was not well in this historically troubled part of the world.
By July, it was clear that violence had broken out again in Brent's body. Leukemia had survived and had gained a foothold.
Brent has seen horrific weaponry most of which kills indiscriminately, the equivalent of using mustard gas (Methotrexate is actually derived from mustard gas-fun fact). He has undergone surgical sacrifice of large tracts of land and endured a nuclear holocaust (hello, radiation!) We have cut, poisoned and burned Brent in excess, in our efforts to eliminate the bad cells. Scientists have been focused on problematic cancer cells for so long, always searching for vulnerabilities so that we can better kill cancer with new medicines.
I have been grateful for these efforts, and for this line of research. The development of these brutal weapons is, in part, how Brent managed to beat osteosarcoma and metastatic melanoma. I often say that it has been an absolute privilege to develop treatment induced AML. There is no snark found in that statement.
With immunotherapy, however, the focus is actually on these other cells, the good that exists in Brent's body. Scientists are now studying ways to make what is working--cancer surveillance by the immune system--stronger and better. The traditional approach to cancer has been laser focused on the enemy, in a horrible war of attrition- (kill the cancer faster than you kill the patient). We are only on the cusp of this paradigm change, but it is very exciting and hopeful.
Last month at MD Anderson, we extracted some of those mercenary T cells of Alex's, which have been residing in Brent's body for a while. We shipped them off to a lab in New Jersey where they will go through special ops training so that they can better identify and eliminate leukemia cells. They will be genetically modified to be focused on CD33, targeting a protein found on the surface of Brent's leukemia.
We are still waiting to hear if the cells have grown, and passed their training program. They may hail from Alex's body, but they will fight passionately for Brent, their new homeland. We hope to infuse them back into Brent, in Houston, before Christmas.
Waiting for news of the cells is exceptionally difficult. While many people hate a war analogy for cancer, I feel like a viewing of Dunkirk might be an encouragement to me about now. I have often found inspiration in how Britain as a nation, survived such uncertainty and peril. They were tenacious, and at times unconventional.
Like Alex's cells, we began our family without fanfare, never suspecting that we would do anything unusual. I thought I would be quietly gardening in the suburbs, raising my children in the most ordinary way. I was not remotely ambitious, but always thought that my contribution to the world would be to raise extraordinary children with Dan.
I never imagined this, when I hoped that they would be extraordinary. But I rather think that they are.
We welcome your prayers for our family.
The DNA for the cells were created over 20 years ago. The ancestor cells grew in my son Alex, dividing and carrying on in the most normal of ways. There was no suggestion, for well over a decade, that they would do anything special. It was assumed that they would live out their time quietly in the suburbs.
Two and a half years ago, some of Alex's cells were scooped up and abruptly transplanted into a foreign war zone, where they tried to establish a new life. In Brent's body, these cells struggled and fought with the hostile natives, but they quickly became overwhelmed.
By Thanksgiving of 2015, they were on the verge of capitulation, when another wave of refugee cells arrived from Alex, this time with a great number of mercenary T cells. This influx of special help turned the tide in a remarkable way, beating down the leukemia to undetectable levels.
The conflict continued over then next 18 months, but open hostility was downregulated--perhaps to something more along the lines of aggressive political maneuverings. We watched from afar, really hoping that leukemia was finally behind us. However, over the past summer, going to clinic with Brent was like reading the international section of the newspaper. As lab reports trickled in, I worried that all was not well in this historically troubled part of the world.
By July, it was clear that violence had broken out again in Brent's body. Leukemia had survived and had gained a foothold.
Brent has seen horrific weaponry most of which kills indiscriminately, the equivalent of using mustard gas (Methotrexate is actually derived from mustard gas-fun fact). He has undergone surgical sacrifice of large tracts of land and endured a nuclear holocaust (hello, radiation!) We have cut, poisoned and burned Brent in excess, in our efforts to eliminate the bad cells. Scientists have been focused on problematic cancer cells for so long, always searching for vulnerabilities so that we can better kill cancer with new medicines.
I have been grateful for these efforts, and for this line of research. The development of these brutal weapons is, in part, how Brent managed to beat osteosarcoma and metastatic melanoma. I often say that it has been an absolute privilege to develop treatment induced AML. There is no snark found in that statement.
With immunotherapy, however, the focus is actually on these other cells, the good that exists in Brent's body. Scientists are now studying ways to make what is working--cancer surveillance by the immune system--stronger and better. The traditional approach to cancer has been laser focused on the enemy, in a horrible war of attrition- (kill the cancer faster than you kill the patient). We are only on the cusp of this paradigm change, but it is very exciting and hopeful.
Last month at MD Anderson, we extracted some of those mercenary T cells of Alex's, which have been residing in Brent's body for a while. We shipped them off to a lab in New Jersey where they will go through special ops training so that they can better identify and eliminate leukemia cells. They will be genetically modified to be focused on CD33, targeting a protein found on the surface of Brent's leukemia.
We are still waiting to hear if the cells have grown, and passed their training program. They may hail from Alex's body, but they will fight passionately for Brent, their new homeland. We hope to infuse them back into Brent, in Houston, before Christmas.
Waiting for news of the cells is exceptionally difficult. While many people hate a war analogy for cancer, I feel like a viewing of Dunkirk might be an encouragement to me about now. I have often found inspiration in how Britain as a nation, survived such uncertainty and peril. They were tenacious, and at times unconventional.
Like Alex's cells, we began our family without fanfare, never suspecting that we would do anything unusual. I thought I would be quietly gardening in the suburbs, raising my children in the most ordinary way. I was not remotely ambitious, but always thought that my contribution to the world would be to raise extraordinary children with Dan.
I never imagined this, when I hoped that they would be extraordinary. But I rather think that they are.
We welcome your prayers for our family.
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