It is Christmas. We are looking for Miracles.

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.

A less traveled road

I spent most of September and a warm October in the hospital with Lauren and Brent.  I would see large families visiting Rainbow Babies and Children's Hospital on the weekends, sometimes providing improbable visuals: Amish men with their wide brimmed hats and distinctive beards walking behind a group of Muslim girls in full black burka. Witnessing these unlikely neighbors reminded me that pediatric cancer recognizes no boundaries.

While there is great focus on disparity, discord and discrimination between cultures, cancer is the great unifier.  We parents, regardless of any other differences, desperately want the same thing for our children.  Within the cocooned isolation of the oncology unit, we hold on to each other and to hope. We may pray in varied ways, but each of us utters the identical prayer.  Please bring health to my child.

The world, as presented in the media is a clanging ugly noise, something that is piped in via the television found in the nutrition room.  I generally turn it off, preferring the quieter expressions of love and kindness that we experience every single day.

While writing this, lyrics from some other lifetime, were called to my mind.

We share the same biology 

Regardless of ideology 

Believe me when I say to you, 

I hope the Russians love their children too
-Sting

I enjoyed my occasional days at home when I could to get Olivia on the bus. Upon waking, Olivia would always roll over to sleepily greet the sunrise, declaring its beauty and promise.  This morning when I woke her for school, it was dark outside, and cold.  Her cheer and enthusiasm are blessedly unwavering.

We return to warmer climate next week. Brent will formally enter a clinical trial at MD Anderson in Houston for his relapsed AML, a research study that just began recruiting in mid August, only a month before we sought options there.

I picked Lauren up after a rare day without chemo, one that permitted her to attend class.  We chatted over lunch about our family and the notion that "to whom much is given, much is expected."  The Ramers have been given so much. While we have been given far too much cancer in my opinion, we are also loved and supported in ways I never could have imagined. Lauren and I agreed that we each have a talent, and we should use it in service to others.

My daughter is comfortable speaking publicly and uses her voice to help the adolescent cancer community. Brent, she pointed out, has knack for getting out of incredibly tight spots. His talent seems to be providing Proof of Concept to enterprising folks in medicine, like the surgeon who successfully grafted skin from Alex onto Brent last November.

While I cannot deny the truth in this, I would much prefer that he take up juggling.

I reminded Lauren that I have been following developments in immunotherapy for years.  Emily Whitehead was a name I knew long before Brent had leukemia.  Her success with Car-T had dramatically changed the treatment options in ALL.  Reading about her and the brilliant researchers at Children's Hospital of Philadelphia brought me hope. I thought that using the immune system could transform all of cancer treatments, particularly for folks with LFS because it does not rely on our defective P53 function, as chemotherapy and radiation do.  I even said back in 2015 when Brent first developed leukemia, knowing that Car-T was still limited to CD19 /ALL, that I would gladly stand in line if a CAR-T trial for AML were available.

We now find ourselves next in that line for an early phase I trial for CD-33 Car-T to treat his relapsed AML.

I wonder sometimes if I unknowingly made a bargain with God. I alternate in my responses.  Should I be grateful about this, terrified, or completely pissed off?  I always lean toward gratitude, but in the interest of honesty, have to reveal my conflicting emotions. Faith, I have always said, is hard.

Our home smells of wood smoke and spiced cider when we return. At Thanksgiving, for three consecutive years now, Brent will attempt something unproven.  His daring is fueled by a mix of desperation and courage. As his mother, I choose to focus on his courage and his grace.

I wish we were simply taking a less traveled road, but Brent consistently steps into the wilderness with a medical machete, cutting a path for others to follow.

We welcome your prayers, however you form them.