Carry on Baggage

The airplane was crowded.

Travel out of Newwark was complicated by a fire in the B terminal the night before and snowfall in the midwest.  I patiently worked my way through the plane, locating my seat by the window.  As I settled in and pulled out my book, the man next to me inquired if I often traveled on American Airlines.  He was looking for a way to plug in his phone.  My companion proved to be quite chatty, unusual in an age when most travelers bury themselves in their electronics. Maybe this interaction was fueled by desperation, stemming from his dead electronic.

My head was full, traveling last minute to surprise Gabby for her birthday.  Her friends had organized a dinner in the city after she met with Intervention Radiology at MSKCC, to map out her next biopsy. She battles stage 4 breast cancer and as a mutant, there was suspicion for lymphoma in addition to metastatic breast cancer. Double primary is a tough road, one that Brent has flirted with. It is a daunting path that other friends of mine have been on, and successfully navigated.  But it is sure nice to have company.  

The mutants came for me in January, when Brent first relapsed.  I am glad to be the friend who shows up for once.  So many of my relationships feel lopsided lately. I always seem to be the one needing support.  Cancer will do this I suppose, but within the mutant community, it somehow feels more balanced.

I tried to have a normal conversation with my fellow traveler, which takes cancer off of the table for a subject.  I found this to be more difficult than I imagined over the two hour flight.  I have not been in 'polite society' for some time.  Answering simple questions has become difficult, and speaking without mentioning cancer now boarders on dishonest.

What brings you to NYC?  "I was visiting a friend for her birthday."  This doesn't begin to explain how wonderful it was to surprise Gabby.  It doesn't address how much I needed to step away from the madness of pediatric hospital life, and pour out my soul to folks that really truly understand. It was a last minute decision which was only possible because my son's PET MRI and bone marrow biopsy were mostly clear.

Do you work?   No.  (My new answer will be:  "I am a project manager working with physicians, researchers and others within the medical industry."  I will be sure to mention that I do this work pro-bono)

Newark/La Guardia/JFK?  It was awkward to indicate that I usually fly into Teeterboro or White Plains (which are small, corporate airports) when I travel to NYC.  I had just indicated that I do not work.  Angel Flight is a wonderful and generous organization that provided our travel for Brent's care at Memorial Sloan Kettering Cancer Center. I was trying not to mention cancer.  I recognized that I was not making sense to this man.

We chatted almost exclusively about parenting, and my oldest son who is going off to college next year.  I became uncomfortably aware that increasingly, it sounded like I had a favorite child. "You have raised a son that you have reason to be proud of."  I am proud of all of my kids, but without mentioning cancer, half of them are really tough to talk about.

As we touched down in Chicago, I turned on my phone.  I saw a posting from a mutant friend who is in a clinical trial in Europe.  She has a similar tumor to the kind that Lauren has.  After being desperately ill last summer, spending over a week in a coma, my friend rallied and entered a clinical trial. She failed on her first one but entered a second trial. I read her happy news, that both of her brain tumors are shrinking.

I looked out the airplane window as we taxied and wept, not just for my friend, but for my daughter. I find comfort reading about new treatments which are more effective and less toxic, hoping to never need them. We are currently looking at a surgical trial for Lauren, using glowing tumor paint, derived from scorpion venom. For real.

They announced that our flight would be delayed for fifteen minutes more on the tarmac. Unable to contain myself any longer, I turned to my new friend Frank and shared the encouraging news from Europe, and in a thumbnail, how it relates to my other children.  As we finally parted ways in the terminal, I hugged this bewildered stranger, who promised to pray for my family.

At the end of the day, I suppose that if I am going to make sense to people at all, I will have to talk about cancer, even in polite company.  Like it or not, it has become part of who I am.

Small, focused moments

When my boys were just toddlers, I began keeping a journal, each day listing out the blessings and small bits of beauty that I encountered.  It was a way to carve out moments of reflection at a point when I thought that my life was busy. Having three children under the age of five sounds like a restful vacation from my current perspective.  But for years,  I would conscientiously jot down the moments that spoke to me, the bits of joy found in my full, but simple days.

Keeping a gratitude journal was a habit that has fortunately become internalized for me, because I haven't written in one for years now.  My days have become fuller with more children, busier with cancer and more complicated by LFS.  But these coping mechanisms and strategies that I practiced so long ago are fully engrafted.  As I walk though this life, I generally focus on what we are given and seek out the good.

Unfortunately, cancer has made an unwelcome reappearance for the Ramers, with AML returning a few weeks ago to my son Brent's lymph nodes. We learned just yesterday that Lauren's brain tumor might be back.  Neither of these things are easy, nor good.

But I remain aware of the kindness that surrounds us every day: the smiles of strangers in the hospital, the comfort found when we are home together, the encouraging words and support of friends.  I am keenly aware of each these things in the moment that they happen, and I recount them during the times that I struggle.

I focus on the things in our immediate situation that are encouraging.  While still very tired, Brent is feeling better than he has in a long time, free of pain, not requiring transfusions and safer from infection. Lauren has no troubling symptoms and can go to school.  We are all at home, which was not the case for over 200 days spent in the hospital last year.  Being home is nothing that we ever take for granted.

I find strength in hope.  The efforts of scientists and researchers have brought new therapies to cancer at an unprecedented rate.  I read press releases from many institutions each day, knowing that these advances might be directly relevant to our children.  I read about the Cancer Moon Shot, heartened and hopeful about this commitment, even while we learned that Brent had relapsed.

I pray.  For strength, for wisdom, for breadcrumbs of guidance, for health.  I have often been told that God does not give you more than you can handle.  God and I have talked extensively about His rather overblown opinion of us in this regard. There is no sacrilege found here.  I firmly believe that God would not have given me snark, if I wasn't supposed to use it as a coping mechanism.

And while God may have given us a bit more than we can handle on our own, He does send help to us. There are countless individuals and organizations that support families like ours who face such challenges.  We have compassionate physicians and nurses, who I know with absolute certainty, carry our troubles home with them. I recognize that there are more people praying for our family than I could ever imagine. We are not alone.

We each do the best that we can with the tools that we are given.  I try to focus on the blessings we are afforded. In all honesty, I do not always succeed.  However, this would be my best answer to the frequent look of mixed horror and bewilderment that we get from people as they say, "I simply don't know how you do it."

We do it one moment and one choice at a time, just like everyone else. I am determined to live in a spirit of gratitude and love.

This morning, I braided my nearly-eight-year-old daughter's hair and walked her to the bus stop. I listened to her chatter and the sounds of the birds.  I think they were singing spring songs, despite the chill.  It was truly beautiful.  It was enough, in that moment.

We are so very grateful for your prayers.

Beginning anew- Beginning together.

2015 was a harrowing year for the RamerNation. I am most anxious to turn the page, and begin anew.

As half of our family began decorating our home for Christmas one weekend in December, it occurred to me that I didn't have any ornaments stored from over the year.  Whenever we travel or have a special event, my souvenir is always an ornament for the tree.  At the end of the year, we unwrap them, mark the date on them and remember our gift of time together and our blessings as a family. It is a moment of pause, filled with a prayer of gratitude.  

I found no special ornaments in the basket downstairs where I usually stash them. Initially, this was puzzling to me, until I mentally scrolled through the year and realized that we have spent more time in the hospital, than in our home. I neglected to get an ornament while on our whirlwind trip to the White House back in April. It took me a moment to calculate that this trip, in fact, occurred just eight months ago.

Returning to the hospital, I waited to learn if Alex's stem cells would grow in Brent's marrow.  We hoped that the latest round of chemo had knocked down the leukemia that has beat up our son and dominated our attention all year. After relapsing this fall, Brent has gone through a targeted therapy, epigenetic therapy, radiation, more traditional chemotherapy and a second stem cell transplant with an extra dose of fighter T cells from his brother Alex. Things at this time were inexpressibly difficult, even by our standards. 

Along with many others, I prayed fervently that each therapy might work.

The things that I really wanted for Christmas this year are not found on Amazon.  But for my children, I wanted a tangible gift for each of them, something meaningful to represent our family's year long adventure. I sought out the art therapist who kindly gave me some materials to work with in Brent's hospital room.

I wanted to show how none of us has been alone, even as our family has been divided.With different colored wires representing each of us, I twisted them, showing how the Ramers have supported one another, wherever we happened to be.  Beads symbolized our big events for the year: brain surgery, bone marrow transplant (twice) and Olivia's birthday. The wires representing Dan and me crisscrossed back and forth twisting around our children's wires, at home and hospital, hardly touching each other. There is a bead at the bottom, a token for when we all would return home together, which was only the faintest of hopes when I first began the project.

I snorted when I finished, seeing how, quite unintentionally, the ornament seemed to form a double helix. There certainly is irony in this. 

Aside from the irony, there is also beauty, at least in my mind's eye.  We have been challenged beyond imagination, evident in how my sister was not comfortable sharing Lauren's brain tumor with her new coworkers over the summer. She feared that they wouldn't believe that we actually had three of our four children in the hospital within the same month.  

But I would be remiss if I didn't point out that our family has also been unbelievably helped and supported through our protracted struggles, both at Rainbow Babies and Children's Hospital, and at home. We have been prayed for and cared for, by so many people.  This is quite humbling.  We are blessed at long last, to be able to share some good news.  

Both Lauren and Brent begin 2016 with health, which far exceeds expectations.

We are all home, together.

Not traditional, but thankful

I woke up this morning, on Thanksgiving, under a beautiful quilt made by a woman I have never met.  She is from Manhattan, a friend of a friend, who ironically lives only blocks from Memorial Sloan-Kettering, a hospital that I spent many months in.  Today,  I find myself living in a different hospital, listening to helicopters as they land on the roof.  These flights remind me that someone is having a much worse day than me.

My son has relapsed with AML.  I have been medically focused for the past several months as we work to get Brent's leukemia under control.  We have tried a targeted therapy, an epigenetic therapy, radiation and just this week, a stem cell transplant with extra T-cell lymphocytes.  I am grateful for my time here with Brent, despite the geography.  I am thankful that my son Alex was able to donate cells again.

Our family has been under tremendous strain, as we are physically divided.  We have been separated before, and I try to focus on how our current distance is not nearly the challenge that it has been in the past.  We are near to our family and friends, able to swap parents and more easily arrange sibling visits.  We are not 500 miles apart.  While love knows no boundaries, embracing your children on occasion helps to reinforce this idea.

My thoughts are scattered and my mind only travels a few days in advance.  We must wait to see if Alex's stem cells engraft in the next two weeks.  In the meantime, I am told that every day without a 'catastrophic event' like infection, is a good day.  I try to make these days truly good whenever Brent is feeling up to it.  He is incredibly strong and equally kind.

Brent's doctors are thinking creatively about how to best help him. They are searching for answers and caring for our family.  We balance family and medicine.  We take each step, full of prayer and full of gratitude, knowing that our team is working very hard.  There is no clear path, and there are no obvious answers, but they travel the wilderness with us nonetheless.  They sacrifice time with their families on Thanksgiving, to help mine.

This holiday is a time to pause and count our blessings.  The Ramers celebrated Thanksgiving last week in order to be together as a family, and not delay this treatment.  While we marked the day early, the spirit of gratitude is fairly constant.  Our blessings, I believe, outweigh our challenges.  This is really saying something about our blessings, because our challenges are many.

Bald and isolated, but never alone

Cancer is so isolating. 

We lived in the hospital for many months, often confined to a single room.  Three weeks ago, only 21 days after transplant, we were finally, and most gratefully, discharged.  While we are incredibly blessed to be home, Brent is restricted from attending school for some time.  The geography may be far better, but the isolation continues.

This morning I logged into Facebook and the first thing that I saw was a video from a St. Baldrick's event in March, when we first learned that Brent would need a bone marrow transplant.  The nurses from Rainbow Babies and Children's Hospital had banded together. Thirteen of them shaved their heads in honor of their patients.  They held hands, draped in barber's capes, in an effort to raise both awareness and much needed research dollars.  That was nearly six months ago.

Over the ensuing months, we watched these same nurses work tirelessly to care for families affected by pediatric cancer. While some might argue that caring for tiny oncology patients is their chosen occupation, they do many meaningful things that are not included in the job description. It is true that these nurses are paid to care for pediatric cancer patients, but they also care about these kids.

In solidarity with their young charges, the nurses going bald that day was a visible manifestation of something that I know with absolute certainty: These caregivers do no punch out at the end of their shift and walk away from the things that they see.  They carry our burdens all day long, and then they quietly carry them home.

I am grateful that my son, after months spent in the hospital, is home. I am glad that his current concern centers on when will his hair grow back, because he is anxious to shed this latest cancer identity and a bald head tags him as a cancer patient. I measured up one of the nurse's hair in clinic yesterday while we were there, and am pretty confident that Brent will not be making an appointment for a haircut any time soon.

It is difficult sometimes, when strangers ask my son if he has cancer. (And yes, they frequently do)  It pains me far more to hear these inquiries, than when the subject of cancer was just stumbled upon. A few years ago, seeing crutches, folks would ask him if he had a sports injury. Brent would respond openly and truthfully during 'elevator small talk,' and indicate that he had no hip because of cancer. But now, when strangers ask him directly, "Do you have cancer?" he is reminded that he looks sick, in contrast to looking healthy, but perhaps just injured. We all understand that the difference in the conversation is primarily driven by his lack of hair.

Which brings me back to the nurses, who voluntarily took on this identity.  I imagine that they fielded many similar inquiries, particularly in the earlier, and much colder months.  Prior to the St. Baldricks event, they might have changed out of scrubs, and escaped their outward association with the hospital during their off hours.  But there is no escaping the bald head, the stares nor the open curiosity you witness as people try to figure out your story from your appearance. I don't have to explain this social phenomena, at least, to these beautiful shavees.

We have been so blessed in our 'adventure.'  (I am quite weary of the phrase 'cancer journey' at this point).  Because even amid our forced isolation, we have had so many reach out and reassure us that we are not forgotten. The kind words, prayers, gifts and time offered to my family have been a meaningful reminder, just like the bald nurses who came in to our room at all hours of the day and night:  We may be isolated, but we are not alone.

https://www.youtube.com/watch?v=mahNw23yL70&sns=fb

Blue Moon

Last night was a blue moon, the second full moon in a calendar month, a rare occurrence.  Cancer is supposed to be a rare occurrence, and generally is, unless you are a Ramer.

Since March, when we learned that our son Brent would need a bone marrow transplant, we have been living within the confines of cancer.  The tests, the treatments, the time in hospital and the precautions required, have been the first consideration in every decision, for all of us.

When Lauren was diagnosed with tumor regrowth in her brain later in the spring,  I completely surrendered my outside life and have been 'cancering' full time with the kids.  Dan, most thankfully, has a paying job with health insurance to help support this family hobby. Yes, there is certain amount of snark found in this statement, but a full measure of honest gratitude in it as well.

For weeks and weeks, the news was hard.  I described the experience at one point, like juggling live hand grenades.  I prayed for health.  I prayed for breadcrumbs.  Sometimes, there were moments that I couldn't form words or prayers, but merely listened, with a certain emotional detachment, as doctors outlined the considerable problems that we faced.  The challenges seemed endless in number and insurmountably steep.  

But hope, dim and distant, remained.  Encouragement, love, prayer and support -from friends, from family, from strangers- continued to surround us.

Eleven days ago, my son Alex went into surgery, giving life saving bone marrow to his brother.  And yesterday, they saw the first signs in Brent, that this priceless gift had begun to grow.   Upon hearing this news at rounds, my legs became weak and I broke out in a sweat.  I turned, and blindly walked back into our hospital room, even before the doctors were done talking.  

For the first time in months,  I do not feel like the road ahead is completely daunting. While I fully recognize that there are many serious complications that could arise in either one or, God forbid, both of the kids, I am strangely hopeful that things will become easier for us.  I can imagine a life outside of this hospital.

After the tumultuous events of the past months, I look forward to watching Alex finish his high school years and learn where he will go to college.  I know that Brent will certainly have some challenges with isolation after transplant, but I can imagine how much he will enjoy being with his friends again.  Lauren has thankfully recovered from brain surgery, and has begun to train for cross country, strengthening her body.  Olivia, well, exploring the world is full of possibilities and adventure for her.  She delights in every moment, and that sort of enthusiasm is contagious.

For many months, I have only been able to look a couple of days in advance and think hospital thoughts.  My focus has been shallow, my vision, decidedly nearsighted.  I have finally taken a full breath, my first, in a very long time. 

God's blessings this week are an answer to countless prayers offered on our behalf.  It is humbling, both the love that we feel and the support we have been given. My heart is now full, instead of heavy.   Full of hope, full of love.

Dan and I have endured, with much help, two children having cancer simultaneously,  twice in our lifetime.  This is our blue moon.

HONY and electronic breadcrumbs

I wrote about HONY(Humans of New York) once before, expanding upon my thoughts regarding the blessings that are found in this country, compared to war torn countries.  I still follow this Facebook page, a glimpse of everyday people with 'normal' or perhaps just different concerns.  I have taken up residence in a pediatric hospital with my son and use it as a way to check in with the outside world.

This is my second HONY story:

A year and a half ago, my son Brent and I were in NYC for follow up with his orthopedic surgeon at MSKCC, after the long and difficult treatment for osteosarcoma.  Brent had received fantastic news that he didn't need to return for a year.  We were celebrating.

Just prior to this travel, Brent had sentinel lymph nodes removed to be sure that his new cancer, melanoma, had not spread.  We were waiting for the pathology results.  Three hours after finally finishing osteosarcoma, we learned that Brent only exchanged his osteo placard for one reading 'metastatic melanoma.'  I was devastated.

As we flew back to Ohio,  I was filled with worry and fear.

At that time, I must have stumbled across a HONY post and impulsively commented.  I generally take inspiration and encouragement where I can find it.  This HONY photo showed a man in a wheelchair.  The caption read "Had cancer six times. Beat cancer 6 times."

On Feb 12, 2014, I responded at 10:32 in the morning.  "I needed this, in the exact moment that I saw it.  Thank you."  I have no specific recollection of making this impulsive comment.  It was a year and a half ago.

About a week ago, around the time that my daughter had her brain surgery (incidentally this was cancer number six between our children) I got a FB notification that someone 'liked' this comment. This is a website that has over 13 million followers and gets thousands upon thousands of comments per post.  Suddenly, someone that I didn't know liked a comment that was buried in over 6,000 comments, in a post from well over a year ago, one that I had completely forgotten that I made.

I thought that this was odd, but found a breadcrumb of encouragement in it.  In this crazy mutant life,  I pray for breadcrumbs every day.  I pray for God to show me the way out of the wilderness.

But each day since then, and sometimes more than once a day, I have had notifications that someone "liked" my grateful comment about the man beating cancer six times.  It has been a sort of gentle encouragement to me, a private reassurance and moment of wonder each time I saw an additional notification,  as we have been fielding challenging news with both of our children who are duking it out with cancer.

Yesterday morning, I finally shared this story with a dear friend.  I told Julie that I am not thinking that God lives in Facebook, nor speaks through Brandon, the HONY author, but that this was so very unusual.  Somehow, I feel things might just be ok.  She reminded me that there are no coincidences in this life.   God works in mysterious ways.

That is no lie.

I went on to have a long and emotionally draining day in the hospital.  My husband and I sat in a meeting where they outlined the various ways that my son's bone marrow transplant could go horribly wrong, and ways that our son might die.  I fully recognize that they must talk about risks, and BMT is a most dangerous proposition.  With bone marrow transplant, they take you to the edge of death, and hopefully keep you on this side of it.  Knowing this is one thing.  Hearing it spoken aloud is quite another.

I stepped out last evening with my sister to vent and grab a bite to eat.  After relaying the details of the oncology meeting, I shared my HONY story with her and the electronic breadcrumbs that I have been getting this week.  I am not the sort of person that goes looking for images of the Virgin Mary in a potato chip, but this feels somehow comforting. Laurie pointed out that being comforted is never a bad thing, as we walked back to the hospital together.

I went online to wind down before going to sleep to the sound of IV pumps and hospital noise.  I found another "like" on my notifications and smiled in the darkened room thinking about the ultimate survivor and the breadcrumbs from God.  Then I scrolled down to see a new HONY post about cancer.  The photo was of a man at a baseball game. Caption:

“I’m trying to beat cancer for the fifth time. The first time was in 1997, and the doctor told me that I’d only live for six months. I’ve had it in my armpit, my knee, my back, and twice in my groin. Life keeps throwing me curveballs. I keep hitting them.”

I found further encouragement in this post, on a site that is not generally about cancer and could have just as easily shown a fun photo of a toddler: "Today's micro fashion." I scrolled down, reading some of the comments and soon came upon the photo of the man in the wheelchair who I had been talking about only an hour earlier. The person who posted the photo said: "You should talk to this guy."


I slept well.