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.

The colors of cancer

ROY G BIV  Doxorubicin, the red devil. Methotrexate yellow. Mitoxantrone blue. Colors and nicknames. These days, the chemotherapy colors are more familiar hues to us than the ones found in a Crayola box. We will also get to see Propofol this week, which is white and opaque.  But this isn't a chemotherapy agent.  It is a sedation drug, which is kind of fitting, when you think about it, a liquid like White Out, a primer that blots out everything.

I wake up not sure where am, or why I am there, even on the rare occasions that I find myself in my own bed.  Our situation changes so frequently.  In my sleeping hours, I wonder if I escape to an empty landscape.  I do not remember my dreams anymore.

Perhaps my lack of dreaming comes from my late night reading.  I looked over the consent forms for an investigational drug last night and considered the odds.  The problems that we currently have are certain.  The potential problems that we are signing on for are substantial.  We have arrived at a place where there is no standard of care. There are no obvious answers. Dan and I are required to make difficult choices for both of our children,  all of which carry significant consequences.

We have been doing this for years, but it somehow doesn't get any easier with practice.

I am writing, but not writing well or easily.  This leads me to believe that maybe I am dealing, but not dealing particularly well.  Perhaps though, it is just because we are so bloody busy.  And I am so tired.

Interrupted just now by rounds, I learned that the beat down has begun.  The anticipated dip in blood counts has commenced for my son.  These counts will continue to drop until we are required to transfuse, repeatedly.   Brent will be wide open for infection.  Knowing this, we will continue the Cookie Monster blue medicine for another two days.  And then we will add another drug, which will drive down his marrow even further.

Brent is currently doing very, very well,  I remind myself.  This is a big breadcrumb.

Pick your poison.  Brent joked that we literally did this ten days ago, when we met with a group of doctors and learned that his leukemia had infiltrated the lymph nodes. The disease has to be controlled before he can go to transplant, using the perfectly matched marrow that his brother Alex offers.  The menu had been filled with all sorts of unappetizing things.  Brent helped select his own poison, at fifteen.

Lauren will have surgery this week to deal with a grey area in her grey matter.  Dan and I had to decide with her, as a twelve year old, about how to manage the tumor that is slowly growing in her brain.  I looked over the series of black and white MRI images with her doctor and saw the changes.

There were no clear answers offered from the medical folk, and the nuanced opinions all required that we take the lead.  The Ramers decided to deal aggressively with this, having experience that suggests that nothing improves with the wait. We will wait only until Thursday, when we will have two rooms on the pediatric oncology floor.

It will be a busy week in cancerland.  I would love to vacation somewhere else, but the Ramers are together, at least.

My nephew just came to visit, a ray of sunshine on this drab day.  He is a reminder of the outside world.  Another breadcrumb.  Eric shared the wonderful things that he is learning.  His visit reminds me that this day is one to celebrate, because it is filled with love, with wonder, with joy.

Despite our burden, or perhaps because of it, all of our days are worth celebrating, because all of our days are clearly filled with love.  I really need to focus on this part, and put the technicolor cancer options behind me now.  Decisions made,  I must leave it in God's hands as we move forward.

We are always looking ahead.
We always welcome your prayers.

Parents: Buy a bike helmet and fund pediatric cancer

With our children, we experience love immeasurable and infinite.  Parents would go to the end of the earth for their kids, partially because we are charged with the responsibility as caregiver, but mostly because of this deep well of love and devotion.

I have been honored to share the responsibility of raising four children with Dan.  If I am honest, there are times I am overwhelmed with it lately.  I have often tried to explain what this 'adventure' has been like, one most people cannot begin to imagine.  I have left myself emotionally exposed and completely vulnerable, out of this love for our children.

Our pediatric cancer story would make anyone's hair curl.  I could share some of the details of our 6 cancer episodes to date, as I sit and write from a hospital room, and pull at your heart strings.  But I am not going to do that. I will talk of my children, and of yours, in abstract and practical terms, like commodities stripped of humanity and devoid of emotional attachment.

I will appeal to that practical, pragmatic part of your brain.  The part of us that is self interested and self serving, although we hate to acknowledge it.

If you have children, you likely went to some effort to have them, either investing nine months to grow them on your own, or considerable time and expense to adopt.   Regardless of how it came to be, if you have children, putting aside the temper tantrums of the toddler, and moments of moodiness in the teenager,  you likely want to keep them.  And keep them in good working order.

I recognize that the challenges vary greatly with each particular child.  The time may be coming where humans will be able to pick their make and model, getting the features and accessories of their choosing. However, this ethical debate is not relevant to our current situation. Today, we are stuck with what we have.  Do not in any way infer that I have buyer's regret, because I most assuredly do not.  I would gently remind you that we are keeping our emotions out of this discussion.

Kids have things go wrong with them.  I have looked over these statistics, and the most frequently occurring thing that happens to kids, is that they accidentally break.  Parents recognize this, and tend to be pretty careful with them.  We drive them in cars with special seats and we let them ride bikes, but with helmets protecting their lil noggins.  We consider them precious cargo.

But still, despite these efforts, the number one thing to go wrong with young humans, is accidental injury. This statistic remains constant (depending upon how you define young-ha!) until age 45, when cancer beats out accidents as the number one killer.  Either we become more careful as we age, or our genetics start to catch up with us.

But back to the true kids, because they stop being our responsibility, long before 45.  We are being pragmatic about this, remember? The second highest cause of death for children overall is cancer, only dropping below homicide and suicide, which temporarily displaces it between ages 15 and 35.  So, essentially, if your child doesn't suffer an accident, you should, in practical terms, turn your attention to cancer.

The American Childhood Cancer Organization estimates are that one in 285 children will be diagnosed with cancer before the age of 20.  Consider this number when you attend the next reverse raffle for your kid's baseball team.  Pediatric cancer is kind of like that reverse raffle.

Cancer has achieved the inauspicious title of the leading cause of death by disease among children, only because of the fantastic progress that has been made in infectious disease. The success of the immunization program has so reduced the fear associated with polio and other diseases which had historically ripped through the population, that most parents do not even understand what contracting these infections would involve. Consequently, some parents elect not to immunize their children.  It would seem that there is such a thing as 'too much success.'  Amnesia begets apathy.

My child, incidentally, will be highly susceptible to these nearly eradicated diseases that now pop up on occasion, until we are able to re-immunize him after bone marrow transplant, perhaps in a year.  We are absolutely forced to rely on the "herd immunity" that the parents who opt out of immunizations count on to protect their child.  But I return to pragmatism, because I cannot control this trend.  I could easily get distracted by fear and frustration, which are emotions, and thus neither helpful nor relevant.

So, back to cancer. As the foremost disease that kills children, cancer is grossly underfunded with only around 4% of tax research dollars at NCI being dedicated to pediatric studies.  While it is true that childhood cancer is rare in the general population (The Ramers are single handedly skewing the numbers, or so it would seem) the things that could be gleaned from studying a pediatric genetic landscape, one uncluttered by a lifetime of environmental damage and mutations, is significant. Lessons learned in the pediatric setting can translate to adults, but this seldom happens in the reverse. It would behoove adults, in pure self interest, to fund pediatric cancer research to better understand the process of adult malignancies.

Furthermore, there are scandalous amounts of money invested in adult cancer "success" drugs which extend the lives of those with advanced prostate cancer by only a couple of months, as one example. As a researcher pointed out to me earlier this week, even though everyone still dies of metastatic disease in the study, the advertisement trumpets the extension of life by mere months at an exorbitant cost, as a huge success.  Clearly, there is demand for these additional months, and thus, a market for these sorts of drugs. This is why pharmaceutical companies produce them.  I have no quibble with this.

However, with our tax dollars, we should be more discerning and forward thinking.  We should be pouring more of our resources into saving our new crop of humans and let the market drive the development of these other drugs.  As the cancer rate among children increases, as it currently is, it becomes more important to find less toxic therapies, and understand the underlying mechanisms of pediatric cancer.

The smart money for parents in protecting their young investment (after purchasing a car seat, helmet, and hopefully getting their kids vaccinated) is to invest in pediatric cancer research and urge congress to increase the allocation of funds for pediatric studies at NCI. 

Breadcrumbs

I have come here to write a couple of times over the past weeks.  I have gently closed my computer each time, leaving a blank screen.  It is hard to know what to say.

Our days have been frenzied, with tremendous highs and crushing lows.  Sometimes, these fantastic swings happen all within the same day.  We toured the White House a couple of weeks ago, even getting photos with the Obama's dogs Sunny and Bo, which was such a treat for the kids. Hours later, we learned that Brent had progressed from MDS to AML, which would require additional rounds of chemotherapy prior to transplant.

It has been a bipolar existence of late.

I have prayed for breadcrumbs, which I define as bits of encouraging news, like finding a full sibling perfect match.  I could not be more grateful for these blessings, but find that my hunger nowadays is fairly insatiable.  I no sooner get one bit of encouragement, then I turn around and ask for another.  I am currently asking for disease regression, a beat down of the leukemia from the two weeks of chemo that Brent just completed.  This would certainly bolster our spirits as Brent heads into bone marrow transplant.

I pray for breadcrumbs of guidance as well, to help us find our way out of this place.  God and I have an understanding, you see.  I readily admit that am not particularly bright, so if there is something that I am supposed to do, he needs to make it perfectly obvious and drop it right in front of me-to trip over.  I feel like I have received some of these sorts of breadcrumbs.

As an example, my daughter was recently found to have some tumor regrowth and will require brain surgery again this summer. (This would be one of those crushing lows that I was talking about.) But, I will have the opportunity to speak with researchers who specialize in hereditary brain tumors in a couple of weeks when they gather at Ohio State.  I am comforted with this breadcrumb of sorts. I have some peace knowing that I am doing the things that I can, the things that I am supposed to do.

We wait in hospital for count recovery, and there is a stillness. I do not struggle, being forced unwillingly into the present moment.  I find that I am just here.

My faith may be rather unorthodox, but love is universal, overflowing and unending.

Love is the best breadcrumb, the one that sustains me.

I have another son

We all live with cancer in this house.

Alex, my 17 year old,  has been raised in a home where cancer visits with alarming frequency.  He has witnessed many things that most adults cannot even imagine.  I don't often write about him, and have tried to offer him space to be a normal teenager, independent of this oncology nonsense.  I am certain that I have failed, but I am pretty sure that he knows that I have tried.

Alex is extraordinarily independent, partially by necessity as Dan and I have been off 'cancering' with the other kids.  But in part, this autonomy is achieved by design, because our job is to make our children self sufficient.  Alex is driven, choosing an academic course load filled with AP classes, joining clubs, marching band, and varsity athletics.  Sometimes I feel like we need to tether him to us, he is so ready to fly.

As he finishes his junior year, Alex is preparing for college, although we have yet to visit any.  Demonstrating initiative and leadership, he began plans for a service project some time ago.  He is organizing a t-shirt sale at his high school, raising funds for Kick-It, which supports pediatric cancer research. His idea is an extension of a program begun at the middle school.  Alex wanted to build on this heritage of community and service.  And lets face it, pediatric cancer research is not beneficial in any sort of theoretical way for us.  We regularly engage with researchers as a practical matter at the RamerNation.

Things were going along swimmingly for Alex, until Brent was diagnosed with his third cancer in the midst of this project. I had hoped to offer Alex some help and guidance, but found that I was preoccupied with doctors, tests, and organizing what I could, in advance of the chaos to come.  

Alex moved forward with his sale with guidance from Dan, as well as some teachers from school.  The Ramers also moved forward, testing for a match and waiting for results, which is excruciating, when so much hangs in the balance.

On Wednesday, Alex was blessedly, most thankfully, found to be a perfect match for Brent.  In this case, blood is thicker than water, because a full sibling is the best accepted donor.  

Alex has just become an active participant, rather than an intimate spectator.  He will undergo more testing. He will be poked and prodded as his siblings have been.  He will spend time at the hospital.  He will spend time in the OR.  

As part of the Kick It program, the focus this year is on sibling impact.  Lauren will speak to her peers at the middle school about what it is like to witness her brother's struggle. She will also share how this has impacted Olivia and Alex.  In the very moment that she gives her speech, Brent will be in the midst of the chemotherapy regimen that will kill off his own marrow, making space for Alex's stem cells, which we pray will be accepted and grow.  She will no doubt be thinking of this process, of the importance of family.

Alex is following through on his t-shirt sale, taking orders this week, profits to benefit pediatric cancer research, hopefully finding treatments that are less toxic and less likely to cause subsequent cancers like this latest one for Brent.  I am enormously proud of the person that he is becoming.

His service project at the high school will finish, just as he heads to the OR, beginning a service project of a different kind.  We welcome your prayers.

Donations to Kick-It via Team RamerNation may be made here:  

http://www.kick-it.org/games/2015/06/kick-it-with-the-bees/team-ramernation

Alex participated with other siblings of cancer patients in a video for Flashes of Hope last year:

https://vimeo.com/108471100?from=outro-loca

Cancer Nesting

I had finished a blog for Living LFS about how we watch the shadows, and wonder about the sharks, always battling those closest to the boat.  I thought that I would step up my game a bit, and include a stock photo of some sharks with the post, which would require tech back up from my husband or kids.

The phone rang as Dan got home, our oncologist calling with the results of the next phase of the pathology.  Suddenly, it became clear that my kid had slipped into the water. Brent is now swimming with the sharks.  The best chance that we have, is for one of my other children to help him back into the boat. He needs a bone marrow transplant to cure his latest cancer.

They are all children.

I have been busy for the past week on multiple fronts.

Medically, there was the trip on St. Patrick's Day for our family.  We went to the hospital to be tested, all hoping that one of us is the lucky Perfect Match, and can be a donor for Brent.  I saw many touching photos that day, of oncology nurses with shaved heads, raising money for pediatric cancer research via St. Baldrick's.

We had a meeting after tumor board with the transplant team, to learn about what is involved in the transplant process, which is daunting all on its own.  It also happens to be littered with potential for complications.

I have been doing the things that I know, as a veteran of four previous tours of cancer duty:  Talking to folks at each of the schools; Contacting my social worker, my case managers, the insurance company;  Notifying those who I made commitments to, knowing that I will not be able to follow through; Canceling my few cleaning clients, which had been a feeble attempt at finding work; Cutting back on interests outside of my family.  I did this all understanding that it is necessary, but not without regrets. It was not always accomplished without tears.

I reached out to some researchers that I know.  I am using every tool at my disposal.  I am following the breadcrumbs that God puts in my path.  I pray.  A lot.

I have not yet been able to open the binder we recieved entitled "A guide to your child's transplant."  My volunteer work at the hospital, which I am forced to leave behind, asked for parent input in creating guides just like this.

Over the weekend, as Brent went to the Cav's game courtesy of a dear friend, and spent time with his buddies, I cleaned, organized, and tidied...both my house and my life. Like at the end of my pregnancies, I need to have things in order before we become indisposed. I am cancer nesting.

I have a quiet in me that I cannot explain, but one that am grateful for.  We wait to learn of a match.

We pray.

We wait.

We pray some more.