Autumn Awareness and a Nutella Summer

As his nutrition lagged, I prepared protein and calorie laden shakes for Brent.  After drinking these for a while, they had understandably begun to lose their appeal. I remember once gingerly sliding a glass of "calorific goodness" onto the table next him.  I attempted to soften the chore that I placed in front of my son with an enthusiastic and overly cheerful "I love you, Brent!!"   He glanced at the beverage, raised an eyebrow at me and rather than reciprocating the affection, he replied sardonically, "I am aware."  These three words became something of a joke between us.  Lord, I miss his laughter.

September is a month filled with awareness. I could certainly use Brent's same inflection and sarcasm right about now. "Cancer?  I am aware."

The Ramers have long been "Going Gold" for childhood cancer in September, which, conveniently for us, is the same month and color for Sarcoma awareness, a malignancy that we have dealt with three different times in our children.  We can thriftily drape those gold ribbons for double duty.  In addition, the Leukemia Lymphoma Society recently notified me that September is also Blood Cancer awareness month, but I am pretty sure that this would be a red ribbon. Even so, we seem to have a good portion of our cancer awareness bases covered as autumn commences.

I have had trouble writing lately.  My thoughts and feelings are difficult to articulate, and when I do tease them out, I am reluctant to weary the world with them.  Grief is complicated.

Our summer began with a week of sketchy scans in Houston for Lauren.  Her concerned doctors ordered follow up imaging in August (which was found to be blessedly clear.) In the interval, we filled our calendar with as many fun things as we could manage, including a quiet week at the beach.  There is an unspoken urgency in our planning, both to make up for things that we were previously unable to do, and to do them quickly, before we become medically busy again.

Our summertime activities were good of course, but it was kind of like enjoying Nutella between moldy slices of bread, which is hard to stomach at times. On the other hand, if you all you have is moldy bread, slathering it in Nutella is definitely the way to go. 

In addition to some purely recreational activities, I recognize the luxury found in having time for advocacy, and the chance to bring about positive changes.  Lauren has lent her voice to organizations that she trusts and believes in: Kick It, which is now a part of Alex's Lemonade Stand Foundation, Flying Horse Farms, Teen Cancer America, Flashes of Hope.  She has spoken with folks at Rainbow Babies and Children's Hospital about partnering with them in order to make things better for teens with cancer.

In addition to doing similar work at Rainbow, I have been reaching out to national advocacy groups in order to help shape policy at FDA and NCI.  Whenever I think about how I might make it better for Lauren with her next cancer, I return to the arbitrary wait that Brent was forced to endure.  Despite relapsing in early July, he had to delay until after his 18th birthday in October to queue up for the adult CAR-T clinical trial.  He was not able to have his cells collected until mid November.  The next six weeks, spent waiting for the cells to be modified and expanded, were excruciating.  We helplessly watched as Brent got sicker and sicker. As tenacious as my son was, both the disease and the system were stacked against him. 

Lauren will be 16 in a few weeks.  I am keenly aware of this happy September event, but recognize that it might not be sufficient to her needs.  I would never wish away this time as she returns to deliciously normal high school experiences, but we know that lot can happen medically in two years. I read every day about promising adult trials, for every type of cancer. While I sincerely hope that Lauren never needs them, the fact that she is barred from until she turns 18, this absolutely haunts me.

The Ramers interviewed with a local television station back in April (Alex was not there--off studying in Australia) Fox 8 began airing the piece last week to promote their annual charity walk/run.  The 2018 Fox Trot on Saturday, September 8th will benefit Alex's Lemonade Stand Foundation. (Come on out!)

I am hoping that by sharing our story, we might encourage folks to attend the event, which raises awareness and funds for pediatric cancer research.  But also, I hope it increases awareness about how adolescents are excluded from participation in adult clinical trials, an entirely arbitrary limitation that has enormous consequences, as we have experienced.  I hope that by sharing our difficulty, we can help to change this policy.

Here is a link to the piece: Fox 8 News Story

2018 Fox 8 Fox Trot
Saturday, Sept 8
Rock Hall Plaza
7am   Race Day Registration
8am   1 Mile Walk
9am   5K Run

REGISTER HERE

If you cannot attend the race, but wanted to support ALSF, here is a link to Brent's Obituary page:

Forever RamerNation

Thank you always for your kindness and support.

The month of September

It is September, the month where we "Go for Gold" in honor of pediatric cancer.  I write this from my daughter's hospital room as methotrexate drips in the darkness, the same yellow poison that we pumped into my son Brent nearly six years ago.  We are giving Lauren the identical chemotherapy regimen that caused Brent's leukemia. 

It sounds like madness, but we have no other option.

It is September, and my brave, bald daughter sleeps fitfully, frequently waking to ask for a basin, or medicines to help with the nausea.  I am not sleeping, partially because of these requests, but mostly because I know that I should be writing something.  It is September, after all.

I am not sure how to describe how we manage as a family, having two children with active cancer. Lauren is being treated for high grade osteosarcoma.  Brent relapsed over the summer with his treatment induced leukemia.  The RamerNation is shopping for clinical trials. We are enormously grateful for the support of our community.

We have said for many years, that research matters.  We have lamented that only 4% of federal spending at NCI is dedicated to pediatrics.  It is not nearly enough.  We have worked to support pediatric cancer research, raising funds for supplemental grants through non-profits like Kick-It, St. Baldrick's and Alex's Lemonade Stand.  We want to help other families who face a cancer diagnosis in their child, understanding how difficult it is to live with fear and uncertainty.  The Ramers also know the devastating side effects of a 'successful treatment' including organ damage and secondary malignancy.  We have worked to try to find a better way.

Research does indeed matter, and I concede and celebrate that some progress is being made. However, despite our varied efforts, there are currently no alternatives for treating Lauren's osteosarcoma, aside from toxic drugs dosed at levels sufficient to kill her without very careful management.  Brent needs a clinical trial for his leukemia, specifically a cellular therapy.  This alludes to the bit of progress that I mentioned.  We will travel next week to MD Anderson Cancer Center in Houston, a literal disaster zone, in the wake of a hurricane.

It is all madness.

Our difficult reality is more striking in September, when the Ramers typically talk about pediatric cancer and post yellow ribbons.  We usually visit a local field filled with golden sunflowers- a blooming awareness campaign along the highway sponsored by Prayers from Maria, a foundation that supports pediatric brain tumor research.  This year, regrettably, we are far too busy for such things.

I often say that God wouldn't give us so much cancer if we were not supposed to do something about it. I would certainly prefer to support these fundraising efforts than to participate directly in clinical trials.  God, apparently, has other ideas for us.  So, next week we will push back Lauren's chemotherapy treatment a bit so that we can travel to MD Anderson and speak to researchers about both kids.

I try not to think about what our life 'ought to' include, like being able to watch Lauren in the marching band on Friday nights, or seeing her run in cross country meets.  I try not to grieve senior activities and graduation for Brent, recognizing instead that his mental toughness is immeasurable, his endurance remarkable and his overall experience has been nothing that can be taught or prepared for in an academic setting. I truly try to focus on the things that we have been given: prayers, love and support from unexpected places, compassionate care from our team here at Rainbow, family time, even in a hospital.

We currently have the opportunity to speak with folks who are developing cutting edge therapies, a gift that I do not fail to recognize.  My hope is that the best and the brightest have good things to offer us in the month of September.  

I watch my daughter sleep in the dim light, listening to the hospital sounds, the familiar beeps and yellow drips. The scars on Lauren's body increase in number each year, but her sweet soul remains intact.  For this, I am grateful.

We welcome your prayers for our family.

Olympic glory and Olympic lessons

Like so many over the past two weeks, our family followed the Olympics, and enjoyed the quadrennial competition, filled with pageantry and drama.

There are easy comparisons between the RamerNation and Olympic athletes. Most obvious is the spectacle seen when you combine extraordinary genetics and tenacity.  Unfortunately, my children's unusual genetic makeup causes them to be champion cancer patients, rather than athletes. However, I would never bet against them in the tenacity department.

We watched as a family as Michael Phelps made history, earning a record number of medals in his fifth Olympic games.  His teammate manufactured some drama, and I just shake my head.  There is enough turmoil in the world without inventing some more.  Unfortunately, this scandal of the Rio Olympics is all that lingers in the headlines after the closing ceremony.  I would much prefer to remember some inspiring moments and focus on the more positive lessons found in the games. 

Expected to win her fourth straight gold medal in sand volleyball, Kerri Walsh found that she and partner April Ross had lost the semi final match. She acknowledged having something of a private temper tantrum as she talked through a sleepless night with her husband, following her first and only Olympic loss. 

She indicated that her funk resolved when she reminded herself that it is a privilege to make an appearance at the games. She examined the match and owned her mistakes. She got back into the tournament refocused. The next day, the American pair demonstrated teamwork, talent and tenacity in what Kerri described as the 'gnarliest' match of her entire life. The two won the Bronze medal, when measured athletically. However, I think that Kerri Walsh earned a Gold in ways that matter far more. She gave a wonderful interview afterwards:

http://www.nbcolympics.com/video/walsh-jennings-bronze-right-there-my-golds

The Ramers are privileged to make an appearance in our 6th Pediatric Cancer Olympics.  I know that this sounds crazy, but it implies that we have qualified, and succeeded in the previous five. I have had moments of anger, moments of despair.  My husband encourages all of us, and my children fight back with equal measure of grit and grace.  I carry gratitude, by the bucket load. 

Thank you, Kerri Walsh.

Perhaps the truest Olympic moment was during the women's 5000 run. Nearing the end of the race, the runner from New Zeeland, Nikki Hamblin and the US runner Abby D'Agostino tripped up in a pack, both landing on the ground. The American was first up, but came back for the woman who was her rival only an instant before. She offered her hand saying, "Get up, get up!  We have to finish this!" 

Moments later, Abby D'Agostino fell again, overwhelmed by her injury.  This time the New Zeelander, Nikki Hamblin stopped and offered encouragement.  Together, the pair finished the race, but long after the rest of the runners in that heat.

Hamblin said in an interview later, "When I look back on Rio 2016, I am not going to remember where I finished, I am not going to remember my time...but I'll always remember that moment."

So will I.

"If I hadn't waited for her or tried to help her I would have been 10 or fifteen seconds quicker and what does that matter?"

It doesn't.

This is the best part of the Olympics, not the medals, but the moments of personal encouragement and connection. Shortly after this event, I received a note in the mail from dear, but geographically distant friends who enclosed their church bulletin, which listed our family on the prayer list. Our friends, our tribe, they encourage us.  They pray for us.  

Together, we rise up.  We hobble our way to glory.

At the close of the games, some may question if our luck is made or found. Clearly a bit of both come into play when you count up the medals for the athletic event.  The same could be said of the Cancer Olympics. 

However, I believe that the truest measure of our worth is not in the finish, but in our conduct during the race. There is enormous power found in kindness offered to those who are discouraged.  I believe in the power of prayer, of the collective goodwill. I believe that the best in us will always outshine the worst. I believe that it is always worth going for Gold.

I know this, because I see it every day, not just every four years.

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

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. 

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

Milestones and Statistics

I haven't written in a while. This could mean that there has been so much going on medically, that I have been too busy and full of worry to empty my head here. I am most happy to report that this is not the case. 


We have had a summer. A delightful summer, with sand and sunshine, non-medical travel, time with friends and time to heal.  It has been terrific, stringing these days together, these days that were hard earned.  I couldn't possibly tell you how wonderful it has all been.  There just are not words.


Last week, Dan and I celebrated two milestones.  We have now been married for 19 years, which isn't one of those anniversaries that most people note, as it fails to end in a 5 or a 0.  But, I recognize that our relationship is nothing to take for granted, so I do note the milestone.  It is a blessing, not unlike the long summer days that we have been enjoying. 


But, like the blessing of our much anticipated summer, our time together has been hard-earned.  The stresses on our family have been great, if I might be so understated.  I recognize that cancer has forever altered what I envisioned our family.  If I were married to that vision, rather than to my husband, I would be bitterly disappointed, and most unhappy.  While I could do without cancer, I am most grateful for my husband, our children and the life that we are making every day together. It is not at all what I planned, but wonderful, nonetheless.


The second milestone happened on Wednesday, which was scan day for Brent and Lauren.  It was a long day, one that required much mental fortitude, but ended in good news.  Brent achieved 'event free 2 year survival'  for the osteosarcoma which, if you put much stock in the statistics, is a very, very good thing.  While the whole melanoma episode was quite an event, it does not factor into this equation: Brent has not had relapse of osteosarcoma for the two years since he completed treatment, which is statistically relevant.


I have sworn off statistics.  Dan and I absolutely should not still be married, if you embraced the marriage numbers.  They are pretty bad for the average couple, but are far worse for families with challenges like ours. Statistics, I have long said, do not matter.  However, I did find that I was heartened with the news on Wednesday, well beyond the whole "neither kid has cancer" notion.  I am feeling more confident as we stretch out the time between chest CT's.  I am a firm believer in "whatever gets you through." and if these numbers are helping, well, I may be a hypocrite, but I will selectively grab at the encouraging statistics and ignore the unhelpful ones.


We are in full swing now, gearing up for school which officially begins in a couple of weeks, although Alex is already gone much of the time for soccer and marching band.  I am grateful for another span of time to enjoy without much medical interruption.  Maintenance treatment for melanoma allows much time for living.  And that is what we are doing.  We are making new dreams, and alternate plans.  Different, we have decided, does not equal bad.


I am grateful for the opportunity to dream, for the relative medical quiet, for the milestones, for all of it.

Graduation

It seems that now, at every age, there is a "Graduation," marked with ceremony and celebration.  I was unable to attend Olivia's preschool graduation last year.  But, while I had initially thought that such a thing was a bit over the top, I must concede that the photos of the munchkins in tiny caps and gowns were absolutely adorable. Her eager anticipation about going kindergarten was no less than her current excitement about going to first grade. She loves school.


Graduation, pausing to note accomplishments and a time of transition, was less frequently celebrated when I was growing up, reserved for the completion of high school, and again for the completion of college.  But, while there seems to be more ceremony these days, I hope that there is equal pause for reflection.


I have often said that I would return to middle school or high school for neither love nor money.  In talking with others, there is a common memory of it being an awkward transition, of not feeling comfortable in your own skin which, in literal terms was morphing while you watched, not quite child yet not quite adult.  Never mind about being comfortable with your place in the world.  During those teenage years, the world is filled with equally awkward, morphing beings.


So, as we have recently been immersed in medical transition, punctuated by what I hope to be considered 'final exams' in the form of a broken foot for Brent and a few days later, an EMS visit to our home in the middle of the night, Brent noted that he would be going to the high school next year. I was aware of this in a rather theoretical way, having signed his class selection forms some time ago.  But as the march to the end of the school year wraps up, and his days at the middle school can now be counted on one hand, this transition has become far more real.


Last week, there was an academic awards ceremony that we attended.  I had never gone to this before, which I find curious.  Alex has always been a good student.  But early in his middle school years, both boys played travel soccer.  Perhaps one (or both) of them had games on that evening and we elected not to go.  In Alex's eighth grade year, we were in the midst of chemotherapy for Brent, and there is no question as to why we would have missed.


At any rate, this night marked the accomplishments of honor roll students and academic teams such as Power of the Pen, the math team, and model UN.  There was a string quartet and later a flute ensemble.  It was a lovely program that they put together.  Additionally, there are special awards given for art, strong moral character and inspiration.


Brent received the inspiration award, for maintaining his academic standing despite being absent for nearly half of his middle school years.  He received a standing ovation and I wept like a baby.


I think about the awkward changes that Brent has endured at a time when all kids just desperately want to fit in.  Brent went to school most erratically, attended bald-headded for a time, on crutches for two years, for weeks with a drain pinned under his shirt, and always with the determination to stay in his advanced classes, and to do the work that was required.  While his identity could not be attached to his physical form, which has morphed even more than the average teenager, he was grounded in his intellectual identity and his friendships.


I am most grateful for the environment that the schools here promote, as well as the individual families.  The middle school years, which can be fraught with uncertainty and transition have not disappointed us in this regard. Ours was filled with medical uncertainty and perpetual transition.  However, the one constant that we found, was the kindness and compassion of the community, particularly in the students at the middle school.  The teachers and the staff there have fostered an environment of empathy, and validation, evidenced by the awards given for students who serve as models of courtesy, compassion and respect


I have seen countless other examples of this.  Just yesterday, as a part of the Kick-It campaign, where individual students organize events to raise money for pediatric cancer research, a special needs student called the Chardon Polka Band to come play for the lunch periods.  They generously agreed, and there were students pushing others in wheelchairs, teachers dancing with each other, with students.  It was all fantastic.


While I would still not want to return to the awkward teenage years, if I had to, I would certainly like to do it in an environment such as this one. I think that Brent is ready to graduate from the turbulent times of the past three years.  I think that we all are. 

Less grass, less hair, less cancer

There has been much activity in our household as spring has arrived. Spring is a season of transition, as we can finally, happily, and with all hope, safely put away snow shovels and cold weather gear, after such a brutally long and cold winter.  There is what I refer to as the "march to the end of the school year" filled with band concerts, awards banquets, art shows and final exams for the older ones.  We were tested throughout the winter, but we can celebrate our success in spring.

We have medically transitioned as well, ending daily travel to the hospital for treatment and getting interferon delivered to our home where we can give Brent the injections ourselves. Wow... I have just compressed countless, horribly frustrating hours spent on the phone over the past several weeks into one sentence.  Sigh... But spring is a time to clean up the winter messes, and then move on, leaving those things behind.

Several weeks ago, we got started doing just that, cleaning up our yard.  Dan found me in the front where I was moving some bulbs and weeding the flower beds. He urged me to come to the backyard, because there was something I really needed to see.

I walked back to discover that Alex was supervising and had been giving a tutorial to Brent...who was cutting the grass.  Gratitude washed over me as I watched Brent, who was in the midst of interferon treatment, who is missing half his pelvis, who has has endured over ten surgeries in the past 2 1/2 years...who has fought hard and repeatedly for the opportunity to walk again and for the gift of being able to cut the grass.  At 14, this shouldn't be considered a big deal, but let me assure you that for those of us in this house, it is.  It was an amazing thing to see.

So, we are also busy with Kick-It, which raises funds for pediatric cancer research.  Lauren is making earrings and selling them to raise money.  Alex collected donations from businesses in the community and is doing a Chinese auction at the High School next week.  Back in the fall, Brent had committed to shaving his helmet of hair this month in support of those kids in treatment, which feels like several lifetimes ago.  I would point out that this was before Brent was once again, one of those kids in treatment. However, he has not wavered in this commitment.

Over dinner, after that long day of yard work, we talked with the kids about their projects.  I also shared news about the daughter of my mutant friend.  Lily, an adrenal cancer survivor like Lauren,  was raising money for St. Baldricks and also to honor her mother.  She grows a fantastic crazy mop of hair, btw.  In shaving it, she raised over $4,500, far, far exceeding her goal.   Brent thought this was pretty awesome.

But, Brent also wanted to DO something, to somehow earn it.  After brainstorming, he decided to offer to cut the lawn of the highest donor... BECAUSE HE COULD, which, as I have mentioned, is nothing that we take for granted here.

Last weekend, Brent and Dan went with a group of friends and their fathers to tromp in the woods and play paintball, which we thought was a great way for Brent to celebrate finishing the first phase of melanoma treatment.  He had a fantastic time, enjoying his new found mobility like he hasn't been able to since 2011.  He was moving pretty slow on Sunday.  Limp was more pronounced on Monday. Pain lingered on Tuesday.  Wednesday, back at Rainbow, we found the break in his foot.  He is back on crutches.  Sigh...

Medically, there are not concerns about this break being cancer driven, only that he has been non-weight bearing for so long that the bones in that leg are not so strong.  We will x-ray again in a month.

I asked Brent if going to paintball was worth it, knowing that he is on crutches for a bit again.  His face lit up, and he had an ear to ear grin..."Absolutely! It was so much fun, mom!"  I like that he has no regrets.  His solution to the lawn mowing prize for Kick-It?  He will cut the grass for the highest donor in July, rather than in June.  It will be no less meaningful a month later.  And I have no doubts that he will continue to work hard.  It is just what he does.

If you were interested in supporting the RamerNation for Kick-It, we would be most honored and grateful.  The grass grows high in July!

http://www.kick-it.org/games/2014/06/kick-it-with-the-bees

We do what we must

In a zen moment, I said that we will do what we must.  Then, I waited to learn of the pathology, to see which way the road would veer.

They found a nest of melanoma cells in one of the sentinel lymph nodes.  So, a sharp left turn.

This will mean yet another, more extensive surgery, and a full year of treatment.  This will mean beginning the cancer clock over again.  This will mean dealing with the uncertainty and worry about whether the treatment is working.  This will mean less confident scan days.  Again.  

Somehow, I am not completely out of my mind.  It is curious to me, the relative peace that I have. If I am honest about it, I wonder if it is faith or fatigue. We have had relatively short periods of time between medical upheaval. It has been little more than a weekend furlough. So, it might just be fatigue. But, I have also been working on faith, which I struggle with.  Let's just call it even for now.  

At one point, overflowing with snark, I wondered if I was supposed to perfect my response to the statement "Your child has cancer." We have done this four times now.  Four.  I would like the score between them to remain tied, at 2-2, forever. They say of a tie, that it is like kissing your sister.  If so, Brent should pucker up.

While I have had something of a temper tantrum over this, my son seems to soldier on pretty well.  He is a teenager now.  He does not go into this with ignorance or inexperience, as he did when he was eleven.  Brent knows what chemo is.  He knows what surgery means. He can evaluate the merits of a port vs. a PIC line.  Where there is room for his preferences, he is making them known, and I am am working to accommodate them.

His greatest desire is to be in school with his friends, of course.  I am working out the logistics so that his treatment has the lowest impact on his attendance. But every cancer is different, as every patient is different, so it is nearly impossible to plan.  However, I have been working on various options. Having options is a good thing.

I have always encouraged independence in my children.  Alex works things out with his coaches and teachers.  From an early age, we have encouraged them to work things out with each other.  I seldom arbitrate. The older ones negotiate three ways, as they divide their household responsibilities, in a manner worthy of a future at the UN.

Our job as parents is to make ourselves irrelevant.  We are not unimportant, but our kids function quite well without us.

Brent turned 14 last fall.  He will begin to drive in a year.  He will be off to college before I know it.
As you send your child off to college, they need to know how to do laundry and balance a checkbook.  I also need to educate my children on how to manage, and be medically independent.  By necessity, Lauren and Brent have become adept at enduring their various scans solo.  They do not need my encouragement to get labs drawn, IV's run, or blood products administered.  Brent can navigate the maze of the hospital to half a dozen different departments completely on his own.

I am hoping that this is Brent's last bout of cancer before he graduates. (Hell, I am hoping that this is his last bout ever, if I could be so greedy)  I suppose that he should be more responsible for driving this time, with Dan and me in the passenger seat to help guide him, on his cancer learner's permit.  He needs to learn to answer (and to ask) more questions, with us just supervising.  He is a bright kid, and I know that he can do this, I simply wish that it weren't something he were required to do.

Our goal as his parents is to make ourselves irrelevant, in baby steps, in all things.


We do what we must.


   

Eleven days of Christmas

It is Christmas in Cleveland.

There are some things that you can deduce:  It was nearly 70 degrees a few days ago. This morning, it was 17 with a dusting of snow.  A white Christmas is seldom ruled out as a possibility here, but the ambiance offered by snow is not what makes for holiday cheer in our home.

Truth be told, I was struggling with it a bit this year.  I usually bake for dozens of people, work my Christmas cards early, decorate enthusiastically, both inside and out... I suppose that this year I was a little gun shy, because Christmas has not been my friend in recent memory, although the surgical trend is certainly in our favor: Two pediatric surgeries with the cancer double bonus for Christmas in 2011, only one surgery with talk of amputation in December of 2012...  These recollections are not the nostalgic stuff that you weave into song.  It is the ghost of Christmas past taking up residence in my heart, and it was kind of killing my mojo.

The ghost of Christmas future is no better a houseguest, for the record.  We are backed up against scans, which means the confident glow of good results has begun to fade.  Our 3 month period of grace has about finished and we are waiting to see if we can re-up with NED.   I have thought about moving our scans so that they fall in early December next year, because I would love to not think about scans at all during the holidays, except for the reassurance that recent imaging brings.

There is a stress that goes with Christmas for a lot of people.  I have always been a firm believer in doing only what brings you joy, rather than what people expect.  This year, there wasn't a load of baking here, because I just didn't feel it.  Some cards are going out a little late, much to Dan's chagrin.  However, I do not think that folks will mind. I have never been one to get stressed out about the trappings, or about timeliness when it comes to truly optional things.

Part of my discomfort in December this year though, was guilt.  I ought to have been deliriously happy, rather than distracted, or worried.  I happen to know people who have real and pressing worries, and I am unable to help them in the way that I would like.  So, I was feeling rather inadequate, too.  My funk settled in.

However, falling in and amongst the nagging angst of the past, and worry about the future over the last several weeks, was my five year old daughter, Olivia. She brings me joy immeasurable. Her excitement about making gifts for people that she loves was disastrous to a clean kitchen as she perched at the counter engrossed in her visions and industry. The trail of paper scraps perpetually littering the floor as she fashioned all sort of art projects will not get us featured in Better Homes and Gardens.  But she has certainly helped me out of my funk with her crafting, her singing and her story telling. 

Everyone should enjoy the company of a 5 year old at Christmas.  Her enthusiasm was so infectious, I found myself catching a bit of holiday cheer. I could rent her out next year, watch her make a mess at some grumpy person's house, return with her to our own clean house and make a bundle. (win, win, win!)  I should get busy on that business plan. ;)

A dear friend of ours arranged for us to have a family photos made.  She called, offering this wonderful gift, noting that things are currently good, and that we are all well.  She knows that I would not likely think to do this on my own, and I am very grateful that she provided the opportunity.  As we gathered in her barn on a drippy evening last week, I found myself smiling at Olivia, proudly decked out in her "cowgirl boots" and hat.  She was so joyful.  Brent found a kitten to play with, and giggled in delight.  Alex and Lauren took charge of our two dogs, who were fascinated with the interesting smells of new, and much larger animals. It was all a hoot.

We took many photos. I was overwhelmed at one point, thinking of how fragile our future is, this awareness and understanding coming from our very rocky past.  My thoughts of next year do not come with any basic assumptions anymore. I do not think about the distant future in a general way, I realized.  Those two ghosts were creeping into the barn, and I struggled for a moment with how to get rid of them.

Because, really, I have found that happiness for me, comes from embracing a series of todays, and celebrating our daily gift of companionship. Worry about the future can only rob me of what the present has to offer.  That time in the barn, all of us together, well, that was a gift. As I move through this life, gliding from one moment to the next, I am hopeful that I maintain the innocence, the generosity and acceptance of Olivia. 

She was enchanted with the arrival of Santa at our house on the 23rd (a tradition borne of chemo, fatigue and neutropenia two years ago)  She excitedly passed out the gifts that she made for the people that she loves. The Ramers have stretched the family holiday visits over 8 days, although yesterday, Olivia announced to all that there were 11 days of Christmas and could not be dissuaded from this position.  I am not going to feel ripped off, failing to get the full 12 days heralded in song.  I choose instead to count it as a 10 day bonus.

We have enjoyed our time as a family, playing games together, sharing laughter and memories and love.  Today, I might finish sending out our holiday greetings with the bonus time of extended Christmas.  I am truly enjoying it, moment by moment, despite the slow start.

I hope that you have enjoyed it as well, surrounded by family and wrapped in love.

Civil War

My friend had posted a blog, whose point was that some people object to the use of war terms in describing cancer, for a variety of reasons. 

 http://www.thecancerian.org/2013/08/05/should-we-use-the-war-on-cancer-as-a-metaphor/#more-344

I had tried to respond to this some time ago, but lost the technological war going on with my Internet on that particular day. In honor of Sherman's march to the Sea, which began 149 years ago this week, I thought that I would post this today.

So, I think that if you were to consider cancer in warlike terms, I believe that it would be best compared to our own civil war, rather than a traditional war of invasion.  This was alluded to above in the arguments against using the war metaphor, but I think embracing these parameters, it really does work.  We need to bring under control elements of our own cellular population that are not functioning according to the rules.  Cancer runs rebel.

Also, the traditional therapies, or weapons, are not so discriminating, affecting healthy tissue and cancer cells alike. We all know that the theory behind chemotherapy lies in the hope that the poison selected will kill the cancer cells faster than it kills the patient.  Thus, cancer is the ultimate war of attrition, not unlike our own civil war, where the north concluded that it had a significantly larger population, and thus could outlast the Confederate south.  Horrible, horrific bit of calculus working there.

I think, either because we have been blessed with a short memory, or cursed with horrible sense of history in this country, most do not have a decent understanding of the nature of the conflict that ended nearly 150 years ago. There were more American deaths in that war than all other conflicts combined. The total number of American casualties during those four years, civilian  military alike, were mind numbing.  When you consider the number of casualties relative to our much smaller total population at the time, it was even more appalling.

Cancer, within the human body, carries a similar burden.  Pediatric cancer, even more so.

Cancer also shares uncertainty with regard to outcome.  There were absolutely no guarantees that the North would win.  We assume the Union victory from our current perspective, but it was no sure thing. If it were, Lincoln would have had fewer sleepless nights, hanging out with the telegraph operators, waiting for news from the battlefield.  I am thinking that if the cancer outcome were certain, I would have slept better as well, rather than pacing the halls of the pediatric oncology floor, or crawling out of my own skin waiting for scan results.

There comes a point in a war of attrition, that the damage to a large portion of the population, or the utter destruction of a region is deemed necessary for ultimate survival.  Doctors weigh the costs and benefits differently at the beginning of the cancer war, than they do toward the end. I believe that Lincoln did as well.

What I look to with hope, oddly enough, were the "advances" in adopting total warfare toward the end of the Civil War, specifically, Sherman's "march to the sea." This was a 50 mile wide swath of destruction in the 300 miles between Atlanta and Savannah.  Sherman and his army either used or destroyed every scrap of infrastructure, crops, and private property, leaving nothing that could conceivably be used by the south to wage war.  It was ruthless.  Sherman famously said that he would make Georgia "howl," and howl they did.  I suspect that there are no elementary schools named for this guy south of the Mason Dixon line.

However, the starving and demoralizing of the south in this manner in late 1864 was pivotal to the eventual success of the north, and ending of the war in April of 1865. I think such measures would not have been considered in 1862, when there remained hope that such collateral damage could be avoided.

Against cancer, there are drugs already available that essentially do this same thing, starving tumors, denying them the ability to thrive, to grow, to spread, the most commonly known among them being Taxol.  If cancer is a war, this is a good first step to ending it, and to winning.  

Today's smart bombs, aimed at particular sites are like targeted therapies whereby cancer cells are dosed with a poison payload that does no harm to healthy tissue...even better.  They are currently used and more are being developed.  I am encouraged.

But back in 1864, the Savannah campaign began on November 15, when William Tecumseh Sherman, having burned Atlanta, boldly (some say wantonly) abandoned his supply lines, heading for parts unknown even to his own army, except for a select few.  Sherman had no communication lines either, advising Lincoln that the southern newspapers would tell of his progress. 

For nearly 6 weeks, Sherman put his army of 60,000 on the line, unable to call for supplies, or more troops to support them.  They needed to forage for food in order to survive, and as such, they needed to continue to move, as they stripped the land of everything usable, like a swarm of locusts.  Sherman called this "hard war."  

Cancer treatment is certainly "hard war," and sometimes, like Lincoln, we have to wait for weeks in silence, as we send forth a new army in boldness, or desperation.  We wait to discover what the consequences are, and the degree of the success of the campaign.

We are forced to wait, as Lincoln did.  

Impatiently, anxiously, waiting for news.


Wondering all the while, 'Did it work?'

Waiting...

Finally, on December 25, 1865, "Uncle Billy" as he was affectionately referred to by his troops, resumed communications and sent a telegram to Lincoln stating, "I beg to present you as a Christmas gift the City of Savannah, with one hundred and fifty guns and plenty of ammunition, also about twenty-five thousand bales of cotton."  

It was with great relief that Lincoln learned of this success, which had remained in great doubt. From this, he was able to bring about the eventual end to the long and bloody war, with a Union victory. 

But, there were huge costs, especially to the areas in the south.  There was an enormous effort during reconstruction to make our country whole, and the scars, though faded, remain.  

Some hear echoes of Dixie in residual racism all these years later, which naturally causes concern, and fear.  Is it coming back?  

Scars, rebuilding, collateral damage, fear, uncertainty...

Yes, I thinks the analogy holds.  

Knowing: The burdens and the blessings

Knowledge is power.  Knowledge is responsibility.  Knowledge is a call to action, to vigilance.  No wonder they say ignorance is bliss.  (Ha!)

On my LFS support page this morning, someone wrote about how they can now test embryos and using IVF, select for implantation only those that are mutation free at p53.  There are those who have successfully carried a mutation-free child.

I knew that this could be done because my geneticist told me about it when we learned that Brent had Li-Fraumeni Syndrome.  They also shared the new Toronto Protocol with us, which is a screening protocol to find cancer early.  The folks at University Hospitals, I think, were piling on the latest options and improvements to mitigate an otherwise devastating condition.  The lion’s share of research up until this point has focused on “How do you feel, now that you know?” and the psychological ramifications of living with this knowledge of a faulty tumor suppressor gene.  The failure of this gene often results in multiple episodes of cancer, sometimes simultaneously.   

I will not pretend that this is easy, either the knowledge or the attendant worry that comes with it.  As I have shared, a series of headaches in my 11year old begins with ‘rule out brain tumor.’  That is a tough way to live, but far better than sitting back and waiting.  Because after 3 episodes of pediatric cancer, we were going to worry anyway.  At least with the knowledge, we can take action and find things early.

Similarly, there is power in taking action, of being able to choose only healthy embryos, in being able to eradicate this mutation in the future.  Who wouldn’t want a healthy child?  This is a no brainer.  But as I considered this some time ago, about how I would explain this option to my children when the time is appropriate, I realized the ethical and existential morass that this would be.  Because this decision, in a way, denies the validity of my children’s lives.  If I present this option, it is implied that I would not (or might not) have chosen to have them if I had known.

It is kind of loaded.  Because we didn’t know. 

This would be prime time for calling in some of those psychological researchers and positing the question.  “Well, how do you feel, now that you know?”  What I do know is that there are many ways to form a family.  I will consider it an enormous blessing for my kids to have the opportunity as adults, to wrestle with exactly how they would like to accomplish this.  I will be very grateful for this particular problem.

 

Yesterday, there was a news release out of Memorial Sloan-Kettering, a hospital that we know well.  They were reporting advances in targeted cancer therapies, ones that use our own harvested T cells, which are infected with a virus and programmed to attack a particular tumor cell.  This is accomplished by looking at the genetic profile of the tumor.  And sometimes, by doing this, they stumble upon information that they weren’t looking for, like a BRCA mutation or LFS in the patient.  There are ethical conundrums that come with this data. Are researchers ethically obligated to share this information with the patient, which can have clinical implications?  Does the patient want to know?  Should they know?  Should you even pose the question to the patient, which all by itself opens a Pandora’s Box of worries? 

There are families with LFS that are torn apart, not just by cancer, which is difficult enough, but by the decision to seek genetic answers.  Because this is a family syndrome, even establishing the diagnosis for yourself has implications for everyone else who shares your bloodline.  So, in some families, having a p53 mutation established poses the question for other family members and by extension, their children.  For those who do not want to know, it can become an issue.  And they no longer bring the green bean casserole to Thanksgiving, let’s just say.

I am an avid proponent of research.  I celebrate advances in all areas of cancer, which you might contend is hugely self interested, given the likelihood of us dealing with more cancer.  I am no position to deny the charge.  But even with a dog in the fight, I recognize that scientific advances sometimes come faster than we can wrap our head around them.  This is ironic, because research seems to go slowly when you participate in it…or if you are waiting for a particular advance in a timely way.

I think of my friends, those with LFS, each fighting in their own way.  Battling the worry.  Being grateful for the worry, when it turns out to not be cancer.  Battling the cancer when it comes.  Or, when it comes back.  The fight is mental as well as physical.  It is all grueling, and it never ends.  But through this devastating and demoralizing disease, because of it actually, I have come to know some amazing people.  While I would much prefer that we had met at PSO function, this is the hand that we have been dealt and these are the people that have been placed in my path, on this path.

I am going on Thursday to meet some of these wonderful people in Boston.  The researchers.  The mutants.  I want to learn what advances are coming and how they might help my children.  All of our children, because we have become one big mutant family, bloodline be damned.  The blessings cannot come without the challenges….my new extended family is the blessing.  The challenges still suck.

We are fortunate that the Ramers are not waiting for ‘a particular advance in a timely way,’ nor are our children forced to wrestle with existential quagmires. 

Not today at least. 

Relapse

It has been a rough couple of weeks.  

The Ramers have been terrific.  Brent has perfect attendance at school.  We have been getting our lives back on track.  I might even get to see the inside of the kids school rather than the inside of their various hospitals.  It has been great.

We enjoyed a fantastic day on Sunday via Flashes of Hope, sponsored by the Browns in honor of pediatric cancer awareness month.  Dan and the kids got to go down on the field as the teams warmed up.  We watched the game with two other families from the corporate suite.  The Browns won.  The weather was perfect.  We parked under the stadium with the players.  Fabulous day.

But for me, there was something of a shadow lurking over this all, because in LFS land, it has been positively raining relapse.  A friend who messaged me frequently about her osteo relapse options, went into hospice.  Others have been struggling with their second and third cancers.  And most devastatingly, a dear mutant friend announced that they found mets in her lungs and bones.  Perhaps sarcoma, but likely breast cancer.  There has been some swearing in my head.  I have vile things to say about cancer.

And, amongst all of this, Lauren has been getting headaches. They started out fairly sporadic.  They happened only at school.  But there has been a definite uptick in the frequency and the intensity of them. Dan and I were not thrilled about this.  We were nearing on scans, and were thinking between us that the brain MRI in two weeks couldn't come soon enough.  

As Lauren had more headaches over the weekend, I made plans to email her oncologist.  But first thing Monday morning, my phone rang.  The local Make a Wish chapter had a possible opportunity for Lauren, which felt both exciting and ominous.  While I had hoped to move her MRI up for my own peace of mind, now I really needed to, for this wish opportunity.  I emailed her team, advising them of her new and concerning symptom.   They forwarded it on to neuro oncology. 

When she came home after school on Monday in tears over a headache, I put her to bed, and called oncology. Phone calls back and forth...and by the end of the day, she was scheduled for an MRI first thing Tuesday morning. 

So, I checked Lauren several times overnight, but she slept soundly.  Lets just say, I did not.  Tossing and turning.  At 2am, I woke to discover a recent email from my geneticist.  My friend had also emailed.  I had too many thoughts swirling in my head. I couldn't sleep, but I couldn't do much else either.

We battled morning rush hour traffic to a satellite of University Hospitals. Lauren was great.  I was just simply jumping thought the next hoop, grimly, because we had to know what we were dealing with. We checked in at radiology and began to wait.  

Make a Wish called while we sat there to confirm the dates for her wish.  I knew that we would do her wish regardless of the scan results, and am grateful for the opportunity.  But it would feel very different, if we were traveling with the carry on baggage of another brain tumor, and a return trip to oncology on the itinerary.  

Lauren changed into a gown, and I was allowed with her in the back, to watch her scan.  The tech stopped the MRI to stick her and give her IV contrast, then put her back in the tube. He was a one man show in this small outfit. I resumed my waiting, trying not to think ugly thoughts.  Make a Wish called again to confirm more details.  I wanted to throw up, completely distracted by the fact that they were making images of my daughters brain, and how that information would determine the course of our lives.

I shared the details of Lauren's wish with the tech, in an effort to distract myself from awful thoughts.  I imagined how excited she will be to hear this news, having been patient so long.  He wished her well, and finally went in to pull Lauren out of the tube.  She quickly changed back into her clothes and we left.  

Before we could even get on to the highway, my phone rang, a number I recognized from the hospital. Dr. Sterns, the neuro oncologist said that he was looking over the scans, and that they appeared unchanged from her last ones.  I think that he must have been looking at them live from UH Main Campus during her scan.  I am so grateful for technology.  I am grateful for the clean scan.  I am grateful for the phone call.

I could breathe.

Lauren texted Dan to inform him of the good news while I was driving: "Hi daddy, its Lauren.  Just wanted to tell you that there is nothing wrong with my totally awesome cancer-free brain." We had breakfast together, at what she now calls our 'good news restaurant,'  and I took her home to get some rest.  I headed out to the main hospital for my own appointments and errands, now very happy with my day.

The very first person I lay eyes on upon arriving at UH was Lauren's neurosurgeon.  I swear, if I didn't already know her MRI was clean, I would have thrown up all over him.  Instead, I giggle to myself and text Dan about it.  These things feel so different without the uncertainty. 

I know, in my head, that cancer isn't contagious.  But the series of sad and troubling announcements from my friends had the universal effect of sending everyone in LFS world scurrying to "get their shit checked out," forgive my language.  Because, while we might laugh inappropriately at cancer, at oncology, and the horrible things we are required to do, we all have a very healthy respect for LFS (Ha! Isn't that an ironic turn of phrase?) and the potential for cancer. Neither LFS, nor cancer, is anything to mess with.

The relapse storm just serves as a reminder.  An alarm bell to anyone who might be tempted into complacency, which we all are. Everyone is busy with life, and everyone with LFS wearies of time in hospital. Furthermore, even for us, there are normal things, not just cancer.  It is just hard to know what to worry about.  

A great deal of the research to date with LFS centers on the psychological implications of knowing your status, what I refer to with much irritation as the "how do you feel, know that you know?" research.  It is a balance, having due diligence, and living.  With LFS, we start with 'rule out brain cancer' and work our way back to  'adolescent onset migraines.'  We have to, given our genetic circumstances. 

And we high five migraines in this house.

So at the end of my long day at the hospital, I returned home, and Dan and I gathered together the kids to talk as a family.  Our talk is different than other talks that we have had.  The talk that I worried about having.  A talk that my friend was having with her four beautiful children.  We celebrate migraines in this house, as cancer averted.  And we get back to the business of living, and embracing the blessings that each day offers us.

And we shared that Lauren has been granted her wish. Hollywood is going to Hollywood.  She and her totally awesome cancer free brain are going to be in a movie.

We leave in a week.