Mayo Rhabdo Research

For a long time now, we have been unapologetically championing the Mayo Clinic based upon our experiences and interactions on a both a personal and systemic level.  A combination of the personal relationships we have developed with Finn’s doctors and their families, the emotional connection that we have through Finn and our time there, and the continued and welcome interaction with us makes us feel we are in a small way a part of what is going on at Mayo.  Twice now, since Finn’s passing away, we have had the opportunity to get an inside look at some incredible rhabdomyosarcoma research that is being done by some brilliant and dedicated researchers and scientists.  (It is here that I must apologize in advance to this amazing team for any errors in the following, and for the oversimplification of my layman’s account of your work.)

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First, A Bit Of Context

When it comes to medical research, cancer in particular, one of the hurdles to overcome is needing tissue to study.  If you can picture a particular cancer type (say, rhabdo) there is a limited number of patients with the disease, a smaller number in which surgery is performed (although this varies by cancer type), and an even smaller number who’s tumor is saved for research purposes.  The next challenge then becomes how do you study this limited tissue supply without using it up – i.e. how do you maximize what you have so that research is not limited by the supply.  A common way of doing this is implanting tumor cells into mice to then grow biologically identical tumors, and then study the lab-grown tumor tissue.  One of the drawbacks to this, however, is the cost of the mice and the time/resources it takes to grow the tumors in said mice.

When Finn relapsed the second time and we found ourselves at the Mayo Clinic in March of 2018 we were lamenting the lack of rhabdo research and treatment with Finn’s team. During the course of the many conversations we had, they shared with us a new research lab that Mayo had just started with one of the research targets being rhabdo.  This lab was going to utilize a slightly different approach and instead of mice, use chicken embryos.  The idea behind this is that the un-hatched embryos of chickens provide an ideal environment in which to quickly grow a tumor sample.  Furthermore, chicken embryos are small, inexpensive, and readily available.  In this way, months of sample growth time can be shortened to only 2 weeks – vastly speeding up the time for data collection and study.  This lab soon became nicknamed (at least to us) as the “Chicken Lab.”

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Fast Forward – February 2019

In BrandiLee’s first trip back to Mayo she was treated with a personal tour by Dr. Fabrice Lucien-Matteoni (hereafter referred to as Fabrice), the lead researcher of the Chicken Lab, and a first-hand account of the research being performed.  She also was able to see something that brought along with it a whole storm of conflicting emotions:  Finn’s tumor (aka “cell line” from his tumor tissue from his surgery in March 2018) being grown in chicken embryos.  There it was – the evil beast that stole our precious son’s life being grown in a lab.  Anger, sadness, and disgust mixed with excitement, interest, and hope.  Hope that by studying this tumor and others like it a way may be found to finally be able to stop this horrible disease from taking the lives of precious children.

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The Research

The research is somewhat two-pronged.  One avenue seeks to study the proteomics (protein makeup) of the tumor tissue compared to normal, un-diseased tissue.  The proteins, being the function molecular make-up of the cells, are thought to hold the key to how to attack and defeat the cancer cells.  If the protein makeup differences can be learned, and enough samples gathered, the expectation (and certainly our hope) is that certain patterns and similarities will become apparent across all (or most) rhabdo samples.  If a common protein makeup can be determined, then that can help lead research in how to specifically target those protein strains and kill the cancer cells.

The second avenue of research is more immuno-based.  All of our bodies contain cancer cells and cells that have by natural process duplicated with genetic mistakes.  This is normal and occurs in all of us.  What also occurs in all of us is that our immune system targets, identifies, attacks, and destroys these cells.  A typical diagnosis of “cancer” is, among other things, indicative of the immune system’s inability or ineffectiveness at targeting and killing those cells.  The cancer cells (or at least the cells that make up the surface of the tumor) emit or have an overabundance of a particular (or multiple) immune checkpoint molecule(s), which effectively blocks the immune system from recognizing the tumor as foreign, and thus the immune system allows the cancer to live, and grow, and take over.  Immunotherapy is a newer form of cancer research that focusses on finding and killing the cancer’s immune checkpoint molecule(s).  This coupled with a targeted therapy and boosting the body’s immune system’s ability to kill the cancer will provide a much more effective and less systemically toxic way of killing cancer.  Unfortunately for us, while this treatment and research is exciting it is still in its infancy and is ineffective for a large number of cancers, including rhabdo.  That is where the Chicken Lab comes in.

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As you can imagine, there are many facets to study when it comes to the many cancer types.  With so much unknown, it is hard to know how and where to start to find the effective information needed to then develop treatment and eventually understanding and prevention.  This is where Fabrice and his team are working hard not to get lost in the ocean of the unknown.  By focusing their research in specific areas that directly impact detection and treatment, they are first and foremost determined to find solutions that are not only academic exercises, but real-life, rubber-meets-the-road results that will guide treatment options.  This particularly hits home for us as parents who experienced the infuriating helplessness of not having an answer while watching cancer slowly take over your child’s precious body.

Additional Research

In addition to the above research, Fabrice and his team have the facilities and the equipment to perform two other incredible studies.  In one, they are using a machine (of which I cannot remember the name, only that it is not common place and very expensive) to study the protein emissions of the tumor cells.  There is currently no blood test for rhabdo, nor any way to detect if it exists in the body except to wait and find a tumor.  The two major issues with this is that once it’s a detectable tumor it is already strong and growing.  Also, unless you are getting a full body scan every week (because rhabdo can relapse anywhere in the body), the chances are small that you would detect a tumor at its earliest possible moment.  This is what happened each of Finn’s relapses, and in each relapse time is one of the absolute most critical factors.  What Fabrice and his team attempting to do, however, is how to detect a relapse by a quick and easy blood test before it can be picked up on a scan.

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All of our cells reproduce and all of our cells release proteins and other molecular waste which makes its way into our blood stream.  By studying specifically what proteins are being released by the rhabdo tumor cells, it is hoped that a pattern will emerge and a targeted and detectable protein strain (or set of strains) can be looked for as indicative of a relapse, even when the relapse is not large enough to be picked up on a scan.

The other bit of research that this amazing team is performing again uses a particular and expensive equipment set-up.  By using a super high resolution microscope they are capturing hyper-lapse video of the cellular processes that occur when tumors metastasize.  By learning the process by which these cells function, reproduce, and spread they then hope to identify the molecular activity (or activities) that are crucial to this process and then target and stop them.  In doing this, they hope to develop a targeted approach to stopping the process by which this cancer spreads throughout the body.

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No Man Is An Island

One of the striking aspects of our experiences at the Mayo Clinic is the surprising lack of egos in everyone we have interacted with.  In addition to selecting the right people to be there, there is a systemic organization that strives to remove personal egos for the betterment of the patients and the advancement of medicine as a whole.  This rhabdomyosarcoma research is certainly no exception.

Fabrice’s team is made up of a unique group of talented, humble, and very collaborative-minded group of individuals.  Not to be overshadowed in all of this are the involvements of Finn’s doctors and our dear friends Dr. Granberg and Dr. Gargollo, along with an organization in the Mayo Clinic which supports and fosters such research with the goal of finding a cure for their patients.

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In addition to the in-house team, it is very encouraging for us to hear that other rhabdo research teams across the country have been very open and collaborative with the Mayo team, and likewise the Mayo team is open in sharing their work and collaborating with anyone who’s work may come into play in finding a cure.  Unfortunately this is not always the case, and yet in this particular situation most everyone seems to recognize the urgency of finding a cure for the children effected by this horrific disease.

Now is an appropriate time to also to mention just how much our own dear Finn Fans have contributed to this cause.  Since we shared the giving opportunity to Mayo’s rhabdomyosarcoma research in December, roughly $13,000 + has been given in Finn’s honor.  This immense giving of resources is a most humbling experience for BrandiLee and I and more than a few tears have been shed over this.  It brings us such joy to share all of this with you so that you too can know that you are a part of what is being done, and knowing that Finn’s influence on this world is lasting.

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The Latest

Recently I traveled back to the Mayo Clinic and had the same opportunity as BrandiLee to tour the lab and interact with Fabrice and some of his team.  In just 5 months an incredible amount of data has been collected with some very exciting findings.  One of the more notable findings is the potential immune checkpoint molecule that seems to be popping up consistently across the studied tumors.  This has the team very excited, as well as piquing the interest of a research team out of Stanford who happens to be working on an unrelated immunotherapy targeting that particular molecule.  This and other findings are soon to be published by the team in several papers as well as being presented at an upcoming seminar in September.  The awareness generated by these findings and publications is hoped to garner additional research collaboration and samples with which to study and narrow in on a solution.  Should things continue to develop along the current track, future steps would involve partnering with a pharmaceutical developer to produce a molecular target, then test on mice before moving on to human trials.

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As you can imagine, all of this is very exciting, and yet still in the early stages.  As such we will continue to support this incredible team in all the ways we can, keep all of you loyal Finn Fans up to date, and pray desperately for God’s sovereign guidance over every person who has and will be a part of finding this cure – and pray that it is found quickly.

The Personal Touch

What really comes through in all of our interactions with Fabrice and his team is the personal dedication they exhibit in their work.  The late nights and early mornings, the painstaking research and data analysis, and everything else that goes into an endeavor of this caliber are done with a personal drive of success.  Not success of a fame and fortune type, however, but a success that means children’s lives saved.  When we both visited, we were incredibly humbled and thankful for the opportunity to see the work being done and thank those who are doing it.  What took us by surprise was the reciprocated thankfulness for our visit and interest – as Fabrice stated, it continually reminds them of why they are doing what they are doing.

From Mayo’s systemic “patient-first” guiding principle (a principle that is truly implemented, not simply a marketing platitude) to the personal drive and dedication of Fabrice, Dr. Granberg, Dr. Gargollo, and so many others, this research stands out as focused on a cure and those involved are willing to do whatever it takes with whomever to achieve that goal.  This is no mere academic or informative study for the sake of publication and general knowledge – this is focused research with one goal:  the eradication of the beast that is Rhabdomyosarcoma.

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To contribute to this incredible work please go to the following link:

http://philanthropy.mayoclinic.org/donatemc

Select “Other” under “Designate My Donation” and type in “Pediatric Rhabdomyosarcoma Research – Granberg/Gargollo.”

Typing in “Finn Schafran” when given the opportunity to enter in who’s memory this gift is for will help us continue to track Finn’s influence in this research

 

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The Beach And A Picture

For many weeks now I’ve tried to articulate some of the feelings and experiences that have accompanied our grief.  But while words once served such therapeutic purposes, they seem to have gone away and left me no map, no trail of crumbs to seek them out.  As much as I’ve longed for their return to aid me in my desire to process everything, I’ve had to learn to simply wait patiently.  I cannot force their return, they must come back in their own time.  Everything is still so raw and fresh – after all, it has only been a few months since we spoke through the tears our final earthly “I love you” to our precious boy. Perhaps part of the reason I must continue to wait is that while writing has always helped me to process, there is simply too much yet to try and work through.  It’s simply too soon.

One of the hard (and ongoing) lessons we’ve experienced in this life is the idea of waiting on the Lord.  And while there are lots of simplified phrases on this topic (often taken from out-of-context Bible verses and put onto a piece of wall art or on a picture accompanying a beautiful landscape), there is a very real and important concept of acknowledging the sovereign designs and actions of God and allowing Him to direct us, and not try to push things along to fit our timeline.  Moses wanted to move things along and that ended in disaster before God led him in the wilderness for forty years until His time had come.  So in the meantime we’ve been learning to sit in our grief (sit, not wallow) and trust that God is currently working as well as preparing us for whatever He will do in His time, and not try to rush things along ourselves.  Much easier said than done.  So quickly written, and yet so much depth behind a few simple sentences.

It is in the midst of the waiting we found ourselves on a much-needed getaway for us to spend time with each other and our other boys.  Our boys who have waited patiently for the past couple of years for us to give them the attention they need.  It was during this time that the memory of a picture brought back a flood of emotions, and with them a few of the words that have of late been so elusive.

In the fall of 2017 we had the opportunity to spend Thanksgiving on the Gulf Coast – along the 30A corridor in the Florida panhandle, which has quickly become one of our favorite destinations.  During this trip we went as a family for a daily excursion walking around the different areas of Panama City Beach, including the shops along the pier.  It was at a moment during this trip that we took a picture of all three of the boys together – one that ended up on a canvas print hanging in our bedroom.  A snapshot in time of three brothers spending time together.  A memory of a family enjoying a day together.  A memory of a cherished time captured in a photograph.

Fast forward to present day when, on our current getaway, we found ourselves once more at the shops by the pier in Panama City.  As we walked, we came upon the very spot where we had taken the photo.  It seemed like only a short time ago when we had all been together in that same spot.  Now, walking by, it was if an arrow of emotions shot from the bow of that past memory pierced our hearts.

Don’t get me wrong, it’s not as if the emotions aren’t always present.  They are always there, lurking in the dark corners of our hearts and minds waiting for their chance to jump out and overcome us for a time before retreating to the background where the stay, waiting for their next opportunity.  During those in-between moments we are able to more or less function through daily life, always aware of but not completely hindered by their presence.  But when they decide to come out they are relentless and unstoppable.  We can exhaust ourselves trying to fight them back for a moment, but have learned to let them have their way.

Now, our memories having been stirred, those emotions started creeping out again.  Each one it’s own animal with origins rooted somewhere in our own personal past, the happiness we had, and the loss we now experience.  Each emotion simultaneously fighting for our primary attention and working in harmony with the others to form a symphony of grief within us.  Deep sadness at the absence of our dearly loved boy who should be with us, splashing through the surf and building sand castles.  Anger that someone so precious and innocent should be ripped from our arms and robbed of these family moments.  Guilt that we could even bring ourselves to have a vacation, let alone enjoy ourselves, when Finn is not with us.  Regret of not throwing practicality to the wind and having more of these moments together as a family while we still could do so.

These are some of the more prominent feelings that are ever present, coming and going like the waves that crash upon the sandy beach we are on, then slowly recede back out to the ocean depths before coming back for more.  It is in the midst of these waves we sit on the beach, knowing that the tides will come in and go out, the waves and the currents will sometimes be rough and sometimes be calm.  At some point we will get up and walk along the surf, but for now we sit.  Sit and wait for the Lord.  Sit and remember a photograph.  Sit on the beach.

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Merry Christmas

A simple tradition of hanging the family stockings. As with so many other moments and traditions this Christmas, it is a vivid reminder. A hot iron shoved into an already raw and painful wound. Christmas used to hold such joy and wonderment, and while those feelings are still here, so is something else. Sorrow. Intense, bitter sorrow. We wish we could say that the magical Christmas spirit has eclipsed our mourning and has brought such joy to our lives, but that isn’t reality. The reality is that the loss of our beloved Finn hurts, and hurts deeply. And that hurt exists simultaneously with the joy of the season. Two contradictory emotions not at war with each other, but coexisting in our hearts and minds.

We honestly don’t know yet how to deal with it all. Everything is so fresh and we still feel as if we are in a fog of shock and disbelief. We know that the pain of Finn’s loss will never go away in this life, but we know that with time we will learn to adapt and live with the pain. And so with that in mind this year we are made more intimately aware of the tremendous meaning of the Christmas season. The hope that we have to one day see Finn again, and to have our pain and sorrow finally taken away is only made possible through the Nativity. One moment in our time, planned from eternity past by the Father, Son, and Spirit and foretold for centuries prior, to start an earthly work to reconcile us back to God. In this we rejoice in the midst of our sorrow, for in this we have hope that Finn’s suffering is no more and one day we will be reunited. One day the tears that we now shed so bitterly will be wiped away.

But for now we still shed tears. And though we mourn, it’s through our tears that we earnestly wish you all a very Merry Christmas.

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Celebration Of Life (NY)

Friends, we want to share with you the finalized service details for NY.

Please join us on Saturday, January 12, at 11:00am (ET) for a celebration of Finn’s life at Eastern Hills Bible Church (8277 Cazenovia Rd, Manlius, NY 13104).

In keeping with the spirit of celebrating the remarkable life of our avocado-loving superhero, please join us in not wearing black and keeping a more casual atmosphere. Finn Fan shirts, superhero shirts, and avocado attire are all welcome. In as much as we are heartbroken and will be sharing our tears with you all, we also mourn as those with much hope and want the joy that Finn brought to our lives to eclipse our sadness.

A reception will follow after the service.

In recognition of the care given to Finn, we request donations be made in lieu of flowers to one of these organizations:

Mayo Clinic, Pediatric Rhabdomyosarcoma Research Fund, Department of Development
200 First St. SW, Rochester, MN 55905

Shepherd Therapeutics, 1212 Laurel St, Nashville, TN 37203
http://shepherd.bio

Celebration Of Life (TN)

Dearest Finn Fans, please join us this Saturday, December 8, at 11:00am for a celebration of Finn’s life at Thompson Station Church (Thompson Station, TN).

In keeping with the spirit of celebrating the remarkable life of our avocado-loving superhero, please join us in not wearing black and keeping a more casual atmosphere. Finn Fan shirts, superhero gear, and avocado attire are all welcome. In as much as we are heartbroken and will be sharing our tears with you all, we also mourn as those with much hope and want the joy that Finn brought to our lives to eclipse our sadness.

A reception will follow at the Franklin Elks Lodge in Franklin, TN. A private burial service will be held at a later date. A celebration of Finn’s life will be held in Syracuse, NY in January. There will be no calling hours.

In recognition of the care given to Finn, we request donations be made in lieu of flowers to one of these organizations:

Mayo Clinic, Pediatric Rhabdomyosarcoma Research Fund, Department of Development, 200 First St. SW, Rochester, MN 55905

Shepherd Therapeutics, 1212 Laurel St, Nashville, TN 37203
http://shepherd.bio

Angel Heart Farm, PO Box 330274, Nashville, TN 37203

Finn Sawyer Schafran

Finn Sawyer Schafran

Friends, this morning Finn finished his race and went home to be with Jesus. He ran the race that was set before him, and he ran it with all his might. He fought the good fight and finished the race. The impact that such a small boy had on such a big world is astounding.

Words cannot express the sorrow and pain we feel at his loss. We long for eternity when we will once again hug and kiss our beloved son. We cling to the promises of the Gospel, even when we struggle to believe in the moment and we feel grieved even unto death.

Thank you for your ever present prayers and support. We ask for continued prayers and for patience while we grieve and care for our family during this time.

“Whom have I in heaven but you? And there is nothing on earth that I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” – Ps 73:25-26

Update

Hi, Finns Fans – It’s been a couple days and we wanted to update you on our little guy. After a good start to the week and things looking like they were heading in the right direction, things took a step backwards, plateaued, and now have gotten worse. Finn’s abdomen has swollen again, causing him much pain and discomfort. His breathing has become more labored and the complications from an evil cancer seem to be stacking up as he also has developed a fever.

We don’t know how much time we have left, but we still fight – we will fight and never stop fighting and praying for a miracle until the end, whatever and whenever that may be.

It is beyond heartbreaking as parents doing all we can for our sweet child and being helpless to accomplish the results we want. How quickly the tears come when we see pictures of Finn from just a few short months ago; pictures of a vibrant, healthy, joyful boy who lies now in bed wasting away as cancer continues to ravage his precious body.

We want to continue to share Finn’s story with you, no matter how hard it is to see. This is the reality of life with pediatric cancer. It is utterly devastating and is breaking our hearts more than we ever thought possible.