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