June 2020 Newsletter
We hope that this update finds you well, and handling these unprecedented times as well as possible. COVID-19 has brought the world to its knees-and while the aspects and long term effects of this disease are still very much uncertain, our families are doing our best, adjusting to a new ‘normal’.
As most of you know, we were not aware of Maxwell’s affliction with Neuroblastoma until after he passed away. In the 2 ½ years since, we have intentionally dug into the trials and tribulations that children with Neuroblastoma face every day. The things we are doing now to protect ourselves and our families from COVID-19 are the things that are the NORM for pediatric cancer families. Sanitizing, re-sanitizing, planning, protecting, endless worrying, wearing masks, isolation-all of it. These families are forced to face each day with the uncertainty and fear that comes along with fighting an unfair and unpredictable disease. This is the world that these families live in, every single day and they have lived there since the day they heard the words, “your child has cancer”.
Anticipating the future has been a struggle as it relates to what this pandemic means for Maxwell’s foundation and the progress that we have made. We’ve had to postpone our fundraising events indefinitely. We have had to cancel a trip to Grand Rapids, Michigan to meet with the incredible physician who chairs the DFMO trial that we have chosen to fund in Maxwell’s memory. We are not certain we will be able to host any events this year, which has been incredibly emotional for our family. But the fact is, none of us know how things will evolve over the next few weeks or months.
We feel so strongly that as a foundation focused on health-and fighting against pediatric cancer, we absolutely cannot in good conscience hold a fundraising event, or ask our supporters to join together until we are absolutely certain it is safe for us to do so. Our supporters and our mission mean too much to us to risk compromising their health and safety.
We want you to know that our commitment to our foundation and its mission has never been stronger. And to that end, we wanted to make sure to update you-our supporters on the status of the aforementioned DFMO trial currently being conducted by Dr. Gisele Sholler. We are more than thrilled to report that the trial is still going strong despite the setbacks that other researchers in the cancer field have experienced due to COVID-19. The DFMO trial is moving ahead-full steam ahead towards FDA approval, set for January 2021. We feel so blessed to have chosen this to be our first funded clinical trial for Maxwell’s foundation, because it has been underway for quite some time (it began in March of 2015). Because of that fact, while labs and clinical trials that are trying to get off the ground in general are moving slower, DFMO is past the part of the process where delays would be an issue, and the trial moves closer and closer to FDA approval with each passing day. All children who are currently enrolled in the trial continue to receive the drug, and any new children identified to be candidates for the trial are being accepted, which is absolutely wonderful.
I asked the Executive Director of Beat Nb, Kyle Matthews for his insight during this unique time. He says, “Nothing about our mission has changed through COVID. Kids are still being diagnosed with and treated for cancer, and they still need options to help them beat it. We have some bold moves coming this summer as we continue to work toward a reality where every family whose child is diagnosed hears this promise: we know how to beat this.”
We continue to receive signs that we have chosen the right national entity to partner with, Beat Nb-one of the most meaningful, is that their research consortium is almost entirely parent-funded. They are not dependent on state or federal funds to proceed with their work, which is a blessing, but the need for funding is even stronger at times like this.
We understand what a difficult time this is for a multitude of reasons, our fundraising events have been postponed, and people are uncertain whether they should be holding onto their funds, and for how long. However, if you would like to make a donation to the Maxwell James Oskam Foundation towards our mission of fighting Neuroblastoma, please visit our website at www.maxwelljamesoskam.org, and click on “donate” towards the bottom of the page. Every dollar raised makes a difference and will be received with profound gratitude.
We want you to be assured that we will not give up, not now and not ever. These are trying times, and it seems that new challenges are around every corner. It reminds me of something someone said to me not too long after Maxwell passed away. “You were given this life because you are strong enough to live it.”
We are calling on that strength right now, and choosing to believe that better days lie ahead of us. We are truly all in this together, and until we can get back to doing what love to do the most, we will choose to make the best of this time, and help as many children in Maxwell’s memory as possible, and do our best to bless and brighten the lives of as many people as we can along the way.
Maxwell James Oskam Foundation:
DFMO Clinical Trial Data, Trial #NCT02395666