Sebastian was three years old when his parents Michael and Naomi first spoke with Dr. Karen about their concerns for the life of their precious son. Sebastian is still fighting the “incurable” cancer Myoepithelial Carcinoma (MEC). We start the year with this episode to thank God for granting Sebastian another year of life. Now four years old he continues to thrive and play with his older brother Santiago. May God bless Sebastian with many more life-filled years to come. Thanks to all of you who prayed and who now pray for Sebastian.
Give to find a cure for MEC: cureMEC.org
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Sebastian’s Song Revisited
What would you do if you got the news that your precious two-year-old son had a rare, aggressive, and incurable stage-four cancer? We will hear about one Albuquerque, New Mexico family’s journey after receiving such devastating news. My guests are husband and wife and the parents of now three-year-old Sebastian. We will also share the many ways you can participate and join them on their journey of hope, healing, and miracles. Michael Casaus and Naomi Natale are the proud parents of Santiago and Sebastian.
Michael is a native New Mexican and has been an environmental advocate, conservationist, ethnobotanist, and non-profit leader for over twenty years. As the Wilderness Society’s New Mexico state director, he brings diverse stakeholders together to protect the land and water that sustains our families and communities. He is committed to public service and has dedicated his career to advancing diversity, conservation, and environmental movements.
He has served on several volunteer boards including the New Mexico Environmental Law Center and the Recuerda a César Chávez Committee. He is a recipient of numerous awards and is a W.K. Kellogg Foundation Community Leadership Network fellow. He now realizes that his decades of advocacy experience have all been in the preparation for finding a cure for Sebastian’s cancer.
Naomi has over sixteen years of experience creating and directing national and international art projects that bring people together to address social issues. Naomi is the founding artist of the One Million Bones project, a social practice work in which over 150,000 people from 50 states and 30 countries created over one million handmade bones to address ongoing genocide and mass atrocities in Sudan, South Sudan, Congo, Burma, and Syria.
In June of 2013, 1,018,260 bones were installed on the National Mall in Washington DC. Naomi lectures in the US and abroad on the power of art to build community and bring people together. Naomi is a TED Global Fellow, a TED Senior Fellow, a Robert Rauschenberg Foundation’s Artist as Activist Fellow, a Carl Wilkens Fellow, and a recipient of an Arts and Healing Network Award. As you can see, they are both very well connected in the community, making a difference in the lives of other people.
Inspiration Behind The Video Of Sebastian’s Story
Before we start our conversation together, I want to first play a brief video clip. For those of you who normally listen to the audio podcast or the iHeartRadio program, you may also want to watch the YouTube or Dr. Karen Speaks Leadership television version of the show to see the beautiful family images in this video. If you’re only able to listen to the audio version, then you will hear Sebastian’s Song written by Amanda Rose Taddeo. Sebastian’s Song is part of a larger project of Healing Songs for Sebastian.
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Welcome, Michael and Naomi. You are both very special people. I’m delighted to have you as my guest on the Voice of Leadership and Dr. Karen Speaks Leadership. Thank you so much for being here with me.
Thank you so much, Dr. Karen, for having us here. It’s an honor to be with you and to have this opportunity to share our story.
It’s a pleasure to be here.
Thank you, Michael and Naomi. I want to hear your story and I want the audience to hear your story as well. Since we finished listening to the video that you created, tell us a little bit about Sebastian’s Song. How was that song born, what’s the meaning of it, and what’s the larger music project that you spawned from the special song? Tell us a little bit about that.
The day that we were given the diagnosis of Sebastian’s very rare cancer, Myoepithelial Carcinoma, we were admitted to the hospital. It’s a very rare cancer. There’s not much information and we weren’t given much information in terms of what it meant for him. However, in the next couple of days, we learned that it was metastatic, meaning it had spread to his lungs. We were told the prognosis was poor and that it was as scary as it could be. Those were the words we were given.
My background as an artist has always been to bring people together. I felt very desperate in that moment. We were in the hospital for a few days. I was thinking, “How do we share this news with people in a way that serves Sebas but can also serve others as well?” Ultimately, we were asking people to pray. I asked two friends to write and share a song for Sebas that I could first sing to his cells. I thought if I could sing to his cells, they would hear that. They would understand it as a prayer of mine.
Knowing that my voice would never be able to carry as long as we would need these prayers to continue, we asked others to then record themselves singing these songs to make a collective song of healing. It’s beautiful. We got submissions and responses from people all over the world. They’re sung in Arabic, French, Mandarin, and Spanish, of course. It is a song for all of us.
That’s beautiful. I love that story and I love the way that you brought music into it. We all know that music is very powerful. It can touch the soul and spirit, and move things around in a supernatural way. It’s quite an important medium and a healing medium that you’re speaking through song. Thank you for sharing the story of Sebastian’s Song. People can still add to the song even today. Is that right?
That’s right. We would love that, and people could share the song with others who may find comfort in it as well.
That’s beautiful too. Even though it’s Sebastian’s song, other people or children who may be going through a similar situation can also benefit from this healing artwork that you’ve put together. Thank you so much Naomi for sharing about that. What about the video itself? What prompted the two of you to create this video about Sebastian’s story?
We created this video to show people what we were fighting for as a family. We’re a very private family. Before this, we had never shared a lot of personal photos online or anywhere. However, we felt that if we were going to describe, explain, or illustrate what it is that we’re fighting for when we’re fighting for our son and to find a cure, we wanted to share some of our most cherished memories. It is ultimately a portrait of our family to honor all other families that might be going through this, that they might see themselves in these memories, and what it means to fight for your family.
It’s a very inspiring video. I remember when I first saw that, I was very touched and moved by your story and by your situation. It prompted me to say, “What can I do that might help?” Even just to get the word out right now. Thank you for creating the video and for getting out of your comfort zone to share maybe more of your life than you’re accustomed to sharing. I know that other lives are going to be touched and impacted as a result of that. Michael, we haven’t heard too much from you yet. What else would you like to add at this point?
I think the power of video and images is something that resonates with most people. By sharing images and videos of Sebastian when he was an ordinary healthy child, who loved playing with his older brother Santiago? We love playing with trucks and balls, jumping on trampolines to show those images while also showing the reality of his chemo treatment in the hospital was our way of trying to connect with other families whose children have faced this horrible disease cancer. We’re hoping that while this video is a story about us and Sebastian, others can see themselves and their realities reflected in it.
Discovering Sebastian’s Cancer Diagnosis And Initial Reactions
That’s wonderful. That’s outstanding. Take us back to when you first found out that Sebastian had this cancer. I know it was back in October of 2021. Let’s go back there for a moment. How did you find out? What were you told and what did you learn about Myoepithelial Carcinoma at the time?
Last August, our otherwise healthy two-year-old son Sebastian was washing his hands one day and found a lump on the palm of his hand. That came out of nowhere. He’s an active child, learning how to ride a bike. We thought maybe he fell on his bike or he got bit by a bug or something. We monitored it for a few days. When it wasn’t going away, we decided to take him to the doctor. We took him in. They did an ultrasound of his hand and X-ray and they discovered what they described as a solid mass.
They were concerned enough to refer us immediately to a surgeon. The next day, we met with the surgeon who reviewed the ultrasound and x-rays and recommended that we do a biopsy of it to see what it was. His recommendation was since there wasn’t a need for a biopsy, we just go in and remove the entire mass. We agreed to do that. That was in early September of 2021, and they removed the mass successfully. Sebastian went home with almost 30 stitches on his hand and a full arm cast.
The sad part for us was that we had to wait over four weeks to receive a diagnosis of what we were facing. On October 6th, 2024, we got the call that is every parent’s worst nightmare. We got a call from the oncologist saying that our son had cancer. He had Myoepithelial Carcinoma, we use the acronym MEC. We were told to immediately check into the hospital. We did so and that night they did a series of scans, chess CT, and MRIs.
The next morning. We received even worse news. They discovered eleven modules in his lungs, which meant that the cancer had spread from his hand to his lungs. What’s known as metastatic stage-four cancer. The doctor told us that the prognosis was poor for his survival. He would need to begin chemotherapy immediately. That was the beginning of a journey that has been over a year now.
Understanding MEC: Rarity And Treatment Insights
That sounds very challenging and very difficult to hear news that devastating and to know that the cancer had advanced to stage four. You also said earlier that this is a very rare cancer, so not a lot is known about it. It’s a very aggressive cancer and so on. What have you learned about this MEC to date? Tell us about how rare it is, how it is treated, and what happened in Sebastian’s treatment.
The first night we were in the hospital, we did what most parents would do. We go to the internet and do an internet search for Myoepithelial Carcinoma. We found very little. We found a few scientific articles that had been written about it. What we quickly learned was that our oncologist at the University of New Mexico Hospital had never heard of this cancer and had never treated it before. We quickly learned that there were very few physicians and oncologists around the country who had ever seen or treated it.
This is what some scientists have referred to as an ultra-rare cancer. There’s no data and statistics to tell us how this cancer occurs in 500 or 1,000 kids a year. This is a cancer that’s so rare that has never been studied. What we do know is only a few cases a year are diagnosed in the US. There’s a dire need for even basic scientific research into what is Myoepithelial Carcinoma, what causes it, and what is the basic biology of that.
Because that type of research had never been done before, there were no proven treatments. There was no standard protocol and no cure. The chemotherapy that our oncologist treated him with was essentially throwing any chemo at it that they thought might work. He endured ten rounds of grueling chemotherapy over eight months. He has had four surgeries and is now considered in partial remission.
Impact Of Cancer Treatment On Sebastian And The Family
Great news about the partial remission. I’m glad to hear that. Chemotherapy is difficult on anyone and adults too. For a child, this must be extremely hard to go through. Tell us a little bit about what’s been the impact on your family on Sebastian going through those ten rounds of chemo.
Dr. Karen, I want to thank you so much for acknowledging that because chemo was never designed for children and growing bodies, and yet we are forced to go ahead with that treatment because it is the only treatment available. Many times, it does not work anyway. Within those eight months, he went through these ten brutal rounds. With each round, he needed multiple blood platelet transfusions.
He reached the threshold where you start to worry about hearing loss, heart damage, liver and kidney damage, and permanent damages that cannot be reversed. These are all the risks that parents take when they agree to this treatment. That is why looking for different cures and different options for treatments is so important to us and has become our passion. Only 4% of the national budget for cancer research in general goes to pediatric cancer research. If you have a rare cancer like ours, that means 0%.
What happens and what we learned in this journey is that the burden of finding researchers to do that research and funding it all goes down to the families. That’s why we knew right away we would need to start a non-profit organization so that any other family who gets this diagnosis has a place to go for information and a resource to connect with other families and learn from their treatments, what may have worked and may have not, so that we can champion and spearhead research into MEC.
Fundraising For Cancer Research: A Family’s Dedication
It’s quite a burden. I’m thinking a family is already going through so much and you’re dealing with your precious child and all the side effects and so on, then to have the burden also of having to raise funds for the research of the very cancer that your child has. One of the things about your story that I think is quite profound is that you were not only thinking about your child Sebastian, but you’re also thinking about other children and other families who are going through this as well. Tell us a little bit about the research project, how that works, the partners who are involved, and what are your goals in the fundraising.
Shortly after our son’s diagnosis and after learning that virtually nothing was known about MEC and there were no proven treatments, we set a goal for ourselves to change all of that. We’re going to do everything in our power as any parent would to save their kids’ lives. Both of us come from nonprofit and advocacy backgrounds. That’s where we went to first.
After recognizing that there was nothing known about MEC, we knew that we had to find the scientists to do that basic biology and research. We were very fortunate early on to be recommended to a non-profit research lab in Portland, Oregon called the Children’s Cancer Therapy Development Institute, CCTDI. They do Cutting Edge. Scientific research into finding treatments and cures for pediatric cancer. We got in touch with them. After their executive director heard our story, he took it upon himself to do some of his own research on us and came back to us within only a couple of days.
He said that he had an opportunity to learn more about us and our personal stories. Since we have dedicated our lives to giving back to our communities, this was karma coming back to us. At that point, he offered to take on the first-ever MEC research project in the world. We entered into a collaboration and partnership with CCTDI. That type of research takes funding. As Naomi mentioned, the burden of raising those funds falls on the families. Early this year in April, we started a GoFundMe campaign where we reached out to our friends and family and our personal and professional networks, and asked for funds.
We also knew that this was going to be a long journey. You can imagine trying to research a cancer that has never been studied and to find a cure for that cancer is going to take years. Our goal was to ensure that Sebas keep fighting until we find that cure. We made the hard decision at that point to start our own non-profit organization, which is called cureMEC.
The goal of cureMEC is to raise the funds necessary to fund the research into finding treatments and eventually a cure for MEC. We also have a goal of bringing together other MEC patients and families with the goal of building a network of MEC families and patients who can not only learn from one another but also support one another through our cancer journeys.
Lastly, we learned that so few funding was going towards pediatric cancer research, and based on our own experience, are having difficulties getting second opinions. Our third goal is to ensure that patients and families have access to the information that they need to make informed decisions about their children’s treatment. We’re embarking on various policy initiatives in New Mexico and supporting Federal legislation that would increase Federal funding for pediatric cancer research.
That’s phenomenal and I have to say your website cureMEC.org is excellent. It does a good job of clearly describing what MEC is all about and talking to families in a language that they can understand and have a little bit of a roadmap about where to go and what to do in their fight against this disease for their child as well. I want to applaud you on the website that you’ve created and the information that you’ve put on that website.
We walked in the footsteps of other families who have had to walk this journey with other different rare cancers. We’ve had mentors that we’ve been fortunate to have been taken on in that way for guidance.
That’s phenomenal. Let’s talk a little bit about the goals you have financially with the fundraising and how people can give to the cause. Would you mention something about that now so people understand the scope of it, how big it is, the funds you’ve already raised, and the various ways they can participate?
Our project with the Children’s Cancer Therapy Development Institute right now is a three-year project and the budget for each year is $300,000. It’s a total of $900,000 for that project with the Children’s Cancer Therapy Development Institute. Last week, we granted them our first grant of $67,500 and we’re excited for the work that’s already been underway in terms of the research. We’re also going to be looking into other avenues in terms of researching different treatments that are worth exploring. We’ll continue to raise additional funds. Our focus right now is to make sure that that project with the Children’s Cancer Therapy Development Institute is fully funded for those first three years.
That’s great. How can people get to the right place and give?
Our website is cureMEC.org You can donate directly there. We are a non-profit. We are fiscally sponsored right now as we await our 501(c)(3) approval, but all donations are tax-deductible from our fiscal sponsors. They can make donations directly to that site.
That’s phenomenal. Thank you so much for sharing that. It’s amazing to me that you have already collected the amount of funds you’ve collected and given your first donation to the research institute to start the work right away. That speaks to your commitment to your heart for your son and other people as well.
Journey Through Cancer Treatment As A Family
One of the things I know is that going through a journey like this is not easy. It’s very difficult. It’s hard on the family. You’ve had to at times move to California to get treatment for your son and so on. Tell us a little bit more about what has been the impact on your family and on your older son Santiago to go through this as well.
There’s a saying in the cancer community that cancer patients are warriors and they are heroes. That is true, and it is also absolutely true of their siblings. A cancer diagnosis asks a lot from all members of a family. Santiago is just fifteen months older than Sebas. He’s four years old now and Sebas is three. For those eight months of cancer treatment and chemo treatment, we spent a lot of nights in the hospital for chemo, but we spent a lot of nights in the hospital for infections that he got related to his chemo.
With each cycle, we were always re-admitted for at least 5 to 7 days for an infection, which meant ultimately, we spent two-thirds of our nights away from Santiago. That feeds a wound that will always be there. The two brothers have an incredible relationship. They love each other so much. Yet, as parents, the truth is we could never be enough. It is impossible to be enough in that situation because of what is asked.
Since we’ve been able to come home, we’ve worked on, as a family, our relationships and being there for each other, taking care of one another as much with everything that we have as we can, and ultimately, to be as grateful as we possibly can for the moments that we have together. I would have never imagined to say there’s anything beautiful about cancer. Yet you are giving an incredible gift of perspective to appreciate that every day is a miracle and it is a gift. We are so fortunate for the many that we have and we’ve had.
That is well said, every day being a miracle and a gift. The whole notion of redeeming the time, all of us ultimately are leaving here. Some of us don’t think about it and we aren’t aware of it. To be aware of the fragility of life and how important time with your loved ones is and to create those memories, you guys are doing an excellent job of that in very difficult circumstances.
It has been quite a journey. It’s only been a year much longer than that. One thing I’ll mention is that shortly after his cancer diagnosis initially treated at the University of New Mexico Hospital, as any parent would, we wanted to give Ssebas the best chance of survival. For us, that meant seeking the top experts in rare children’s cancers. We made the difficult decision last November to transfer his care from New Mexico to Stanford Children’s Hospital in California.
What that meant for our family was that Naomi had to quit a job that she had recently started. I had to go on a leave of absence from my work. We had to pick up our lives and move to California. We were so fortunate to have Naomi’s mother who happened to be visiting us from New Jersey at the time of his diagnosis.
We were so fortunate that she was able to travel with us to California. She was the one who was watching Santiago during those long days and nights that we were at the hospital and going back and forth rotating. One person would stay at the hospital with Sebas. The other parent would go spend some time with Santiago. We were so fortunate to have Kathy with us during these very difficult times.
It’s been a sacrifice. It’s been a difficult journey, but as Naomi mentioned, every moment with our children our priceless. They’re so precious. We can’t take enough pictures and videos because you never know what will happen. We want to be able to not only remember the memories that we’re building today. We want to have those pictures and videos to carry with us long into the future.
What a beautiful story about your mother-in-law helping at that time. It’s wonderful that Santiago was able to spend time with his grandmother rather than a stranger. It shows also the power of family in times of crisis and the love that you were able to share together during that difficult time. It was no accident that she happened to be with you at the time that you heard about the diagnosis.
Sometimes God knows what we need and he sends support in advance. We might not know why the person is there. However, it gets revealed ultimately why they’re there and it’s like perfect timing. It’s so good that she was able to drop everything and go with you to California. That is a blessing of huge monumental proportions.
Throughout this entire journey, we have been shown so much kindness from many people that we know and that we don’t know. All we wanted to do was to be able to create a wild child. We feel that in the way that we were able to physically cradle him, we were being cradled by a community. Grief is so hard, yet for us, the way that we’ve been able to sustain our strength and our faith is by letting other people carry it with us. That is a lot to ask and at the same time, we are so unbelievably grateful.
That’s an important thing you said about the community of people who will come alongside you so far, and I think are still coming to support you in this journey because this is a huge lift as difficult to do alone. It’s not intended that anyone should have to go through this alone. I love your heart to acknowledge with gratitude what people are doing, how they’re pouring in and loving you through the situation and circumstance.
We are certainly inviting people who are tuning in today to also step in and continue to love you through this process. Naomi, in your case, being an artist and particularly being involved in community art, you’ve used your creative genius already with Sebastian’s Song and putting that together. What other ways are you using your creativity and your art to walk through this season?
I remember one time when we were in California and it was a particularly rough day. I was there with my mom. I was going to visit Santi. Michael was at the hospital with Sebas. I don’t know what it was but I was having a hard time and I was pretty emotional. I don’t know what I said, but I remember what my mother said. She said, “You’re going to have to make something with it.” Ultimately, she was speaking of the grief that we’ve been holding.
Recently, I put out a letter that I wrote, which is A Request for Beauty on Behalf of My Broken Heart is the title. It is a letter born of my grief, but truly inspired by deep gratitude and the greatest love. It’s about asking people to enter into my grief. My grief is about my son and it is also about all of our children and all of us moving forward in this world with the devastation of climate collapse and the cost of our current way of living, what that means for the Earth who I consider to be my mother. It’s a request for people to respond to that letter by sending materials. I’ll just leave it there.
It’s a creative project because you’re asking for people to send in naturalistic materials. We know you’re going to build something phenomenal about it and with it. I’ll say this is a vehicle for moving through the grief, not necessarily staying in it permanently, but to be able to travel through it, come out the other side, and be enriched in any case. It’s a project of love, light, hope, and a journey. You’re using your talents and your gifts to create that.
We’re going to build a physical boat with these materials that get in. The boat is a place to invite children to dream in that space and to invite people who are in that precious place between living and dying, people who are ill to come and dream in it as well. We’re going to make with these dreams something that’s truthful that we will be able to share with everyone.
That is beautiful. I love that. It’s no accident that you’ve been given these tremendous gifts that you’re using at this time. That’s a blessing. Michael, in your case, we know that your career has certainly prepared you for this time as well. What are some of the work-related skills that you’re now repurposing for the benefit of your family in this season?
One thing that I’ve learned about myself is that I process grief and these kinds of challenging times differently than others. The only way that I’ve been able to get through a single day is to stay busy. For me, this is a time of action. We were told early on by a friend and colleague that this was a time of action and it resonated with me.
Over the last year, I have been spending any spare moment I have in helping to develop this organization, cureMEC, drafting content, drafting social media posts, trying to connect with legislators, developing a strategic plan for the organization, and fundraising plans, all in coordination with Naomi. We have a tremendous team of volunteers who have stepped in to help us every step of the way.
There are times when I need to spend time in nature. That’s how I ground myself, whether it be in the front yard, going for a walk, going on a kayak on a lake, or going camping. All of which, we take our children with us. Those outdoor experiences and spending time with Mother Nature have enabled me to keep going. As you can imagine, this is a very challenging time. If I even spend a minute thinking about what could happen next, I get very emotional.
My way of coping has been action. That’s finding scientists to partner with and figuring out how to get more donations in. That’s been some of the coping mechanisms that I’ve used over the past year, but it’s the skills that I’ve gained throughout my advocacy career, how do you bring people together around a common cause, how do you raise money for that cause, and how do you put plans into action.
As you said in your introduction, I feel that my years of advocacy work truly have been in preparation for this moment and we’re doing all that we can. We’re in a race against time. We’re so appreciative of these types of opportunities to elevate not only Sebastian’s situation but also the broader topic of pediatric cancer, something that we had never thought about before, but there are so many children and so many families being impacted by cancer. Children are our future and we need to prioritize them. One way to do that is by ensuring that the scientists have the resources they need to study pediatric cancers and find a cure for them all.
I think it’s significant Michael that you spent a lifetime so far being a community organizer and bringing partnerships together. Having that talent of knowing how to set up a nonprofit organization, the average person would have no clue how to do that, and to be able to do it so quickly is amazing that you have been able to do that. You’re using your skills to stay in action and to keep this at the forefront.
As you said earlier, there is essentially zero funding for this type of cancer already out there. I appreciate too that you talked about what you’re doing to replenish yourself, like the time in nature, the walks in nature, and having the boys to go with you as well. What else would either one of you like to share about what you’re doing that’s feeding your soul right now for this season?
I think making memories with the boys. Our boys love monster trucks. We took them to a Monster Jam truck show and they they got all decked out, wearing race car driving outfits. It was a special experience and it honored their dreams which right now focus on anything with wheels, just creating memories like that. That was more extravagant but whether it’s like we’re going to have a picnic in the living room and a pizza party. It’s thinking about celebrating. I think that’s something.
Celebrating Sebastian’s Spirit And Character
I love that you’re celebrating. When you watch a video, you can see the spirit of both of your boys, which is delightful. Tell us a little bit about Sebastian, what he’s like, and what there is to celebrate in this precious little boy.
I’m smiling from ear to ear because there is so much to celebrate with him. He is a free wild spirit. I would make up songs where the verses about him would be his eyes. He’d be looking at the sky and his head in the clouds, or right all the way to the ground, looking in the dirt. He has a wonderful imagination and is hysterical in the way he talks about things. He has an amazing vocabulary and he can use it very well to charm people or to persuade people, as Santiago as well.
Ultimately, I will say this. He has the biggest heart. When he loves, he loves with all of it. After he’d be fasting all day and had to go through a procedure or surgery, he would be getting out of the post-anesthesia unit and they would offer him a popsicle. He would want to save that popsicle for Santi. They would give him these little Hot Wheels Cars when we would go for any appointment he would have, and the child life specialist there always knew that he had to get two cars and he would always give Santiago whatever car Santiago wanted. He looks out for people. He looks out for all of us. He’s incredibly thoughtful and loving, and we are all better with him.
Words Of Encouragement For Families Facing Similar Challenges
That is so wonderful. It sounds like he has a generous heart just like his parents. It’s going from one generation to the next. I love that story. I know in the video, one of the scenes I enjoyed watching, and I’m sure he’s seen this done many times. He had that stethoscope and he was so serious with heart reading. He looks like he knows what he’s doing. He is a very bright and delightful child. I’m so glad you have so much to celebrate in him at this point. Let me ask this. Some families are going through this What encouragement would you give to other families who are in this season? I already heard you say to make memories and celebrate. What else would you share with them?
Given how much we have been given by connecting with other families who have gone through similar journeys, see if it’s possible to reach out or if it’s possible to be connected with other families who are struggling in the same way. We offer ourselves in that space because we do feel invisible in this space. It is incredible to meet others and immediately feel seen. We would like to do that for them.
It’s an incredibly lonely feeling to be a parent of a child with cancer. No one fully understands. They can imagine, but unless you’re in it, you can never imagine the nightmare that we are living. Other families who are going through this, we want to be able to connect with them. We encourage them to connect with others so that they don’t feel alone. They aren’t alone. We are a community.
One thing we’ve learned is that the pediatric cancer community is incredibly close. We had an opportunity to travel to Washington DC to attend what was called Cheer Fest, which was an event for families and children who are fighting cancer. It was the first time that I didn’t feel so alone being around this wonderful community. Many of the parents have lost their children, which was incredibly sad. There are others whose children are still alive and fighting. Having those connections with other families has been incredibly important for us.
Prayers, Donations, And Support For Sebastian
I loved the fact that you have created that community through the website as well. Again, that is cureMEC.org. People can go there, join the community, get support, and support each other through this journey. Let’s say again what people can do to participate. One thing I’m going to ask my community to do is to pray for a miracle of healing. We were talking to a predominantly faith-based community today and I know that there are prayer warriors out there, so please pray for Sebastian and please pray for other children who are going through situations like this.
Secondly, this research is so important. Being able to donate funds for the research is another way people can participate. They can record a song and add to Sebastian’s Song. You play that song for him as part of his healing therapy and his healing journey. What else would you say people can do to make a difference?
For information on how to record and submit a song, they can go to our website, cureMEC.org. There’s a page specifically for Sebastian’s Song. Another thing, we’d encourage people to do is if you are on social media, follow our page on Facebook, Twitter, and Instagram, and please share our page. The more that we can get our story out there into the world, the more that people will understand what we’re going through, and help them understand the broader plight of children who are fighting cancer. That’s another thing that people can do.
I would add the prayer requests. On December 6th, Sebastian will be going for his next round of scans. Partial remission means that there is still cancer in his body. We’re very worried about the next scans. I think that’s the case for any parent when they are getting ready to go for scans. Those prayers mean the world to us. We’ll be asking people the night before December 5th to light a candle on December 6th. We did that last time. We feel like those lights will connect to our light and ultimately will send healing and faith out to our boy.
Words Of Wisdom For Corporate Executives
Thank you for bringing that up as well. We’ll be sure to promote it on that day too so people can be reminded of that opportunity. As we’re hastening to a close at this point, our audience is predominantly corporate executives. What words of wisdom would you like to leave to that audience of corporate executives?
They say children are our greatest teachers. Sebastian has epitomized that for us. He’s touched so many people. He’s opened up his heart to them and they opened up their heart to him. One thing that folks can think about and practice is if there are children in their lives, whether it be their own children or their friends’ children, to connect with them and open up your hearts to them. They can teach us so much if we pause for a moment and let them fill our lives with joy.
The other thing I’ll mention is that one thing we’ve learned is that the power of play is so very important and the power of joy. When Sebastian would come out of chemo treatment, he would be tired and sick. He would see his brother and they would start playing. It was the power of play and joy that I think was able to get him through the chemo and was able to get us through it as well. Get out there and play and experience joy.
Enjoy the children and learn the lessons from them. I love that. Thank you for sharing that. Thank you, Michael and Naomi for being here with me today. I hope that many people will join in the community and make a difference with you.
Thank you so much, Dr. Karen.
You are welcome. I’d like to close this segment today with the Bible verse. It comes from Matthew, the 19th Chapter, verses 13 and 14, “The little children were brought to him that He might put his hands on them and pray, but the disciples rebuked them. Jesus said, ‘Let the little children come to me and do not forbid them for of such is the kingdom of heaven.’ He laid his hands on them and departed from there.” My prayer is that God will touch little Sebastian and lay his hands on him just as Jesus laid his hands on the little children in this account. We know that God loves children and cares about the children. We’re praying for a miracle of healing for Sebastian.
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