Navigating Cancer and Stem Cell Transplants

With a master’s degree in social work, Christina Merrill saw how managing a transplant diagnosis upended the lives of patients and their caregivers. She founded the Bone Marrow & Cancer Foundation (BMCF) in 1992 to help patients and their caregivers facing bone marrow and other transplants. In 2018, she expanded all services to cancer patients and their caregivers. In 2022, BMCF introduced Cancer Buddy, an app to connect transplant and cancer patients across the globe with another person, a cancer buddy, facing the same diagnosis. Christina talks about the BMCF financial and community services available to cancer patients, including testicular cancer patients, in this episode of Don’t Give Up on Testicular Cancer from the Max Mallory Foundation.

Transcript

Navigating Cancer and Stem Cell Transplants: Season 2, Episode 15 

Summary Keywords: Bone marrow, Bone Marrow and Cancer Foundation, Cancer Buddy, Christina Merrill

00:02.83

Joyce Lofstrom

Hi, this is Joyce, and with me today is Christina Merrill. She began the Bone Marrow and Cancer Foundation in 1992 and she has touched the lives of thousands of children and adults since that time. She's dedicated her life for the past thirty years to improving the quality of life for cancer patients and bone marrow transplant patients in their families while attending Columbia University School of Social Work Christina interned at Memorial Sloan Kettering Cancer Center and pediatrics and worked with adult cancer patients at Mount Sinai Hospital. These hands-on experiences changed her life and she knew she wanted to provide patients and their families with the necessary support to navigate their cancer journey. Her passion for patient support and advocacy led to founding the Bone Marrow and Cancer Foundation. Since its inception the BMCF, which is what we will be calling it during our discussion today, has connected patients and their families and essential resources and programs to meet patient and family needs and all of this is free of cost. Christina received her master's degree in social work at Columbia University and received the university's social work alumni association Hall of Fame and Pioneer award. She is raising four sons, ages 18, 21, 23, and 27. So Christina, thank you for being with me today and welcome.

01:36.34

Christina Merrill

Thank you, Joyce, it's a pleasure to be here with you and to share the work of the Bone Marrow and Cancer Foundation and some of our wonderful programs.

01:45.69

Joyce Lofstrom

Yes, I'm excited to be able to talk with you about that I know you're celebrating your thirtieth anniversary of this year. So why don't we start with that and talk about the organization that you founded.

01:55.66

Christina Merrill

Yes, well, it's hard to believe that it's been thirty years and it doesn't seem like work for me at all. It's been a gift that I've been able to help so many cancer patients and their families over my thirty years and I'm passionate about. This cause and about this community. So, it's been inspiring for me to meet so many incredible people that basically their lives have been turned upside down because of a cancer diagnosis. To be there and help them and their families is my, you know, privilege and it's been a creative process as well as I've been able to develop these wonderful programs for cancer patients and their families to really help support their experience while they go through this really life-changing time in their lives.

03:00.45

Joyce Lofstrom

It's wonderful that you were able to do this for everyone, Christina, and I know you know how we talk about this on the podcast. We talk about how people wind up where they are in in life and so I know. You began as a homeschool student and wound up as an award-winning social worker with a master's degree from Columbia University so tell us a little bit about your life. You know, starting out at home with homeschooling. I know you were an equestrian and had much success with that endeavor. 

03:34.70

Christina Merrill

Yes. So, I grew up in California and my family was in the equestrian world as well as my father was in the music business and so we did a lot of traveling and I ended up being homeschooled and so that we could stay together as a family and travel, and so my dedication during my equestrian years because I was, you know, very dedicated to that world and to my competition and that really prepared me for running an organization for 30 years. I think being an athlete and being dedicated to your sport and training and all that it takes to really be at the highest level in your athletic abilities and competition takes a tremendous amount of dedication and focus. And I really feel like that translated over to me starting the bone marrow cancer foundation 30 years ago. And I've always been a caregiver. That's my personality, so it was social work. The profession really was a perfect entree for me to be able to use my abilities and my talents to help others. And so I'm just grateful that you know I was able to do that, and also, raise millions of dollars over the years for cancer patients.

05:24.30

Joyce Lofstrom

Well, you know I think your overall goal is impressive and, you know, to give patients and their families the necessary support so that they can navigate their cancer journey. And that sounds really basic. But as you said at the beginning a cancer diagnosis can really upend your life. And I know you have many services available to help people during their journeys with cancer. So can you just talk about some of the services that you have and maybe share any patient-focused examples that you can?

05:55.83

Christina Merrill

Yes, So the Foundation's mission has always been patient advocacy and social services. We don't give any support or funding to research because there are a lot of organizations out there that do that sort of work and I really found that the most important aspect for patient care is all the ancillary needs of patients that often get overlooked--by medical professionals and the healthcare system, and so forth, and if you don't have all those ancillary aspects in place, it's really hard to get through treatment So, such as having a caregiver having financial support to pay for your copayments to your health insurance if you have health insurance and, you know,  transportation to and from a hospital and to your doctor's appointment accommodation so that you can go to a state-of-the-art medical treatment facility. Let's say you are in a rural area and you want to go to a treatment center that's in a city. You know you now have all those costs associated with trying to get the best treatment for yourself and it's sometimes inhibiting and impossible for a family to do so. That's where the bone marrow cancer foundation really jumps in and tries to find all that support for families and for patients that they can get the treatment that they need at the best facilities for their specific diagnosis. And so we have some great programs that we have a program called Carelines which is similar to--I always compare it to a Gofund Me. It's similar to a Gofund Me except it's specifically for cancer patients. And it doesn't affect a patient's social services, such as, let's say, disability, and it's seen as a gift to the patient. So, the patient does not have to pay tax on that money because that money is given to them from a nonprofit. And to help them for their medical needs and it's a great way for people to donate to the patient as it's a tax deduction as a donation because it comes to the Bone Marrow and Cancer Foundation for our families.

That's one great program that we've raised millions of dollars for families over the years and then we have also some great counseling programs. We have a great counseling platform where patients and family members can sign up and then they can get free psychotherapy around their cancer treatment and what they're going through and then we also have this great new program that we have just launched in the Apple store. It's called Cancer Buddy and it's a peer support program that allows patients and caregivers and survivors the ability to upload their information on this app and it's a free app in the Apple store and they can connect to other people that are having a similar experience. Peer support has been documented and it's an incredible support system for patients that are going through cancer and they can relate to somebody else that's also going through a similar experience. So it's an incredible program that we're really excited to get out there to the cancer community.

10:02.78

Joyce Lofstrom

Wow I just I want to comment on a few of the things that you talked about, because you know.  when my son Max was going through his testicular cancer, we had some of those situations that you mentioned, and one was to be able to go to a medical center that is well known and has known what it's doing, I guess I'll say, when treating a specific cancer and for him you know, we had to travel out of Chicago area to Indianapolis, where which is where we went.

10:38.55

Joyce Lofstrom

You know it's hard to do that. I mean, we were lucky because it wasn't that far away for us, and we did take advantage. They had some housing recommendations, but you know if you're there for a week or more, you have to figure that out and it's hard to do, I mean it as a parent.

10:50.98

Christina Merrill

Yes.

10:55.34

Joyce Lofstrom

Taking care of someone, and he did have a caregiver, but you made a good point about caregivers I mean, what's your experience with that? Do you find that many people you have dealt with don't have someone like an advocate or a caregiver?

11:10.30

Christina Merrill

Yes, it's really sad and heartbreaking because at some of these treatment facilities, let's say if you're going to have a bone marrow transplant, which is a very lengthy and complicated process if you don't have a caregiver to help you. They won't even really approve you for treatment because it's too difficult to do on your own and so a lot of people don't have the caregiver, and also for the caregivers when a patient does have a caregiver. Their lives are turned upside down,  so it's not just about the patient but it's about the caregiver too, because they often have to take a leave of absence from their job or leave their own families and be uprooted, to go with the patient wherever that may be, whatever treatment facility that is best for them, and they feel isolated as well. They also could be financially now burdened with not being able to have work and a job and all of that. We really try to support the caregiver in this process as well.

12:30.79

Joyce Lofstrom

That's wonderful. It's something just based on what you said that it's very much needed. Yeah, I know we're going to get more into Cancer Buddy too as we keep going tell us a little bit about just transplants in general.  On your website, you have almost sixty different diseases that you list that require transplants and I'm not knowledgeable on that and I would guess that some of our listeners aren't either. Can you just tell us a little bit about the transplants that you focus on?

13:04.83

Christina Merrill

So, bone marrow or stem cell or cord blood transplant--it's really a lifesaving treatment for many different types of diagnosis and thirty plus years ago it was kind of the treatment of last resort. A patient would get a transplant if there really wasn't other options for them and now it's really a first-line therapy for many diagnoses and a cure for a lot of different types of cancer and it so it's a treatment for many different types of cancer--let's say leukemias and lymphoma  treatment and all of that. But also, it's for patients that have immune-compromised different disorders that they're born with. And sickle cell anemia and all sorts of 70 different types of diseases that are non-cancerous as well. So, it's a very lengthy process because you go through the traditional chemotherapy and so forth, and then you have your transplant, and you have to really be very isolated for at least one hundred days post transplant so that your immune system starts to engraft with the new bone marrow or stem cells. So, it is a very long recovery and patients really need a caregiver. They need a big support system around that.

14:49.83

Joyce Lofstrom

Well, I didn't know it was a hundred days of isolation after you have the transplant. That is a very long time after you go through all of that, and then the isolation.

15:02.67

Christina Merrill

Yes, and of course during Covid, you know, so many people were isolated and especially it affected cancer patients, because in transplant patients their immune systems are so compromised to begin with.

15:18.85

Christina Merrill

You know they were very fearful, and it was a very scary time and that's for something like Cancer Buddy. With this app, you could create a whole community for yourselves to meet other cancer patients that are going through something similar and it offers a lot of support because everything's online or through an app and that's kind of the direction that now a lot of these support services are taking.

15:51.22

Joyce Lofstrom

That's true, and I think the other benefit of using an app is that it's global. You can reach so many people who might you know might need that service or want to connect with someone. And I think you know life is global now. So it's great.

15:54.86

Christina Merrill

Yes.

16:00.39

Christina Merrill

Yes, so yes, it is. Yeah, everything has changed you know, post-Covid, in terms of you know people are connecting much more. So obviously.

16:08.83

Joyce Lofstrom

Great asset to have that. Tell us a little bit--and you mentioned it at the beginning, Christina--your social work background in the founding of your organization. How did that sync?  You have the social work experience in academic training, and then you founded this organization. Anything you can share about that with us?

16:44.76

Christina Merrill

Well, you know we saw a need and a gap in the healthcare system that really needed to be addressed and so it was. Just as I was inspired by my patients. You know, working in pediatrics with patients with children and then and with their parents and seeing the suffering and what they were going through and how their lives were turned upside down and they needed everything from emotional support to financial support. Initially our main flagship program was a financial program, and of course we have pivoted some since the you know, the initial flagship program, to providing financial assistance. We have many other programs now, but that was  what I saw initially and this was in in the day of when people didn't have really cell phones yet.  They sometimes had to turn on a phone in their hospital room, or to put the television on might cost them $10 a day or $20 a day and these families did not have that kind of money to even do so.

18:10.14

Joyce Lofstrom

What have you seen as the biggest challenge for people who have to have a transplant and navigate that journey?

18:23.80

Christina Merrill

I think the biggest challenge is that they need to kind of often be uprooted from their homes and from their environment and their support system and go to a state-of-the-art treatment facility. Where they don't have that support and therefore need organizations like the bone marrow cancer foundation to really step in and help give that support and guide them and help them and their families.

18:56.25

Joyce Lofstrom

Yes, I would agree, I think, just that travel in general and also the length of time that you mentioned. It's more than I think people understand at the beginning of a journey like that.

19:00.87

Christina Merrill

Yes.

19:09.28

Christina Merrill

Yeah, and now of course about four years ago we rebranded because we saw that our programs were not specifically for everybody just going through the treatment of a bone marrow transplant. But also for all patients going through just cancer treatment. All of our programs now are very focused on anybody diagnosed with cancer.

19:34.12

Joyce Lofstrom

Oh Christina, that's really important for us to emphasize. That's wonderful. So anyone going through cancer treatment can take advantage of your services, right?

19:42.16

Christina Merrill

Yeah, anybody going through cancer treatment or having a bone marrow transplant and for instance Cancer Buddy is specifically for anybody with cancer. So we're really focusing on just the diagnosis of cancer. That's what that program is for.

20:05.58

Joyce Lofstrom

Just so I'm clear, the other services you mentioned, the financial and caregiver support, that's really more focused for bone marrow transplant patients. Okay, that's what I want to make sure that we are clear on. And we talked about Cancer Buddy. You want to talk with us about, and maybe tell us how to find your app, Cancer Buddy? You said it was in the app store.

20:27.72

Christina Merrill

Yes, so Cancer Buddy is a free download in the app store and it's right now currently for IOS and will eventually be an Android system as well. Right now it's on an Apple phones and anybody who has an Apple phone or an iPad can download.

20:55.99

Joyce Lofstrom

Okay, and if our listeners want to find the Bone Marrow Cancer Foundation. Just Google that name is probably the best way to find it.

20:58.29

Christina Merrill

Just go to bonemarrow.org, our URL on the web and all of our programs.

21:13.43

Joyce Lofstrom

So that's an easy one to remember.

21:14.90

Christina Merrill

All of our programs are offered on our website and people can sign up for them right there on the website.

21:24.69

Joyce Lofstrom

Ok, so again, that's bonemarrow.org for our listeners. So, what's next for you for the bone marrow cancer foundation or anything you want to share?

21:36.20

Christina Merrill

Right now we're focused on all of our programs. We're also focused on getting Cancer Buddy out into the cancer community and getting users on there so that the app will be as useful as it can be for users. So that’s been our focus, to really create a community with Cancer Buddy.

22:04.69

Joyce Lofstrom

Ok, and my last question is one that's fun I think but is there a song that when you hear it you have to sing along to it?

22:16.67

Christina Merrill

Um, oh gosh. I haven't really thought about that.

22:23.70

Joyce Lofstrom

Well, that's ok I just you know I'm a big Beatles fan. So, I always say Beatles, anything Beatles. Max and I liked "Let It Be." That was the song I we sang in the hospital together. So, I remember another Beatles song.

Christina, I want to thank you for being with me today and sharing about your Bone Marrow Cancer Foundation and your app Cancer Buddy, for anyone with cancer who wants to connect.

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