Gang, this is a tough one. I’d like to introduce you to Melissa, the founder and executive director of the Cannonball Kids’ cancer Foundation, named for her son Cannon, who has been living with Stage Four Neuroblastoma for years.
I first heard of Melissa and Cannon through a mutual friend, and ended up finally meeting her at a fundraiser held in Philly last Spring. Some of you may remember our IG and Facebook posts: Mike and I, all dressed up, holding a yellow key inscribed with “Research is the key.” Our big grins and general photobooth antics belied the fact that only moments before, both of us had been in tears.
That night was an impactful one. Melissa talked frankly about what it’s like to have a child diagnosed with cancer. And not a child, really, but a toddler – a baby. And we learned that “childhood cancer” isn’t the same sort of cancer we thought we knew about (lung, prostate, breast, whatever), but rather it’s a set of cancers that occur only in children. Only in our babies.
We learned that most of the treatments available are adult treatments: the same chemos used by adults to fight adult cancers. And that many of the treatments used to fight childhood cancers are not only painful, but so taxing on these tiny bodies that our babies often end up dying from the treatment. We learned that even the lucky few who make it through years of treatment into remission have an 80% chance of developing a secondary cancer….because that’s what happens when you give babies and toddlers and growing children round after round of chemo and radiation.
Melissa talked honestly and heart-breakingly about the impossible choices parents of children with cancer with are faced with: One of the many decisions she and her husband faced, for example, was whether or not to radiate Cannons’ leg. There was a suspicious spot there, but if they radiated, that leg wouldn’t grow at the same rate as the other, resulting in lasting, life-long implications for a boy who is currently attending kindergarten and playing soccer.
I think back to when my own little guys were babies. I remember bringing them in for their vaccinations and feeling like I going to die when they screamed. Holding their chubby legs down for the shots while they stared at me with such betrayal in their eyes. I cannot even begin to fathom the hell that these poor parents are living in, watching their innocent, perfect little babies go through endless rounds of blood draws, chemo, radiation, and worse. To actually imagine myself or my boys in this scenario is beyond my ability to comprehend. It literally makes me feel insane.
And if all of this didn’t make me nauseous enough…. childhood cancer research is horrifyingly underfunded. The reason that so many young children are being subjected to adult chemotherapies is because there are no other options. It is a desperate situation. And the NIH funding levels for childhood cancer are, frankly, baffling: of the available funding, the entirety of all childhood cancers gets 6.5% of available funding. Making matters worse….there are actually eight different childhood cancers (with 100s of subtypes), so….doing the math here….the NIH is basically allocating less than 1% per year on research for any given childhood cancer.
I’ve said once before that the blessing (and curse) of becoming a mother is the feeling that you are everyone’s mother. And our children – for they are all our children – they need our help. Their parents need our help. The babies are undergoing treatments from which they will likely never recover, need our help. Their families, desperately waiting for a miracle – a miracle new drug, a miracle new treatment – need our help.
It takes a village. And as a village, we can help. So. This holiday season, I’d like to start a fundraising campaign for the Cannonball Kids’ cancer Foundation, a foundation started by a desperate mother, who understood that her best hope lies in research not yet funded. I feel so strongly about this cause that not only will The Mom Edit kick things off with a donation of $5K, but we will match every donation up to $20K on top of it.
If you can donate $5, together, we’ll make it $10. If you can donate $100, together we’ll make it $200. And if you can donate more….together we can all fund the lifesaving research our children so desperately need.
To donate, go to the Cannonball Kids’ cancer Foundation’s donation page. For the match, please select “The Mom Edit” from the pull-down box marked, “My donation is for…” Thank you!
I know this is a big ask – there are many causes worthy of support. So I invite you to learn a little more about Cannonball Kids’ cancer Foundation. Watch the video below that profiles parents of a precious three year old girl, Julia, who relapsed during treatment for neuroblastoma. There were simply no more options to save Julia’s life. Her parents’ heartbreak and sense loss is indescribable. As a parent, you can’t help but put yourself in their shoes. It is a tough, but extremely important video to get a glimpse of the reality which happens to at least seven families (a day!) in the US alone.
And finally, read our interview with Melissa. She’s amazing, and a fighter and someone to line up behind. (Did I mention she was 38 weeks pregnant with TWINS when Cannon was first diagnosed?? And STILL found the time to start Cannonball Kids’ cancer? She is a force, for sure.)
Our Interview with Melissa
Can you start by telling us a little about Cannon’s diagnosis? What were some of the symptoms?
Cannon started limping when he was 20 months old. I was very pregnant with twins at the time – I think I was like 38 weeks pregnant – so I was hoping that it was just a twist or a sprain or something like that. And we went to the pediatrician and they said he’s a toddler, don’t worry about it, these things happen. And then progressively each day it just got worse and worse and he reverted back to crawling. So then they sent us to an orthopedic doc. So we went and they wanted to do x-rays and of course I was heavily pregnant so I had to have Cannon go in the room with the nurse by himself and I could hear him screaming but I couldn’t go in the radiation room. And they came back in and said it looks like there’s some sort of infection in his knee and that could explain why he’s not able to walk. And so they decided to do surgery in the morning.
The next morning we were ready for surgery and they were prepping us and my mama instinct just kind of kicked in and I felt like something wasn’t right. I was watching the orthopedic doctor….and he’s looking at the screens and started making some calls and…he just looked really concerned. He came over and said I’m not going to do the surgery right now I’m actually going to send you for a couple referrals, I’m going to have some of my friends talk to you. And one of those friends, unfortunately, was an oncologist.
That night the oncologist called our room. Cannon was in the crib and my husband and I were both there and the oncologist said, “I don’t think your son has an infection in his knee, I think he has neuroblastoma”. I didn’t know what that was, so I asked and the oncologist replied, “it’s a cancerous tumor….” and I passed the phone to my husband and just ran out of the room. I couldn’t breathe.
I stayed up all night reading about kids with neuroblastoma, and I knew one thing: pray that it wasn’t Stage 4, those kids don’t make it. It kills more kids than any other form of pediatric cancer.
The next morning, the oncologist came in – we hadn’t slept all night, and Cannon was in a hospital bed with an IV and completely out of sorts – and the oncologist told us that Cannon had Stage 4. It was all over his body, it was in his clavicle, it was all down his arms, it wrapped around every organ in his body, it was down his pelvis, it was in his leg, it was in his feet, it was on his wrists, it was just everywhere. The only place that it was not was his brain which is really one of the reasons I think he’s still with us today.
I remember asking the oncologist if Cannon was going to live or die. And it’s like…in that moment I don’t think I really wanted the answer, I just like…Ok, yea but he’s not going to die, right?? And the oncologist just…tilted his head and said “fifty-fifty”. He said that Cannon had a serious battle ahead of him.
But, the world just went on, and we just finished celebrating one year over treatment with no evidence of disease. It’s been a very long journey – three and a half years of straight treatment with no breaks – but in, like, 45 minutes I get to go and pick up that little guy from kindergarten.
So you were 38 weeks pregnant with twins when Cannon was diagnosed. I can’t even imagine what those years must have been like. What was the most helpful form of support during that time? If people know of someone in a similar situation, what is something that stood out as the most helpful?
Yes – I had the twins ten days later. It was crazy. I think….throughout our entire journey, at the end of each day I wrote an update on Cannon and it was very therapeutic for me. It also felt really nice to read comments from people saying, “we’re praying in Michigan, we’re here, we’re going to do a fundraiser here in Detroit”. Whatever that place was….just knowing that people around the country were praying and thinking about him made me feel like we weren’t in it by ourselves, we felt like we had this like village behind us. That was probably the most impactful for me on a personal basis.
One thing that I found particularly chilling when I went to the fundraiser is learning that for childhood cancers right now, these kids are being given a scaled-back version of cancer treatments that are designed for adults. And as someone who has gone through chemo I know firsthand how horrific these drugs are. I can’t imagine having a child anywhere near these kinds of drugs and yet that is their only option. Can you talk about this a little bit?
One of the things that was shocking to us at first was when doctors would say, off the cuff, “oh this is just one of the generic garden variety chemotherapies Cannon’s going to have”. And I remember being completely confused. They explained that there is no such thing as children’s pediatric chemotherapy – they’re using the same chemotherapy drugs that are used to treat breast cancer, liver cancer, etc. An actual fact is the high doses that Cannon had would actually kill you. These kids get more of these drugs than adults would be able to cope with.
The reason for the higher doses is that these kids have stronger lungs, hearts, and organs than an adult. An adult’s organs have impacted by the environment – we’ve been around for a while, our heart has been used. Kids like Cannon who are only two, they’re strong inside, they have strong organs. They’ve never smoked, they’ve never drunk alcohol, they’ve never taken pills for things. So their actual ability to handle the drugs is at a higher capacity than an adult. Cannon had, for example, as prep for a stem cell transplant, 108 hours straight of high dose chemotherapy, and then his transplant after it. We were told that that treatment would likely have killed an adult. And it almost killed Cannon! He was in that room for almost eight weeks trying to recover and have his body grow back white and red blood cells. So it’s shocking that that is the way that children are treated for a pediatric cancer, but it is our reality.
At the fundraiser, you mentioned that many of these kids are dying not from the cancer themselves, but from side effects of their treatments. Did I understand that correctly?
Yes, that’s correct. Many kids will get their treatments, and then maybe five, six, or even ten years later – because of the toxicity that has gone into their blood – they’ll develop a secondary form of cancer like leukemia. About 80 percent of children treated with high dose chemotherapy and treatments like Cannon’s will develop a secondary cancer. And if they don’t, the majority of them will have some sort of lung and heart disorder. Many of them go on the transplant list later in life. And some of these kids die because their bodies just can’t handle it. Most recently, my friends’ little girl was five months old and her body just couldn’t cope. It blew up like a balloon and all of her organs failed and she died because her organs could not handle the toxicity of the drugs. She didn’t actually die from the cancer. So that’s why it’s so important that we fund research that can change that. And that’s what Cannonball Kids’ Cancer is trying to do.
So let’s talk a little bit about the funding profile. Where are the dollars coming from right now to support childhood cancer research?
The National Institute of Health has about five billion dollars to allocate each year for cancer research. The National Cancer Institute is the organization that decides how that five billion gets spent. In previous years, the National Cancer Institute has decided to allocate 4% of the funding to pediatric cancer. Now, it’s important to realize that pediatric cancer is not one disease. The phrase “Pediatric Cancer” covers at least eight different types of cancers, with hundreds of subtypes. So that 4% of funding gets divided up further.
The Cannonball Kids’ slogan is “Research Is the Key”. Can you tell us more about that, and about how Cannonball Kids decides which research to fund?
So research is the key. We believe that if we fund the right research – the innovative kind that will stop the infertility, hearing aids, secondary cancers, lung failure – we want to fund research that not only helps the kids survive, but addresses these secondary things that they’ll be dealing with for the rest of their lives. In three years we have raised one million dollars, and have funded nine research grants so far. We will have up to fifty-nine kids on our research clinical trials in ten different states around the US, but we want to double that next year. Five of the six clinical trials have never been done in the US before. It’s about thinking about outside the box, finding types of therapy that will actually change the face of pediatric cancer.
What are your funding goals for this year?
Next year, our big fundraising gala is on March 3rd, and our goal is to raise half a million dollars. But really, we look at it not just in terms of money – how much are we raising – but more importantly, how many kids are we actually helping? My goal is to prevent kids from having to deal with these horrible lifelong affects. So I measure our success by the innovative things we’re doing, the number of kids we are actually impacting, the number of states are we impacting, because accessibility is a big factor. And what are we doing to educate for change because that is part of our mission too.
Is there some research out there that you guys have been eyeing but that you don’t have the funding for just yet? Do you have a hit list, so to speak?
Yes I have! I have a list. So when people say to me do you want your check at the start of next year or do you want it now, I’m like I want it yesterday. I have projects that we’ve vetted that we are ready to fund, we’re just praying that we get the funds that we need to make it happen. So absolutely we have a list. Lots of the research that we’re looking at just currently sits on a shelf because the pediatric funding just isn’t there. And that’s frustrating for the scientists but it is also frustrating for us because we have the ability to move it if we had the funding.
Melissa, I love that people like you are out there, and that Cannonball Kids’ Cancer Foundation is out there fighting so hard for these kids, these babies. Thank you so much for talking with us today. And now…you’re going to go pick up Cannon?
Yes, I’m going to go pick up my baby from kindergarten.