When Santiago was born, he made me a mother and my husband and I experienced joy in ways we had never known possible. Santiago remains perfect to me, and the joy he created is still very real. But our life looks quite different than what I imagined when I held him in my arms that first time. Instead of counting grades, activities, sports scores or childhood crushes, we count procedures, medications and vital signs:

Why? When Santiago was four, he was diagnosed with metastatic Medulloblastoma, which is a type of brain tumor that only children get. Cancer was frightening, and treatments were difficult. But Santiago continued to walk and talk like a normal child. He was the same free-spirited child with the same devious sense of humor we all loved. Until August of 2016, when an injury resulting from radiation treatments changed everything.

Santiago’s brain stem suffered from massive necrosis as a result of harmful radiation. Necrosis is defined as death of living cells inside the body. As a result, my beautiful, perfect boy is still with us on the inside, but he can no longer show it on the outside. He is cognitively present, but physically paralyzed. Santiago is unable to move, speak, swallow, or even breathe on his own. He now requires ventilatory support, nutrition via a gastric tube, and full-time medical assistance. He can only shift his eyes and mouth ever so slightly to communicate with us. Those momentary glimpses of our precious boy are what fill us with hope and fuel us to continue working toward our dream of a full recovery.

Our son became a victim of the “standard of care,” which includes harmful and often barbaric ways of treating childhood cancer. Good “survival” rates seem to outweigh the need to find new, innovative cures that do not disable the very patients they are trying to help. Today, despite advances, childhood cancer patients have very few options with respect to treatment.

After enduring all this, on November 15, 2017, we received the worst news a parent could ever hear: “The tumors are back, and your son has six months to live.” We refused to give up on our son and researched endless ways to save his life. What we found was a brick wall where nobody wanted to treat Santiago because of his paralysis. The same medical system that paralyzed and nearly killed him turned its back, refusing to give us access to the latest available treatments via clinical trials. We were devastated beyond belief. How could they deny treatment because he is not able to walk? Do they not take into account that our son is still there on the inside, can smile, cry and communicate with his eyes? Does that not matter? Does our son’s life not matter?

Then, we found hope. We spoke to Dr. Johnson, sponsor of a promising immune trial. Out of the kindness of his heart, he agreed to write a separate trial for Santiago. He spent his New Year’s Eve writing the specialized trial, which was a huge task, as the medication was not approved for use via a feeding tube. This not only required the FDA’s approval, but also funds to ensure what he was getting via a feeding tube is the same as receiving the treatment orally. Cannonball Kids’ cancer stepped in as another angel. The foundation funded Santiago’s feeding tube part of the trial and paved the way for other kids with feeding tubes.

We are happy to say that Santiago is still with us after almost a year since relapse. His tumors are stable, thanks to Dr. Johnson and CKc’s vital support. Our road is not over, but thanks to organizations like CKc, there is hope for families like ours across the globe. Thank you Cannonball!

If you wish to follow Santiago’s story, you can do so on Facebook at “Thumbs Up For Santiago.” Please pray for a miracle for my boy, my baby, my world.

Sincerely,

Claudia Martinez
Santiago’s Mom

YES! It is arguably the most powerful three-letter word in the English language. It’s a word that when chosen, speaks volumes about your outlook. One that can pave the way for success. It’s an answer that I believe can make HISTORY. Cannonball Kids’ cancer is proof.

I’m not ashamed to admit that I’m an avid reader of inspirational books. Over the years, many have shaped my actions and my character. But a few years back, when I read Shonda Rhimes’ book The Year of Yes, it changed me in a way no other book had before, or since. And it indeed paved the way for an important “YES!” this year. A “YES!” that made Cannonball Kids’ cancer a part of history.

As you may know, when CKc began, our dream was to save one child. Just ONE, we said. Imagine if we could give one family the gift of TIME. This dream of one has now—in just four short years—come true NINETY times over. Ninety children have a treatment option because of Cannonball Kids’ cancer. One of those children is the precious boy named Santiago, whom you just read about.

Earlier this year, I was contacted by a researcher I know well, and he told me about a child who desperately needed to be enrolled in an immunotherapy trial we support. But this particular child didn’t qualify for the trial because he cannot swallow pills. In fact, he cannot swallow at all because he’s paralyzed. I was then asked if we would consider funding a separate, single-patient trial that would allow this child to receive the medication through a gastric tube in his stomach. Administering immunotherapy through a g-tube had never been done before, but were we willing to help them try? Were we willing to extend a grant to the hospital so they could give this child an option? A child who otherwise had no more treatment options left? YES! 1,000 times over, YES!

When I later had the opportunity to meet Santiago and his family, his parents both embraced me firmly, genuinely. Then Claudia, whose letter you just read, placed both her hands on my shoulders and looked me square in the eyes. With tears streaming down her face, she said, “Our son is alive because of you.” I muttered something, shrugging aside her praise and trying hard not to cry. She stopped me, grabbed my shoulders again, squeezing this time, and said “No! Listen to me! My son is alive because of YOU!”

Despite her insistence, I still couldn’t accept her compliment. I wasn’t the one to thank. I may be the person who had the privilege of giving the “yes,” but I was only able to do that because of the combined force of people who have said “yes” to CKc. That includes you reading this mailer. It includes the volunteer who asks for auction items or stuffed swag bags for our gala. It’s the staff who works in the office, and the board who guides us. It’s the school who hosted a card club. It’s the researchers who make the science possible. And it’s the advisory board who meticulously reviews the grant applications. It took a village to give Santiago an option; and, that strong legion of YES people is Team CKc!

This team is able to proclaim that it has once again been our most successful year. There’s nothing more fulfilling for an Executive Director than continuous, mission-oriented growth. But it doesn’t satisfy my fire. Not even close. And I hope it doesn’t dampen yours either. Because one child was not enough for CKc…and neither is ninety. There are still seven sets of parents in the U.S. who woke up this morning and got dressed for their child’s funeral. That’s seven too many! We won’t stop until it’s zero!

Our goal before the year’s end is to say “yes” to one more child. When we average all of our clinical trials at CKc, it costs about $10,000 per child, per year. We want this campaign to result in one family, like Santiago’s, being told there IS a treatment option. We want one more child to avoid hospice in 2019. One more child to SURVIVE cancer. And we expect that survivorship shouldn’t mean 14 machines a day or  1,000 medications per month. It shouldn’t just mean life, it should mean LIVING! Which is why Cannonball Kids’ cancer isn’t only dedicated to funding research, we’re committed to supporting the BEST research.

Would you consider being part of reaching our goal? If you’ve already given to CKc, how about doing it monthly? If you’re already one of our “Creating Options Together” monthly donors, would you consider increasing the amount? All it would take for us to say “yes” to another family is 28 people committing to $1 per day for all of 2019. That’s it just $1 a day! Will you be one of the 28? Will you say “YES!” with us?

With Gratitude,

Melissa Wiggins
Executive Director