11 things raising a terminally-ill child taught me about parenting

Written by Erin Santos, Originally published on village (2013)

When someone tells you that your child will not survive a terminal disease, you quickly begin to look at raising her in a whole new way. I lost my 7-year-old daughter Isabella to the rare pediatric cancer neuroblastoma in 2012. Here’s what I learned from raising my terminally-ill child—and how it’s helping me parent Isabella’s two younger siblings.

1. Be in the picture.When you know have a limited amount of time with your child, capturing moments is critical and you make sure that you’re not the only one snapping photos. The years go by quickly for healthy kids, too—don’t spend them hiding behind the camera.

2. Just let it go.So she wants to wear her best party dress to school or even dye her hair red. When your child is sick, these types of battles often don’t phase you. Yes, you need rules and expectation for your child, but some of these less important things can roll off your back if you’ll let them.

3. Doctors don’t know everything. We put a lot of faith in the medical community to have all the answers. And doctors are forever cautioning parents to avoid doing their own research on the internet—but you can and you should. You are smart enough to sift through what’s reliable and what’s not to get more information and possibly even find a new treatment or trial that might help. Trust that you are the best advocate for your child.

4.You can’t do it without help. Raising a terminally ill child is a full-time job, and the only way you get through it is allowing people to help you—whether it’s picking up groceries, mowing your lawn or ferrying your other kids from school. But all parents need a hand—don’t wait until you’re in a crisis to accept it.

5. Death is real and final. When you know your child is going to die, you really think you know what that means. But even as you’re going through the last stages of death, it’s hard to really grasp what’s going on. Losing your child forces you to face the issue. Everyone has to deal with death at some point—it’s important to find ways for your family to talk about it.

6. You can have more good times than bad. At times it can be hard to carry on when you know how the story ends. But with some effort, you can create amazing memories so that you laugh more than you cry. Take your kids to Disney World, have cake for lunch, play hooky from school to get a manicure. It doesn’t have to be all bad all the time—you can tip the scale in the right direction.

7. You’re stronger than you know. When your child is sick, you’ll do whatever it takes to help—changing wound dressings or organizing fundraisers to raise awareness for your cause. You tap unknown resources of strength and courage. Whatever obstacles you or your child face, don’t let anyone push you around.

8. Everyone has an opinion. If you chose to share your story with the community, your life will be under a microscope. People will question every step you take, every trial you enroll in and have no problem telling you what they think. “Have you looked into this hospital or this drug?” Everyone will always have an opinion on the choices you make and you quickly learn to ignore anything that’s just not helpful.

9. Take advantage of quality time. When you spend hours upon hours of hospital time in treatment rooms, overnight stays, emergency rooms and waiting rooms, you eventually learn to put down your phone or computer to try to be in the moment as much as you can. Time together with your kids can be meaningful and beautiful if you give it the attention it deserves.

10. You’ll be jealous of others. There are days when it’s impossible to watch families with healthy kids. Listening to a friend complain about their child’s ear infection will drive you mad. But jealously affects everyone and it’s important to try to move past it—or at least learn to live with it.

11. You WILL have regrets. No matter how hard you work, what drugs you try or where you take your child for treatment, things will eventually catch up to you. You will beat yourself up on which fork in the road you took that caused the ending, but in fact their time just ran out. Whatever difficult situation your child faces, try to limit your regrets and be confident in the decisions you make. You’ve done the best for your child that you can.

Erin Santos is a freelance writer, blogger and president of the Isabella Santos Foundation (ISF), a nonprofit organization dedicated to raising funds for neuroblastoma and other pediatric cancers. Erin and her husband founded ISF when their two-year-old daughter, Isabella, was diagnosed with neuroblastoma. Though Isabella passed away in 2012, the foundation continues its mission in hopes of saving other children. Follow ISF on Twitter and Facebook.

A version of this story originally appeared on iVillage.

Bull Engineering

As our fundraising season moves full steam ahead with our Coffee for a Cure events scheduled at the end of March, we want to introduce you to some amazing companies that have decided to partner with us for the 2017 year as a Sustaining Sponsor.

We are excited to have Bull Engineering aboard as a 2017 sustaining sponsor.  Bull has supported the Isabella Santos Foundation for years.  We met them when their child was in Isabella’s brother’s class years ago.  Love to see  connections and relationships grow.   Thank you to Bull for supporting Isabella’s mission to find a cure for Neuroblastoma.  We appreciate their support of our local Charlotte community.

Bull Engineering

Bull Engineered Products is a full service, turnkey injection molding source located in Charlotte, North Carolina. From design and rapid prototyping to assembly and delivery, we can manage a complete parts program and work behind the scenes to ensure that the tightest of tolerances are met. Bull Engineered Products is committed to providing quality parts at a competitive price.

Visit the Bull Engineering website

New Innovations. Local impact.

As our fundraising season moves full steam ahead with our Coffee for a Cure events scheduled at the end of March, we want to introduce you to some amazing companies that have decided to partner with us for the 2017 year as a Sustaining Sponsor.

The Isabella Santos Foundation and Levine Children’s Hospital has had a special partnership for years since Isabella was treated at LCH for neuroblastoma.   However, 2017 brings our partnership with Levine Children’s Hospital to the next level as they sign up to be a sustaining sponsor and we collaborate to bring an innovative pediatric cancer treatment to Charlotte, MIBG Therapy.   MIBG can be used to successfully treat neuroblastoma (with minimal side effects!), but a high-dose radioactive chemical that requires a special room for the patients to stay. Isabella received MIBG therapy in Philadelphia when she was filled with cancer and it destroyed it all.

We look forward to educating our supporters all year long about MIBG therapy.  Our passions are strong and very much in line and together we will make a huge impact in Charlotte (and well beyond).

Levine Children’s Hospital

Whether your family is dealing with a child’s sudden, serious health concern or a chronic illness, you’ll find help and support at Levine Children’s Hospital in Charlotte. Levine Children’s Hospital cares for patients in a warm, child-friendly environment, to help them feel better as they get better. They do it by involving you – the family – every step of the way.

Visit the Levine Children’s Hospital website

Maxim Tickets. For all your Sports, Concert & Theater Ticket Needs

As our fundraising season moves full steam ahead with our Coffee for a Cure events scheduled at the end of March, we want to introduce you to some amazing companies that have decided to partner with us for the 2017 year as a Sustaining Sponsor.

Looking for a place to book your sports, concert and theater tickets?  Maybe the super bowl next year?  Maxim Tickets is your answer.

Maxim Tickets is a HUGE supporter of ISF and decided to give back even more to our local Charlotte community as a sustaining sponsor for 2017. This group consistently donates event tickets to the Isabella Santos Foundation for our auction and giveaways. We love our local businesses supporting their local childhood cancer non-profits.

Check them out for all your sports, concert and theater ticket needs!

Maxim Tickets/PSL Source

Maxim Tickets has operated from Charlotte, NC for over a decade. As one of the industry’s premium independent broker of high-demand tickets, Maxim Tickets is known for a superior selection, great prices, and service. Memberships include the National Association of Ticket Brokers (NATB), the Better Business Bureau (BBB), and the Charlotte Chamber of Commerce (CCC).

Visit the Maxim Tickets website

Every Drop Stays Here. Save Local Lives.

As our fundraising season moves full steam ahead with our Coffee for a Cure events scheduled at the end of March, we want to introduce you to some amazing companies that have decided to partner with us for the 2017 year as a Sustaining Sponsor.

Community Blood Center of the Carolinas, CBCC, has been near and dear to our hearts since Isabella received numerous blood and platelet transfusions to help her stay strong and fight neuroblastoma.  Since Isabella passed, CBCC has sponsored our 5K/10K & 1 mile fun run for Kids Cancer every year in honor of Isabella. And because CBCC helped sustain Isabella’s life while she was fighting, we host our annual Blood Drive every year on Isabella’s birthday (March 9th).  We absolutely love this partnership we have with our local blood center.  This year, CBCC is taking their support a step further by becoming a 2017 Sustaining Sponsor.  We couldn’t be more thrilled.

Isabella and her daddy, CBCC Blood Drive, 2012

Many people may not know, but cancer patients are the #1 recipients of blood products.  Sharing Isabella’s story allowed CBCC to show people first-hand the importance of donating blood and hosting blood drives in our community.  Although Isabella lost her life to neuroblastoma, she would have never survived as long as she did without CBCC and the blood products she received.

You can help!  Join CBCC to save local lives by donating blood or platelets, or by organizing a blood drive at your workplace, organization or house of worship.

Remember:  Every drop stays here.  Saving local lives.


Community Blood Center of the Carolinas

CBCC is an independent, locally managed, non-profit community blood center. We are the primary blood supplier to the region’s patients and hospitals.

CBCC is a member of the America’s Blood Centers, a group of 67 independent blood centers that supplies 50 percent of the country’s blood. The excess supply in the Carolinas is shared with other communities when needed.

Visit the Community Blood Center of the Carolinas website