Danielle Leach is an extraordinary woman. After losing her beloved son Mason to the scourge of cancer, Danielle decided that she would commit her life to raising awareness and funds to help defeat childhood cancers. She was part of this year’s 46 Mammas event in D.C. where she and 46 others shaved their heads in solidarity with their loved ones who have been affected by the disease. We spoke to Danielle about her life, her involvement with 46 Mammas and her own fund The Mason Leach Superstar Fund.

Tell us how you became involved in 46 Mommas.
I became involved with the 46 Mommas by reading about them online. The childhood cancer community online is very much interconnected. I read about their efforts and heard they were looking for mommas for the class of 2011. I went to the website, www.46mommas.com, and immediately felt compelled to join.

In my professional life, even before having my son, Mason, I had worked in cancer as a program development and implementation person, as well as in patient education and navigation. I had started in that field because of my family's experience with cancer. My sister, Noel, is a childhood cancer survivor.

She had rhabdomyosarcoma at age 13 and survived. What spurred me on to do a crazy thing like shave my head? I know what it is like to sit with the doctors and hear that there are no other options to keep your child alive.

I know what it is like trying to find some new drug or treatment to save your baby's life. I have held Mason during times of intense pain and suffering from his treatment. I have held my baby in my arms as he died. That is why I shaved my head−for Mason and every other child who has battled this disease.

My son received some of the same drugs my sister did 20 years ago. The need for pediatric- specific cancer research is clear. The St. Baldrick’s Foundation is funding these types of projects, and that is why I wanted to be a part of 46 Mommas.

What is the mission of 46 Mommas?
We are 46 Mommas on a mission to raise awareness, raise funds for research, and inspire others to help fund a cure for childhood cancer. Each year a new class of 46 Mommas is inducted into the cause to empower and engage mothers of children with cancer. The number 46 is significant. On average, each weekday, 46 families receive the news that their child has cancer. Through increasing awareness of childhood cancer and raising funds for childhood cancer research by shaving our heads, we hope to one day be a group that no longer needs to exist.

Tell us about Inspire. What do they do, how are you involved with them?
Inspire builds online health and wellness communities for patients and caregivers, in partnership with national patient advocacy organizations, and helps life science organizations connect with these highly engaged populations. These online peer-to-peer support networks are a lifeline to many patients and families as they navigate their health conditions. I am the Director of Partnerships for Inspire. I am responsible for creating these relationships with the national health organizations to create these support communities. I came to work for them after Mason died. Their mission and vision to create a safe, trusted place where patients and families can connect was very meaningful to me.

What recommendations or advice do you have for the parent of a child who is diagnosed with cancer? What should be their first steps?
Every family is different, but the most important thing when your child is diagnosed with cancer is to always ask questions. Do not be afraid to question and ask for more information. Seek out as much information as you can about your child's diagnosis. Find trusted places for information like the NIH website and find online communities of parents like the American Childhood Cancer Organization’s Inspire (www.inspire.com/ groups/american-childhood-cancer-organization) to talk with other parents. But my biggest piece of advice is to always ask questions.

One of the first steps when your child is diagnosed is to get your system of support organized. You are going to need help and you can't be afraid to ask for it. If you have other children, ensure they have trusted people in place to talk with, to pick them up and keep their lives as normal as possible while their sibling is sick. You will be at the hospital a lot in those first few months especially.

Designate one or two key people that can field calls and questions. You cannot do this alone and you need to ask for and accept help from family and friends. It is easy to get overwhelmed and that is normal.

What shouldn’t they do?
Not communicate. Your instinct may be to protect everyone from the horror of what is happening to your child and family. It is crucial to communicate what is happening both within your family and outside your family.

It is vital to tell kids the truth in age appropriate ways. They understand more than we know. The hospital often has resources and staff to help you find ways to talk to your kids about cancer. This is especially important for siblings. It is okay to say, "I don't know what is going to happen." But you can say what you are doing to try to make things better. Communicate with the outside world. I highly recommend setting up a blog to tell people what is going on with your child. It saves you a ton of time and phone calls. You can communicate what you need, whether it be prayers and comfort, or meals for your family while you are in the hospital.Our blog for Mason kept all our friends and family connected with us as we navigated Mason's treatment and the end of his life.

You started The Mason Leach Superstar Fund in honor of your son who succumbed to cancer at age 5. How can we help support his fund?
The Mason Leach Superstar Fund (http://masonleachsuperstarfund.com) is a designated fund at Children's National Medical Center. Its mission is to encourage and empower patients to recognize their inner strength and feel like a “superstar.”

What does that really mean?
It means we support existing programs at the hospital and provide the extras: funds, toys, arts supplies, gift cards, and laundry detergent−anything we can do to make things easier for kids while in the hospital.

We support “sweating the small stuff.” It is our privilege to support the many great programs Children’s National Medical Center offers for its patients. The Mason Leach Superstar Fund also gives an opportunity for Mason’s friends and community to do something positive in the wake of tragedy and learn about community service.

The Mason Leach Superstar Fund honors and supports our littlest patients. We know that a clean favorite blanket after being sick all day or choosing a Batman band-aid can bring a smile. We know that keeping a child busy who is in the infusion room all day can help both the child and family get through a tough day. We know that giving out a soccer ball may help a child get out of bed, move around and feel normal. We have been there. We know how those small gestures can really help a child and family while in the hospital.The little things make a big difference.

How can we help?
Make a donation today: Donate directly to Mason’s Fund at Children’s National Medical Center at www.childrensnational.org. Just be sure to designate it for the Mason Leach Superstar Fund.

Encourage others to donate to the fund. One simple way is to send an email to family and friends with a link to the fund. If everyone sends this to at least ten people from their email list, we believe we will reach our goal of $25,000 for the fund this year.

Please share the link to the fund's website on Facebook and Twitter with friends. You can also create a birthday wish on Facebook supporting the fund. It’s simple and easy to do and has proven to be very successful.

In kind donations: We are committed to helping kids learn how to give back in their community. Children’s National does so much here locally that has both national and international impact. We want to help create that connection to the hospital that is right in their backyard. Kids can collect donations at their birthday parties such as gift cards, toys, toiletries, crayons and coloring books. This is a great way to encourage community service. The hospital is always in need of donated new items to help the children and families at the hospital. A community project can be to collect items for the hospital. See the Children’s National wish list at www.childrensnational.org/GetInvolved/ DonatePatientFamilies/wishlist.

In this tangible way, kids and families can be involved in helping the Mason Leach Superstar Fund have a real impact on kids and families in the hospital.

As a parent, there must be apprehension about letting your ill child just be a child. How does one balance their treatment needs with their natural need to just be a kid?
For me, that was one of the hardest parts of Mason being sick. He just wanted to be a regular kid, playing with his brother and living his life. Often he could not do that. We had to say no a lot. It was difficult to remember that he needed the rules and structure of his family to remain the same as much as possible. He still got put in timeout and he could not hit his brother. Th e rules still applied. In some way, that helped him feel safe and not so different. Cancer was something he had, not who Mason was now.

It was important to find opportunities for him to do the things he loved, like go to school, play soccer and enjoy baseball and summer camp. Our community, school and organizations were very supportive of him participating in the ways he could, when he could. To see him running with his skinny legs on the soccer field was frightening, but the joy on his face when he played was worth me worrying on the sidelines. It is important to advocate for and seek those opportunities for your child to participate in "regular" life when they can.

We were fortunate that Mason regained his ability to walk and talk after brain surgery and was so determined to be functional even when he was very sick. Other families are not as lucky and their child's life is forever altered from treatments almost immediately. Every child's experience and reaction to being sick is different. Focus on finding what they can do, rather than what they can't do anymore because of cancer.

For me the balance was to go back to basics, keep structure in place as much as we could, be fl exible with some rules, and to work with Mason to give him the opportunities to be "just a kid."

What’s next for Danielle Leach?
I will to try to be the best mom, wife, advocate and employee I possibly can as I navigate these next steps in my life. I am just a working soccer mom trying to make some sense of what happened to her family. I know life can change in an instant, so I try to focus on what I can do today, rather than look too far ahead.

For me the best way through grief is action. I will continue to help set up support systems for patients and families through my work at Inspire. My commitment to the St. Baldrick’s Foundation and its life-saving work through my advocacy and fundraising with the 46 Mommas will continue as well. And of course my heart is with the Mason Leach Superstar Fund and supporting its work to make lives of kids and families easier while going through treatment.