A diagnosis of neuroblastoma is a life altering event replete with an overwhelming number of intense emotions. Few, if any, moments in your life will ever be as mind numbing or terrifying.

Shock and confusion, together with a dreamlike numbness, are a common initial response. Gradually most of us move from this dreamlike state into a dawning sense of the reality of the situation. Confronting this reality often brings with it another wave of response, from denial to anger, to sadness and a sense of loss and helplessness.

The progression of emotions we confront as we deal with the diagnosis is the process which prepares us to deal with the new reality of a child with cancer. It is a process which, for all of its pain and confusion, is a road toward the most important discovery we make on this journey; hope.

Hope is the engine which drives us forward, not an unrealistic evaluation of the situation, not false hope grounded in denial, but real hope based on science and hard work. Not so long ago there were no successful outcomes for children with cancer. Now most children experience successful outcomes. Someday soon, we hope every child will have a successful outcome. You are going to lead a team of dedicated, highly trained and motivated professionals toward the objective of finding a solution for your child’s illness.

As we prepare ourselves for this task, we need to begin with an understanding of two vital facts; first, every day in a child’s life is worth fighting for, and second, if we are to lead the fight, we need to recognize the importance of keeping ourselves in the best possible shape, mentally and physically.

While the first point is a simple one to grasp, the second, taking the best possible care of ourselves, will require an effort.

Begin with an acceptance that it isn’t a burden you can carry alone.

Get help when you need it. Interface with other parents. The links on this site are designed to help you find these parents and connect with them. We invite you to join the community of parents of children with neuroblastoma. I promise you it will help, and you may well make some of the deepest and most rewarding friendships of your life. As you gain experience, share it with others and make the discovery that helping someone else may be the highest and most joyful calling in life.

Keep an eye on your own health. Stress, which is unavoidable, is detrimental to your health unless you can find a way to manage it. Get a health checkup, and stay close to your own health care provider. If you need professional support to manage stress, or anything else, don’t put it off.

Keep the lines of communication open with your child’s health care team. Talk to the doctors, nurses, and social workers. Make sure they hear your concerns, and ask their advice. The social services units are there to help you connect to resources available to you and your family. Find out what they offer, and take advantage of any service you think may be helpful.

Work off that tension with exercise, or yoga, or meditation, or whatever works for you.

Many find that spirituality is a great nourishment for hope. If it works for you, then explore it.

The famous 12 step programs which help people overcome addiction use techniques to deal with pervasive stress, including one which I have found useful in my own life. When stress is overwhelming, shorten your vision to include a period of time that is manageable, perhaps a week, or a day, or even an hour. Put everything else in a little filing cabinet for later attention. (I use an imaginary shoe box!)  This isn’t denial, it’s a reorganization of priorities. It allows you to focus your energy on the things which need immediate attention, while placing other things, important or not, into a queue based on priority. You aren’t ignoring things, you are just reorganizing them in a way which allows you to allocate your energy in a rational way.  It takes a little practice, but it works.

Remember, you are the key to finding and nourishing hope, and hope is key to a successful outcome to your advocacy for your child. Take care of yourself, and you will be able to manage the best care for your child.