Getting Started

First of all, its ok to “freak out”. You’ve just gotten the some of the worst news a parent can receive. The range of emotions you’ll feel make a roller coaster ride seem like a drive in the country. Bottling up your feelings won’t help. Eventually, in a day or two, you’ll begin to get on top of your feelings. This is an important process. It gets you ready for the work you have to do to deal with your child’s illness.

As we manage our own lives day to day, we sometimes feel that we have life more or less under our control. You’ve just received a reminder that some of life is always out of our control. None of this is your fault. You didn’t cause it, and, yes, it is terribly unfair.

In the process of regaining your emotional equilibrium you will replace despair and a feeling of powerlessness with hope, and a determination to do the best you can for your child, and for yourself.

Hope is at the heart of healing. You have a great deal to learn about this illness, and about the practice of medicine. As you learn, it will become apparent that it is not unreasonable to be hopeful.

An eminent American physician once noted that patients are not typical consumers. We can’t approach health care in the same way we approach buying a household appliance, or an automobile.  Medicine is both an art and a science whose practitioners undergo many years of intensive learning, both in training and in practice. When we’re sick, we often place ourselves in the hands of a physician, or a group of physicians, more or less with a blind faith that they will cure us. This serves us pretty well when we have a fairly simple diagnosis. It serves us less well when our diagnosis is more serious or even dire.

Medicine today is a universe of specialties. Neuroblastoma is a rare condition. Most physicians, and most care centers, have little experience with it. Fortunately, there are places that do have extensive experience with it. You will need to find a place accessible to you where this disease is not an unknown quantity. You will need to choose the place where you want your child to be treated, and the method of treatment that your child will undergo. You may be asked to make decisions between treatment methods. In short, you will be able to take charge of your child’s treatment; to be the leader of the team that manages your child’s care.

Take Control of The Illness. You may think you're helpless, but you're not. Take charge of your life with a combination of information and attitude. Be a part of every decision about your treatment. Resist the urge to leave it all in your doctor's hands.
Insist on Options. There are multiple solutions to every problem in medicine. You just have to find them. Don't be afraid of choices; embrace them.
Find the Right Doctor. Not all doctors are created equal. When you're dealing with a serious illness, it's worth the extra effort to find the best one for the condition. It can make the difference, literally, between life and death.
Build a Partnership with Your Doctor. A true partnership means that there are special responsibilities on both sides. Yours is to be informed about your illness so you can ask questions. Your doctor's part is to answer them all, fully and patiently.
Recognize that All Medical Decisions are Trade-offs. Every decision regarding treatments involves weighing costs against benefits. To strike the right balance for you, get all the information you possibly can, then look carefully inside yourself and decide what really matters.
Find an Advocate (Or Be Your Own). In a managed care environment, getting the best care can be a struggle. You can end up fighting your HMO as well as your illness. If you haven't got enough fight to go around, enlist an advocate to do the fighting for you.
Subdue the Enemy Within. When that little voice inside says, "Why me?" you must resist self-pity. Also resist feeling guilty. Yes, your loved ones are going through hell, but it's not your fault.
Build a Support Network. Recognize that you have to depend on people--family, friends, caregivers, support groups, strangers, it doesn't matter who--to get through this. But don't expect more of people than is reasonable.
Know When to Draw the Line. There's a line beyond which the price of survival is just too high, a line between what is worth fighting for and what is not. Doctors often draw this line for patients; draw it for yourself.
Never Say Never. Everybody reacts to diseases, drugs and treatments differently. Every doctor has seen "hopeless" cases turn around. For all the advancements in medical knowledge, the human body remains wondrously strange--and full of surprises.

Be informed.
Participate fully in your childs care.
Seek a second or third opinion if you feel that you need one.
Get copies of labs and scans and keep a record of test results.