Questions to ask
Placing blame
Honesty
Love and support
Listen to your child
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Your world, as a parent, has just been shattered by these words from your oncologist!

For possibly the first time in your lives, you must instantly come to terms with a word that strikes fear into the bravest of people, CANCER! Now you frantically search for the words you must use to tell your child what you have just learned. Your parenting skills suddenly seem totally inadequate! Your baby, (no matter what a child's age, he/she is still your baby) has a pain that mommy nor daddy can soothe.

Through our personal experiences in helping Len Jr. (actually, Len helped us more than we helped him) come to terms with his cancer, and ultimately his death, we will attempt to assist you in dealing with many of the emotions both parent and child will experience.

Len was diagnosed as having a Small Cell Neuroectodermal Sarcoma at age 19. In 1987, this was considered an extremely rare form of cancer and usually presented itself in young children. The symptoms were very subtle. If you want to know the symptoms, you can email me at Email me. Len underwent a bone marrow transplant during the experimental days. Zippy and I have our opinions re: bone marrow transplants and will be happy to discuss what to expect during this procedure. He had many Hickman Catheters installed. If you wish to discuss this topic, email us. Our opinions are based purely upon our personal experience and is in no way the gospel.

You will most certainly be reeling from the shock of the diagnosis your oncologist has just given you. Upon regaining your composure, critical questions must be asked of the oncologist so you fully understand;

1)    The type cancer
2)    Recommended treatment
3)    Expected length of treatment
4)    Side effects (ask for literature) from chemotherapy regiment(s)
5)    Long term prognosis
6)    Names and phone numbers of support groups
7)    Available literature defining the type cancer
8)    The name of an oncologist most experienced in that particular cancer

Your oncologist will fill out a family history questionnaire re: each of your family's health backgrounds. Should one side of the family have cancer in their background, your first impulse is to place blame on that side of the family. DON'T do it! You accomplish nothing more than to immediately place a strain upon your marriage or relationship, as well as shake your child's confidence. Your immediate and long term goal is your child. Your child desperately needs all of you now.

There will be many times when you question everything and everyone. You will most certainly question yourself, your wife/husband, relatives and God. You will lash out at everyone in attempting to find the answer, WHY an innocent child?  

No matter how painful, you must be totally honest with your child and with everyone you know. Your child, now more than ever, will be totally dependent upon you and will place a trust in you to keep he/she aware of everything that is happening to them (and to each of you). Should your child ask difficult questions (and they will), it is important you be honest with them. Be prepared to discuss death whether this is the prognosis or not. Children fear death until you gently allow them to accept the term (death). DO NOT deceive your child. You will soon discover your little bundle of joy has the heart, stamina and fortitude of a lion! Their concern becomes not of their fears or pain, but how mommy and daddy are weathering this battle.

Should your child be of school age, you should check a video out and allow the video to be shown to school mates. A picture is worth a thousand words to small children when they attempt to understand why everyone isn't like them.  

Your love and support is more critical now than ever before. A child will be less fearful if you are with them each step of the process in making them well. You, as the parent, have the right to accompany your child. You are paying the costs. There will be times when you inform a physician, surgeon, whomever, you intend to be at your child's side unless surgery is involved and even then, up until the time of  being wheeled to the O.R.. Should you be divorced, do not attempt to shut the stepparents out of  the support group. Regardless of how you may feel toward one another, your child may not feel the same and will need all of you now.  

Children, from infants to young adults, will attempt to hide their pain in the presence of loving parents. Learn to listen to what they are not saying and learn to observe their mannerism's when you suspect they are not feeling up to par. Regardless of what you may think, should your child say they are in pain, they are in pain!

All persons from teenagers through adults should complete a will. Teenagers should specify who will receive radios, stereo equipment, clothing, sentimental items and any other real property. The contents of the will should be discussed with each person who will receive items. Each recipient will know, and will not be able to dispute, the contents and wishes of the will.

Perhaps the second most difficult decision you (or your child if they are old enough) must make! Hospitals require a living will prior to a patient being admitted. Do not wait until you are admitting your child to discuss the what if's. This decision must be well thought out and agreed upon in advance. Allow your child to be a part of the decisions being made in their behalf! You will discover he/she will have more presence of mind about their desires than you under the strain of the moment. For information on living wills, check with your oncologist, library, office supply store. Understanding this document will prevent snap decisions you may regret.

A Durable Power of Attorney is a must! This document appoints a Power of Attorney and grants the appointee absolute power regarding the wishes of your child. In some cases, hospitals and physicians will not honor a living will should the will specify removing all external means of life support, etc.. Choose this person carefully!! The wishes of your child cannot be second guessed by a grieving relative or someone who may change their mind at a critical moment.

The hospital(s) administrator(s), as well as physicians must be made aware of the existence of the Durable Power of Attorney and furnished a copy for patient records.

The most difficult decision you will make in your lifetime (We encourage this decision be made by your child with your blessing), should the cancer be terminal, is whether to donate organs or not. A cancer victim can only donate his/her eyes so someone else can see.

Should you, as parents, make that decision without your child's input, I feel your decision will haunt you the rest of your lives even knowing your decision was the right decision.

We, I know I felt this way, all feel immortal during our younger years. Hopefully, this will never be a decision you will need to make. Encourage all children to become organ donors if you believe in the program. You will always feel a small part of your child remains on this earth.

If your child is of driving age, encourage him/her to sign the organ donor section on their drivers license.

Children (as well as all victims) diagnosed as having cancer face a battle each day that we can only imagine. They willingly allow chemicals to be injected into their bodies, bone marrow to be removed from their bodies, experimental drugs to be utilized, all in the hope this or that chemical will rid them of this disease. They face (and in most cases, beat) the odds with a fortitude and determination that can only be admired by us, their parents, and their peers. All of these steps are usually accomplished without complaint.

Len Jr. was our best friend, confidant, son and most of all, HERO! He faced challenges we can only admire. He beat the odds and won the battle for five years through sheer determination and willpower. We are proud of our son and thankful he was with us for 24 years. Len will always be in our hearts and thoughts.

We, and we are sure you feel the same way, no longer have a tolerance for excuses many people seem to have for not being able to accomplish their goals in life. So many of the excuses seem so trivial now. We, as parents, should listen to, and observe, our children in trying and desperate times. Who knows, we might just learn a lesson or two from our little heroes.

Hopefully, this page has answered some of your questions and provided some insight into facing cancer with your child head on. We will be adding more to this page as time permits. Some of the topics listed may seem harsh, but believe me, they are necessary. All of the above topics are from our personal experiences and feelings. We are in no way attempting to circumvent recommendations by professionals. We are only placing our hearts onto this page in memory of Len.

Len and Zippy Cooper

April 22, 1997

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