"Here is our story..."

Our daughter Kelly was thirteen when she was diagnosed with a malignant germ cell tumor on her ovary. She had just returned from a trip to Europe with her grandmother when she went to the doctor with a tender abdomen and general malaise. She had surgery the following day, with the diagnosis confirmed during surgery. The surgeon could not remove all the tumor which had spread within her pelvis, so she went on chemotherapy to treat the remaining tumors.

She had a combination of cisplatin, VP16 and bleomycin, given in week-long hospital stays over a four-month time period following surgery. Kelly was not able to attend school during this time (September - December) due to her routine hospital stays for chemotherapy and the side effects. The treatment program was determined through a clinical trial in which she received high-dose cisplatin in the experimental group. We elected to have Kelly participate in the trial after careful consideration of the risks and benefits as described by her oncologist. Only after deciding to participate was she randomly assigned to the experimental arm. Kelly became progressively weaker through her treatment, and lost much weight. At the end of her chemotherapy, we expected that she would have additional surgery to check for tumors that might still be growing. We were relieved to learn two days before Christmas that she would not need the surgery since the scans showed that all remaining tumors had disappeared. It has been two and a half years since her treatment ended and Kelly has returned to the normal life of a teenager, with hopes of a cure in sight now.


What We Recommend to Other Parents Who Have Children With Cancer

  1. Although it's hard to do this at the time of diagnosis because of the emotional upheaval, try to get as much information about the type of cancer, its prognosis, treatment options, existing clinical trials, etc. To us, this gathering of information helped us understand what Kelly was up against and what we might expect. Ask as many questions as you possibly can, and write the answers down, since it is hard to keep it all in your mind with everything else going on.

  2. While your child is in the hospital, monitor everything that is done to your child. While we had confidence in her doctor and in the hospital, we did observe some minor "mistakes" that we brought to the attention of the doctors and nurses. So many people had a hand in Kelly's treatment and care that it was hard for any one of them to really understand how she felt and what her needs were as much as we did. Remember, you are the only persons who are there all the time.

  3. Realize that with so many persons helping in the care of your child, you will hear different things about the cancer your child has and what they think about the treatment and prognosis. Some people try to offer a optimistic outlook, while others come across as less hopeful. Try to evaluate these comments objectively, as this will help keep you from wild emotional swings.

  4. Be open to having your child treated through a clinical trial. While considered as research, these trials don't always include new, experimental drugs. In our case, it involved a higher dose of one of three drugs already known to be effective against germ cell tumors. These trials are the only way to advance the science of cancer treatment. One of Kelly's doctors said that only fifteen years ago, there would have been little they could have done for her. Enrolling kids having this type of cancer in clinical trials over the years increased the knowledge Kelly's doctors had in treating her, which so far has been successful.

  5. Allow family and friends to help out in any way they can, even if it appears it is too much for you to keep up with. They feel that it is all they can do, and it is important that they feel they are being helpful. They don't want anything in return!

  6. If your child is a teenager, they are at an age that they feel invincible, and are in a hurry to get on with their lives. In Kelly's case, she was old enough to understand the severity of her disease, but also was expecting to fully recover and get back to her normal life after treatment. This will vary greatly with each case and type of cancer, but we were amazed at Kelly's strength, confidence and resolve to get past this.

  7. The determination of Kelly to get her life back to normal made it more difficult for her to accept that she had to pace herself in school and other activities. Her body had taken so much abuse over six months that she simply could not do what she thought she could. She had to frequently take naps after school, and on weekends.

  8. Be very open and honest with your child about what is going on, especially if they are a teenager. They sense if you are withholding information, or sugar-coating the situation, and this will be more harmful that being straight up about things.

  9. Cancer is now one of the most curable of chronic diseases, especially when it occurs in childhood. This is a fact that should offer any parent encouragement when faced with the situation we were in.

We will be happy to communicate with other parents via e-mail about our experience. Please go to the CONTACT page to send us a message.

Click here if you would like to read Kelly's Story.


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