For children or teenagers whose disease is progressing, medical caregivers and parents at some point need to decide when to end active treatment and begin to work toward making the child comfortable for his remaining days. This is an intensely personal decision. Some families want to try every available treatment and exhaust all possible remedies. Others reach a point where they feel they have done all they can and want to transition to a time of sharing memories, expressing love, and preparing for death.
This has been a very difficult weekend with many tears. We have had so many wonderful years beyond what we ever thought was possible with such a good quality of life for Jen and us. In spite of everything, we have no regrets. We selfishly want every moment we can have, but we have come to the crossroad where we are asking at what cost to Jen. While we have not made the commitment to hospice yet, we are all feeling that we are not far from that place unless there is a dramatic change in Jen soon. She has really fought hard. She made this damn brain tumor work really hard to slow her down. She is very, very tired and while my head understands this, my heart is breaking.
Dr. Arthur Ablin, Director Emeritus of Pediatric Clinical Oncology at the University of California, San Francisco, wrote about the difficulties of deciding to end active treatment:
All too often, the decision to abandon the goal for cure and, reluctantly, accept the reality of inevitable death of a child is too painful and, therefore, never made. This paralyzing pain occurs with equal frequency, perhaps, for the family and the doctor. We of the medical profession have no equal in our ability to prolong dying. We have a powerful array of mechanical, electronic, pharmaceutical, and biotechnical interventions at our command. We can keep people dying for months and even years. Applying or withholding this armamentarium is an awesome responsibility, and it requires infinite wisdom to know how to manage wisely and correctly. We can do great good by applying these tools correctly, but can also do incalculable harm through over-utilization. Physicians and families alike must work together to avoid the possible pitfalls. When cure is beyond all of us, then the challenge is to make the rest of life as worthwhile and rich as possible. There is much to do for the terminally and critically ill child and his or her family. They have that right, we have the privilege, to be of service.
One of the more difficult tasks a parent will face is sharing the news with their child that treatments have stopped working. Older children and teenagers need to be an integral part of the subsequent discussions with the healthcare team. Their thoughts and feelings are crucial during the decision-making process. Honest, thorough communication between the ill child or teen, family members, and involved professionals helps everyone work together.
My niece was diagnosed right after her third birthday and died 2 ½ months short of her fifth birthday. We told her about the “tumor in her head” and she knew that was what was causing all the symptoms she was experiencing. She knew she was sick and wasn’t getting better, but we never told her specifically that she would die until after we had stopped all treatment and the outcome was inevitable, probably a month or so before she died.
When we told her, we sat down with her and her 2 ½ year old brother and told them. She acted exactly as though she had already known what was going to happen to her, that we were telling her nothing new.
About 2 months before we told her, the movie “Little Women” came out on video. We had previously taken her to see it in the theatre. We got the video right away, and she watched it probably three times a week or more. She would always tell me, when I watched it with her, that her favorite part was the part where Jo died. It wasn’t like she got any pleasure out of that part, but it was like she knew what would happen to her and she could identify very closely with Jo.
In retrospect, I think she had known for some time, long before we told her, but she did not speak of it because she had already come to terms with it, and she was not fearful. I think she desperately wanted to live and be cured, but she somehow knew that if a cure could not be found, she would die.
Sometimes, children take the lead in making the decision to stop treatment.
When my 6-year-old son Greg was in the hospital in intensive relapse treatment, he would repeat over and over again, “I want to go home.” When he was finally well enough to come home for awhile, he kept saying, “I want to go home.” In frustration, I said, “Greg, you are home, why do you keep saying that?” He looked up and quietly said, “I want to go to my heavenly home. I want to go to God.” I said, “Honey, please don’t say that,” and, knowing how much we loved him, he replied, “Okay, Mom, I’ll fight, I won’t go.” And he did fight hard for several more months. But he was way ahead of us in acceptance, he was at peace, and he knew it was time to let go.
When it is clear that death is inevitable, parents struggle with the thought of how to discuss it with the ill child and siblings. All too often in our culture, children are perceived as having to be protected from death, as if this somehow makes their last days better. On the contrary, children, often as young as age 4, know they are dying. If the parents are trying to spare the child from knowing, an unhealthy situation develops. The child might pretend that everything is okay to please the parents, and the parents might try to mask their deep grief with false smiles. Everyone loses.
Aidan was diagnosed at 4 ½ and at the time didn’t know what the word cancer meant. We kept it that way. A little while later we told him about bad cells, in relation to having radiotherapy. I think this was easier for all of us than with an older child with a better understanding of death. Even so, Aidan now talks about that initial time in the hospital as “when you were very worried about me.” I think he has some idea about how close he came that week. More recently, now 6, Aidan faced a recurrence from the medulloblastoma. When he was having a lumbar puncture I told him the doctor would put a needle in his back. He asked why and I answered that he needed to see if there were any bad cells there.
After a bit of thinking he asked, “What happens if there are?” I put on my brave face and said we hoped there weren’t but we just have to wait and see. Then he said, “They’ll go everywhere won’t they?” My brave face was certainly tested then and so was his, he was very quiet that afternoon.
Denial sometimes prevents children and parents from finishing up business—distributing belongings, telling each other how much they love one another, and saying good-bye. It also strips parents of their ability to prepare their child for the journey from life to death. Children need to know what to expect about dying. They need to know that they will be surrounded by people they love and that their parents will be holding them as they pass on. They also need to know the family’s beliefs about what happens after death.
Jennifer contracted a respiratory fungal infection that resulted in her being hospitalized on a ventilator. She was given lots of morphine so that she wouldn’t feel air hungry. She was alert off and on for a few days. We read to her and played tapes. After 1 week on the respirator, she took a turn for the worse. She didn’t respond to me after that. Her kidneys were ceasing to function, and she started to get puffy. Her liver was deteriorating, and her painful pancreatitis had come back. After 10 days on the respirator, I couldn’t bear it any longer. I lay down in her bed, took her in my arms, and kissed her at least 200 times. I talked to her for a long time, and told her that we would take care of her cats, and that I was sorry that she had to suffer so much, and how beautiful Heaven is. I told her to go be with Jesus, her Grandpa, and her dog. I also told her how much we all loved her and how proud we were of her. I got off the bed to change positions, and the nurse rushed in. Her heart had suddenly stopped the second I got up. I believe she heard me and just needed to know it was okay to go. She didn’t want to leave until she knew her mommy was ready.
Jennifer had told me that she wasn’t afraid to die, and this has been a great source of comfort to us. I believe that she was preparing for her death, even as we hoped for her remission. Before she went to the hospital, she spent all her money, gave away some of her possessions to her sisters, and said a final good-bye to her home, cats, teachers, and friends.
One father shares how his family faced his daughter’s terminal prognosis:
When Stacia was diagnosed with glioblastoma, the prognosis was given as 9 to 12 months. With experimental treatments, I guessed that I might be able to extend her life another year. But the bottom line was that our child, our beautiful Stacia, was going to die. The recognition of this truth is a paralyzing event. Simply said, it breaks your heart in half, and leaves you weeping uncontrollably. When the crying subsided, the questions came flooding. Whatever in the world am I going to do? Two ideas came to mind. The first was absolutely normal: I will scour the world for treatments and try to save my child’s life. This thought occurs to every parent in this situation. Understandably, most parents become completely absorbed by this single idea.
My second thought was: How can I give Stacia the best possible life in the time that she (and we) have left? The concept I came up with was LIVING BIG. And live big we did. I set about with my wife Linda, our children, Jodi and David, Stacia’s extended family, and all of her good friends, to create a network of love and support that would always be there to help her live life to the fullest, no matter what happened. In practical terms, what this meant was creating a schedule of “living” to complement her schedule of “treatments.”
We did not play it safe. We took Stacia everywhere: Canada, Yosemite, Shasta Lake, Tahoe, Pinecrest, Cayucos, San Francisco, even Mexico. That was one of the greatest weeks of our lives. Pure fun, pure memories. You see, Stacia was the life of the party. All we had to do was treat her that way.
There is another element of living big, other than just taking big trips. That’s the intimate part. Setting aside a night, when you take your child out for dinner—just you and her. I asked Stacia if it would be okay to make Thursday nights our father-daughter night. She readily agreed. We went to our favorite pizza parlor, every Thursday, even if she did not eat. At the beginning, she could walk in on her own. Later she used a cane, still later we did a Texas two-step, where we walked in hand in hand, still later a 4-point walker, and still later her wheelchair. We never missed a night. And she often did not eat or drink much. She didn’t really care. Because we were together. We made small talk, most of the time. Other times, we spoke about life and death. Mostly about life.
The rest of the family set about making their own special days or weekends with Stacia. We threw parties and had her friends over. Her friends threw parties, and we brought her over, even when I had to carry her inside, in my arms. We never left her out.
We tried to enjoy life to the fullest, even when we knew the situation was terminal. We packed a lifetime of living into 2 years. Stacia lived 26 months from her initial diagnosis. Cut down in her prime by a disease that the medical community doesn’t understand all that well. An orphan disease that could have made orphans of my whole family, except that we did not let it.
We miss Stacia terribly, and our hearts are still broken over losing her. But our spirits are not broken, because we lived big, with the life of the party. God bless you, Stacia Jennifer.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. The Brain and Spinal Cord
- 3. Types of Tumors
- 4. Telling Your Child and Others
- 5. Choosing a Treatment
- 6. Coping with Procedures
- 7. Forming a Partnership with the Treatment Team
- 8. Hospitalization
- 9. Venous Catheters
- 10. Surgery
- 11. Chemotherapy
- 12. Common Side Effects of Chemotherapy
- 13. Radiation Therapy
- 14. Peripheral Blood Stem Cell Transplantation
- 15. Siblings
- 16. Family and Friends
- 17. Communication and Behavior
- 18. School
- 19. Sources of Support
- 20. Nutrition
- 21. Medical and Financial Record-keeping
- 22. End of Treatment and Beyond
- 23. Recurrence
- 24. Death and Bereavement
- 25. Looking Forward
- Appendix A. Blood Tests and What They Mean
- Appendix C. Books and Websites