For children or teenagers whose disease is progressing, medical caregivers and parents discuss 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. What all families share is a desire to continue to guide and nurture their children, parenting them even through these most difficult circumstances, up to and through the process of death itself.
After Christie came home from the transplant center, she started to perk up and feel a bit better. But she had pretty massive problems with graft-versus-host disease, infections, fragile bones, and a very weak heart. She had a stomach abscess that they thought was causing her vomiting and eating problems, so they decided to biopsy it. They came out and said they found a cluster of tumors on her ovary, which turned out to be malignant leukemic cells. In my rational mind, I knew it was time to stop. I could imagine stopping the treatment, but I just couldn’t picture life without her.
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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 Meg 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 Meg. 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 Meg soon. She has really fought hard. She made this damn cancer 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, professor emeritus of clinical pediatrics 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 the 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 from 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, and 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. Children and teenagers need to be an integral part of all 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.
The history of Jody’s battle with leukemia is long, and to me, marked with his resilience, strength, and incredibly strong spirit. He was diagnosed with ALL shortly after his second birthday. He relapsed just before he turned 3, then not again until he was 5 ½, seven months after he went off chemotherapy treatment. He underwent a bone marrow transplant approached with the good omen of having a perfect match with both his older sister and younger brother, and thrived until another relapse at age 6 ½. Realistic hope for Jody’s long-term survival was dashed at that time. Jody achieved another remission, which lasted for several months, then experienced a bone marrow relapse. We realized that the disease was systemic, and all conventional means of treating the leukemia were, finally, hopeless.
While the doctor was ready to present us with medical options that Thursday afternoon, we already knew our decision. It was rational: Jody should go off all chemotherapy treatment. Jody’s leukemia was clearly very resistant to chemotherapy drugs. It was ethical: With no chance of further good health and high-quality living, allowing death to come naturally was surely the best choice. It was humane: Jody would be treated for pain, and we would bring him home to die in familiar surroundings with his family. And it was sad: Jody’s laughter wasn’t to be heard again, he wasn’t to feel good again, he was to become sicker and sicker and die. The unfathomable reality of life without Jody’s presence was marching to meet us without reprieve.
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, a difficult 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.
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 a while, 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.
Denial sometimes prevents children and parents from finishing up business—distributing belongings, telling each other how much they love one another, and saying goodbye. 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 she wouldn’t feel air hungry. She was alert off and on for a few days. We read to her and played tapes. After one 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.
She had told me that she wasn’t afraid to die, and this has been a great source of comfort to us. I believe 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 goodbye to her home, cats, teachers, and friends.
When it becomes clear that further treatment will not result in a cure, parents should discuss with their beloved child or teen what his or her goals and wishes are, and use that as a guide for medical and personal choices.
After Caitlin decided she wanted no more treatments, we brought her home. She asked me to give her clothes to the poor, and her special things to her brothers. She gave them the last of her money, saying she no longer had any use for it. She had already bought them Christmas presents for the coming Christmas and had given them ahead of time. Her affairs were oh so in order. She asked my friend to make me laugh after she died. She told me that it wasn’t dying she minded, because her friend who had already died had come in a dream and told her that heaven was a good place, but she did not want to leave her father and me. They were agonizing conversations, yet I am so glad that we were able to have them.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. Overview of Childhood Leukemia
- 3. Acute Lymphoblastic Leukemia
- 4. Acute Myeloid Leukemia
- 5. Juvenile Myelomonocytic Leukemia
- 6. Chronic Myelogenous Leukemia
- 7. Telling Your Child and Others
- 8. Choosing a Treatment
- 9. Coping with Procedures
- 10. Forming a Partnership with the Medical Team
- 11. Hospitalization
- 12. Central Venous Catheters
- 13. Chemotherapy and Other Medications
- 14. Common Side Effects of Treatment
- 15. Radiation Therapy
- 16. Stem Cell Transplantation
- 17. Siblings
- 18. Family and Friends
- 19. Communication and Behavior
- 20. School
- 21. Sources of Support
- 22. Nutrition
- 23. Insurance, Record-keeping, and Financial Assistance
- 24. End of Treatment and Beyond
- 25. Relapse
- 26. Death and Bereavement
- Appendix A. Blood Tests and What They Mean
- Appendix B. Resource Organizations
- Appendix C. Books, Websites, and Support Groups