For children who have had a series of relapses, medical caregivers and parents 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 they simply do not want their child to suffer any more. They hope for time to share memories, express love, and prepare for death.
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.
Dr. Arthur Ablin, Director Emeritus of Pediatric Clinical Oncology at the University of California, San Francisco, wrote in the Spring 1995 Candlelighters newsletter 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 that 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 in these 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.
Often, children take the lead in making the decision to stop treatment. In the Spring 1995 issue of the Candlelighters newsletter, Grace Monaco describes how her 4-year-old daughter told her, "I don't think I can come home, Mommy! All my machinery is worn out, and I don't think they have any more parts."
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.
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 51/2, 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 61i2. 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 tell 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, any pediatric nurse practitioner or social worker can tell you that children, often as young as 4, know that they are dying. If the parents are trying to spare the child, an unhealthy situation develops. The child pretends everything is okay to please the parents, and the parents try to mask their deep grief with a false smile. Everyone loses.
Denial may keep children and parents alike from finishing up business—distributing belongings, telling each other how much they love one another, 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. They need to know that they will be surrounded by those they love, and that their parents will be holding them, and they need to know what the family's beliefs are 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 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 ten 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 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 goodbye to her home, cats, teachers, and friends.
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.
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