Childhood Brain and Spinal Cord Tumors
The funeral
Funerals and related rituals (e.g., memorial services, wakes, burial, shiva) are important not only as a time to say good-bye and to begin to accept the reality of death, but also to provide an opportunity to recognize the relationships and impact that the child or teen had on others. Funerals allow friends and family to gather together to share memories and show support for the remaining family members. A funeral is a tangible demonstration of love.
As the car drove us to Guildford Cathedral, the rain started to come down in torrents, even the angels were crying. It got darker and darker and I felt lower and lower.
As we walked around the corner into the Nave, we were absolutely amazed. There were 700 people in the Cathedral. 700. I could not believe my eyes. Michael obviously touched a lot of hearts.
When the service started, the singing was just out of this world. And right next to me our son Christopher shut his eyes and sang along with his friends from St. George’s who had come along to bolster the Guildford Choir. And that was quite something, to see the boys from the two choirs sitting side by side in the choir stalls, together with the men of two choirs. Michael had always wanted to sing with his brother when he was still a chorister. He finally got the two Choral Foundations together.
The tribute from his godfather was perfect: funny, witty, poignant, and included a wonderful tribute to Christopher as well. The sermon from Canon Maureen told everyone what a strong faith Michael had and how he was so sanguine in living and in dying. “Here was someone who was alive from top to toe!” she said. And he WAS.
The anthem was moving, the prayers touching, and then the undertakers moved in to pick up the coffin, and Graham, Christopher, and I moved behind it to take that long, long walk down the Nave. By now I was in tears—and walking past 700 people, most of whom were also in tears, was not easy. As we got to the Great West Door, the pallbearers turned round so that Michael was facing the altar, and everything was so quiet you could hear a pin drop. Suddenly, over the speakers, came the sound of Michael singing, “In the morning when I rise …”
Christopher and I stood with our arms round each other and tears pouring down our cheeks. As it finished, the organ swung into action and Michael’s body was turned around and carried out for the last time of his beloved Cathedral, just as the sun came out.
Children of all ages should be allowed to attend the funeral if they wish, but only after they have been prepared for what to expect. They need an explanation of what the event is for, where they will be going, and what will happen. They need to know what death is, what type of room they are going to, whether the casket will be there, whether it will be open, whether there will be flowers, who will be there, how the mourners will behave, who will stay with them, what they will be expected to say or do, how long they will be there, and what will happen after the service (e.g., burial, reception). All questions should be answered honestly and the children’s feelings respected. Many siblings benefit from giving one last gift to the departed, such as writing a private note and dropping it in the casket, or bringing some of their sister’s favorite flowers to put in her hands.
We celebrated our 3-year-old son’s Kevin’s life today. The past week has been a whirlwind. All of Kevin’s favorite women worked nonstop for 48 hours leading up to last night. The funeral home was beautiful. There were pictures everywhere—on pedestals, in photo albums, collages, and frames.
There were children’s books throughout the funeral home as well as red balloons, Kev’s favorite color. We had patchwork squares out to create a memorial quilt for his younger sisters, Courtney and Katie. People wrote special messages and drawings on them to capture their feelings: “Kevin, Sending you love and kisses and one BIG scoop of mashed potatoes!”
We also had sheets of paper to write stories and memories of Kevin to make a memorial book for the girls. Kevin’s favorite things were on a memorial table: his green blankie with the hole in it, his books, his Buzz Lightyear, his green bike, his catcher’s mitt, his baseball and yellow bat, golf clubs, and more.
We rented a 6′ projector screen and a big screen TV to display a 20-minute video in both rooms at the funeral home. It showed Kevin’s life over the past year. And it was a pretty good life too: putting candles on Grammy’s cake with Matthew, gymnastics with Grampie, wrestling with Courtney, reading with Daddy, playing football with Nana, kissing Auntie JoJo and Auntie Karin, playing golf in the yard, laying on the floor laughing, telling knock knock jokes, riding bikes in the house, at the beach at the Cape.
What does a mom do? She loves, cherishes, teaches, protects, and lets go. For one brief, shining moment, we had Kevin. For happily ever after we have our memories of him.
For families that are involved in a spiritual community, their clergy have a unique opportunity to provide support, love, and comfort to the grieving family and friends. They usually know the family well and can evoke poignant memories of the deceased child or teen during the service. Members of the clergy often have excellent counseling skills and can visit the family after the funeral to provide ongoing help during mourning.
Table of Contents
All Guides- Introduction
- 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