Families who have traveled this path before offer considerations to ease this portion of the journey as much as possible. As difficult as these topics are to consider and discuss as a family, having clarity earlier and understanding the patient’s and family members’ wishes can ease the journey as the situation becomes more critical. If you have older children, you may want to consider including them in these difficult decisions.
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Our families have experienced a variety of ways to make amazing memories and preserve precious connections to their children. Below are some of their most meaningful ideas that you might consider:
- Travel. Most of our families benefited from the Make-A-Wish Foundation.
- Consider celebrating birthdays and/or holidays early.
- Capture a great signature, artwork, or handwritten note to mom or dad, if possible.
- Create imprints of hands and/or feet.
- Collect fingerprints.
- Record your child’s heartbeat with a printout.
- Record your child’s heart beat added to a lullaby or favorite song.
- Cut a lock of hair before losing it to chemotherapy and after new growth.
- Create a mold cast of your child’s hand in yours or with his or her siblings’ hands.
- Take professional photos of the family and of your child alone.
- Consider taking one photo daily beginning at diagnosis.
- Video and record your child. This might include singing, praying (if applicable), playing, or talking to each member of your family.
- Allow your child to choose his or her favorite perfumes or colognes for parents or siblings.
- Record an interview with your child about favorite holiday memories, birthdays, color, restaurant, superhero, games, etc.
- Create a playlist of your child’s favorite music.
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Declining quality of life is seen when symptoms continue to worsen. The most common symptoms may include loss of mobility, inability to swallow, increased fatigue with decreased consciousness, inability to communicate, increased pain, difficulty breathing, and bowel and/or bladder issues. Families suggest that some of the following can be of assistance:
- Use of a wheelchair
- Wheelchair-accessible transportation
- Preparation for alternative communication methods (for example, whiteboards, picture books, or hand signals)
- Pool or hot tub therapy
- Music therapy
- Art therapy
- A palliative care team member that is able to access your child’s port
- Bath lift/chair
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Pediatric hospice focuses on the care of a child with a life-threatening disease or terminal illness. Hospice support can be provided in the pediatric setting, even when a child is still receiving treatment.
When facing the end of life, hospice focuses on providing peace and dignity during the dying process and after the death of a child. The care is family centered and can include siblings and other family members. Hospice teams work with the child’s doctor to ensure seamless coordination of psychological, spiritual, pain management, and physical care.
Hospice services can be used wherever the patient is, at home or in the hospital, and are available by phone any time of the day or night. They provide hands-on care and can be at the patient’s bedside quickly if needed. All needs related to end-of-life care, including medications, supplies, and equipment, can be delivered to the patient at no cost to the family.
The needs of the family do not end with the child’s death. Pediatric hospice continues to help the family even after the child dies by connecting families to bereavement support.
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Consider Donating Tumor for Research
Many families make the difficult choice to donate their child’s tumor for research. Brain tumor donations allow researchers to collect, analyze, and share valuable data. Donating the whole brain can help researchers discover new and improved tumor treatments. Brain tissue acquired after a child dies may contain important information about changes that have occurred over the course of treatment and time. This tissue could be vital to discovering the mysteries that still exist in DIPG and DMG and ultimately finding a cure.
Gift from a Child strives to increase awareness and compassionately helps families arrange for a seamless donation process, free of charge. For more information, please visit www.giftfromachild.org.
