BRAVE WILL ROOM
Since 2010, one of the goals of the Brave Will Foundation has been to support the creation of an inpatient pediatric palliative care space at the Children’s Hospital at Albany Medical Center. The space would allow families to spend time with a child in a way that is unlike any other that the hospital currently can provide.
In April 2013, we received confirmation that the space would be built and the Brave Will Foundation, in July 2013, committed $100,000 for the creation of this space. The suite was officially opened on July 14, 2015 (Will’s 7th Birthday). In addition, upon completion of this suite, the Brave Will Foundation became the primary provider for supporting families in hospice. The foundation can provide linens and decor for the room. In addition, we would provide meals for the family during their time in the hospice suite.
Among the potential uses of the space are:
Priority 1: Hospice Care
A child and family in the Journeys program that is receiving end-of-life care would have the highest priority to use this space if they choose to spend the final days in the hospital. We could also see, if circumstances allowed, children who suffered traumatic, sudden illness and injury use a space like this.
Priority 2: Diagnosis
Without question, the day a diagnosis is given for a life-threatening illness is truly one of the most unimaginable days a parent could ever experience. Your head is spinning, your body is numb, and it takes every ounce of effort to stay afloat for your child. It becomes even more challenging once, after a diagnosis, the child is in a room with another patient. The proposed suite would allow a family to be together on diagnosis day and night to try to comprehend the news that has been delivered. The private suite would also allow for friends and family that will likely be visiting to have a place to discuss and console.
Priority 3: First Treatment
Speaking specifically about cancer treatment, the first time a child receives chemotherapy can be very unnerving. In most cases, families have heard about chemotherapy but aren’t quite sure what to expect. There are often lots of questions about the beeps and alarms that machines make. To make a family feel at ease, they should have priority of using the private suite during that first treatment cycle. They deserve that privacy and comfort without the concern of having to share the space with another child.
Priority 4: As-needed use
When any of the first three priorities is not in play, the room could be used as needed by the hospital for special situations and circumstances. It is understood that the hospital would need to ensure that any space available would need to be used when bed space is required and keeping a room empty for only priorities 1-3 is not feasible.