Often, getting the best treatment for your child requires temporarily relocating near a treatment facility. Intense treatment schedules, very little sleep and incredible stress may limit time with close friends and even extended family. Most friends want to help and be an encouragement, but don't always know how. At times, awkwardness settles in and families feel abandoned and friends feel guilty. We know that no one wants this and simple steps can be taken to help everyone adjust.
Just about every story starts with, "We were just playing in the backyard..." There is no warning - so imagine going from playtime to crisis in minutes. One thing is for sure, panic quickly turns to commitment - to save your child's life. Becoming informed about how to do that becomes priority #1.
Traditionally, if your child is sick you go to the doctor, a diagnosis is given and a prescription is offered. It is black and white - do as instructed and everything will be ok. When facing childhood cancer, that kind of approach may return devastating results. There is often multiple treatment opportunities available - each with different demands, side-effects and outcomes. Once you select the best treatment plan, you must find the best hospital to administer it. Selecting the best hospital requires hundreds of considerations. Parents must sort through all of them - and in a hurry.
The Childhood Cancer Network understands the needs of families facing childhood cancer. Our unique approach to "staying in touch" stems from a blend of personal experience with childhood cancer as well as professional training in needs assessment. We have a team of highly qualified advisors that participate in our ongoing needs assessment strategy.
We have identified two need themes - Personal Support and Advocacy Tools. These themes are outlined below - so feel free to explore this page to better understand these needs.
What do I tell my other children? Where will they stay? How do I handle my job and insurance? How do I pay my bills? The depth of impact goes far beyond the obvious. Connecting with those who have experienced this journey adds a level input that is priceless.
You are committed to doing whatever it takes for your child. Often, the childhood cancer journey is a long one that can be lonely for the child and family. Being connected to others who have shared in the same experience can bring great encouragement that impacts every aspect of life. Marriages, families and other personal relationships are stressed - access to professional services can provide resources to help families in various crisis points.
We have learned that it is critical to be empowered to ask tough questions, research the latest treatment protocols and investigate the best treatment facilities. A parent is the best advocate for a child facing cancer - and it requires a unique mindset to accomplish this. A parent must know that it's not only OK, but necessary to look at all options available - even if that means respectively challenging their immediate medical team.
