Nothing can be more disheartening, than to watch your own precious baby struggle through what most adults will likely never face. Watching, listening and anticipating all the procedures, the sickness, the pokes, the unanswered questions along with agonizing over the anticipated long nights and hospital stays, can cause even the strongest parent to break down and feel small and helpless. As a parent, every instinct provokes you to forge ahead and to have a spirit of determination that is unmatched. But the sad reality is you are completely exhausted and overwhelmed. You feel hopeful and helpless at the same time. Every day praying for good news and better prospects. For some, the families persevere into healing and remission, and yet for others, diagnosis came too late and so, the journey shifts sometime into grief. 

It’s hard to imagine that any other person will ever grasp the pain and hopelessness parents of children with Hepatoblastoma endure. It’s hard to expect to not be envious of other parents with completely healthy children, while holding your baby who’s struggling for good days. It can almost feel impossible not to succumb to the reality that the days ahead may not be bright. But what is clear, is that every parent supporting a loving and sweet baby with the misfortune of this diagnosis, is a warrior and your baby’s superhero, indeed. 

In addition to awareness and supportive care kits, our hope is to empower parents along the journey especially after treatment is done. We hope to encourage parents and families to take charge of your child’s journey of reintegration, by resetting expectations for yourself and your support community on what your families next steps will look like, and most importantly be open and gentle with yourself no matter what. 

Some of the resources listed below have been shared by other parents and medical professionals, as tools and resources to help families along the journey ahead.