April Blog: Catching up with Michelle

April
Blog from Michelle

Our Parent Advocate Role explained…

I shared my story in my February about my journey to becoming a cancer mom and how it lead to my role here at C.U.R.E. as a Parent Advocate. I thought it would be a good idea to follow it up with this blog about what that role means exactly.

I have family and friends that cannot completely understand exactly why I would choose to be faced with and talk about cancer as a job. It is a unimaginable circumstance until it is your life.

The Why - I have lived this, I know what its like to hear those words, I can relate to living in the hospital, and I know what it is like to not have control of your life. I have been scared, confused, and feared the unknown. So this is why I would choose to do this as a job, to be there for families because I had C.U.R.E. there for me.

The What, Where and When - So what exactly do I do on a daily basis? I support families whose children are going through a cancer or blood disorder diagnosis. I visit families who are inpatient and who have outpatient appoints at the hospital. We visit our families that are staying in the hospital daily, we provide them with parking passes so they do not have to pay to park in the parking garage. A monthly pass is sometimes given depending on their length of stay. We offer food vouchers for parents so they do not need to leave the room and can get a meal when their child does. New this past July, we have cards that can used in the cafeteria to purchase food for parents or for what their child may be craving at the time. Gift cards are sometimes given from stores or restaurants nearby for our families who have longer stays to help as well. We give Comfort Bags when kids are diagnosed that contain a blanket, toys, books, pictures, and a binder for parents to help navigate and stay organized. We also started giving $100 gas gift cards with the Comfort Bags back in 2016, thanks to a donation from our friends at Mark’s Pizzeria. I am able to stay connected with families when they come to clinic to see how things are going at home, which is important since often I am there for families since diagnosis. I am able to provide support for the parents, sharing my experience and giving them someone to talk to, someone to vent to if they need.

The How - We offer a closed Parent to Parent Connect Facebook group to connect C.U.R.E. parents with each other, and you can also watch our Facebook Lives that are done at least monthly. We have a voyage bead program for the kids and their siblings to have a fun way of showing their journey visually. I am able to bring the beads right to the kids when they are here. C.U.R.E. offers many Parents’ Night programming planned by our Program Coordinator, Adella, to provide a fun way for parents to connect with each other and enjoy some time together. I can stay in touch easily because of the events and programs we offer. I am able to attend bereavement group to let families know I am there for them after they have lost a child. I can sit with parents and just listen to what they may need at the time.

I never really know what my day is going to be like. I can not always anticipate what will be needed until I see families that day. I am just happy to have this role, to be there for others and to get to be there during the happy times and help them through the tough ones.