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Rett's Roost The Brown Family


The Brown Family

When was your child diagnosed with cancer? What type of cancer diagnosis were they given? How did their treatment progress?

Eoin was diagnosed with Leukemia on September 21, 2016, one month after turning 3 years old. Eoin immediately started treatment and life was such a whirlwind as we were thrust into the childhood cancer world.

What did receiving that devastating news feel like for your family?

I don’t think we have processed all of this yet as Eoin is still in treatment until November 23, 2019.  Everything just moves so fast after diagnosis that you learn to just live in each moment and take it one day at a time.  My husband fell apart after diagnosis and was very emotional, especially because he lost his best friend to colon cancer the year before.  I quickly knew I had to be the rock and just plunged right into being there for Eoin and bottled up my emotions to get through those first months.

What are some of the things that helped you get through the initial months of diagnosis and treatment?

Support.  Support from friends and family and the creation of a totally new group of people we either didn’t know already or barely knew that quickly rallied behind us.  Friends did so many things for us–house cleaning, meals, getting our dogs groomed, visited us and brought food to the hospital. The family came into town and helped care for our daughter and help her transition and be a constant for her while Eoin was inpatient.  For those who couldn’t come to visit or help, just words and texts meant so much to us!

What are some of your child’s favorite toys, heroes, sources of comfort & joy?

Eoin had just turned 3 when diagnosed, so a lot of the toys we had were more toddler type of activities.  Suddenly, we were given superhero and “big boy” toys so this opened him up to a whole new world! We watched the Star Wars trilogy three months after diagnosis when we were so tired and wasn’t very mobile.  Our family fell in love with it! Having the new movies come out while he has been in treatment has been so much fun. We can’t wait for the next one to come out in December! Legos have also become a huge favor and keep him occupied.  Lastly, Eoin is a huge crafter and very creative. That has been a great outlet for him, especially when inpatient or during clinic days.

How did you find out about Rett’s Roost?

I was looking for support and not finding much locally available for kids who are in maintenance and doing well on treatment.  I did a search and luckily Rett’s Roost popped up. I was so grateful that we found a place and people we could reach out to.

What is your favorite memory or most positive outcome of attending a Rett’s Roost retreat?

Being connected to other families who understand this journey.  For us as a family, spending rare time together without distractions.  For my kids, seeing that they aren’t alone and while they may feel different at home, understanding there are other children who have cancer and siblings as well.  Eoin understands other children have cancer because he sees it at the hospital, but for my daughter, I think it was so important to discover.

What is the one thing you wish you could tell everyone about childhood cancer?

It changes you.  We are grateful and yet realize this is also a horrible thing to go through.  So it is so many emotions and challenges and ups and downs. It is a life long challenge and won’t end on Eoin’s last day of treatment.