Luca – Forever Our Son

First blog entry.

Luca and I – summer vacation with our family in Collingwood at Blue Mountains Resort (August 2015).

Luca was 10 years old when he passed away. He was my first born, the one who made me a mom. The first who made me realize what true love is and filled my life with so much love and light. His entire family loved him fiercely and his friends adored him. So many individuals told me Luca enriched their life, and a few of his friends over the years told me Luca made their heart happy. Music to a mother’s heart. Luca was very social and loved his friends, teachers, family, dogs, nature, and rainbows. He loved math and science and was very creative and wanted to be many great things when he was older, especially a dad.

Luca was diagnosed with immune thrombocytopenia (ITP) when he was 7 years old. ITP is a rare autoimmune blood disorder where the bodies antibodies destroy platelets and platelet production is often impaired as well. Platelets play many roles, but mainly they are essential for bleeding prevention and cessation, and they maintain the integrity of blood vessels. Normally, individuals have 150,000-400,000 (microliters) of platelets however in ITP, the platelet count is less than 100,000. For Luca, his platelet count was usually below 10,000. In May (2018), he unexpectedly developed a brain bleed also called an intracranial hemorrhage (or ICH).

ICH’s are rare in ITP. In fact, we were always told not to worry about them because they are so rare, and we were told many times the risk for children with ITP to develop an ICH is less than 1%. We later learned this statistic is higher among children who experience the type of bleeding Luca had developed, but still considered a low risk overall. Luca died on May 15, 2018 from the ICH he developed. In a later blog post I will review this in more detail, and share with you how our entire world shattered, and our hearts broke forever.

My motivation to create this blog site is to share my experiences to help prevent this from happening to another family. My son had atypical ITP, meaning his disease course worsened over time, and some of his bleeding symptoms were very serious. Most children with ITP have only mild bleeding symptoms. Not many hematologists in their career will see a child like my son.

Many of the entries I will post here I actually wrote soon after Luca passed away. I had not intended to develop a blog at the time. I was writing to help cope with the loss of Luca. I needed a venue to share my throughs and words and feeling or they would devour me whole. Over time, I realized writing a blog and having a designated place to share my entries seemed like a logical and natural thing to do.

My entries will focus on ITP, Luca, Luca’s disease course and brain bleed, child loss, grief, lessons learned from ITP, how I have been affected by grief, and how my family as a whole has been affected by grief and the loss of Luca who in many ways is our core.

Note: If my blog posts are helpful to you, please let me know how they have helped you by sending me a message.