2013 Ambassador Matthias was diagnosed with retinoblastoma, a type of childhood cancer, when he was just 3 months old. The treatment left him permanently blind, but five years later, he’s cancer free and starting kindergarten. His mom, Katie, shares this update.
Matthias (left) and his older brother, Magnus, on the first day of school this year.
This surgery allowed him to be cancer free for the first time in his life, but it left him permanently and irreversibly blind.
I lifted him from the recovery room bed as he slept, and the nurses helped me navigate the tangled web of tubes so we could settle into a rocking chair. I rocked and sang softly to him as he awoke for the first time to a new world, one in which he was healthy but completely blind.
On August 4, 2014, just five short years later, I hugged Matthias and held his hand as he boarded the bus for kindergarten. I kissed him goodbye and again guided him into a new world. It was almost as terrifying as the day he lost his vision.
After childhood cancer took Matthias’ sight, Christmas changed forever.Cancer changed us in many ways; sometimes I don’t even recognize our lives anymore. Many of these changes aren’t bad — we have a deeper respect for life, an appreciation of health, and a conscious enjoyment of every moment with loved ones.
Some of the changes were difficult, and we’ve accepted them. Even the way we celebrate holidays has changed.
I’ve always enjoyed Christmas, and having children makes this time of year even more magical. In 2008, we were excited to celebrate Matthias’ first Christmas, along with Magnus, who was 2 at the time, and just starting to participate in all of the excitement of the season.
Matthias was diagnosed with retinoblastoma, a childhood cancer of the eye, when he was an infant.
Matthias never took a pacifier. He had a wicked gag reflex, so we had to find other ways to soothe him. Music became his pacifier, and we relied on it heavily.
Dr. Rodríguez-Galindo is a member of the St. Baldrick’s Scientific Advisory Committee. His research has been focused on retinoblastoma, bone sarcomas, histiocytic disorders, and rare childhood cancers, and he is currently the Chair of the Rare Tumors Committee at the Children’s Oncology Group (COG).
What is Retinoblastoma?
Retinoblastoma is a cancer of the eye that occurs only in children, and typically in very young children. Two-thirds of retinoblastoma patients are diagnosed before they are 2 years old, and more than 90% are diagnosed before the age of 5.
St. Baldrick’s Ambassador Matthias with his Grandfather
My wife and I are blessed with 14 beautiful, uniquely wonderful grandchildren. We all like to think that we don’t have favorites, but I would be lying if I didn’t admit that my buddy Matthias has a very special place in my heart.
My journey with childhood cancer began with a telephone call almost 5 years ago. The call is indelibly seared into my memories as one of the most distressing moments of my life.
His parents, Katie and Craig, send their thanks for supporting kids like their son and giving them hope for a healthy future.
“Kids should be out living their lives, not fighting for them. St. Baldrick’s has such dedicated volunteers, and it is so amazing that they have raised so much money already. Being a family fighting cancer is very isolating, and St. Baldrick’s donors and volunteers send a collective message that these families are not alone and people care.”
Diagnosed with retinoblastoma in both eyes at 3 ½ months old, Matthias had six months of chemotherapy, monthly laser and cryo-therapies, and Exams Under Anesthesia. Near the end of treatment, his main tumors started growing again and there were more seed tumors – too many to count. Matthias’s eyes were removed before his first birthday.