Help Baby James Battle Brain Cancer

On behalf of Amy and Matt Griffis

On March 25th, everything for the Griffis family changed when Matt and Amy got the devastating news that their happy and healthy-seeming 9-month old James had cancerous brain tumors. Just three months earlier, his pediatrician noticed increased head growth and referred him to a neurosurgeon just to be on the safe side. Matt and Amy were told that James was likely fine, because he had no symptoms and was hitting all of his milestones. However, James’ head continued to grow so Matt and Amy took James in for an MRI just to make sure everything was okay.

They received the shocking news that James had a large, likely cancerous brain tumor. Amy and Matt had to rush him to Children’s National Hospital immediately, where he underwent emergency brain surgery to relieve the pressure in his brain caused by cerebrospinal fluid that built up as a result of the tumor. While James’ surgical team was able to successfully drain the fluid, the extra space allowed his tumor to grow rapidly. In the pediatric ICU, James’ medical team prepared Matt and Amy that James may not make it.

But James is a fighter. As he fought hard to recover from that surgery, Amy and Matt learned more about James’ road ahead. They learned that James has Atypical Teratoid Rhabdoid Tumor – ATRT – a rare and aggressive pediatric brain cancer that usually affects infants and toddlers. Their medical team prepared them that prognosis was often not good for young children. But they also found themselves at one of the best children’s hospitals in the world for treating this difficult to treat cancer. Together, James, Matt and Amy, and their neurooncology team started the long and difficult cancer treatment journey.

In the four months since his initial diagnosis and the start of his aggressive treatment, James has been fighting incredibly hard. He has navigated three chemo cycles (plus an emergency “mini” cycle that initially saved his life), numerous stem cell collections (which are needed to help his body handle the high doses of chemo ahead), difficult chemo side effects, and many complications. All the while, he continues to be his adorable and smiley self. He quickly became every nurse’s favorite patient and his doctors brag about their ability to make James smile. While his body is working hard to fight his cancer and handle the side effects, James continues to grow and learn new skills. Since he began living in the hospital almost full time, he has relearned to sit up and learned new skills like waving, pointing, and making kissy faces. Everyone who loves James is in awe of his resilience and strength.

As you would expect, this sudden and unexpected cancer fight has had an enormous impact on the Griffis family. James requires 24/7 care whether he is in the hospital or at home, which means that Amy is no longer able to work full time, so that she can care for James. At the same time, Matt is caring for James’ twin Nolan and big sister Hensley at home and visiting James in the hospital as much as he can. And there is a long road ahead for this young family. James is currently in the middle of his chemo treatment and he will likely require daily radiation when chemo is finished.

Throughout this difficult journey, the Griffis family has been incredibly grateful for all of the love and support from friends and family. However, they need our continued help in order to best support James. As you can imagine, there are many costs associated with providing him the best possible care and best chance for successfully beating his cancer. This includes things like medical bills, costs of traveling back and forth from their home in Leesburg to Children’s National in DC, and lost income because of James’ need for 24/7 care. There will also be future costs related to cancer treatment and its effects on James’ body – things like hearing aids and therapy services.

James, his family, and his medical team are working incredibly hard to fight this cancer and they need our help. Any support – large or small – for this young family is incredibly appreciated.

Amy and Matt also ask that you also consider donating blood or platelets, as these have saved James' life many times during his cancer journey. There is currently a blood and platelet shortage, so your donation is needed more than ever. Please visit www.redcrossblood.org to schedule your donation appointment.

If you'd prefer, you can also donate directly to Amy via Venmo - @aguthrie13