On Sunday, March 20th, Hollis began to suffer some significant headaches which resulted in double vision, nausea, weakness, etc. Throughout the following week, his headaches got worse and as a result, we pursued blood work, a CT Scan and a visit to the pediatric neurosurgeon at Phoenix Children’s Hospital. All the results came back negative so we felt that he was simply dealing with migraines. On Monday, March 27th, Hollis had another painful episode which landed he and I at Phoenix Children’s Hospital ER for observation. The pain on his face was real. We decided that we would not leave the hospital without getting an MRI, a diagnostic procedure that uses a combination of large magnets, radio frequencies and a computer to produce detailed images of his brain. He was officially admitted at 2:00 am on Tuesday morning. Later that day, the results arrived and we were informed that the doctors had discovered a tumor on Hollis’ brain stem. He has since been diagnosed with Diffuse Intrinsic Pontine Glioma, (DIPG) a highly aggressive and difficult to treat brain tumor found at the base of the brain. They are glial tumors, meaning they arise from the brain’s glial tissue—tissue made up of cells that help support and protect the brain’s neurons. His tumor was found in an area of the brain stem (the lowest, stem-like part of the brain) called the pons, which controls many of the Hollis’ most vital functions such as breathing, blood pressure, and heart rate.
Hollis will begin radiation therapy very soon. This is the traditional therapy for newly diagnosed DIPGs. It uses high-energy rays(radiation) from a specialized machine to damage or kill cancer cells and shrink tumors. Conventional limited-field radiation produces responses in more than 90 percent of children with DIPGs. These responses are short-lived, however, lasting about six to nine months on average. Unfortunately, complete surgical removal is not an option in the treatment of these tumors, because of their location in the brain stem. Surgery in this part of the brain can cause severe neurological damage and affect Hollis’ vital functions. The bottom line the prognosis for DIPGs remains very poor, although a small percentage of patients survive this disease. Phoenix Children’s Hospital and the Mayo Clinic intend on offering Hollis supportive treatments intended to optimize his quality of life and promote healing and comfort for him with this life-threatening illness.
Having said that, despite the best efforts that will be inevitably made by the health care team’s surrounding Hollis, we know that we cannot cure him but this doesn’t mean that he is untreatable. We believe and pray that Hollis will live for many months or even years. His treatment will focus on controlling the DIPG, when possible, and managing symptoms so Hollis can enjoy a high quality of life for as long as possible. Shawnee and I, along with our families are infinitely committed to playing the crucial role in helping Hollis continue to live a fulfilling and comfortable life.
There is nothing that could have prepared Shawnee and I when we heard Hollis’ diagnosis. Immediately, we felt afraid and overwhelmed. This is a stressful time for us. Having to tell Hollis that he is sick will be the most single handed difficult task we’ve ever faced. We know that there is no right way to tell Hollis. As his parents, we know him best and we will find the right words at the right time. However, we will tell him the truth. We are taking advantage of the support of PCH’s health care professionals. They will help Shawnee and I talk to Hollis about his diagnosis. We’re absolutely frightened to think about talking with Hollis when Shawnee and I are dealing with our own emotions.
Shawnee and I have been overwhelmed by everyone’s messages, texts, and visits. So many people have asked how they can help and when the time is right, we will let others know what we need. We recognize that this will be good for us and for those that live close who want to be supportive. The ONE thing that we ask is for prayer. We humbly ask that all of you that know us to pray for Hollis.
Shawnee and I have asked God to bring us comfort and peace to our family. We come before HIM every waking moment we have because we know that HE knows sorrow and is acquainted with grief. HE too knows what it’s like to lose a child. Shawnee and I can’t help but ask “Why? Why our baby boy? Why our precious 7 year old?” We wrestle with insistence, confusion and anger. However, the question that we pose at this very moment is how can we prepare our hearts to move forward? How can this bring us together and not tear us apart? How can we live under the shadow of this terrible diagnosis? We profess that there is no way to remove the pain we have and that our grief is real. We trust in God and HIS promise that while Hollis’ life here on earth is numbered, his life with Jesus will just begin. It is by our faith that we expect boundless comfort in HIS presence. We would ask that during the darker days that lie ahead of us, that HE would be our light. On our loneliest days, that HE would be our friend. We pray that as each day comes and goes, we ask that our hearts not turn bitter, angry or disillusioned; that we are brought divine comfort and assurance that we all will be okay. That would be enough.
We will do our best to keep you all updated on our journey.
In HIS love,
Shane and Shawnee
Learn more about Hollis on Caring Bridge and Hope for Hollis on Facebook.