Seeing Hollis through his final days…
If the quality of a life lived is more important than quantity, Hollis won the battle. He lived life to the fullest up until the last 12 hours of his life. He was a lover of Jesus and life, a giver of hugs and smiles and the absolute light of my life. Therefore, it’s important to us that you know the details of how quickly this disease took him from us. Unlike most DIPG patients, his only real symptoms were headaches and vomiting. That’s what caused us to take him to the hospital to be diagnosed on March 29th, 2016. The steroids given to him at diagnosis quickly relieved those symptoms and he didn’t struggle with them again until December 28th. For 9 months he lived an active, normal 7 year old boyish life, free of the usual symptoms DIPG causes. He went to school, played sports, swam and danced his legs silly.
The morning of December 28th Shane and I were talking about the scheduled MRI on January 3rd and how we were not too worried as Hollis still was not showing signs of progression. Shane and Hollis were set to leave for his 8th round of immunotherapy in Germany on January 5th and the following week stop in London to visit with Doctors about a new treatment taking place there. We figured we still had some time until the cancer started to grow and we would have a plan of action ready for that time. I guess we spoke to soon on the 28th because that night he had the first headache since March 29th. He was in pain and said, “I think it’s my tumor coming back! Please pray for me!” I rubbed his head, prayed for him and comforted him to sleep while silently praying this wasn’t the case but knowing it likely was.
The next morning, December 29th, he was in good spirits and free of pain so we decided to proceed with plans to travel to Flagstaff for a couple days to play in the snow. He didn’t seem in much pain that day or night so we were still quite hopeful the headache was a rare occurrence. On Friday, the 30th, we sled, met friends for lunch and that evening went to a friends home for dinner. Hollis had the chance to fire off a ton of rounds from a BB gun, along with a pellet gun, sling shot and bow and arrow. After dinner however, another headache set in and during the night he began vomiting. This caused us to worry enough to cut the trip short and return to Phoenix the next morning.
On the 31st he spent the day playing xbox with his brother and watching movies. But, his behavior was odd enough that we decided to get an emergency MRI through the hospital on the 1st instead of the 3rd. We wanted to have enough time to take action, if necessary, so he would be ready for the upcoming trip. He was his usual happy, talkative self as he walked into the ER for the procedure. The MRI revealed our greatest fear, that the cancer had spread quickly to his ventricles so we started him on steroids to relieve the inflammation and the ER started our discharge paperwork. We thought we would be home in time for dinner and prepare for the next round of battle against DIPG.
However, before we could be discharged, his head started hurting again and vomiting. So, they decided to admit him overnight until the steroids could really take effect. This picture is the last one I took of Hollis alive. At 8:42 PM while watching cartoons he said, “Take a picture of my cool IV for my friend Cameron Cozzi to see.” I thought this was odd but obliged and am glad I did. It is now my visual proof of how DIPG took his life in the next 24 hours. You can see him smiling and he could still walk and move normally at this time.
We went to sleep but around midnight I heard him start to vomit. I slept most of the night in his bead rubbing his head and comforting him as the pain increased and vomiting continued. They had given him some morphine in the ER and decided around 6:00 am to give another small dose to relieve pain. He went into a deep sleep and started having trouble breathing, became frantic and hallucinating at times too. This is when my real fear set in and I realized things were changing quickly. Shane and I calmed Hollis down and he fell into a comatose state. We were moved to PICU so he could be monitored more intensely.
After about 5 hours he started to wake up and speak clearly. Our family began arriving and he was aware of this. He opened his eyes and said “Hi Grandpa”, “I’m scared” or “I want some food!”. At one point he looked at his uncle and said clearly, “I want to live!” So, we thought the scariest time was behind us and the steroids were doing their job.
At 6:15 pm he looked at his Grandmother (GraMur) and said, “I just want to feel normal again.” A few minutes later our Pastor, David Stockton and his brother, Peter, arrived to pray with us over Hollis. As we started praying he became agitated, red and sweaty. His vital signs began to drop and the doctors rushed in. It became clear he would soon be leaving this earth so Shane and I rushed to his side. With both of his eyes wide open, we told him how much we loved him and enjoyed every minute we got to spend with him on earth. I told him, “If you see Jesus and your sister Savanna and want to join them, say ‘Yo guys here I come’ and run to them. “ He died soon after me saying this and was pronounced as such at 7:25 pm.
I could go on at greater length about this experience as it is traumatizing to relive. We knew one day DIPG would claim his life but we thought we would have more time with him. We thought there would be more time for treatment. We thought we’d have more than a few minutes to prepare for his departure to Heaven. We thought we’d have time to prepare him for this too. In the end, we ran out of time.
It is important that you know he did not decline the way most DIPG patients do. He was asymptomatic for almost 9 months. He had headaches for a few days before we took him to ER. He was talking, walking and drinking 12 hours before he passed away. He was clearly saying that he wanted to feel normal and live within an hour of his death. I will never know why he was taken so fast. It’s difficult to process that he left us as soon as we started to pray. Maybe the gates of Heaven opened up when we prayed and he saw Jesus and his sister, Savanna. Heaven probably looked like a better option than earth, so he ran there, as only Hollis could.