Now He Knows
Today was the day that we sat with Hollis in his hospital room on the 7th floor at Phoenix Children’s Hospital. This was the day that we absolutely and unequivocally feared with all of our hearts and soul. We had to tell our baby boy that he had cancer. Clearly, Shawnee and I are dealing with our own fears and confusion at this time, knowing that just a few days ago we found out that Hollis had DIPG (Diffuse Intrinsic Pontine Glioma), an inoperable and incurable cancer. And today, we had to face the task of helping Hollis understand his cancer.
I’ll admit, Shawnee and I wrestled over whether or not we could tell Hollis he had cancer. We wanted to protect him. However, with the support of our Child Life Specialist, Michelle, it was important to name Hollis’ medical condition as cancer. We recognized that we needed to further describe it to Hollis since he will hear this language from others.
We know now that naming Hollis’ illness as cancer was important. We felt that it would help build trust with Hollis, that it would help him feel included in medical exchanges, and decrease any confusion he may have. Also, our decision would prevent Hollis from learning that he has cancer by hearing it from someone else. As we began to tell the story, we knew that Hollis did not know about his cancer. However, Hollis is one smart little seven year old boy and we knew that he would use his thoughts to fill in the knowledge gaps. Furthermore, not knowing what is wrong or what to expect may cause Hollis anxiety, stress, and fear. Hollis isn’t dumb, he knew already that something wrong.
It was critical for myself, Shawnee and Michelle (PCH Child Life Specialist) to explain this to Hollis in simple terms and while fighting back the trembling, angst and tears, we needed to assure Hollis that we would be walking with him every second of every waking day. We wanted to make sure that Hollis knew he wouldn’t be living in the hospital (even though he’s addicted to the play room, the endless loops of Minions, Frozen and Wall-E and the food!). It was important for us to tell him that he would be coming home tomorrow. We also had to be honest with Hollis about the tests and treatments that would be waiting on the horizon for him but we explained to him that the doctors would take great care of him and that they would do everything in their power to make sure that he was comfortable and the headaches would stay away.
We remained open and honest and encouraged our Hollis to ask questions. It was imperative that Shawnee and I share our feelings with Hollis and encouraged him to do the same. We know that we are Hollis’ most important source of information and support. We just wanted to make sure that Hollis didn’t feel he was alone in this. When it came to explaining the meaning of words like radiation, we told him it was a way to fight the cancer; to fight the “ball” (i.e. tumor) inside his brain. We talked to Hollis about the radiation therapy that he needed would be starting next Wednesday and what will happen.
Before Hollis was ready to mentally check out and hustle down to the playroom to play endless hours of video games, Shawnee and I wanted to make sure that he knew that if we were OK, he’d be OK. We know that Hollis understands the seriousness of the situation. It’s no secret that Shawnee and I are deathly afraid and we worry about whether we will be able to sustain our emotions that come with this terminal diagnosis. But we know that we serve a Sovereign God that gives us great strength when it comes to protecting and caring for Hollis. His strength serves us as well as it can while we continue to deal with the deep rooted personal pain and distress we’re suffering every second. Shawnee and I will try to live as normally as possible through this terrifying journey. With the time we have with Hollis, we intend on spending it wisely. Our focus is living with this cancer, not fading away from it. We will continue getting together with family and friends, we’ll still go out to dinner, take trips and do as much as we are able to.
Dear Lord Jesus, You have called us to come to You when we are in trouble or heavy laden and You will give us rest, hope and comfort. I come to You today, knowing that our precious Hollis has been diagnosed with cancer. Lord, this is a shock and yet I want to trust You through it. As his father, please give me the courage I pray. Please give me the strength and courage to leave this evil cancer in Your hands, knowing that You have scheduled every day of Hollis’ life and this is no surprise to You. Be with Shawnee and I and everyone that knows our sweet Hollis as I know that our hope seems to be shattered and we ALL are in deep distress. I ask Lord that through this moment that You will draw our love for Hollis into a saving faith and full fellowship. We pray that You would heal Hollis; we lay his life into Your strong hands, and thank You that Hollis is Your child.
Thank you that we all can come to You at this hour and Hope for Hollis.