Past 24 Hours
I wanted to take this opportunity to talk about what’s recently happened with Hollis in the last 24 hours. Yesterday, Hollis, Shawnee and I took an ambulance ride to the Mayo Clinic in Phoenix, AZ where our first visit to Mayo’s radiation oncology was a consultation with Dr. Thomas Daniels, the radiation oncologist and his care team including a resident physician and a registered nurse. We took this visit to determine when Hollis would start his radiation therapy, which turns out will be Wednesday, April 7th. Since Hollis is an active 7 year old, an immobilization device known as a face mask was made for him yesterday. His head was marked with small dots to ensure that the precise area will be treated. Hollis will undergo 5 days a week of radiation therapy for the next 6 weeks. The Mayo Clinic will use high energy rays from a specialized machine to damage or shrink the tumor he has.
Radiation therapy (x-rays directed at the tumor) is the only proven beneficial treatment but unfortunately for limited duration. The radiation kills some of the cancer cells, shrinking the tumor and reducing pressure on the brainstem. This can greatly improve how Hollis feels and functions for a few months, and 75-85% of patients show improvement in symptoms after radiation therapy. Because even carefully aimed radiation therapy causes some damage to the healthy brain tissue surrounding the tumor, there is a limit to how much radiation therapy can be given to each patient. Unfortunately, the reality of this is the tumor almost always grows back after a few months.
So then what happens? We have been in touch with an amazing specialist at Lucile Packard Children’s Hospital in Palo Alto, CA at Stanford, Dr. Michelle Monje Deisseroth. She continues to make great strides in improving our understanding of diffuse intrinsic pontine glioma (DIPG) and our ability to treat it. As I stated before, DIPG is the brain tumor that was found in a part of Hollis’ brainstem called the pons. Dr. Monje is studying DIPG from multiple angles, hoping both to improve current treatments and to develop a cure.
Dr. Monje has developed the first working model of DIPG, allowing her and her team to test potential treatments in the lab, something that has never been done before for DIPG. Dr. Monje and her team have identified a drug that has proven successful in treating DIPG in mice and will soon start a Phase I clinical trial for human subjects. Dr. Michael Etzl at Phoenix Children’s Hospital will be speaking with Dr. Monje in the coming days to determine if our sweet Hollis might possibly be a candidate for this trial.
Having said all that, I now offer this prayer for Hollis. Lord, I know you are the greatest Physician of all. We lift up our precious Hollis to You, who is so ill, and ask that You bring him back to full health and strength speedily and remove all the pain and fear that this aggressive illness is causing. We ask Father, that in Your grace and love that You will spare him from fear and the suffering that this wretched illness is causing and that You will help and guide Shawnee, Rhett and I, together with the medical professionals, to care for him and treat him with the medication and help that is most needful. Bless Hollis’ young life, Lord and I pray that You would make Yourself beautifully known to him, in a very special way, so that Hollis understands that You are with him and said, suffer the little children to come unto Me. Comfort Shawnee, Rhett and I in our desperate time of need and may we draw every closer to You during this difficult time.
In Jesus’ Almighty name I pray.