Oct 31, 2020 Latest post:
Jun 21, 2021
With this note we wanted to introduce you to Sam’s story and how we got to this point. Early September, our whole (Michigan) family tested positive for Covid. Sam's symptoms were minor. After self-isolation (final day September 22) he returned to school feeling normal. September 29, Sam was walking through the store with Amy and all of a sudden got dizzy. Once that cleared, we finished our errand. On the way home, Sam had a bad headache and didn’t want to accompany Amy to the the next errand. Over the next week or so the headaches were on and off, and he figured out that they could be minimized if he changed positions slowly. On October 12 he woke up quite dizzy and later in the day, he vomited. We called the nurse line for direction and she recommended we take him into ER. The diagnosis made: Covid related sequelae and told us to follow up with a GP in a couple of weeks. By the week’s end, I had set up an appointment with a family doctor for oct 20. The doctor saw some redness in his ears and prescribed some antibiotics thinking, although not a usual presentation, this could be an inner ear infection. If there was no improvement within three days, we were to return to the doctor. By the end of the week, we thought Sam had made some improvements, but over the weekend symptoms worsened. Our family doctor fit us in Monday morning and ordered some labs and a CT scan of Sam’s head. The scan (done on Wednesday evening) showed an abnormality which could possibly explain Sam's symptoms, but an MRI was needed for definitive diagnosis, and he wanted it done sooner rather than later. So the next morning our doctor sent us to the ER. The MRI showed that Sam has a diffuse intrinsic pontine glioma (DIPG). This is an inoperable brain cancer . Thursday night they gave him steroids which has relieved some of the pressure in his brain. We have been meeting with all sorts of doctors and other support people to come up with a plan. This morning (Saturday) Sam had a shunt placed In him to drain extra fluid in his brain down to his abdomen. This is meant to relieve the buildup of pressure in the brain since the normal route for draining has been blocked. From here, Sam will have radiation treatment (4-5 weeks) which is meant to slow down the tumor growth for a time. We don’t know for sure how long Sam will be with us; but, it seems likely we are looking at a number of months. It’s hard to express how much we’ve been comforted by the many words of encouragement from family and friends (text messages, phone calls, emails, cards, wow!). What a joy to feel the embrace of God through the love of the saints. The LORD has shown Himself a gentle Shepherd, whose goodness and mercy are pursuing us everyday. One day, we will experience the glory of His house. What a joy that will be! We appreciate your prayers for Sam and the rest of the family in this difficult time.
What is DIPG? DIPG stands for Diffuse Intrinsic Pontine Giloma. DIPG means that an area of the brain has formed an abnormal tumorous growth of tissue in the pons, the middle part of the brain stem. The brain stem is the bottom part of the brain and connects the back portion of the brain to the vertebrates and spinal cord. Diffuse means that the tumor is not well contained. The abnormal growth of tissue grows into other brain tissues. For this reason, it is impossible to surgically remove DIPG tumors without damaging healthy tissue and causing severe brain damage. Intrinsic simply means "in", referring to the point or origin. Pontine: Pontine describes the area where the tumor is located. If a tumor is located in the part of the brain called the pons, it is a pontine tumor. The pons is the area where the spinal cord meets the brain. This area is responsible for managing important body functions: breathing, sleeping, eating and balance. The pressure from a growing tumor can make someone with DIPG lose control of these vital body functions. Glioma: Glioma is a general term for tumors that originate in the glial cells. Glial cells are found throughout the brain and make up the matter that surrounds and supports neurons that carry messages in the brain.