This post is #157 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.
January 7, 2009
Hannah's original tumor site (and the same area where cancer cells were now regrowing) was in the pineal region of her brain. The primary job of the pineal gland is to produce melatonin, a hormone that modulates sleep. That gland had taken quite a hit of radiation ... twice ... and it seemed to have gone into overdrive. As Hannah's vision and balance issues increased, so did her need for sleep. She began to sleep more and more during the day. It wasn't really because she was fatigued; she just couldn't stay awake. Her doctor told us that it could be the opposite ... that the damage to the pineal gland could cause her not be able to sleep! Even though I wished she was awake more, I was thankful that she had the ability to peacefully sleep.
In addition to the ongoing double vision, her pupils were now constantly dilated due to intracranial pressure. This made it impossible to read or do anything that required close-up vision, such as text on her phone or look at social media. She was able to see the television fairly well, so when she was awake, we generally passed the time watching TV. The one time of day she always seemed to be awake was early evening when Wheel of Fortune came on. We would watch it as a family, and even though she could barely see the screen, and might have even dozed off for a second or two while the contestants were spinning the wheel, she could beat every one of us when it came to solving the puzzles! Her mind was still as sharp as ever.
As her cancer progressed over the next few weeks and her cognitive skills did begin to deteriorate, she might not know what time of day it was or remember that she had just eaten five minutes earlier ... but she could still solve those Wheel of Fortune puzzles! Still makes me smile today.
My email from ten years ago ...
Just a quick update...we're at Children's Hospital again today at the Hematology/Oncology Clinic for bloodwork. We had been told that Hannah would get platelets today since she didn't get them yesterday, but her platelet level was 63,000 today, so they have told us that she will not need an infusion after all. We will return on Friday for more bloodwork and a platelet infusion if needed. We have received several emails since yesterday from people who have asked about donating blood or platelets for Hannah. Children's Hospital does discourage people from donating for specific patients for a variety of reasons...mostly because there are so many people who need blood or blood products. We certainly do encourage you to donate, however! Apparently, donations tend to drop off around the holidays, and that may explain the shortage of blood products lately.
Hannah continues to have vision and balance problems. She is not able to see well enough to read with her double vision, and she has balance problems when walking. The location of the tumor also makes her want to sleep a lot, so she takes several naps each day. We are hopeful that with the steroids and the chemo treatments, these problems will resolve themselves over time. Please pray for strength for her as she deals with these frustrations. She is just as sharp as ever cognitively, and we are so thankful for that.
God is good, all the time!
Jill and Brad