This post is #172 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.
February 9, 2009
When we arrived at the Hem/Onc Clinic on this date ten years ago, my heart sank. The usual routine upon arrival at the clinic was to spend some time in the waiting room, then go to triage' where weight, blood pressure, etc., are checked, then come back out to the waiting room and wait some more for either an exam room to open up, or a bed to become available if the patient is there for an infusion of some sort.
On that particular day, the waiting room was packed and every bed in the infusion room was full. It was obvious we had a long wait in front of us. Hannah was completely exhausted just from the ride to Little Rock that morning, and could literally barely sit up in her wheelchair. The brightness of the waiting room assaulting her dilated pupils made things even more uncomfortable for her. I didn't know how we were possibly going to make it through the morning.
One of the nurses noticed Hannah's struggle, and called us back before it was our turn. She led us to a conference room which contained one of those pull-out sleep chairs that you find in hospital rooms, and fixed it so Hannah could lay on it while we were waiting for an available bed so she could get her platelets. She turned on a lamp and then flipped off the light switch as she closed the door behind her, giving Hannah the gift of sweet rest in privacy.
The remembrance of that gift brings tears to my eyes even today. Maybe they do that for every child who's in Hannah's situation ... but I know those nurses had a special fondness for Hannah. And for us that day, it felt like a special, secret honor. A parent never forgets kindnesses given to their children, and this particular gift of kindness will live in my memory forever.
We did finally get her platelet infusion that day, and while I sat with her, Brad took advantage of the opportunity to speak to her primary oncologist alone. Every time her doctor spoke with us, Hannah was present and listening, so he was always very careful with his words. It was time to have a conversation without that filter. Through tears, he shared with Brad that Hannah might have just 6 to 8 weeks to live, and that it might be time to consider hospice care. He told Brad that Hannah was just the kind of girl he would have chosen for his son to marry. I believe his heart was truly broken over what was happening to her.
My email from a decade ago reveals none of this ...
We are at Children's Hospital, waiting for platelets again....her platelets were 37,000 today, so she definitely needs some. Her ANC (immunity level) has risen up to 873, which is an improvement from last week, and most of her other counts are pretty good.
Hannah really seems to have lost some ground over the last several weeks. Because of the location of her tumors, she is sleepy all the time, and sleeps about 20 hours out of every day. The tumors are also affecting some of the cranial nerves, causing her eyelids to droop and making it difficult for her to keep her eyes open sometimes. Her near vision is very poor, but her distance vision is still good enough to be able to watch TV. She is frequently confused now...forgetting things that just happened a few minutes ago and asking the same questions over and over....although she can still solve the puzzles on Wheel of Fortune before the rest of us can!
She is physically very weak, needing assistance for almost everything now. Her appetite is good, and she really enjoys eating...and even still likes to go out to eat when her counts are high enough. Our doctor tells us that some of these side effects may be related to the chemotherapy and steroids she's taking, but some of them are probably also related to the cancer. It's very difficult to identify what is due to medication and what is due to the disease. Seeing these changes take place in her is by far the most difficult part of this journey.
She will have an MRI next Monday, the 16th, which will tell us a lot about what the future may hold. Of course, we know that it is God who holds the future, and who holds her in His hands...and He alone knows what is to come. We will continue to trust in Him to do what is best for Hannah, and in the meantime, we will enjoy every day as it comes. We are so thankful that she is in no pain, she has no nausea, and she has no seizure activity, which is so common in brain cancer patients. We continue to boldly ask God for healing, while acknowledging that He is sovereign in these matters.
We are also thankful that Bethany has completely recovered from being sick last week, and is back to feeling 100%. She will be playing basketball tonight, in the first night of the junior high district tournament, and is really looking forward to it. She LOVES basketball, and it's been a great distraction for her with all that's been going on in our family lately. We want to say a big THANK YOU to all of her teachers and coaches, who have really been a wonderful support system for her over the last several months. You all have really made a difference in her life, and we are grateful!
As always, we thank you for your faithful prayers for our family...God truly is good, all the time!
Jill and Brad