This post is #167 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 29, 2009
One of the most painful parts of Hannah's cancer journey was witnessing the decline of her cognitive skills. She was a girl who had always taken great pride in being a straight-A student, consistently at the top of her class, always completing her work before it was due ... and suddenly she was having difficulty putting sentences together. She was becoming more and more quiet as the struggle to find words began to overtake her.
It was around this time that we decided it was time to have a serious conversation with her about the future. Until this point, we had never discussed with her the possibility that she might die. After all, we were continually praying for healing, treatments were ongoing, and her doctors still seemed to hold out some hope (though mighty slim) for a cure. But as we observed the relentless march of the disease, we felt it was important to address the subject with her while she was still capable of having the conversation.
How do you have a conversation like that with your 17-year-old daughter? Brad and I discussed our strategy, prayed together, and then headed to the living room. We sat down on the couch beside her recliner and let her know that we wanted to discuss something important with her. We gently talked about where we found ourselves with regard to her treatments, and asked her if she might want to talk about the possibility that she could be going to Heaven soon. She looked at us calmly for a few moments, then said, "No, I'm fine. I don't really want to talk about that."
And that was the extent of our conversation on that subject. We let her know that we were available to her if at any time she wanted to discuss it, and she nodded and dozed off. We never brought it up again, and she didn't either ... and as we suspected, it wasn't long before she was no longer cognitively capable of such a conversation.
Do I wish we had had that conversation? Sometimes. I wish I knew what she was really thinking in those days. To my knowledge, she never shared her thoughts about what was happening to her with anyone. As her body was dying, she was fully living Philippians 4:6-7: "Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."
Even as her mind was leaving her, it was safely guarded in Christ Jesus.
My email from ten years ago today ...
We're at Children's getting a platelet infusion right now....they were at 36,000 today. Her ANC (immunity) has dropped to 90, and the cut-off for isolation is 500. The doctor says she can still be around people some, but only if she's willing to wear a mask all the time. He did say that he believes her right eye is moving better than it was the last time he saw her, which was about a week and a half ago. He feels that that is an encouraging sign. We will do chemo again on Monday, but she will only be able to have the Avastin, due to her low ANC count. Hannah likes that idea, because the Irinotecan makes her feel pretty rotten, and the Avastin is really the primary drug the doc wants her to have.
Hannah has developed a cough over the last couple of days. She doesn't cough very often, but when she does, it is very "chesty" sounding. The doc listened to her, and feels that the congestion is all in her upper chest, and not in her lower lungs. She also has a wisdom tooth which has picked right now to start coming through her gum. It's sore and bothers her when she tries to eat. We have to watch her really close for any signs of fever which would indicate infection. Any fever, and we'll be put in the hospital.
Our doctor still feels that some of the changes we've seen in Hannah recently are due to steroids and chemo. She's gotten very quiet lately, mostly just speaking when spoken to. She does ask questions sometimes, usually to find out what day it is or what we're having to eat. She's sometimes confused and occasionally says things that are really off the wall. Her long term memory is very good, though, and she enjoyed the opportunity to visit with some of her old friends from El Dorado this week.
We also found out today that her next MRI is scheduled for February 16th, at 8:00 a.m. The results of this MRI will tell us how effective the chemo has been and determine our treatment strategy from this point on.
Again, we can never thank you enough for the emails, cards, calls, gifts, meals, and especially, for your prayers. We can never repay the kindnesses we have received, but please know that we will never forget them!
Jill and Brad