This post is #177 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 16, 2009
**WARNING** - This post is fairly graphic and could be upsetting to some. You may wish to skip the portion I've written and just read the email from this date if you think it may bother you.
Hannah was on a pretty strong dose of steroids, which had to be administered every eight hours around the clock. It had become part of my routine to set my alarm, get up during the night, go to Hannah's room, and help her take her medication. I would flip on her closet light, which gave us just enough light to do what we needed to do without making it too bright in there. At 2:30 in the morning on this date ten years ago, I went into Hannah's room and gave her her meds, which she took without incident. I went back to bed, but was still lying awake thinking about the MRI scheduled for that afternoon when I heard her softly calling me. I went back down the hall to her room, thinking she probably needed to go to the bathroom.
I entered her room and flipped on the closet light. There was an odd, coppery smell in her room. As I leaned over her bed to see what she needed, I placed my hand gently on her pillow ... and immediately withdrew it. There was something wet, warm, and sticky on her pillowcase. I assumed she had gotten sick, and I pulled the closet door open a little wider to allow more light into the room. I still couldn't see what was on her black pillowcase, but then I looked at my hand ... and it was red.
I almost screamed, but I managed to choke it back. I didn't want to frighten Hannah or awaken Bethany. Instead, I just calmly but urgently said, "Brad" ... "Brad" ... "Brad" ... at increasingly louder levels until he woke up and came into her room. By this time, I had turned on the overhead light and helped Hannah sit up in bed, and the scene was pretty disturbing. She had been bleeding heavily from her mouth and nose and blood was all over her face, her hair, her shirt, and her white and black comforter.
Our first thought was to call an ambulance, but we lived in a pretty rural area, and realized that by the time an ambulance got to our house we could be halfway to Children's. We knew we would be driving past a good-sized hospital in Benton on our way to Little Rock, so if we needed to stop there on the way, we could. We also didn't want to panic Hannah or terrify Bethany, who was still asleep, by having an ambulance pull up our driveway with lights and sirens blaring. We made a quick decision not to wake Bethany; we did not want her to see her sister in this condition. Instead, we left her sleeping in her bed and called a neighbor to come stay at the house so she wouldn't be alone when she woke up.
Hannah was remarkably calm; much calmer than we were. She really didn't even seem to be aware that there was a problem. She had been sleeping in a t-shirt, which was now full of bloodstains, and as I cleaned her face and neck and helped her get dressed to leave for the hospital, I pulled a clean shirt out of her drawer for her to wear. Nope, she didn't want to put on a different shirt, and no amount of explaining why she really needed a clean shirt would convince her to change her mind. So I decided not to fight that battle and we slipped some pants and shoes on her and off we went.
The early hour meant there were few other cars on the road and I'm pretty sure Brad broke every traffic law as he drove. The bleeding slowed and had nearly stopped by the time we reached the ER at Children's. We certainly drew everyone's attention when we entered the doors with Hannah sitting in her wheelchair in a heavily bloodstained shirt. They got us processed quickly and admitted her. Her blood work revealed very low platelets, which is what led to this bleeding episode.
Surprisingly, her doctors decided to go ahead with the MRI, even with all of this going on. Always a good sport, she agreed to give it a try. Brad and I got on either side of her and assisted her in walking from her wheelchair to the MRI table, and then helped her back to her wheelchair when it was complete. That simple detail stands out in my memory because it was the last time she ever walked. She had to be lifted from the wheelchair to her hospital bed when we got back to her room after that MRI.
The MRI results were reviewed with us that afternoon and they were devastating, but not unexpected. We would soon be faced with decisions we never thought we'd have to make on behalf of our teenage daughter. But for that night, we just settled into the familiarity of the hospital and tried to get some rest.
My email from a decade ago ...
I'm sure most of you know that we were scheduled to be at Children's this morning for an MRI; however, the day has not turned out exactly as planned. I went into Hannah's room at 2:30 this morning as I always do to give her her steroids and she was fine, but then she called me back in about 3:00. When I went in, I discovered that she was bleeding heavily from her mouth and nose, and had been for awhile. We considered calling an ambulance, but then it started to slow a little, so we threw on some clothes and loaded her up. We called a neighbor to come over and stay with Bethany while she slept...we didn't want to wake her up because it was not a pretty scene. Bethany is here with us now, thanks to her Uncle Wes, who brought her to Little Rock later this morning.
We got to Children's about 4:30 and got into the ER. Fortunately, it was not very busy at that time of the morning. They did bloodwork right away, and her platelets were quite low. Platelets are the clotting mechanism in your blood so when your platelets are low, you bleed freely. We were still able to do the MRI (just the brain, not the spine) although she had to have some breaks. We are now up in the Hematology/Oncology clinic getting our second unit of platelets. She is still having some bleeding, but hopefully the platelets will help with that. She is stable right now and resting fairly comfortably, although her blood pressure is staying pretty high.
We were able to visit with an oncologist this afternoon about the MRI results (not our regular oncologist, but one we've seen frequently). She shared with us that the results indicated that the cancer has spread to various points throughout her brain, and there is hydrocephalus (swelling) present. The hydrocephalus is particularly dangerous, because it can cause the brain to compress down into the brainstem, which is the area that controls blood pressure, breathing, and heart rate. We will stay here overnight tonight, and tomorrow we will have to make some decisions regarding hospice care. Please pray that we will have the wisdom to make the right decisions for Hannah and for our family. The doctor told us that without miraculous intervention, her time on earth could be very short.
Of course, we are deeply saddened by this news, but at the same time, we are filled with the peace that only God can give. He has been faithful to us through every step of this almost year-long journey, and we know He will be faithful to see us through.
And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:7
God is good, all the time!
Jill and Brad