Monday, September 24, 2018

"Just To Make Sure"

This post is #103 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.

September 24, 2008

The fall of 2008 had started off so well. Hannah had completed her radiation treatments. She had started her junior year of high school and was making straight A's, as she always had. She was into her fourth month of an oral chemotherapy drug that we believed she would be finished taking after a year. She had had three "all-clear" brain scans. I had not yet "googled glioblastoma", as advised by her oncologist.  And, best of all, we were living in the heightened awareness that an experience with cancer can bring ... filled with appreciation for every moment we had together as a family, truly realizing for the first time how fragile life can be. We were enjoying our closer relationship with each other and with God.

But, as the calendar turned to September, I began to detect almost imperceptible signs that something was not quite right with Hannah. I can't even explain what I was seeing ... I really don't even know what it was specifically.  But I remember crying to Brad one night (actually several nights) that I felt like she was leaving us, bit by tiny bit. Then, as September neared its end, Hannah began to experience waves of nausea.  She had experienced queasiness and nausea on and off since prior to her diagnosis in February of that year, but this was different.  We waited for a few days, thinking it would pass ... thinking it was due to the chemo drug she was taking five days out of every month (she was in the middle of those five days when it started). We also thought it could be a stomach virus, because there was a vicious one being passed around in our community at that time. But when it didn't pass, I called our oncology nurse at Arkansas Children's Hospital. She talked to our doctor, and they decided to move up her MRI appointment. Hannah had just had a clean MRI about seven weeks earlier, and she wasn't scheduled for another until September 29th, but five days before that, on September 24th, we found ourselves in the basement at ACH, getting ready for Hannah's turn in the tube.

There were lots of kids getting MRIs that day, and Hannah's turn did not come until 5:00 pm. At ACH, parents are able to sit in the MRI room while their children are being scanned. Because of the strongly magnetized tube, you have to leave your watch, keys, cellphone, etc. in a locker, and then you sit in an uncomfortable plastic lawn chair (you know, the ones you can get a Dollar General for five bucks) near the door. They hand you a set of earplugs and then close that big door. The temperature in the room is uncomfortably chilly because it apparently gets very warm inside the MRI tube during the scan. After the first MRI, I learned to always wear a hoodie, no matter what the temperature was outside. Bethany came with us that night, but no one under 18 is allowed in the MRI room, so she and Brad waited outside in the waiting room, while I sat alone in my cheap plastic chair.

There is nothing like seeing your child being prepped for a medical procedure and feeling like a helpless observer. Whether it's a surgery, a scan, a chemo infusion, a radiation treatment, or even routine bloodwork ... it's hard to watch. I stood beside Hannah that night and watched as they meticulously positioned her on the table, strapped her in, put headphones over her ears, and placed a folded washcloth over her eyes (she always asked for that ... it helped her keep her eyes shut). Then I sat in my chair by the door as the table slid into the tube and the jackhammer sounds of the MRI began pounding in my head. All I could see now were Hannah's feet. And I wondered ... not for the first time ... how she could lie in that tube, unmoving, uncomplaining, with no sign of fear, knowing that the results of this scan could indicate whether she would live or die?  How does anyone do that, much less a 16-year-old girl?

I was thankful that night that we were only scheduled for a brain MRI, which takes about 45 minutes, more or less. Those 45 minutes seemed to take forever, but finally the clacking of the MRI machine stopped. I waited for the team to come into the room, push the button, slide Hannah out of there and set us free, but they didn't come in right away like they usually did. In fact, it was several minutes later before they finally came in, and they told me that they had decided to scan Hannah's spine, too ... "just to make sure." They slid her out of the tube, explained to her that it was going to take a little longer, asked her if she needed to go to the bathroom. Of course, she did ... she always needed to go to the bathroom when she got MRIs ... and while she was in the bathroom, I found Brad in the waiting room and told him what was going on. And we knew ... we knew ... that this was not good.

After the trip to the restroom, Hannah got back up on the table, I watched them prep her again, and the incessant jackhammer sound started back up. I remember sitting there frozen (not because of the room temperature), unable to think, unable to read, unable to pray. Just breathing was an effort. An interminable hour and fifteen minutes crawled by, and finally we were done. The team came in, all smiles, and set Hannah free so she could go get dressed. We peppered them with questions while she was gone ... Why the unscheduled spine scan? Why did it take so long? What was going on? Of course, they could tell us nothing. They did tell us that they had talked to her doctor during the scans and that he had instructed have them to scan everything, as they said, "just to make sure."

It was about 7:30 p.m. before we started the trip home. We were all nervous, knowing that things had not gone the way we expected them to that evening. We managed to convince ourselves that the doctor was just being cautious, and discussed how fortunate we were to have a doctor that was willing to go the extra mile "just to make sure." We spent some time in prayer together as a family that night, again determinedly placing Hannah in God's hands, knowing that we could trust Him with her future. Sleep was evasive that night, though, knowing that we would most likely be getting results the next day. I knew, in my heart of hearts, that the results would not be good.

My email from ten years ago tonight ...

We just got home from Children's Hospital. We arrived there about 3:30 this afternoon, and Hannah had an IV put in and her blood drawn. The MRI started about 5:00, and lasted for about two hours. They scanned both her brain and her spine. We do not have any results yet, but hope to hear something in the morning. Thank you for your prayers and your many emails and phone calls of encouragement ... we will update again as soon as we have some news.

God is good, all the time!
Jill and Brad


Nancy Fitts said...

Jill, I can so identify with you as you sat there watching and waiting helplessly. How did we get through those moments? Only by the grace of our loving Father. Sept. 25 is 4 years since my Stephenie left us to go to heaven. She was in a hospice facility for 2 1/2 weeks and I stayed there with her. I now wonder "how did I lie down and sleep while my child lay there dying?" Only by God's grace. Thank you for sharing your journey and your heart with us.

Victoria Whyte said...

I’m in floods of tears reading this and the previous one. Hannah’s diagnosis is different to Leah’s as are many of the details, but there are so very many similarities. I knew deep inside weeks before we were ever told also. Your Hannah sounds very similar to our Leah in so many ways. Thank you for sharing your story. ❤️