Tuesday, October 2, 2018

"It's Only Hair"

This post is #108 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.

October 2, 2008

Ten years ago today we began the next phase of Hannah's treatments ... tomotherapy radiation.  Her previous radiation treatments had been very targeted, focused precisely on the location from which her tumor had been removed.  The tomotherapy would be different, in that the machine would actually radiate her from the top of her head to her tailbone, all around her body.  While she was in the machine that day, the doctor explained all of this to us and did his best to prepare us for what was to come.  We talked a little bit about the new chemotherapy drugs she would be on, and I commented about how relieved I was that once again, this particular type of chemo would not cause Hannah to lose her hair.  I will never forget his reply:  "Oh, well, the radiation will make her lose her hair."  As I gasped for breath, he explained that because the radiation would be going all around her head this time, her hair would not survive its rays.

The tears began to flow immediately, and I actually had to step out of the room to try to get control of myself.  How was I going to break this news to Hannah?   She had been so relieved and happy when her oncologist at Children's told her that the new chemo he was prescribing would not cause her to lose her hair.  Hannah's treatment was over before I was able to completely pull myself together, and when she saw me she immediately asked what was wrong.  As you can see from my email ten years ago, she took the news in typical Hannah fashion ...

This afternoon we took Hannah to CARTI in Little Rock for her first tomotherapy radiation treatment. We met briefly with the oncologist/radiologist who explained to us that she will have a total of 20 treatments to be completed over a period of four weeks. The tomotherapy radiation is different in that they will be treating her entire head and spine, rather than a single focused area as they did previously. He explained to us that anywhere the spinal fluid flows is a potential area for tumor growth, so they have to treat the entire area. He also told us that this time she will lose all of her hair, instead of just patches of hair like she did last time, which she was able to hide so easily. He also went over all of the possible side effects from treatment, and it is a rather lengthy list. He told us that she will probably not be able to attend school at all during these treatments. He gave us prescriptions for an anti-nausea medication (Kytril) and for steroids, but told us not to start the steroids unless she begins to have severe headaches or worsened nausea.

They did another CT scan today, while she was in the tomotherapy machine, to make sure the alignment was exactly right, and then did the radiation treatment. The entire process took about 35 minutes, but from now on, each treatment will only take about 12 minutes. On the way home, we had a bit of a scare. We were nearly home when she began to develop a severe headache, pressure in her ears, and nausea. We got her home as quickly as we could and called CARTI. The on-call doctor I talked to (it was after hours by this time) explained that the tumors had probably swelled due to the radiation and that was what was causing the problem, and that we should go ahead and start her on the steroids. He said that she would probably have this reaction the first few times she had the treatment, but it should get better over time, and they could cut back on the steroids gradually at that point. I had already given her some Tylenol by this time, and she was feeling somewhat better, but we started her on the steroids in hopes that we could avoid this problem tomorrow. She is resting comfortably right now.

I think the reality of how difficult the next few weeks and months of treatment may be really hit all of us today. Hannah has been amazing though ... when we told her today what the doctor said about her hair, she said, "Well, it's only hair ... it'll grow back." Her faith is so strong, and she is truly an inspiration to us. In spite of the storms and emotions swirling in and around us, God has given us a peace as well, a peace that can only come from Him. A dear friend of mine wrote in an email that we can just rest in His "Godness" and that's what are doing.

We have received so many wonderful emails, cards, phone calls, gifts, meals....it's amazing how much those things mean in a time of storm like this. There are too many emails to personally respond to all of them, but I am printing out every one for Hannah to read and for us to keep. All we can say is, "Thank you!" You all make it easy to remember that God is good, all the time!

Jill and Brad

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