My 11th grade english teacher taught me a literary lesson I certainly won't forget. Maybe not a single lesson persay as it is more of method to look between the lines for deeper meaning in a story. If knowledge is power then finding unwritten meaning in such a manner is where power meets clarity. With clarity comes peace. Its understanding from all angles, so to speak. There were 2-3 books we read in class that year each with a supporting character that had the initials J.C. I'm no literary scholar but the use of such a tool was very meaningful and enriching. A tangible Christ like character that saves the day in an indirect manner but with a striking and, more importantly, lasting impression. J.C's make poignant decisions, sacrifice for the greater good, and find a way to reassure everyone else in a way that is unquestionable. Collectively the main characters benefited from JC's actions....but to find an end to their own journey, they all had to eventually find their own way home.
Since those days in junior english I've watched for J.C. to show up in things I've read or seen. Its kinda fun to look for actually. John Coffey in The Green Mile and Jimmy Chitwood in Hoosiers are two of my favorites. Both men make those around them better and each can provide relief to suffering in a way no one else can. Chitwood's stone cold confidence in putting his coach, team, and entire town on his shoulders when everyone was looking at him to do just that is a Hollywood miracle, yes, but provides food for thought to those of us that have to go at this thing on our own. Real life doesn't really allow for such a character to swoop in and provide that ultimate relief. My mind can't help but keep searching for a form of that person though. Trust me, we often want our doctors to have all of the answers and are persistent with questions hoping we might be the first to know with 100% certainty that she will be cured. In that search I know I will likely finish many conversations in the same place I started - still worried that my daughter has a life threatening disease. But even if I cannot find that lasting peace for a while, I am thankful tonight for the ability to believe that pieces of J.C. show themselves in various forms through several people everyday.
We were able to bring Ellie home on Sunday and that was a blessing. She was full of life on Monday and we kinda ran through the day like we were normal. By Wednesday the chemo had started to hit her very hard. One of the awful side effects of the methotrexate are these mouth sores. They are big, painful, and make her world miserable. Couple that with onset of the nausea that shows itself typically 3-4 days after the HDMTX has been given and it just kinda snowballs on her. Our Thanksgiving was not in the hospital and for this I am grateful, but the toll on her has wiped away any fun she was having earlier in the week and Turkey day came with a lot of tears.
Last night was a 3am wake up call where we are trying to figure which of the meds to give that will ease her pain. She was pretty queasy all day Thursday and did not eat or drink hardly anything. Fortunately, we had labs set up for today (Friday) at the clinic as per our schedule after being discharged last weekend. So, we were able to get a look at her blood counts and get some IV fluids for her. She's dipped under the neutropenic line again. Staying home for the next few days is now a must. They gave us a more powerful pain med to help but really it seems the message coming out of the clinic is grin and bear it while making her as comfortable as possible. (See why it would be nice if I could just take her over to John Coffey's cell for 2 minutes about now) Ellie screaming for 20 minutes is doable, but over a few hours complete with an upset stomach is not something I would wish on anyone.
Today, one of our favorite nurses came to see Polly and El while she sat and got her fluids today in the clinic. She mentioned that the teenagers who are fighting Leukemia at LPCH almost always say that this part with the severe mouth sores is the absolute worst of the entire treatment protocol. This being said to us during what is supposed to be a lighter phase ahead of our most difficult phase of treatment in a month's time. But you know I thought about this when Polly told me about the conversation this afternoon. If this is one of the hardest parts, then right there is some small reassurance that we can handle what's ahead assuming we survive the weekend (and we will survive the weekend). I'm not going to say that I don't doubt from time to time....because I do. This struggle is all encompassing and emotionally exhausting. But like a J.C. character, the nurse today without saying it directly was offering a calming voice that related and reassured. That's amazing.
So, now we just try to wait this out. Though she didn't eat much the last two days, she did manage to ask for and then devour 5 bites of pumpkin pie. 12 hours of on/off tears and not all is completely lost around here. Pumpkin Pies by Jane Craft? Not sure because the pie boxes were thrown away by the time the pie came to us....but it wouldn't surprise me at all. I am thankful this Thanksgiving for the hope provided in the small but daily doses from people who care when they don't have to. In some of our desperation to ease her pain on days like today, remembering those moments are as solid as a Jimmy Chitwood jumpshot.
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