I appreciate the ability and privilege to listen to people's experiences and how circumstances, mostly out of their control, have brought them to a certain point. We so often don't want to think about what we would do in those same moments and yet, it is the essence of who we are and how we project the character of who we aspire to be that comes to the forefront when faced with a dilemma we never saw coming. There is no black friday, holiday parties, ski vacations, or even plans for new years resolutions. There is simply family and there is now. What it requires is patience and faith that a direction will be given in due time, so in the meantime you just get on with something that represents the bond only a parent can feel. These amazing families that are looking for miracles when modern medicine is short on ideas magnify courage and can live with the bittersweet days where every hour should be as full as possible. I aspire to be that strong someday.
We did get an answer from the docs as to what was causing Ellie's fevers and overall strange blood counts for the past two weeks. They often will run a test for one of as many as eight different strands of the flu. The test is often not thought necessary because it rarely comes back positive. Not so in this case as we got a positive result for an influenza variation that was finally deemed the culprit of our double ER visit week after thanksgiving. Thankfully, her fever subsided after being on and off for about a week. Her croup cough is also gone and her blood counts returned to their nice and suppressed state. Never thought I'd be so happy to see a white blood cell count of 1K (Normal adults are in the 7K-10K range, chemotherapy purposely keeps it hovering between 1-2K).
Since she is healthier, we got the green light to begin cycle 4 of her Long Term Maintenance (LTM). As a quick refresher to you chemo newbies, an LTM cycle for her Leukemia protocol is a 3 month process broken into three 1-month patterns. At the beginning of month 1 for each cycle, she is put to sleep for a quick procedure where she receives a spinal injection (Lumbar Puncture) of methotrexate to keep the bad guys out of her central nervous system where they can possibly regenerate and hide. She also gets a shot of Vincristine and begins a 5 day course of Steroids (Prednisone). Following that, the month gets to be much easier as she goes in once a week for a shot of methotrexate through her port and labs to check blood counts. Month 2 is a complete repeat of Month 1. For Month 3, the schedule is also the same, but there is no Lumbar Puncture procedure. On top of all of this, we give her a Mercaptopurine pill every night ("6MP" for short) which has to be taken no less than 90 minutes after she finishes eating for the day. We are expected to do about 6+ cycles before treatment ends in October of next year.
Due to her being sick last week, she missed her normal procedure day for her LP and had to be moved to Monday of this week with a much later time slot. The hard part here is that she cannot eat anything before the procedure. When the time of the procedure goes late into the morning, we are faced with the task of keeping her happy after she wakes at about 6:30am. NOT EASY. Thankfully, Polly has become a pro at this and promises with a hospital gift shop toy and jamba juice smoothie en tote after she finishes her chemo provide excellent incentives. She misses school and she misses playing with her brother, but she absolutely rocks these longer days at the clinic. Did you ever think a smoothie could taste so good? :) We are surviving steroid week right now. She gets very moody and extremely tired, so we try to keep her happy and allow for plenty of breaks. The steroid course for this month ends on Friday. Its funny, we talk about what we are most looking forward to about the holidays, and tonight it was the very reassuring thought that we will get to have a Christmas day this year (unlike last) where she will be NOT be on steroids. That's pretty cool.
I often think fondly back on an aspect of my time at Carolina while I was in grad school. My daily routine for the initial summer and fall semester was to drive from our apartment on the outskirts of Raleigh over to Chapel Hill and park in one of the free lots east of campus to catch a bus the rest of the way up the "hill" on Franklin street. Right about the time I had decided to quit my job and move back east, I had purchased a pair of shoes long sought after but rarely seen in stores I would frequent (ok, I don't frequent stores but that is besides the point). They were blue Adidas Gazelles. I loved these shoes, so comfortable and what I wore everyday at school while roaming around Chapel Hill. So, I'd park my car at the bus stop, put on my ipod mini (I know - how archaic?!) and make a decision on some days to forgo the bus ride so to hoof it up to class. Why not? The shoes were comfy! It was typically a balmy 75-80 degrees and 95% humidity, so not the most enticing conditions for a California grown individual to *want* to hike around in, but it was perhaps one of the best parts of my entire experience. Life was changing. It was a leap of faith to find a new career path and a time when Polly and I were figuring out how much our individual paths were meant to be traveled together from now on. So, I found time to walk....and walk some more with music guiding a reflecting thought process which brought great clarity of purpose to what I was there to do. I got to where I was going sweat drenched and still tired from the morning. But see the arrival at that point was a lesson in itself. Someone was showing me how to create a more meaningful niche able to handle whatever was ahead. It was God's plan, I know it. I'm not sure I live up to those expectations for this niche everyday, Lord knows I need to stop worrying, but I still have my shoes to remind me I can start walking in the right direction anytime I want to. And I have Polly to walk right beside. I cannot predict but I think together we are strong enough to face any dilemma that may come and, conversely, celebrate like mad the infinite accomplishments that are to come in between.
So, this Christmas season can really be thought of two fold. We are fully engulfed in cycle 4. We have the threat of flu bugs and potential side effects of treatment everyday. Hell, the amount of chemo she gets is accumulating in her body and we may be facing long term physical issues to deal with down the road (which I will gladly do ten times over if you can promise her life will be saved). But there is also right now. RIGHT NOW. I have time to squeeze Ellie's nose and have her squeeze mine back. I have time to call my mom and dad. Polly and I have time to take the kids out to dinner and then come home to watch them put their stuffed animals to bed and then SHUSH us for the next 20 minutes lest we wake the poor inanimate little buggers (have to tell you that sometimes I just scream WAKE UP and when Timmy finds this hysterical, we we choose to just deal with loyal, yet sleep deprived "Monkey" and "Cow" companions....I mean you do what you have to do).
I want my kids to know there is no place like HOPE. And I want them to feel the power of today with faith to take more steps together.
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