He wasn't mad. He wasn't concerned. Remarkably, he started commending the group for the work done to date. (What?) The biggest asset we brought to the greater project, he explained, was the work rate. IN all of about two sentences, he summed up his thoughts and then adjourned the meeting. Though I do not recall the exact words it was something like this, "I believe the work you have done has given us some valuable information. Seems to be we can start anew by just adding a little soap to the device. See how that works and let me know". (WHAT?) We had been going in circles for days and all we needed to do was add soap???? Ha! I still marvel at the simplicity of his message. Give it a try, you have nothing to lose. Why not? Sometimes we waste so much time in details when the easy choice is potentially that simple. Soap. SOAP! And to tell you the truth, I couldn't tell you if the soap angle helped since this was nearly 10 years ago. I don't think that really matters at this point. What does matter is the effectiveness of brilliant leadership that communicated a direction, offered motivation, and gave assurance that seemingly futile prior efforts were anything but. All in a handful of sentences with a simple determined look which never wavered in purpose. We all seek the end result, but the simple messages heard along the way have profound effects far beyond what we could have comprehended on the day they were first heard. Several simple messages have equated to a mountain of strength for us in this unrelenting childhood cancer world. As a result, I consider myself very fortunate.
So, some good news. Ellie has now been in Long Term Maintenance for a full year and has ONLY 8 more months to go with her weekly chemo sessions. Her blood counts have been hovering around a suppressed but heart warming "normal" state for a while now. She caught a bad cold this past month as we expected would happen once the flu season kicked into high gear (we all actually got some form or another of it). I am not afraid to tell you that our family arsenal of humidifiers, nebulizers, medicines, and homemade chicken soup for the soul may cause our electricity bill to go up, but the cold bug was effectively beaten this time. Of course there is worry about how much any given virus might take hold (we would be silly not to prepare for various scenarios) but Polly has become so in tune with anticipating how these things affect Ellie that the process to fight it off has become an efficient one and quite simple. I tell God often enough in my occasional swing through the school chapel before my work day begins that I can handle the snotty noses pretty well if he can keep those CBC panels clear and free. The partnership is working thus far and I will spend a lifetime giving thanks for it. He and I are good like that.
We are also well into the wonderful period of the terrible threes where key choices during the day can walk the fine line of gleeful bliss or temper tantrums heard round the world. Just yesterday, I decided to move the stroller from the front porch to the car. Apparently, the mere thought of such a dastardly deed was enough to send both kids into hysterics. The tantrums get good too....foot stomping which leads to each child throwing themselves on the floor as if to practice future WWE moves. The dog doesn't even try to move anymore with any semblance of shock. Rather, we just weather the storm and five minutes later laughter abounds because one twin makes a glitter pen explode while the other provides assurance that it will be spread to every corner of the living room (I will admit to having anger toward the inventor of said pens). Year threes is also bringing about pretty amazing accomplishments. Both kids can get around on scooters with ease, draw pictures that look like something, and argue with us about what they want to wear and then put it on themselves so Polly and I can absolve ourselves of any connection to how they dress. After being worried about Ellie's motor skill development from the multiple Vincristine injections, she is able to keep up with Timmy on the park jungle gym, climbing everything in sight. The best sight is watching them play for hours on end with each other coming up with these elaborate pretend schemes where they work together to get where they need to go. This past weekend when Polly was away and I was tasked with entertaining for 48 hours, these two made it simple. They spent two hours without interruption (ok, except for necessary snacks) driving their dolls to various activities in the living room, including a stop at Camp Okizu and several preschool "circle times" all before making sure their babies were put to sleep in time for a proper nap. It is a friendship I could not have imagined possible prior to parenthood because you have to witness it first hand to really understand. Twins are quite the blessing. They provide tantrums in stereo, but they also know their first connection in this world (and perhaps their strongest) is to each other. I don't even want to think about where we would be against Leukemia without it.
Our last trip as a family outside of the Bay Area was late May of 2011, about a month before Ellie was diagnosed. Now a couple months shy of two years, we have finally been given clearance by Ellie's doc to take her on a quick vacation more than 2 hours away from Stanford. So, very soon we will be heading to snow for a couple days in the Sierras. I don't care how long it takes us to drive in get-away traffic that heads East around here every evening. It just doesn't matter in this case. We're gonna explore some new territory and give them both a few new reasons to smile. We likely won't do more than eat, sleep, and sled. And we'll still have to match a dinner schedule to her chemo schedule, but again....minor details. It represents another simple baby step forward.
On February 15th, Polly and I attended the memorial service for student/soccer player I had the pleasure of teaching/coaching a few years back which I mentioned in my last post. He passed after a two year battle with Ewings Sarcoma. A battle that was initially won over a year ago.....and then reinstated this past December with a terminal prognosis. The Pastor's story about his meeting with Kurtis at the hospital some number of days before he passed was nothing short of remarkable. It was a lesson for us and many others present that day. Kurtis made a choice to end his treatment and walk into God's arms on his own terms. He faced an ultimate fear head on and found clarity of purpose. I can only speculate, but perhaps this was his simple idea of accepting the comfort of an eternal peace. The Pastor provided a message through Kurtis' selfless sacrifice that peace is possible and, in this case, achieved with clear eyes and a full heart. Kurtis is a hero....I won't forget that.
I think we can put a proper perspective on many things but often spend too much time spinning our wheels with the complexities of what it all may mean. With solutions few and far between for enduring battles, there must be a way to find peace with the surrounding simplicities in our direct line of sight. Who would have ever thought of SOAP at that moment? I know I will forever seek the ace in the hole that provides my daughter with a cure, but day to day....things are much simpler. There is purpose in watching, in listening, and in experiencing. I am working on this. Some of it can be as easy as putting my phone away more often and some of it may just be slowing down a whole lot more on the work front. Regardless, it is quite apparent I am here to bear witness to the simple joys seen through my kids' lives. To this end, I know peace is eventually going to be the only choice to be had. We're gonna beat this thing. Thanks, Kurtis.
Psalm 121
I lift up my eyes to the mountains
where does my help come from?
My help comes from the Lord,
the maker of heaven and earth
He will not let your foot slip
He who watches over you will not slumber;
indeed, he who watches over Israel
will neither slumber nor sleep.
The Lord watches over you,
the Lord is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night.
The Lord will keep you from all harm,
He will watch over your life;
The Lord will watch over your coming and going
both now and forevermore.
June 19, 2009 - 15 days old
My favorite picture during that oh, so sleep deprived first month of the Twins' lives
Back when life was simple, right?
Pab,
ReplyDeleteI always suspected TT was one of the most important soldiers in this great battle and I appreciate you telling us about it.
-Pab