Up at 4:30 a.m.; out the door by 5:00; Arrive at hospital registration at 6:00. Waking up with smiles and daddy clowning. Pre-Op, Drs. and Nurses – Oh my! Good bye hugs and tears for fears. Into the OR for 7:30, and begin surgery by 8:00. 8:30 lead surgeon talks with parents and shares positive details and discharge instructions. 9:00 am out of OR. 10:00 waking up for 2nd time, discharge requirements and medications. 11:00 am back in the car and home by noon. And since then; sleep, smiles, nap, medications, TV, nap, medications, food, moving around, computer, medications and sleep.
General: God is good all the time, all the time God is good! Prayer warriors are indispensible. Evan is the definition of courage. Grace should never be taken forgranted.
Good: Attending surgeon, The Wray family, Tim Goodale and Granddad
Bad: Anesthetist, CRNA and Pre-Op nurse, Lymphedema
Ugly: Post-Op nurse, Adult rules for pediatric patients
It has not passed my attention that this blog has at times been more than a little esoteric. It has been an outlet for a deeply troubled father and a tool for sharing some of the more difficult realities of travelling a life journey with a child who is facing the battle of their life: literally. In no way has the trip been easy, and while we would never wish this reality upon anyone else, we have come to grasp that how we traverse these obstacles has presented some of the readers with concepts of hope, joy and peace in a way that they may have never thought possible. Perhaps it is you who we have been able to shed a little light upon your path.
The post immediately before this one is a brief look at an instant. A ‘moment’; a single point; a point of ‘pain’ on a sphere of possible pain, some points seemingly more painful than others.
ESOTERIC SIDEBAR: Evan’s sister Morgan is taking Geometry this year and all analogies seem to take on mathematical contexts. In this instance, we look at a sphere. A circle is said to inscribe a single plane in an infinite series of points connected in an continuous arc equidistant from a central point. A sphere is a series of points that number as a product of an infinite number of points of one circle of one plane multiplied by an infinite number of planes describing an infinite number of identical circles. And so it is that the number of possible ways a person might feel pain is infinity x infinity x infinity.
EXOTERIC APPLICATION: Friday night Evan was the guest of Eric Staal and the Carolina Hurricanes at an NHL game promoting Hockey Fights Cancer. In our suite was a young girl Evan’s age who we met when we first started at UNC. Her fight is not going nearly as well; she has lost her hair, her left arm, and yesterday had surgery to remove tumors from her lungs. Monday I met briefly with Evan’s school’s administrator who lost a dear sister in law and mother to a post operative complication 3 days after a ‘minor’ procedure. Any pain we might feel is but a single point on a sphere of infinite points that one person’s pain cannot be compared to another’s but rather the one in pain needs prayer, love and encouragement based in reality.
THE GOOD: Dr. David Olilla is a cancer surgeon who specializes in adult melanoma resection. It in his hands that we have placed Evan’s outcome, it was his hand that held each of the doors open on the way into the operating room as he walked beside Evan, and it is his hand that he extended to hold and comfort Evan before anesthesia took him beyond the conscious world. The work is aggressive for an aggressive disease. The tumor found just 3 weeks ago had quadrupled in size and had developed a nearby sister. The operation took both masses, and surrounding layers of muscle and fascia. The closure involved bringing skin from below up to the incision line and placing a drain to reduce swelling.
To all who have offered prayer and continue to keep us in their thoughts and prayers; please find our appreciation and gratitude for all you do in these following paragraphs.
Heather and David Wray, and there three amazing children, Ethan, Claire and Mary have been a tower of strength in prayer and purposeful support. I could write pages and pages about their strength and friendship; or their point of pain as they prepare to fight against neurofibromatosis; but today let me just say thank you for a timely wonderful meal. Tonight Heather whipped up Chicken Tetrazzini and Claire threw together some tasty muffins. Mmm mmm Good!
Tim Goodale is a Special Forces medic serving in Afghanistan. Over 10,000 miles away, 9 time zones apart, and he used his precious phone time to call and check on Evan. He has been there 4 months, has 3 more to go, misses home and his fiancé Katrina more than words can say; and out of the blue a voice ethereal from the middle of Asia brings a measure of love and humility that reminds us how important relationships near and far are to our health and perspective.
And then there is the love of family. How do you say thank you to a father and Granddad? Today it was taking Morgan to and from school. Other days its picking up a grocery or two; and then there is the spaghetti dinners each week. And you would be hard pressed to find a more dedicated and committed prayer warrior.
THE BAD: In March as part of the surgery Evan had left axillary lymph node dissection (removal of the lymph system from his left arm pit) as a result he should never have an IV in his left arm or his blood pressure measured on his left arm. At some point this morning we slipped from patient advocate into full parent mode; we had shared with the pre care nurse the ‘no left arm’ procedures; the Anesthetist said she was familiar with his history; Evan had a prepped port-a-cath, and yet in post op we were horrified to see a swollen left arm and an IV start in his left hand. No harm, no foul, but a bitter reality that you can never let your guard down. Too many assumptions, too many things that might go wrong.
THE UGLY: Caregivers and rules not geared toward family and patient support of children as patients. “If you don’t pee in the next 30 minutes I’m going to have to catheterize you.”, “Only one visitor can be with the patient in recovery, it doesn’t matter their age, other patients might see you receiving favoritism.”
OVERALL: We will eagerly await pathology of the masses, we will maintain a highly vigilant attitude and revise our tracking process, we will hug a little tighter and love a little deeper. We will heal and we will take physical therapy. We will give glory too God for this day, for this moment, and we will seize the day and live for this instant. We will pray for friends, family, acquaintances and strangers who maybe experiencing their point of pain on the cancer sphere, and we will thank you for your patience, love and the peace you bring to us through your thoughts and prayers.