Tuesday, October 20, 2009

And the Other Shoe Drops!

Each time my fingers hit the keys to put together a post it seems tougher and tougher to find the words. Clearly words and I are not strangers; but capturing the moment, establishing the essence is often difficult if not impossible. Such is the reality of this post. Evan has had cancer, Evan has cancer, and Evan will have cancer in the future.
In this latest battle, surgery cleared margins all around the masses, but the infilitrating tendrils reached through the muscle, beyond the fascia and wrapped themselves in the fat around the 11th rib. This is beyond the edge of the surgeon’s reach, it is into very dangerous areas. The war is reaching a crescendo. Even though we found these new masses quickly, it clearly was not quickly enough.
What does this mean? It means that bad cells were left in a place where they are not likely to receive the nutrients necessary to grow and as a result will likely die in place. Because of the placement of the cells and the lack of access to nutrients, it is also a bad location for chemotherapy. If it does grow again from these cells, it will be concealed beneath the layers of skin, muscle and connective tissue between the rib and the skin. If it does grow again, it will be closer to Evan’s solid organs than it has ever been. If it grows again, there is no lymph defense system between it and his central blood circulation. Left some behind, likely, likely, if, if, if. Not particularly encouraging words, not the words you want to hear
Where do we go from here? Wait and watch! Be vigilant and be prepared. Scan in 6 months.
What have we gained? Time. Time to love. Time to learn. Time to allow immunity to gain a foothold. Time for prayer, and time for peace. Time to reinforce hope. Time to encourage others. Time to plan for our futures. Time to quantify the love in a hug.
We will always have time for peace, that internal place of sanctity granted by the very presence of our creator. For if we do not create and take the time for it now, we will have an eternity to wonder why we didn’t.
And how does a person quantify the love in a hug? We’re not quite sure, but we know that Evan gives the best. And until you can quantify the love in a hug, and show us someone with more than Evan’s, we defy you to find better.
What next? Well for Evan it is back to school today, no time like the present. So with his 6 inch drain line out on Monday, a 10” incision from his spine to his side, and a slightly twisted gait from the tight left sided muscles, Evan will be walking down the halls of school today. We asked for ‘body guards’ and have ordered a sweat wicking armored (a flak jacket assembly, looks like the Master Chief from HALO) t-shirt we will get him back to ‘normal’ 10 year old activities as soon as possible. But surely we tell you that courage has a new name today, and with a resilience and strength of Kevlar reinforced carbon composite plating, it must be known as Evan.

Tuesday, October 13, 2009

The Good, the Bad and the Ugly!

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

The Journal:
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.

Waiting on the moment . . .

Having delivered Evan to the hospital for a 6:00 am start to today’s adventure in medicine, and now while waiting for the page to return to post operative recovery; I am contemplating the ‘moment’ The ‘moment’ is a multifaceted mile post on our journeys through life. This morning it was that instant where Evan was separated from us heading back to the operating room.
Up to that instant the entire process had been part of an academic medical exercise; after this instant is the reality of surgery, pre-operative anxiety and post-operative anesthesia induced fog and pain. The instant is marked by deep longing hugs where hearts meld together as one and a steady drip of tears marking the hidden and unspoken fears.
And so we wait.

Thursday, October 8, 2009

The Silver Lining. . . Surgery in Six days

MEDICAL: Diagnosis: Recurrent Malignant Melanoma without metastasis. The CT scan revealed a primary mass and an adjacent mass within the confines of the original wide margin border. These two growths sit on top of the left side 11th rib. They do not involve the surrounding fascia on the scan and the scan revealed no distant metastasis within the body but especially to no organs.
Treatment: Local wide margin excision of the masses including overlying skin, involved fascia, muscle and potential the periosteum (bone covering) of the underlying rib.
INSIGHT: When battling cancer there are fewer more clear paradoxes than potential surgery. The silver lining to this battle in this war is that the proposed surgery is the most appropriate course of action at this juncture. The looming cloud prior to scan results is multiple distant metastases with a lousy prognosis. The tension prior to hearing the results was palpable. The relief was equally real, and there was a collective sigh on the part of us; the parents.
The primary good news this time around has been the rapid identification of the recurrence. In the past 10 days, the second mass had become visible; and this recurrence seems directly related to an overall growth spurt. Because it has been caught early, the underlying rib will remain, and there is no need for a skin graft. It will also mean outpatient surgery; waking up and going to bed in his own bed – priceless.
SPIRITUAL: Unsure as to the parts, roles and lines in the plan of the great play, trusting the director and appreciating a prayerfully and thoughtful audience participation.
EDUCATIONAL: Teachers and Administrators: informed, involved and supportive.

Sunday, October 4, 2009

Here we go again!

Three weeks ago I gave Evan a hug good night. His mom, Lizy was in Seattle with her job. In an instant it felt like the wheels on the bus came off at high speed while traversing an icy mountain pass. There it was. A lump where there shouldn’t be one. For those who are on Lizy’s rapid response prayer chain you have known about the discovery but perhaps not some of the details.
With Evan’s help I was able to change the status on my Facebook page to, “Reeling in the reality of a recurrence, Praising God for an amazing summer without worry!”
The 5 days before Mom got home were some of the most difficult times we have faced as a family through this journey. Our strength has been the ability to fill our roles within the close confines of a home filled with hope, encouragement and prayer.
While it was just a lump, and while I am not a doctor, I have been through this scenario with Evan too many times in the past 2 years. Its size, location, how it felt both to me and to Evan told me all I needed to know. What was missing was official confirmation, determination of extent and a plan of action.
I can go no further without answering the question, “How did you deal with this? How did you get through this?” I didn’t. Evan did. His tone and reaction, curiosity and understanding are remarkable.
“What is it Dad?”
“It’s a lump”
“What is it?”
“I don’t know, but I want your Doctor to take a look at it”
“What do you think it is?
“I think it’s something that’s not supposed to be there, it feels similar to before, but it’s in a slightly different location and only a Dr can tell us. I’ll move up our appointment so we can see the Dr. sooner.”
“Okay, can I sleep in Mommy’s turn tonight.” (Mommy’s turn is where Lizy sleeps, inside communication for can I cuddle with you and fall asleep in your arms Dad.)
Then we prayed asking for healing and understanding and safe travels for Mom.
Lizy got home on Saturday morning, her job with the Railhawks keeps us all busy and the Dr’s appointments had been set up for Monday afternoon. Monday arrived both too slowly and too quickly. If you have not followed Evan over time what I am about to share will seem surreal. Who am I kidding, I’ve never seen anything like it before. My son, Evan, all of 10 years old, is having a fully fledged discussion on treatment options for a recurrent melanoma complete with details such as metastatic pathways, hormonal impact upon his current growth spurt and nutritional recruitment by cancer cells.
PLAIN SPEAK: The melanoma has recurred in an area immediately adjacent to a surgical site over and involved in the fascia of his left side floating ribs. Primary treatment would be surgical excision with wide margins if CT scan does not indicate distant metastasis. This would occur sooner rather than later. This new growth appears to have origins in surgery of 2/2007 and is related to a current growth spurt (Evan has grown ~8% in weight in the past 60 days, and the mass has appeared in that time frame. It is a known fact that nevus tissue grows in proportion to general body growth.)
Evan is fully involved in 6th grade and thoroughly enjoying moving from class to class; although the 40# of books to be brought home each night can be a little burdensome (pun fully intended) Music is still a vital part of his life and he just received a new piece for piano, as soon as he gets it down I’ll post a video. If you would like to check out more pictures of Evan, please consider becoming Lizy’s friend on Facebook.
Thank you for your continued thoughts and prayers. This is a long journey, and while we have enjoyed a brief respite, as we travel onward we both desire and appreciate your support.