Friday, December 14, 2007

Today's the day - for new friends, old friends and a new activity

Today was a day for introductions. Today was a day for confirmation of the unique (or extremely rare, depending on semantics). Today was a continuation of the waiting game. Today we got a look at life in a community we don’t want to join; and began the process of acclimating ourselves to the potential of that possibility.
Today, we have added some new doctors to our team. Dr. Wechsler is the Chief of Pediatric Oncology at Duke; and Dr. Pappo is the Chair of the Children’s Oncology Group (COG) Committee on Rare Tumors. COG is the research arm for the National Institute of Health and the National Childhood Cancer Foundation. Dr. Pappo is located in Dallas, TX and was previously at St. Jude’s in Memphis. We have also reconnected with support through a group called Nevus Outreach, and they have been very helpful.
Dr. Wechsler leans heavily on the side of a conservative approach to Evan’s situation which is a true God send for all concerned. As detailed below, Childhood melanoma is a rare condition and requires close management, childhood melanomas arising from GCMN are unique, and so the word went out through COG and the brightest minds in the field are formulating best monitoring modalities and treatment protocols. All monitoring will be based on the Hippocratic theory, ‘First, do no harm’ which renders many invasive procedures off limits. The ideal choice would be a PET/CT scan which would reveal obvious hot spots around the excision site due to increased blood flow during the healing process. It might also create a wild goose chase or an opening of Pandora’s Box. And so we continue to wait.
Being unique, a one of a kind, a collector’s object is very valuable in many circles. Under these circumstances it could be seen as problematic in a good light, downright exasperating in poor light. Evan’s condition is considered rare by those who do not like to deal in absolutes, but we have yet to find a doctor who can refer us to another similar patient. COG has a wonderful website that shares some wonderful information on cancer, its incidence, prevalence, treatment, outcomes and survival rates. 450 children <20 years will be diagnosed melanoma in the US this year. 60,000 adults will be diagnosed with melanoma. Even using the higher incidence of melanoma within the GCMN community, the number of children with GCMN and melanoma in Evan’s age group is approaching 1. This means that there are no current studies or trials related to him or his condition. All treatment options other than further excision or surgeries will fall into the experimental/off label/off trial. And the reality of many of the treatment options is that they will carry a heavy price up to and including . . . Waiting is a character builder, it develops patience and discipline . . . this sounds like lecture 45 from our childhood. What it does is bring frustration, anxiety, anger, and ultimately it brings humility and peace. This is not our PLAN, this is not our place to manage a situation, and we are parts of an earthly team. A team assembled to do battle on a microscopic level with cells that are intent interfering with the life dreams and goals of boy who is as unique as the condition he carries. This team has been gifted with the brightest minds in the respective fields: Dermatology, Surgery, Pathology and Oncology. And we thank God for its assembly. A team that we know is being held up in prayer around the world. We continue to carry a hope in the plausible deniability of Evan’s clinical presentation, a rambunctious handful of playful 8 year old that has carried the initial tumor on his back since birth. The second opinion on the original expert opinion has not been developed as this is written. We were told that it would be sometime this week that we would hear about the pathology report from Dr. Kamino at NYU. You might be surprised to hear us say that this delay is good news; but she has had the slides for a longer time, and has asked to do more slides with different stains. As she is the pathologist responsible for the maintenance of the only Nevus Registry in the US, her delay indicates a level of controversy moving in a different direction likely away from treatment towards observation which is our obvious hope. Should there be any developments we will post them here in short order.

While we waited for Dr. Wechsler we were exposed to the loving community of familes, children and care providers that gather each day at the Duke Pediatric Oncology clinic. We took heart in the close knit processes and openess, and we found it all too easy to take a step backward to move away from the environment. Please hold us close to your hearts as we each struggle with a reality we are not prepared to embrace. While we are at our weakest, please pray for our strength.
Now that we’ve covered all the personnel, medical issues and primary sources of parental angst we shall return to the hero of our story, Evan and his ongoing life of excitement. This week saw the rough draft of the Science Fair 2008 entry prepared, delivered and presented. The project is the comparison of Incandescent, Fluorescent and LED light sources. Evan is evaluating power sources, power usage, light generated and cost in an effort to confirm his hypothesis that LED’s as a light source is in the best interests of us all. He built a box, put in a couple of light fixtures and some LED’s, wired the AC side, soldered the DC connections, and did the math for the report that is the backbone of his theory. Next up a visit to a local company that is a worldwide leader in commercial LED usage. He would like to extend many thanks to the Heather at the Clayton Radio Shack, and the both Tom Powers (Jr. & Sr.) at Powers Signs in Danville VA for their help in procuring the supplies.
After this morning’s trip to Duke, Evan was dropped off at school, but his thoughts were on racing. At 5:00 we joined our friends from church, The Gustavsons at Rush Hour Karting in Garner. There we all raced fast karts on an indoor track until a small spin out in turn 7 resulted in first a yellow flag, and then a red flag. Bobby had top speed, followed closely by Corey and Alex. Evan had a blast until the yellow flag but that is for another story. All in all he is loving life and livin’ large. Every passing day is a day closer to Christmas, and while he holds this sacred time close to his heart, the gleam in his eye tells the world that this day might also be call National LEGO Day. And so until next time, we leave our hero, his LEDs, LEGOs and little Mars Men to: playing, sleeping and living the life of an active engaged 8 year old.

1 comment:

Megan said...

Evan please know you are in our prayers and thoughts. May the peace of Christ be felt upon you and your family.

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you," declares the LORD, "and will bring you back from captivity." Jeremiah 29:11-14