Sunday, April 22, 2012

And the other shoe dropped!

If the number of pills you take to maintain a happy life is directly related to one’s age then Evan is. . .

All the tubes for 1 blood draw

If there is no news, it must mean there is no bad news . . .

For almost a year there has been a status quo that was suddenly interrupted . . .

We hope you have not forgotten Evan, as we were trying to forget that we needed you . . .

These are the false starts of a modern day Bartleby. I’d rather not write this. I’d rather Evan was not ill. I’d rather there was no cancer. I’d rather not . . . Until at the end I am found dead in some thought debtors prison of the mind. Or perhaps I wish to be so inundated with proletariat marketing and fluff I might shrink into oblivion with the masses than try to stand up against the tidal wave of angst ala Winston Smith.

And in a nutshell, there you have it. All the angst, fear and frustrations of 5 years came crashing down upon our family 7 weeks ago. Since then there has been such an overwhelming amount of work, management and care that we have hardly time to eat, sleep or even breathe.

For the new reader here is a synopsis if you are not so inclined as to read the 57 previous posts in this blog: Evan, now 13 yrs. old, was born with a giant birthmark, initially thought to be precancerous, the subsequent testing initiated a cancerous process. 5 years ago a cosmetic surgery to remove a mass on the left side of his back resulted in 1 of 10 biopsy samples to be labeled melanoma. Since then there has been a roller coaster ride of travels, doctors, surgeries and chemotherapies. Those efforts had resulted in a tenuous status quo of minimal clinical treatments accompanied with monitoring scans to evaluate disease progression. On the social-educational side of Evan’s life, he had begun home schooling about 18 months ago to avoid any unnecessary or invasive inquiries by classmates into Evan’s ongoing situation and status. For the past 4 and half years, it seems the only constant companion in Evan’s life has been pain. Pain or discomfort, always present, has moved from place to place in a twisted effort to keep him on his toes.

Flight gear brings flight tales

On the very loud flight line.
At some point in the future, things will once again slow down and a more thorough retrospective review of events in the last seven weeks will occur. For now it shall be a simple timeline of events, comments, actions and travel: March 2nd – 90 day status scans, March 5th – poor scan report, March 6th – UNC treatment center declares they have no further cutting edge treatments and can offer 1970’s era chemo (see poison in dictionary) or palliative care stating, “We are out of options, this will kill him”, but you can always re-inquire at NIH (National Institute of Health, National Cancer Institute, just outside Washington DC). March 7th – Evan spends morning touring Seymour Johnson Air Force Base and getting guided tour of 333rd Squadron in the afternoon Dad reconnects with Dr. at NIH and a plan is initiated for Evan to be screened for new medicine and then to begin treatment by end of March. March 27th – Arrive at NIH, March 28-29th - 10 hour days of testing (MRI, CT, PET/CT, ECHO, EKG, 24Hr UA, etc.), March 30th – First infusion of Ipilimumab (Trade name Yervoy, takes the brakes off T-Cells in the immune system thereby releasing the body’s own defenses to attack cancer cells), March 31st to April 6th – stay at NIH for monitoring, April 6th – home, April 8th – Easter, April 19th – travel to NIH for 2nd dose, April 20th – home for 3 weeks before next 10 day stay at NIH arriving on May 8th.
Trying to use down time wisely

A recent Article in the New Yorker entitled “The T-Cell Army: Can the body’s immune response help treat cancer?” captures the essence of Evan’s new treatment, and an abstract of the article can be read here: A quick shout of thanks to Evan’s Granddad,, for finding this and bringing it to our attention.


Amp & Volt
 So with that is the synopsis of the last seven weeks, you might imagine that Evan’s mindset has been pushed off kilter, and you would be right. For that matter, our entire household has been turned on its head and in an effort to balance the outside chaos we have increased the internal turmoil by adding more pets. Because nothing says, “I’m looking on the bright side of life” like Dwarf Hamsters and a Dutch Shepherd.

Evan has a difficult time with his appetite and has been slowly losing weight over the past 6 months, however in the past eight weeks his weight has dropped 15 pounds. He is in a battle of demonstrating his teenage mindset of controlling the one thing in his grasp (what he eats) against the information that he must eat a certain number of calories as part of his treatment against a constant feeling of bloating against stomach pain that is related to stress against medicines that both slow up his gut and those that speed it up.

Emotionally, Evan began talking to Justin Yopp, PhD. at UNC over 6 months ago. They have developed a really good rapport so that Evan has an outlet beyond the four walls of home and with someone he can trust. The positive changes have been welcome especially over the past 7 weeks, and we will continue weekly visits for the foreseeable future.

Mentally we are all exhausted. 5 years ago it was written that this would be a marathon and not a sprint; and as we pass the 20th mile the going is slow, difficult and frankly painful. None of us has ever had to work as hard as we are right now and we would be lying to say that we do not suffer from poor eating and sleeping habits and being generally over-extended; but who else can do what we need to do as a family, as patient, as care givers?

Evan does not want to hear of new ‘miracle’ treatments, he has life experience that tells him there are no silver bullets nor is there an easy way out; only hard work and perseverance can see a person through. For anyone to face this situation with the dignity, intelligence and aplomb would be remarkable; for that person to be 13 and have had to deal with the hard questions and answers of life for 5 years is . . . I cannot find the word. If you think of it, either leave a comment here or friend Evan on Facebook and let him know directly.

Looking forward, Evan will have a number of pieces on exhibit at two local Art Shows, the first at Hope CafĂ© in Garner opens on May 7; and the second is through the ‘I CANcer’ teen support group through the UNC Cancer Center that opens in Carrboro, NC on June 6.

As tempting as it might be to resign, curl up in a ball in the corner and cry ourselves to sleep; we have not done that. Each day we commit ourselves to taking one step at a time, sometimes one hour at a time to moving forward; but we have neglected some of the rudimentary aspects of life such as taking care of the house or planting an odd flower or bush to bring a sense of living home. It just seems just a little bit too fluffy if you get our meaning; and so in the vein of an American Folk Tale, our home has become a little like Rip Van Winkle – Time has gone by, but the house remains in the past. And then last week a friend, upon the conclusion of a phone call of support, offered up the line we have heard so often over the last 5 years, “Let us know if there is anything we can do.” And from that statement has sprung an idea for a summer project where people can get involved, stuck in and have a concrete contribution to Evan’s situation.

Let the need be framed; Yardwork and landscaping, driveway extension, house painting, build a shed, and retire the ~$18,000 in outstanding medical debt that has accrued over the last year and a half (We pay $350/month already and have retired some $6,000 in co-pays and co-insurance. NB. Insurance has paid the bulk of >$500,000 in fees for hospitals, providers, scans and medicine)

The idea: Miracle2012: A multi-pronged, get involved and help summer program for Evan that culminates on the weekend of the opening ceremonies of the London Olympics – July 27, 2012.

The plan: a summer of yard work and house work building the shed designed by Evan; an online auction of items gathered from Evan’s community of supporters; and culminating with a Show and a Party.

The Requests;

The request to our friend, “Would you be willing to set up the logistics for the house?” – YES

The request to friend #2, “Would you be willing to headline/assemble a fundraising music show?” – YES

To you, “Are you willing and able to lend a hand? Hammer a nail? Plant a tree? Do you have something that might be auctioned off to help raise funds for these projects? Do you have an appetite to eat a little BBQ? Or want to hear some good local music?”

Items for consideration: Top level Signed Soccer Jerseys that could be framed (MLS, Premier Lge, etc.); baked goods from around the world that might be vacuumed sealed and shipped; Original Art; Any other contribution you believe would help.

For all those wonderful people who have lifted Evan in prayer, please do not stop. For all the amazing people who have offered to do anything, here is something.

There is no report on who has visited this blog so we would ask you to take the next step and send us an email to put yourself on the line to help out. Please send your information to