Yesterday afternoon a group of four people met to discuss Evan, his disease and decide upon a course of action. It was 90 minutes of discussing Evan's health, mental status, medications, past results, and location, location, location. While Evan has been a valued member of his own treatment team, this time he sent a delegate beside his parents to represent his views. Evan's war right now is being fought on 2 fronts: Depression and Pain; and while he is making good progress on both he is still in a dark place. What follows is a summation of that discussion.
Love, Hope, Peace and Joy all bound together within the complex web of Faith. To a certain extent we are able to wrap our mental fingers around the intangible concepts of: Love – commitment to placing a higher value on the life of another than on our own; Peace – a place of quiet confidence from where we are able to face the tough situations and decisions while being comforted that whatever the choice the outcome will be acceptable; Joy – to hold a position of satisfaction of purposes fulfilled regardless of or in spite of any mental or physical status; Faith – being confident in what we hope for and assurance about what we do not see.
Hope is much more difficult to frame. We know how it feels when it’s present, and we know what it looks when it isn’t. But if we presume that the presence of Hope is yellow and warm, then its absence is cold and dark. When Hope is realized, it is no longer Hope, it is Joy and Peace and Love, and our Faith is kindled by its realization; but when Hope is absent or worse robbed from us, the depths of cold and despair know only one true end – death.
And so it is easy to see that as one holds Hope in a Faith, as the origin of that Faith is vindicated by both the presence of Hope and the results of its maturing into Love, Peace and Joy realized. If one holds fast to Science above all things, then one might wait an awfully long time for the meaning of life to be calculated through an equation to be 42. The scientific process is relentlessly slow, a painstakingly boring in its incremental march toward universal knowledge. In Evan’s case there remain options, but the no remaining options have a scientific basis for success, it has come down to an equation of the gut instinct of the Doctor most familiar with the disease process that afflicts Evan.
For those who look to the Faith of their fathers for a medical intersession of a miracle there has been an apparent lack of miraculous response from heaven. No sudden healing, no command to get up and walk, no shrinking of tumors, only a terrible feeling of hopelessness. We have seen it first hand in the overwhelming of Evan’s ability to remain resilient in the face of a disease that continues to rob him of nutrition, oxygen , and the very will to live. Until . . .
Until the medical community sets pretense and data capture aside and looks to holistically treat out of compassion born of humility. Until cousins sit and chat about things that interest Evan, not curious to find out what interesting things have been happening to Evan. Until a surrogate big brother plays Lego for the sake of playing. Until an Uncle just sits and chills expecting nothing but that time should be allowed to pass. Until Evan read cards from 25 states wishing him courage, good tidings, love and encouragement – “It’s good to read such nice things, it makes me happy”, says Evan.
Hope is not found in medicine and science, but medicine and science can be parts of Hope. Hope is found in not accepting death as a forgone conclusion, but living life as it is today. Hope is not found in past successes or failures, but in realizing that the journey made smoother by learning is a path toward Hope. Hope is not found in a new drug, a current therapy or a future treatment; but a new drug working in concert with present and past treatments brought together in a novel approach does offer hope.
But the truest Hope is found in the combined hearts of all who have known Evan or have come to know him by these posts; it is in your hearts that you hold out all the Love, Joy, Peace and Faith toward him in the Hope that he will get well. As this process has stripped away reliance upon science and the crutches of formalized religion; what has been left is the art of medicine in a seemingly arcane method of weaving knowledge with instinct woven into a tapestry of love and compassion that has been held together with the threads of your thoughts and prayers.
Time has never been on Evan’s side, and it seems that this adage remains true. But we would ask you to consider this reality: If time marches relentlessly toward a future, a future Evan wishes to embrace; should we not engage the time we have with the living of life rather than the avoidance of death? Do we Hope for a future without death, or do we Hope to live Life to the fullest? Does Hope even care about such large and ponderous existential ideas; or is it simply concerned with a desire for pepperoni pizza for dinner tonight?
Thursday, May 24, 2012
Thursday, May 10, 2012
A Picture is Worth a 1000 Touches
It would be safe to say that there has been resistance to writing this post for some time. But the images that were taken yesterday were reviewed today. Evan’s weight loss has not been caused by nausea or lost appetite, but by the robbery of all nutrition and energy by the tumors in his body. Any Registered Dietician will tell you that a 4000 calorie deficit/day while exercising to lose weight is unhealthy, but to lose a pound a day while doing nothing points to a much bigger problem. That problem was painted in stark terms and images today. Not only had the main tumors grown together and bigger, but Evan’s lungs lit up like the neighbor’s spruce fir decorated for Christmas. And to add insult to injury, the main mass in his back has started to encroach on his spinal cord in a speed and manner that is of primary consideration.
The nightmare doesn’t end, hope is not restored, stark terror runs coursing through mind and body when the plan of action is revealed. Stop all chemotherapy, start radiation oncology to attack the tumor invading his spine, seek to restore balance and quality to Evan’s life by choosing the battle to be fought while suing for peace with the Grim Reaper. There are other possible treatments, but the spinal cord must be saved first and that will give time for all the distant metastases to continue on their destructive paths. Time is definitely not on our side to win the war.
Evan has fought a long brutal war of attrition with his invisible foe. He has been a valiant hero and a beacon of courage and strength to all who have met him; and at some basic level he must be given the dignity of ending his war on his terms, and that is what we will struggle with next. With all the tough love recently over eating and drinking enough, it would be fair to say that the paces Evan has taken of recent have been not to let his family down , afraid that we will not love him as much or think him a failure. Nothing could be further from the truth, but teenagers can be tricky to deal with. All of the above came together in 10 tortuous minutes while Evan was talking with his psychologist.
Therapeutic touch is an accepted reality amongst many medical practitioners; however the art form is used by a seldom few who practice day after day to get it right so to convey support and not pity, calm and peace rather than stress. There is in the midst of these unsolicited touches an appreciation of intent that is rudely whipped to the side by the revulsion and disgust of the patronization of the ordeal. There is a profound claustrophobia that closes in like an English fog in winter that occurs when such difficult information is shared. Support by an unfamiliar touch of an unknown pitying person is rejected in favor of the need for space, air and a few cleansing breaths.
On the way to our next and now emergent appointment the chance to breathe and get bearings is muted by yet another round of questions by a new set of staffers in a new discipline. Yes, Evan was immediately whisked to Radiation Oncology where after bureaucratic badgering, he was fitted for radiation treatment, rescanned and marked for treatment. Tomorrow begins a new treatment, hope is held in an experimental T-Cell vaccine that would be cultured from Evan’s tissue. That hope may be fleeting if the vaccine team does not feel it can be done successfully, the FDA does not approve, or he runs out of time.
If you would like to mail Evan a note of encouragement,
Evan Coleman
1032 Newburgh Cir.
Raleigh, NC 27603
The nightmare doesn’t end, hope is not restored, stark terror runs coursing through mind and body when the plan of action is revealed. Stop all chemotherapy, start radiation oncology to attack the tumor invading his spine, seek to restore balance and quality to Evan’s life by choosing the battle to be fought while suing for peace with the Grim Reaper. There are other possible treatments, but the spinal cord must be saved first and that will give time for all the distant metastases to continue on their destructive paths. Time is definitely not on our side to win the war.
Evan has fought a long brutal war of attrition with his invisible foe. He has been a valiant hero and a beacon of courage and strength to all who have met him; and at some basic level he must be given the dignity of ending his war on his terms, and that is what we will struggle with next. With all the tough love recently over eating and drinking enough, it would be fair to say that the paces Evan has taken of recent have been not to let his family down , afraid that we will not love him as much or think him a failure. Nothing could be further from the truth, but teenagers can be tricky to deal with. All of the above came together in 10 tortuous minutes while Evan was talking with his psychologist.
Therapeutic touch is an accepted reality amongst many medical practitioners; however the art form is used by a seldom few who practice day after day to get it right so to convey support and not pity, calm and peace rather than stress. There is in the midst of these unsolicited touches an appreciation of intent that is rudely whipped to the side by the revulsion and disgust of the patronization of the ordeal. There is a profound claustrophobia that closes in like an English fog in winter that occurs when such difficult information is shared. Support by an unfamiliar touch of an unknown pitying person is rejected in favor of the need for space, air and a few cleansing breaths.
On the way to our next and now emergent appointment the chance to breathe and get bearings is muted by yet another round of questions by a new set of staffers in a new discipline. Yes, Evan was immediately whisked to Radiation Oncology where after bureaucratic badgering, he was fitted for radiation treatment, rescanned and marked for treatment. Tomorrow begins a new treatment, hope is held in an experimental T-Cell vaccine that would be cultured from Evan’s tissue. That hope may be fleeting if the vaccine team does not feel it can be done successfully, the FDA does not approve, or he runs out of time.
If you would like to mail Evan a note of encouragement,
Evan Coleman
1032 Newburgh Cir.
Raleigh, NC 27603
Wednesday, May 9, 2012
It's Cold Outside
It’s cold outside. It’s raining outside. And we’re hurting inside. We’re fractured and cracked, broken and beaten, and every step is like walking on the glass that was our armor. A beam of light is flashed outside. While a flash of light beams inside us, on the pain that seems to keep us dry. There’s a game on TV, two guys care but cannot speak, But who really cares about the Heat. This is NIH.
Right now, the writer of this post has been banished from the presence of the main protagonist because the sound of eating was too much to bear. 24 hours ago Evan was settling in to The Children’s Inn at NIH, there had been a 6 hour drive preceded by 6 anxious hours. And it seems that anxiety is the only constant companion of anyone associated with Evan. Gone is the joy, the winsome smile, the brilliantly timed one liners; and in their place there is a hollow person going through the paces as he is told to take them.
Disjointed, broken free verse seems so appropriate for sharing this situation. Please pardon the lack of cohesion. Evan spends his resting time in a modified downward facing dog pose using his head and knees as fulcrums while arching at his waist, face down in his pillow of choice, butt up in the air in some effort to moon and disrespect anyone who would criticize this position of comfort. When action is required it is balanced between aimless pacing, scalding showers or dips into bath water that you could cook carrots in. We are in the best place physically for being in the worst place physically; but you could never tell from the oppressive weight of despair that seems to hang over Evan’s head that is broken by sunshine smiles when engaged by those loving souls who meet him where he is and not where they want him to be.
Evan’s current weight is down to 92 lbs, and weight loss seems to be slowing although this may just reflect that there is little left to lose without major consequence. The scans of today will be reviewed with us tomorrow morning amidst other scans, tests and evaluations. We don’t know what we’ll hear; all we have to go on is our own observations and feelings: Evan is in less pain but has less energy and more suffering from nausea and anxiety. The visible masses have blended back into one large mass that looks like a split Polish sausage under a blanket. And overall Evan’s spirits have hit a brick wall which has a decided wet blanket effect on those closest to him.
Miracle 2012 seems so far away, plans are being made, schedules being assembled and calendars are forthcoming; but landscaping, yard work, art, auctions and music seem so trite at this moment. It is difficult to celebrate life when you have been looking at death for so long. We need some better news tomorrow but the cold icy grip of fear seems to have an unrelenting hold upon our hearts. Evan needs to hear that there is light at the end of the tunnel; whether that light be heaven or the future he does not care he is just tired of fighting. Parents need to hear glimmers of hope that can be spun into a woven tale of perseverance for their son; because the blanket of yesterday is tattered, torn and trampled.
Right now, the writer of this post has been banished from the presence of the main protagonist because the sound of eating was too much to bear. 24 hours ago Evan was settling in to The Children’s Inn at NIH, there had been a 6 hour drive preceded by 6 anxious hours. And it seems that anxiety is the only constant companion of anyone associated with Evan. Gone is the joy, the winsome smile, the brilliantly timed one liners; and in their place there is a hollow person going through the paces as he is told to take them.
Disjointed, broken free verse seems so appropriate for sharing this situation. Please pardon the lack of cohesion. Evan spends his resting time in a modified downward facing dog pose using his head and knees as fulcrums while arching at his waist, face down in his pillow of choice, butt up in the air in some effort to moon and disrespect anyone who would criticize this position of comfort. When action is required it is balanced between aimless pacing, scalding showers or dips into bath water that you could cook carrots in. We are in the best place physically for being in the worst place physically; but you could never tell from the oppressive weight of despair that seems to hang over Evan’s head that is broken by sunshine smiles when engaged by those loving souls who meet him where he is and not where they want him to be.
Evan’s current weight is down to 92 lbs, and weight loss seems to be slowing although this may just reflect that there is little left to lose without major consequence. The scans of today will be reviewed with us tomorrow morning amidst other scans, tests and evaluations. We don’t know what we’ll hear; all we have to go on is our own observations and feelings: Evan is in less pain but has less energy and more suffering from nausea and anxiety. The visible masses have blended back into one large mass that looks like a split Polish sausage under a blanket. And overall Evan’s spirits have hit a brick wall which has a decided wet blanket effect on those closest to him.
Miracle 2012 seems so far away, plans are being made, schedules being assembled and calendars are forthcoming; but landscaping, yard work, art, auctions and music seem so trite at this moment. It is difficult to celebrate life when you have been looking at death for so long. We need some better news tomorrow but the cold icy grip of fear seems to have an unrelenting hold upon our hearts. Evan needs to hear that there is light at the end of the tunnel; whether that light be heaven or the future he does not care he is just tired of fighting. Parents need to hear glimmers of hope that can be spun into a woven tale of perseverance for their son; because the blanket of yesterday is tattered, torn and trampled.
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. . .
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.
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 Café 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 Miracle2012@e-colemans.com
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| 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.
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| Flight gear brings flight tales |
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| 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.
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| 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: http://www.newyorker.com/reporting/2012/04/23/120423fa_fact_groopman. A quick shout of thanks to Evan’s Granddad, RevPat@e-colemans.com, for finding this and bringing it to our attention.
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| Pixel |
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| Amp & Volt |
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 Café 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 Miracle2012@e-colemans.com
Saturday, June 4, 2011
Confirmation - Frustration
For the longest time the writing for this blog has been driven by circumstance; and for an equally long time there has been a truism – No News is Good News. But sometimes, the news we have, the information we intend to share is so gut wrenching, so utterly sickening that we feel that we have been kicked in the gut so hard as to drain the color from our faces and leave us gasping for air. We are unable to immediately share. Such is the case in this instance.
We have a holistic approach to Evan and his condition in that we can take into account his entire history, balance this with the picture of his mental and spiritual health; and from this perspective we hold fast to a faith and hope that he has/is/will continue to battle off the challenges inside his body and live a full life. But we have skipped ahead too far and too fast, let’s just slow down and start back in February of this year.
At that time, the chemotherapy regimen seemed a little lax with hit-n-miss dates, no real pressure to be on a regular schedule, staff taking chemo directions as suggestion vs. law, everything was swimmingly normal. After two previous scans showing remarkable reductions in tumor size; frankly there was more concern on our part that Evan had missed a couple of growth spurts and was dealing with some annoying side effects (The concern over side effects is directly proportional to the likelihood of imminent demise).
In comparison to constant nausea, loss of hair and lowered immune system the issues were minor; however, when they are the only indicator that you are ill and you’re having difficulty sleeping such side effects loom much larger.
We wanted a break from these annoyances, previous scans looked good, perhaps the nodules had become a more chronic situation, needing to be knocked down a peg, and then keeping them in check. So we asked about the possibility of a treatment break, the oncologist reluctantly agreed but only if Evan had a new set of scans and that after a 90 day break there would be a post break set of scans to gage what had happened.
This pre-chemo-break set of scans revealed that the nodules had not really changed since the previous set of scans. The oncologist took this to mean that the chemotherapy had run its course and that UNC was out of treatment options. The next step would be to wait and see and then make a determination for a course of action after 90 days, but that we should start the process of getting more fully connected with another treatment center, specifically NIH due to their familiarity with Evan and the underlying rarity of his disease process.
During the first part of this treatment break, and in a totally unrelated and red herring aside, Evan took an academic standardized test to see if his dad was a suitable teacher for continued home-schooling. Frankly given the amount of time that dad spent on his own schoolwork, some people may have been concerned that Evan could even spell his name correctly after a year of questionable education.
60 days later the results were in. And dad can continue being the teacher as Evan scored in the 97th percentile for his grade; mom & dad are greatly relieved as this represents the one of two growing parts of their retirement plan (the other being Evan’s sister, Morgan).
In early April, the on again / off again / on again science conference on pigmented lesions in Germany confirmed that dad was asked to attend and to share an update on Evan, if possible in the form of a case report. Starting and ending the first weekend in May, the trip was a crazy travel affair, from last minute changes to the requested paper, a 24 hr notice for the need of a poster presentation, missed flights, lost luggage, too much German beer; all done within 96 hours.
The paper was well received and there was encouragement to submit it to peer-reviewed journals. But more importantly was information presented by other researchers on genetic pathways, triggers and chromosomal analysis related to malignant disease. One piece of information stood out in a discussion: Other patients with nevi related flank nodules have been seen elsewhere in the world, and bad outcomes had been seen where these flank nodules had been attempted to be removed. There is no data on this subset of cases yet. (and the numbers are increasingly baffling – giant nevi occur 1:500,000, but a giant nevi may be caused by any of 14 different genetic anomalies, and the trigger for these anomalies might occur at several places on the embryonic development timeline in >20 possible environmental-to-genetic links) And yet as rare as we have felt Evan to be, even possibly unique, a doctor had seen not just one patient like Evan, but several. He is not alone, (never has been, never will be) but it is strangely comforting to know that there are others struggling with the same issues.
When dad returned home, it was time to schedule the post-treatment follow-up scan - which happened 8 days ago. We did not expect miracles. In the past 3 months, Evan has grown almost 2 inches taller and gained over 5 pounds. We have witnessed over his life, that as he grew bigger – so did the nodules. So when this past Tuesday, the oncologist called to tell us that the nodules were bigger, we were not surprised, when she mentioned that they had doubled in size we did not panic; but when she asked adamantly to speak to us without Evan present we knew there was a problem.
It is time for a brief digression. Two years ago Evan began the process of confirmation in our church; a guided introspective journey of education, belief and convictions. The confirmation process will culminate today, Pentecost Sunday, with Evan’s public confirmation of his faith. Such events and cultural practices go back millennia and are considered to be the spiritual demarcation where a person moves from childhood to adulthood. We are reasonably confident that Evan has already crossed this bridge with everything he has been through, but ritual is ritual.
We hope you can grasp that the weight of the weekend (a weight we left for another to carry) was multiplied when we added a secret meeting with his oncologist on top of the confirmation dinner, prayer-pal revealing, confirmation service, and his confirmation open-house. The insanity of the situation is that balance in our lives is directly related to the amount of other things filling our time; in such a manner we are able to balance the temptation of allowing our thoughts to delve into introspective self-pity. We also handled the pre- and post-surgical care of a top level international soccer player on this weekend just for good measure.
Going into the meeting with the oncologist we developed an idea of what we were likely to hear: the tumors are bigger, out of treatment options, does NIH have any options. We were not prepared to grasp/hear: 8 times larger than February, this will cause his death, “No, Can’t, Won’t”. It was not until we actually heard the desperation, frustration, fear and lost hope in the voice of your son’s archetypal cancer fighter; that the jack boot hits our gut and tried to suck the very life giving air from our lungs.
So what do you do after hearing those sort of things; here’s an idea, Johnny Carino’s for a light Italian lunch followed by conversation and calls to ensure that your son is ready for his piano lesson in the afternoon. We have heard doom before, we have seen people lose hope for Evan and for others; but we chose to stay calm in the moment, applying all we know and have learned to guide our little boat through the shoals of naysayers and doom mongers. If we lose our focus now, if we drop our gaze from the target, if we panic; then we do no one, especially Evan any good. In fact we will likely do him harm.
For those of you who cry for Evan, and for us; thank you. If you have read this blog in the past you know that it has been a source of raw emotion at times, a place to vent angst and spew frustration. Today we must set aside that luxury in favor of a measured evaluation of the situation to make the best decisions for Evan’s health and quality of life; a long life.
In contrast to the depths of despair that Evan’s worldy physician shared, we would like to close this post by sharing the letter we wrote to Evan for his Confirmation Sunday:
Evan;
For several years we have written about you.
We have written about your battles.
We have written about your travels,
and some parts of you that have travelled further.
We have written about your Faith.
We have written about your Love.
We have written about your Legos.
And we have written about your status in our life as our hero.
But what is a hero?
Does a hero wear a long cape?
Or perhaps a mask over their eyes?
Maybe they can be invisible,
cloaked from the ‘bad guys’.
Or maybe they wear a jester’s hat
and have a shiny mirrored disco ball spray out light rays that shatter maelstrom warriors into little, tiny bricks.
That all sounds heroic,
but it just doesn’t feel right for you
or the world.
Which brings up another question,
what exactly do hero’s do?
Do they attempt to eliminate all the evil in the world?
Or is it something more subtle,
perhaps simply providing comfort
or friendship to a suffering soul?
Perhaps shielding the innocent from the ravages
that the storms of life seem to rain down
from time to time?
And where does a hero get their strength from?
Do you eat your Wheaties?
Or maybe you are infused with power
from a sun soaked nano-suit of reactive armor?
Or do you draw upon a power from within,
from a power cell that was planted in you
with the simple pouring of water on your forehead as an infant?
And what is your real enemy?
Is it feeling weak
after holding that disco ball above your head?
Or do you feel worn down by the constant pressure
of battling invisible foes?
When you shield others do you feel chipped and broken
and not quite whole?
Or is it the tired feeling
of trying to hide from a relentless foe
that never gives up?
Or is it perhaps,
a sense of faith slipping from your grasp,
like feeling the edge of a cliff under your heals?
That just one more second of your burden,
will end in shattered shards of glass.
That the glass that shatters
might be your fragile heart.
As you choose to profess and confirm
your faith and belief in Jesus;
it should come as no surprise
that a hero cannot do
what they do,
when they do it,
or how they do it;
without having a hero themselves.
And it is this hero of yours,
Jesus Christ,
who you try to model
before those you meet every day.
With Jesus as your hero,
you do not have to be perfect,
because He is.
You do not have to be sinless,
because He is.
And when you get tired,
you know that He is tireless.
And when your heart feels empty,
you know that His is always full.
So as the journey of your life moves through this station;
we give you two blessings:
1. Preach the Good News of your Hero to all you meet in your journey;
do it with love,
compassion
and strength
words only if necessary.
2. You are our hero
as you battle against unseen enemies;
but we know that it is your Hero
that gives you
passion,
peace,
wisdom
and joy;
So remember:
Dead heroes save no lives.
And keep on living,
for today is the first day in the rest of your life
All our Love
Mom & Dad
Thursday, November 25, 2010
Give Thanks & Thank you!
Today is Thanksgiving Day in the United States. Regardless of folk law, turkeys, posh looking Pilgrims with stiff collars and professional American football; the first Thanksgiving was less of a celebration of feasting success, and much more the appreciation of divine grace that they had been the recipients of a miracle that allowed them (the Pilgrims) to continue living. They thanked God not for turkey, corn or Native American friends (Indians to the less PC); they thanked their Heavenly Father for the miracle of continued life.
Today is a day of reflection in our house. After three years of struggle (almost to the day) we have been handed a miracle of continued life. Some will argue mightily that medicine and science have succeeded in Evan’s case. We do not discount this stance; but we also acknowledge that a power has been called to bear on Evan by no less that the effort of prayer. Those prayers have been yours, ours, and so many others who may just hear about Evan; and offer a quick word on his behalf in their conversations with God.
We cannot thank each of you enough for those words; however short, long, ugly or eloquent that conversation may have been. From those efforts we have received miraculous results. Both of Evan’s tumors have shown decreases in size of greater than 50% in very short time. Conventional wisdom is leading us to a reality that there will always be some residual scarring inside that we might equate with Jacob’s limp or Paul’s thorn for Evan; an ever present reminder that we are to be grateful recipients of a life touched by God. And a grateful heart touched by God has a greater responsibility.
Such a responsibility is not to stand on a rooftop praising God for our miracle. It is to pray for all whom we meet. It is to be compassionate and sharing with all who seek our counsel. It is to be a beacon of hope to those who feel lost and abandoned. It is to shore up the supports of those who have experienced loss beyond words; to share faith to those who face uncertainty.
Let us share the stories of 4 such people that you might offer prayers of hope, love and support; even as you may be reclining with your friends and family on this day of thanks.
Grant, 8 years old, and his family found out this spring that he had a brain tumor. After a valiant fight, Grant died earlier this fall. We know that he is in Heaven; but left behind are his mom, dad and older brother. Please pray for their peace during this tumultuous time, or offer a thought that they find hope and joy in the coming days and months.
Josiah, 14 years old and a talented athlete, and his family; found out early this fall that he had been diagnosed with malignant melanoma under unusual circumstances. His excisional surgery resulted in a status of NED (No Evidence of Disease) but they now face the uphill battle of getting a definitive diagnosis and treatment choices. Please pray for their insight and continued strength as they face a long uncertain road ahead of them, or offer a thought of thanks on their behalf while they push on in his battle.
Consider Rachel and her 2 year old son, just diagnosed with a malignancy associated with his nevus and NCM (Neuro Cutaneous Melanosis). He has begun a course of chemotherapy; and due to an extensive lack of study into this rarest of rare situations means that divine guidance for insights for their medical team is essential. A word for love, compassion and healing, a thought for peace and continued support would not be remiss.
Think of Chris who is Evan’s Sunday school teacher. She found out this fall that she had colon cancer. After surgery she now faces chemotherapy. She shaved her head to raise money for childhood cancer research and continues to teach Sunday school. Offer a thought and prayer for her continued courage and the strength of a husband who stands by her as a pillar of faith and service.
As you sit at your feast this afternoon, take a moment as you look at the plate of bounty before you and consider taking that time and pondering these words from Paul’s letter to the church in Thessalonica:
In closing, as we enter the commercial fray of this holiday season; We thank you for your continued support as our battles continue; And we offer prayers of hope, peace, joy and love to each of you - in, by and through the power of the spirit of the season, The Holy Spirit. Many continued blessings to you all.
Today is a day of reflection in our house. After three years of struggle (almost to the day) we have been handed a miracle of continued life. Some will argue mightily that medicine and science have succeeded in Evan’s case. We do not discount this stance; but we also acknowledge that a power has been called to bear on Evan by no less that the effort of prayer. Those prayers have been yours, ours, and so many others who may just hear about Evan; and offer a quick word on his behalf in their conversations with God.
We cannot thank each of you enough for those words; however short, long, ugly or eloquent that conversation may have been. From those efforts we have received miraculous results. Both of Evan’s tumors have shown decreases in size of greater than 50% in very short time. Conventional wisdom is leading us to a reality that there will always be some residual scarring inside that we might equate with Jacob’s limp or Paul’s thorn for Evan; an ever present reminder that we are to be grateful recipients of a life touched by God. And a grateful heart touched by God has a greater responsibility.
Such a responsibility is not to stand on a rooftop praising God for our miracle. It is to pray for all whom we meet. It is to be compassionate and sharing with all who seek our counsel. It is to be a beacon of hope to those who feel lost and abandoned. It is to shore up the supports of those who have experienced loss beyond words; to share faith to those who face uncertainty.
Let us share the stories of 4 such people that you might offer prayers of hope, love and support; even as you may be reclining with your friends and family on this day of thanks.
Grant, 8 years old, and his family found out this spring that he had a brain tumor. After a valiant fight, Grant died earlier this fall. We know that he is in Heaven; but left behind are his mom, dad and older brother. Please pray for their peace during this tumultuous time, or offer a thought that they find hope and joy in the coming days and months.
Josiah, 14 years old and a talented athlete, and his family; found out early this fall that he had been diagnosed with malignant melanoma under unusual circumstances. His excisional surgery resulted in a status of NED (No Evidence of Disease) but they now face the uphill battle of getting a definitive diagnosis and treatment choices. Please pray for their insight and continued strength as they face a long uncertain road ahead of them, or offer a thought of thanks on their behalf while they push on in his battle.
Consider Rachel and her 2 year old son, just diagnosed with a malignancy associated with his nevus and NCM (Neuro Cutaneous Melanosis). He has begun a course of chemotherapy; and due to an extensive lack of study into this rarest of rare situations means that divine guidance for insights for their medical team is essential. A word for love, compassion and healing, a thought for peace and continued support would not be remiss.
Think of Chris who is Evan’s Sunday school teacher. She found out this fall that she had colon cancer. After surgery she now faces chemotherapy. She shaved her head to raise money for childhood cancer research and continues to teach Sunday school. Offer a thought and prayer for her continued courage and the strength of a husband who stands by her as a pillar of faith and service.
As you sit at your feast this afternoon, take a moment as you look at the plate of bounty before you and consider taking that time and pondering these words from Paul’s letter to the church in Thessalonica:
- We always thank God for all of you, mentioning you in our prayers. We continually remember before our God and Father your work produced by faith, your labor prompted by love; and your endurance inspired by hope in our Lord Jesus Christ.
In closing, as we enter the commercial fray of this holiday season; We thank you for your continued support as our battles continue; And we offer prayers of hope, peace, joy and love to each of you - in, by and through the power of the spirit of the season, The Holy Spirit. Many continued blessings to you all.
Saturday, August 7, 2010
The Mice of NIH
For all who are familiar with the children’s story, The Rats of NIMH, we now offer this sequel. (If you haven’t read it, follow along, no information from the original is required for this story. ) For purely background information, mice share 98% of our genetic code which makes them ideal for laboratory purposes of medical modeling.
10 years ago the founders of Nevus Outreach were invited to a conference about mouse models for research, the conference was in Bar Harbor Maine at the Jackson Laboratories where they develop and distribute mouse lines for genetic research. When confronted by the very beautiful and influential Megan, they began to seek out a natural nevus presenting mouse. Across the world the order of DND (Do Not Dispose) for spotted mice was sent.
Two years later, Spot, the mouse was born in Japan, and the beginning of mouse model research for nevi was jumpstarted. Since that time, 14 different variations of pigment generating genetic code have been identified.
Jump forward to yesterday. Evan was invited to participate in the NCI –omics project. In the –omics project, an NIH doctor creates xenograft mice and matching cell lines for comparative study by researchers across the country, and by default the world.
In xenograft research, a person’s genetic code is fully sequenced, reproduced and then spliced into a mouse. The mouse that is created is like a child of the xenograft donor. These mice can then be studied and analyzed. Evan is soon to be the ‘father’ of Spot 2A (Evan’s code), Spot 2B (Nevus), and Spot 2C (Tumor). It takes about 30 days to become a mouse progenitor vs. 270 for a human.
These mouse lines and the corresponding matching human cell lines will be available for research to any scientist in the US who has access to the NIH. The potential research will allow windows into a specific case of GCMN, and also into tumors arising within a GCMN which is in turn a much more focused look into how melanocytic tumors genetically differ from normal tissue (The nevus differences by themselves are red herrings of malignant process)
As an adjunct aside, it likely that the mice used will have come from UNC; and there are Psychological researchers at NIH & UNC who are interested in LEGO therapy; and we will be both expanding our involvement with NIH and keeping our treatment at UNC for now.
And that’s the end of this chapter.
10 years ago the founders of Nevus Outreach were invited to a conference about mouse models for research, the conference was in Bar Harbor Maine at the Jackson Laboratories where they develop and distribute mouse lines for genetic research. When confronted by the very beautiful and influential Megan, they began to seek out a natural nevus presenting mouse. Across the world the order of DND (Do Not Dispose) for spotted mice was sent.
Two years later, Spot, the mouse was born in Japan, and the beginning of mouse model research for nevi was jumpstarted. Since that time, 14 different variations of pigment generating genetic code have been identified.
Jump forward to yesterday. Evan was invited to participate in the NCI –omics project. In the –omics project, an NIH doctor creates xenograft mice and matching cell lines for comparative study by researchers across the country, and by default the world.
In xenograft research, a person’s genetic code is fully sequenced, reproduced and then spliced into a mouse. The mouse that is created is like a child of the xenograft donor. These mice can then be studied and analyzed. Evan is soon to be the ‘father’ of Spot 2A (Evan’s code), Spot 2B (Nevus), and Spot 2C (Tumor). It takes about 30 days to become a mouse progenitor vs. 270 for a human.
These mouse lines and the corresponding matching human cell lines will be available for research to any scientist in the US who has access to the NIH. The potential research will allow windows into a specific case of GCMN, and also into tumors arising within a GCMN which is in turn a much more focused look into how melanocytic tumors genetically differ from normal tissue (The nevus differences by themselves are red herrings of malignant process)
As an adjunct aside, it likely that the mice used will have come from UNC; and there are Psychological researchers at NIH & UNC who are interested in LEGO therapy; and we will be both expanding our involvement with NIH and keeping our treatment at UNC for now.
And that’s the end of this chapter.
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