Dateline: Raleigh
It has been over 3 months since anything has been written here. 3 months of relative peace, joy and personal growth along the normal paths of teens and preteens. Evan has been struggling through the challenges of 6th grade being asked to become more and more self accountable. The growth demanded is a challenge for most 6th grade boys, which was made more difficult for Evan because fighting for his life over the past 2 years. All said He has been growing up before our eyes in all aspects. Medically some tighter areas around surgical scars were gently freed with massage to float over the underlying muscles and there are no new growths under or on his skin.
Evan went for a regularly scheduled follow up CT scan on the first Wednesday in April, and the next day at 8:00 AM our world stopped! Two new masses had shown up on the CT scan, inside his ribcage, along with a 3rd troubling area in his right upper arm. By 4 pm that same day, a bonescan (radioactive phosphate uptake rates in bony structures) for the arm was done. It had been a wild goose chase, a red herring that just unnecessarily ratcheted up the pressure; an overeager radiology resident hoping to cut his teeth on a pediatric melanoma case had seen something and had jumped the gun, perhaps not wanting to be the one who missed something. Idiot!!! Don’t project your worst fears onto someone else.
We had been transported in time to November 2007; here we were back at square one. What is this thing? How do we kill it before it kills Evan? What are the options? What do we know? Who can we turn to and what can they bring to the table?
It turns out we have a lot of information at this point. Eleven years of Evan’s medical history, relevant details from multiple pathology, radiology and surgical reports, little scraps of interviews woven into a detailed tapestry of knowledge. But the picture is missing one critical element: How do we live with or remove/kill this thing? The medical team is set, each member with a different viewpoint, each member with Evan’s best interest at heart, each member humble and respectful of the rest of the team, each member the best we could hope to locate. Chemotherapy treatment with an experimental cocktail was proffered as option C, Surgical resection of the masses was option S; and the team presented either option C then option S or option S then option C. This told us a great deal more. Evan’s team does not have confidence in either method alone to resolve this problem. This is both troubling and comforting that they did not try and hide the information from us.
Technically the two masses inside the chest cavity are not life threatening at this time. One about the size of a large thumb is in contact with Evan’s left kidney, near his spleen and in contact with the rib from which it apparently originated. The other is about 2 inches away on the next rib up and is in contact with the tissue sack that lines the chest next to his left lung.
Option S involves removing the masses, the layer of protective covering over the left kidney, a piece of rib, the piece of pleura and reconnecting everything with a goretex mesh. Future reconstruction would be possible when confirmation of no additional growths is confirmed, in the meantime, Evan would be required to wear a kidney protecting vest at all times in public.
Option C involves Temsirolimus & Valproic Acid (Depakote). Temsirolimus is a solid tumor fighting drug that attacks the blood supply for the mass. Valproic Acid, a mood flattening anti-epileptic drug, is a synergistic force multiplier, in that it makes the Temsirolimus more effective. How the pharmaceutical company came across this combination must be a good story? And while it has proved successful in adults, its use in children has never been studied. What is known is that the predominant side effect of the multiplying effect is extensive mouth sores and general irritability.
Forgive us for not jumping for joy over the options. Major invasive and life altering surgery (okay everything about Evan is life altering) or an unproven chemotherapy with an almost certainty of painful mouth sores and an overly irritable 11 year old (If his teachers thought he was a barrel of laughs the last 3 months, they could be in for a rude awakening for the last 6 weeks of this year)
Evan now leads his medical team conferences and is both the primary recipient of information and the leading questioner. Like any good leader, he has his meetings before the meetings to get his facts straight, take a look at the angles likely to be presented and develops a positive encouraging demeanor. We reach decisions as a family team, but where parents ruled supreme in the past, Evan now has an active role in the medical care decisions.
His decision: Option C first, and we’ll wait and see on Option S. We let the team know tomorrow.
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