Tennessee has been inundated with rain, and Sunday was no exception. Aidan was on a mission from his school back in Connecticut to take his class pet/take-home assignment on an adventure and then report back on it. We had no choice but to take “Elvis” the frog (stuffed animal, not live or, worse, soaked in formaldehyde) to Graceland.
The sky was flat gray with no inclination to give way to the sun. Graceland is a short drive from St. Jude and there is plenty of signage to indicate that you are close to your destination. This is a major tourist attraction for the area, and everything nearby is Elvis-related, adorned with the famous pompadour and snarled lip.
The entrance to the attraction is across the street from the mansion itself, which is a surprisingly modest structure that is smaller than the standard McMansion. Tickets, however, are sold at the center of a vending area that contains two restaurants and several additional attractions, such as the car museum and Elvis’s two private jets.
Small buses similar to the St. Jude shuttles drive literally across the street with small groups armed with an automated audio tour of Graceland itself. The tour is surprisingly well run, especially given the difficulties of pouring bodies through the narrow halls and cramped spaces of the mansion.
The house was built in the 1930s, with modestly proportioned rooms and a surprisingly small footprint. Graceland is remarkable for the lavish and fabulous interior decorating, not wide-open spaces. If one were viewing it as a potential home buyer, the kitchen is quaint and terribly outdated, though in its day the gold-specked formica equated to thick granite today.
Aidan’s assignment included a pictoral series of Elvis (the frog) taking in the sights at Graceland. As Aidan put it, Elvis “could go where we couldn’t” because nobody flinched at the stuffed frog perched on the Cadillac length white couch in the living room or lounging on the King’s blue suede bed in his private jet.
Even for those who are not passionate about Elvis, the tour is worthwhile, if a bit pricey for those who are not in the St. Jude fold (the tour is free for St. Jude patients and family; it is already free for kids under 7 and they even offer an activity book to all the children).
We also discovered that, like Colin, Elvis was a tractor fan. His auto collection features a big John Deere tractor with an accompanying video. When Colin is up to it, we may have to make a return trip to Graceland, if just to hang out next to the tractor display.
Aidan was suitably impressed by the tour and enjoyed the extras (the cars and planes) as well as the diner that offered passable down-home Southern cooking. Once refueled, he began jumping around to the music and declared that he liked Elvis (earlier rockabilly).
Colin did not have as much fun over the weekend, receiving three chemo drugs over the two days. Saturday, he got vincristine followed by cisplatin. On Sunday, he got cyclophosphamide. The cisplatin is the most evil of the drugs, causing awful nausea and vomiting that we struggled to keep at bay with anti-emetics.
Sunday was easier, though he was pooped and certainly green around the gills. The methotrexate, which usually has cleared the system reasonably a week out from the initial administration, still lingered in his system over the weekend. The suspected cause of this is the pseudomeningocele, which potentially represents a pocket for the drug to hide in.
Chemo also brings on terrible headaches for Colin, necessitating frequent morphine. We think this may be caused by increased intracranial pressure from the hyperhydration to protect his organs and flush his system of the chemo drugs.
Monday, though much improved, Colin remained lethargic and nauseated. It was unfortunate timing for his first meeting with Dr. Merchant, the radiation oncologist. Although we have heard much about him, this was our first consultation and thus our first substantive discussion with anybody on the subject of radiation.
The protocol calls for proton radiation with a margin of 5 mm, which is half of the current standard. Although this reduces the irradiated area and, thus, the area where invisible cancer cells might be lurking, it also potentially reduces the healthy areas of the brain that are affected. However, Dr. Merchant is quite comfortable with this margin and feels it is very appropriate for children with ependymoma. In fact, the next COG trial will include radiation with a 5 mm margin.
Our opportunity to speak with Dr. Merchant also shed light on the different perspectives of the various flavors of oncologists. His view of chemotherapy is that, if it does not consume too much time, it does not reduce the efficacy of the radiation and does not allow excessive regrowth of the tumor. He does not see any value to delaying radiation because of the age of the patient and sees the excessive focus on the age of three as senseless (because of the new radiation techniques that limit the field).
For Dr. Gajjar’s part, he has explained to us that he feels chemotherapy plays a particular role for children who are at high risk for recurrence or metastasis despite standard treatment. Dr. Merchant lauds the 5-year event free survival rate in the range of 70%+ as a great success, but Dr. Gajjar wants to capture more children and get closer to 100%.
Neither is strictly right or wrong, but they each speak from a different perspective. This happens within institutions and between them. We have certainly seen different views presented to us, and it is frustratingly important to understand these perspectives in order to better contextualize the advice being provided.
Our own interpretation is constantly evolving based on the information that we receive. The process never ends!
The oncologists are all back from the meeting where they convene to discuss everything, it seems, but the work they are actually doing at their home institutions. Unsurprisingly at a Children’s Oncology Group (COG) meeting, the focus is on COG-related work, yet the professional good manners of not discussing one’s own agenda serve to further sequester the work and reduce the useful transmission of information.
Saying this appears to cast oncologists in a poor light, but we don’t mean to imply that this is part of a deliberate effort or even a form of blithe neglect. However, we are coming to a better understanding of one reason why we as parents play such a critical role in Colin’s care.
Even the doctors do not know everything. Dr. Finlay told me, “Don’t try to be his doctor.” Indeed, we are in no position to do that, and we have plenty of doctors to assume that role. But we serve as the aggregators of information and the decision makers. We need to be satisfied that the advice we receive is fully informed.
It is difficult for parents to assume this role, especially because nobody tells you that the job is vacant. It seems like the kind of thing that patients/families typically trust that doctors will do, but it is beyond the scope of their job.
Without the doctors, we would be at a complete loss as to how to help Colin. By the same token, we make their job easier and improve their chance of success by embracing our role as well.