What a difference a second opinion makes! It took a little while, because we were trying to arrange for a consultation with Children’s Hospital of Philadelphia from a distance. Since a physical exam with Phenon yields exactly NO information, we didn’t want to take any more leave time and make the day-trip if we didn’t have to. I was hoping to arrange for them to just look at her PET/CT scans and tell us what treatment plan they would recommend. Turns out the health care system is profoundly inflexible (gasp from shock!). I knew insurance wouldn’t cover the visit if the doctor didn’t physically meet Phenon, so we were hoping to just pay out of pocket for a consultation. But there isn’t even an internal hospital billing mechanism for a doctor to do a consultation without actually meeting with the patient. This was frustrating, time-consuming to discover, and annoying. Shana urged us to let this go, and do our second opinion with Dr. Young Kwok at University of Maryland Medical Center in Baltimore. She told us that he has lots of pediatric experience, and is talented and trustworthy and has come from a different training philosophy than Dr. Dritschilo, so it would be worth getting his perspective.
First a slight aside – our friend Chandra dubbed Dr. Dritschilo “Dr. Mustache.” Our friend Lisa dubbed him “Supermario.” When Dr. Kwok’s resident asked the name of the first opinion doctor, those were the only two names I could remember! I had to text Tim and ask him to text me Dr. Mustache’s real name! So embarrassing!
Anyway, go visit Dr. Kwok we did. This is him (current picture, as far as I can tell). Whereas Supermario was fairly close-lipped and “not the world’s greatest communicator,” Dr. Kwok talked and talked and talked and talked. He talked about the unlikely success of a career in music and lectured Phenon for a LONG time about alternate career options. He also discussed the importance of the specifics in taking care of her health and breasts in her 20′s, then how it would be different in her 30′s, and then how it would be different in her 40′s, and then how it would be different in her 50′s. Our 1 hour appointment took 2-1/2 hours – and not because of hospital math or a long time in the waiting room. Nonetheless, he answered all of our questions, and was very familiar with the research. And his treatment plan recommendation was EXACTLY THE SAME as the one proposed by Dr. Mustache. Shana strongly concurred with both recommendations, and feels that the plan is sound. The plan is to do low-dose radiation (21 Gray or 21Gy) to the full original affected area (neck, clavicle, right lung), and slightly higher dose (24Gy) to the remaining mass. Dr. Mustache was very squirrely about specifics with us, but got very specific on the phone with Shana – thus, while he said to us that he could go as high as 36Gy, he told Shana that he would not go higher than 24Gy. This is really important, since 30Gy causes spine damage and would likely cause her spine to stop growing. Since Phenon is, ahem, somewhat smaller than her friends:
Phenon with good friends. Phenon is the oldest. Phenon's friends are not unusually gigantic!
Growth, therefore, is actually really important. In the end, everyone agrees, and that makes me feel better. But the Baltimore doctor did earn the nickname “Dr. Talk” from us.
Given that both radiation oncologists left a little bit to be desired in the bedside manner department, how did we then pick which place to go? It was EASY, actually. Although it is only 11 miles from our house to Dr. Mustache’s office, it took a full 50 minutes in what I would consider “moderate” city traffic. It is 39 miles from our house to Dr. Talk’s office, but it only took us 42 minutes in “typical” traffic on that route.
Also, Georgetown’s radiation department is in a dank, depressing basement area that is clearly designed for adults. They treated Phenon like an overly needy adult. They were shocked by her resistance to the painful tattoos. Since our last post and during follow-up questions, they told us that they see approximately 8 pediatric oncology patients per year. They were friendly, but clearly not so awesome with kids.
At Baltimore, the radiation department waiting room is in an atrium with palm trees and lots of natural light. See? They haven’t done tattoos in 15 years – they just use permanent
radiation waiting room
marker, which they refresh as needed. Why? Because they don’t see any need to cause a kid pain unnecessarily. They see 3-4 pediatric patients per month. When it was time for her CT/simulation of radiation, they walked me right into the room with Phenon and pointed me to the parent chair. (This is a major contrast with our experience at Georgetown.) They also have a program called “Magic Castle” in which they give each pediatric patient a big present when they finish radiation, so they have something to look forward to as things get tough. They rejected Phenon’s list – the stuff on it wasn’t expensive enough. I know all this stuff is trivial compared to the competence of the doctors and the reputation of the facility, but given the equality of those two things, this place was far better with kids, was more physically pleasant, and Phenon was delighted with them. She said she was looking forward to going there for several weeks. So, like I said, it was an easy decision.
Phenon begins radiation this coming Monday, March 5th. The long-term side effects are bad, but they will be the same no matter where we go. In the meantime, Phenon enjoyed her trip to Dallas with Chamber Choir. Much to my tremendous relief, she had no incidents going through security from the D.C. end. In Texas, they apparently gave her a bit of a hard time, patting down her hat pretty extensively, and painting her hands with explosive detector chemicals. But, the most important thing was that they did not force her to take her hat/wig off in front of the security line, and no private hairless security scan was deemed necessary. Phew! And now we are very happy to have her back home with us!
Since her return, Phenon has been very focused on finalizing her wish trip fantasy for Make-a-Wish. They come to interview us tomorrow (Sunday), and Phenon could not be more excited. Since finding out that she cannot bring friends along for her wish (her longest-standing wish was to bring her 10 closest friends to the beach with us for a week for the fun and as a thank you for the unbelievable level of support they have provided), she has struggled to come up with a vacation magical enough to keep a hold on her. She has narrowed it down to someplace warm and tropical (sorry London and Ireland, which were high on MY list), and possibly a cruise. Last night she found a cruise that has lots of musical theater on board, and makes day trips to various islands in the Bahamas. She has also considered a cruise from Canada to Hawaii with day trips there. We’ll keep you posted, and keep those wonderful vacation ideas coming! (Though you should be aware that anything that has a flavor of being immersed in a culture that does not speak English and having “adventures” seems to sound like too much work for her right now…)
In other news, our friend Beth posted an article that I found really compelling. The author talks about being a cancer “veteran,” and the emotional complications that come with ending treatment. I thought it was interesting that Phenon expressed some of these thoughts almost immediately upon finishing chemo – particularly the ones about missing the nurses and doctors at Children’s Hospital, since she saw them more days than not for three months. How will we find out how nurse Stephanie’s wedding went? Is nurse Jen (from Canada) terribly disappointed in our American winter this year? When will we get to see Shana and Payal and nurse Molly again? Some of the other concerns described in the article seem more adult and long-term focused and I don’t think they apply to Phenon. But I think they do apply to, for example, the parents of a child ending cancer treatment. I just thought it was interesting food for thought, and I’m grateful Beth posted it.
Beth has also contributed to our cancer experience by her celebration of the cancer presents she received during her own treatment for (non-Hodgkins) lymphoma over the past (too many) months. And we wanted to brag for a minute, because we just received one of the best cancer presents EVER – Alison, Gillian, and their girl scout daughters went together and brought us a box containing littler boxes inside. They gave us one box each of every kind of girl scout cookie that exists. Now, how thoughtful is that?!? A short-lived present, but a truly grand gesture for which we are incredibly grateful! Oh, how we love Girl Scouts!
Finally, we had interesting medical news from Tim last night – he has mono! He denies kissing anyone outside this family, at least in recent months. But, if anyone has any information about the exciting activities he’s been engaging in on his nights out with David, feel free to let us know. In all seriousness, though, we are looking forward to getting input from Phenon’s docs on Monday about whether we need to do anything special to protect her as radiation begins. Always a surprising adventure! Have a nice weekend, everyone!