Monday, June 1, 2009

oh, yeah: and about the cancer...

Thank you so much for all of your kind words and calls and e-mails and prayers and Reuben walking (what I keep asking locals who offer help: take R on walks so he can feel happy and I can do more unpacking). I have felt very embraced, which is worth a whole heckuvalot in this sort of a mess.

Reuben did quite well with his first cycle of chemotherapy. He felt ill during the administration and had one vomit-y day the Tuesday after. Other than that, he's been a bit fussy, but I blame the three teeth he cut during the last week and the constantly interrupted schedule he keeps! We're starting his next cycle on Friday, and am happy to report that we will be able to do it much closer to home, at the Penn State Hershey Children's Hospital. We've used the ER there several times, and Marian has some of her specialists at Hershey. Reuben and I saw one of the oncologists there (whom we had met during Marian's brief hospitalization there in September) on Tuesday this week, and I have felt so much lighter since. Hershey is in that cozy hospital spot of being academic enough to have really smart people and excellent facilities and great programs like the Four Diamonds Fund, but small enough to give patients TLC. I haven't felt neglected at CHOP and I so love the care team there--but the following, my experience this week at Hershey, would never happen:

Within 2 minutes of registering (with a warm receptionist who actually looks me in the eye when we talk and walks me to the appropriate waiting room--"Is this your first time? Well, then, let me show you."-- pointing out where I should put my paperwork), a social worker finds me in the waiting room and we chat like old friends (he stays with me for the rest of the hour I'm there, only leaving to bring me different phone numbers and folders of information as I ask about them). A cheerful nurse comes out and asks about Reuben's port and offers EMLA (lidocaine) cream to get ready for his blood test. The CMA is patient and kind while she takes R's vitals. The doctor remembers me and Marian and details from our 2-day hospital stay 8 months ago, and makes sure the social worker brings me photos of the oncology care team. Reuben gets his port accessed in a private room and we are helped by a Child Life specialist (he screams the whole time, but it's the pinning down and the careful washing of his site, not the poking). When I get home, there is already a message on my machine from the doctor about R's blood counts, and I receive follow up calls that night from the fellow on call, making sure I got the message to stop the nightly shots that boost his white cell production because they're already 40 (whatever those units are). Then I get another phone call in the morning from a nurse with the same message. Then a psychologist calls me himself a day later about meeting with Audrey next time we come.

Plus, if you're a good little patient, you can go to the chocolate factory on your way home (last time we had an appointment, I let Marian go on the ride three times in a row. She'd been very, very good).

When my dad tried to have both a local oncologist and one in the nearest big-city cancer center, there was a battle of egos and cross/ornery receptionists every time. But for Reuben, we get the best of both worlds. Our doctors suggested the arrangement themselves, and have been so, so kind.

I have noticed that our best and smartest doctors are the humblest and kindest, too.
A lesson, Valerie...


sallyavena said...

We love the chocolate factory. I just find the whole concept behind the town of Hershy fascinating and uplifting in a way. Good still exists and good things happen because of it.
"Roo" (the kids got a kick out of his nickname) is quite the cutie and the trooper!

Braden said...

It makes my heart soar to know that in these difficult times you are surrounded by a multitude of kind caring people and so many small blessings. I think that validates the theology you explained a few posts ago. Love the lesson you draw from the experience with the docs.

sjnagel said...

I get more excited seeing a new post from "purple petunia" than any other blog I subscribe to. Thank you for taking the time.

I remember being a little weirded out by the chocolate factory. But maybe that's because I'm an lame grown-up. I'm sure my kids loved it.

Meg said...

We are big fans of the chocolate factory as well. I am glad that you are being taken care of in all aspects, that makes my heart smile.