Thursday we had two appointments. The first was with Dr. Williams, the neurosurgeon. We had been concerned about how the incision was healing. Dr. Williams asked us to get a CAT scan and bring it to him. First they said come at 4:30, then they said he has surgery, come at 11:30. Then they said morning OR was running late, go to lunch. When we saw him in the MGH cafeteria, we knew he’d be in his office soon, so we rushed back. These guys don’t get much time to take a breath.
He said to Orion, “What’s your name?””What’s today’s date?””What’s the difference between a boson and a fermion?” We all laughed that he’d done his research so he could ask Orion a physics question. Orion did fine on all.
The good news is that the incision is healing fine. The ventricles show no build up of fluid. When I asked about the short-term memory and concentration issues Orion’s been having, he was unconcerned. He expects most to clear up in the next couple months. But I did think he tried to tell us that Orion was alive and had a treatable cancer and you can’t have everything.
Since we had 3 hours until our next appointment, I conducted a forced march of the Freedom Trail with readings at each stop. I love the Freedom Trail, but it was very cold, so after an hour we stopped for warm beverages and then headed back to the hospital.
The next appointment was with Dr MacDonald, pediatric radiologist. We thought we’d be talking to one doctor, but no, she brought in 2 members of her team and invited the neuro-oncologist Dr. Hochberg. Remember this is a teaching hospital. They have presented Orion’s case before 2 neurological boards and a conference. They sent his data to a pediatric neuro-oncologist in NYC and they want us to go see him. They talked to us about the options of chemo and radiology, and radiology alone. They recommend the former because it allows lower levels of radiation which they think means lower risk of cognitive damage now, and lower risk in 20 years of cognitive decline or other side-effects of radiation. It’s not unexpected to have “reduced processing speed” after radiation treatment. It certainly pulls at my heartstrings to have Dr. H suggest banking sperm.
Dr. M walked us through viewing the MRI images so we could see the tumor. She described how a template is made so that the radiation is directed in exactly the right shape. We had a tour of the room where the treatment will be done and saw the accelerator. Very cool. More to come from Steve.
Next is putting this all on a calendar: trip to NYC, another MRI, 3 rounds of chemo, more scans, 5 weeks of radiation. And there are still blood tests and occupational therapy in W. Mass.
We ended our day with a lovely dinner at La La Rokh. Thanks for the suggestion, Susan.
carboplatin/etoposide chemotherapy and irradiation is the bottom line recommendation at this point.
ReplyDeleteI learned trick when I was in treatment. I could practice denial all day long and still deal with the reality and logistics. Split brain. Good skill to learn. Like having a lovely walk on the Freedom Trail between meetings with neurologists and surgeon. Wonderful family.
ReplyDeleteLinda