Prep Day

Orion and I arrived at MGH before 7am and reported to the Ellison 2 waiting room. The area soon filled with patients preparing for various outpatient procedures. Orion answered the usual questions, changed to a hospital gown, and got an IV. By 8 he headed off to have a port implanted. (For those who don’t know, this is how the chemo will be administered, blood taken, etc., without sticking him repeatedly with an IV.)

While he was gone, I sent a note to Dr. MacDonald asking lots of questions about next week. Dr. Allen had been very clear both about what the chemo protocol should be, and that pediatrics should be in charge. I wanted to know if MGH was on-board. Immediately I heard back that everything was set and we would see her and Dr. Ebb, the pediatric neuro-oncologist, later today. Also, as soon as Orion recovered from the port procedure, we should head off to get a MRI.

At 9:30 I was taken to see Orion in the intermediate care recovery area consuming a breakfast of cereal, muffin, juice, and milk. He said the procedure was no big deal. I was disappointed that I can’t see the port. It’s covered with a bandage until Sunday. He got a credit card like card that identifies his port type. I hadn’t realized that this tells the MRI folks that it’s a port that is safe to be MRI’d and they can use the port to insert the contrast dye in the future. As I told Orion, he’s taken the first step toward becoming a borg.

Once he was rested, Orion dressed and we walked 200 feet down the hall to the MRI waiting room. There he changed again, and headed in for 1.5 hours of spinal MRI. The doctors didn’t think the first MRI was clear enough. They want to be positive whether there are signs of tumor on the spine. Even if they think there are not (and that’s their expectation), they will take scans after chemo. If they see change, that will tell them that there was tumor and that area should be radiated.

While he was gone, Dr. MacDonald’s office called again and told us to go for a baseline hearing test at 2. (After each round of chemo, they will recheck hearing, and if it’s being impacted, they will change drugs.) So we had lunch and then walked down the street to Mass Eye and Ear. The hearing test was quick and easy and the technician printed up the results for us to take to Dr. MacDonald.

Now off to the Proton Therapy Center. Are you getting tired? We are! Dr. MacDonald told us that the MGH doctors agreed with Dr. Allen’s advice and Orion would be treated by pediatrics. Here’s what the big deal was. At MGH, pediatrics ends at 18. Even though it makes sense for pediatrics to treat Orion (since they see 15 such cases per year and adult neuro sees one), pediatric administration didn’t want to give up one of their beds to an adult in case they needed it for a child. Dr. Allen’s stature added enough weight that permission was granted. Orion will be on Ellison 18, the floor for older kids…6 and up.

Dr. MacDonald led us to the Yawkey building to meet Dr. Ebb and his staff. Like every doctor we’ve met so far, he acted as if he had all the time in the world for us and Orion was the most interesting/important case he had. He walked us through the entire chemo protocol (2 different sets of chemicals in alternating rounds), plus all the work they do to monitor and replenish white blood cells, red blood cells, and platelets. They also check vision, hearing, cognition, and treat nausea with each round. I find myself thinking of Star Trek IV: McCOY: We're dealing with medievalism here! ...Chemotherapy! Don’t leave him in the hands of twentieth century medicine.

Now it’s 5pm and we’re all set. Orion will be admitted for the first round of chemo mid-day Tuesday. We fortify ourselves with drinks – coffee for me, a strawberry smoothie for Orion – and head out into rush hour traffic going west. Amazingly our timing is perfect and we swoop by the Springfield train station just as Nate and Carrie arrive, up from Baltimore. Seeing them immediately raises Orion’s spirits. We arrive home to a comfort meal of roasted chicken that Steve's prepared, give a rundown of the day, and off to bed.