A Meeting with the Radiologist

Today JR met with his radiologist, Dr. Susan Wolden, who is young and very nice. She explained what she would be doing to JR and had him fitted for this crazy mask that he'll be wearing for his treatments. She referred to it as his spiderman mask which is pretty accurate. This keeps his head positioned during his radiation treatments. He'll be starting next Wed (Sept 5th) and goes for 33 treatments, so 5 days/week for as long as it takes to get 33 treatments (sometimes no holiday, etc.). He'll also be getting his chemothrapy at the same time. Dr. Wolden spelled out some of the potential side effects but it doesn't seem likely that JR will really feel anything but a little tired and possibly not even that. He'll probably go to school for the first few days to see who's in his class and get to know Ms. Brown-Holub. We'll see if the teacher/principal agrees! Will let you know what happens next.

JR meets Dr. Dunkel

On Wednesday (Aug. 22), JR, Addie and I had a trip into Manhattan to meet JR's new doctor, Dr. Ira Dunkel of Memorial Sloan-Kettering (MSKCC) who is a pediatric oncologist. We liked the Pediatric Day Hospital that has an extensive playroom with all the newest gadgets, XBox, computers, etc. Dr. Dunkel is a soft-spoken very nice man who JR liked right away. He has impressive credentials and was highly recommended by JR's neurosurgeon, Dr. Mark Souweidane of Cornell/NYPresb. Dr. Dunkel examined JR and was very happy with his present health. He spoke with me about his ongoing treatment and I was encouraged by his plan. JR will have radiation therapy for 5 days/week for six weeks starting probably Sept. 3. His radiologist, Dr. Susan Waldon, will set him up next week with a trial run and start the real mccoy the following week. He will also receive chemotherapy during his radiation. The good news is that he will be taking temozolomide orally, so no need to have an introvenus line or port during radiation. He'll take the temozolomide everyday during his radiation then everything stops for 4 weeks, then another round of oral temozolomide for 28 days. Of course, there may be changes/adjustments that arise. Dr. Dunkel explained the dangers of infection during his treatment, so I want to let everyone know that we will be very strict about visitors (please stay away if even a sniffle) during his treatment as he'll be very susceptable as his treatment continues. The doctor also thinks that JR will not be particularly sick nor does he expect him to lose his hair which is nice for JR. Of course the most important thing is that he comes through with a clean bill of health!
For the moment, the Schoen family is happy and normal! It feels great! Addie starts school next Thursday, we haven't decided what our plan is for JR's school but the district will send a tutor for him and we feel that it's probably best to keep him away from the school germs - we all know how that goes. He can do all normal things and we plan on having a fun few days before school and treatment start.
After our meeting, we took a stroll around the neighborhood. First stop was JR's favorite pizza shop, Famiglia on 1st Avenue and 69th (?) St. We have become regulars there. Second stop was Dylan's Candy Bar on 60th and 3rd Avenue. Miraculously, we ran into our friends the Duffy's at Dylans and we all enjoyed some sweet treats.
We keep on receiving amazing dinners (thank you for last night, Rasors), treats and fun gifts for the kids. We look forward to Grammie Leslie's visit this weekend and the return of our neighbors, the Servas family and the Leunis gang. JR even had a playdate with his friend Holm yesterday and had a lot of giggles.
I don't want these postings to sound like Christmas mailings but wanted to let people know that we are doing well and we have a plan of attack!

JR is doing great after his surgery

We have been home from the hospital for over a week and JR has recovered very well from his surgery. In fact, if you didn't know he had surgery, you wouldn't be able to tell. We went swimming over at our friend's house, the Quinns, and JR went jumping off the diving board. As a result, his hair came down over his scar and it covered the whole thing. He looks as handsome as ever. Addie has had fun receiving gifts and helping her big brother eat some of the many treats that have been sent our way. We have had so much great food and gifts and help with everything that I haven't had to go to the store for anything. We went bowling today on this rainy Tuesday. The kids tied for their first game, Addie won the second game and JR won the third (whew).
Tomorrow we meet JR's oncologist at Memorial Sloan-Kettering in Manhattan and get our plan of action together. All we know at the moment is that JR will make it through all this. We only have room for positive thoughts!