Day 20 Already

It's been a little while since we posted anything, mostly because there's very little change in JR and he's been handling things beautifully. Doctors, technicians, receptionists, etc. are constantly commenting on how well he's doing. A little tummy stuff once in a while but we have medication to combat nausea and it works like a dream. The problem we have is holding him back - his energy level hasn't dropped at all as evidenced by some massive neighborhood-wide "manhunt" games that require hours of running (and screaming??) and great weather activities that need to be done while they can. After several hours in a car and at doctor's appointments, he just wants to play outside. I'm a believer in outdoor exercise as a cure for most ailments so we'll see if I'm correct here. So far, blood counts are normal and he has all of his hair, so all we're seeing is a little lack of appetite and some fatigue, something only his parents would probably notice. We're almost at the half-way point for his chemo (tonight it's 20/42) and for radiation we're at 14 out of 33 for this round. He's truly remarkable.
Our wonderful driver has been such a comfort and can beat any traffic anywhere. Like me, he likes to find alternate routes so I like to pay attention to learn new ways to get in and out of Manhattan and bypass Merritt and 95 traffic. Bravo to J.P. We're never late for an appointment and when we're finished, we have a polite and sweet person there waiting to take us home. We're very blessed.
JR had his homebound tutor start today. Miss Tobin is a Kindergarten teacher at Holmes School (JR's school) who has an outstanding reputation amongst us parents. She'll be here each day from 3:20 to 4:20. Very thankful to have her!! Don't really understand the home school thing - I was hopeless.
We had a busy week with extra appointments last week and therefore extra meals organized by my incredible neighbor. Thanks again to Fitzsimmons, Keevers, Van de Graafs, Pasierbs, Guttusos, Hurleys and Donnellys to name a few. We are storing up for the winter in style.
Jim and I finally started back at yoga which for us was a milestone. Our yoga group has taken us in as family and has been unbelievably generous to us so that helps bring peace within.
All is well and we thank everyone for their continued positive thoughts.

Still Doing Great!

We're now 8 days into JR's treatment and he's still as happy and strong as ever. We've seen a wonderful change in JR - he's been sweeter - that's the only way to describe it. Adeline's been the unsung hero - just going with it and no complaints. She's in awe of her big brother!
We've been enjoying our guest status with the car and driver. What a difference it makes to be driven in and out of NY. You don't know how exhausting it is until you stop. We are so grateful for that.
We're also so grateful for all of our wonderful neighbors and other friends who keep sending in all this crazy-good food. Thanks to the Russells, the Brooks, the Barlows and, once again, the Servas family for keeping us well-fed (and getting our extra winter pounds on early!!).
I don't have much else to say except that things are really going great. Anyone who sees JR can't believe he's going through radiation and chemo - he seems just like his old self. He typically has his radiation around 10:30 a.m. and we give him his anti-nausea and chemo before bed. He's had a few extra appointments to get an inhaler for this antibiotic that helps prevent a special type of pneumonia to which he's particularly susceptible. We also have weekly meetings with the oncologist (that's Wednesdays when he gets his finger stick and blood counts which BTW are great) and the radiologist (that's Thursdays so we'll see her today).
School work is not exactly a breeze but we've been trying to keep up (I don't see a future as a "home schooling mom"). He's been as cooperative as can be expected for a typical 3rd grade boy.
Today's a no school day so we'll all go in for his appointments and try to squeeze in a fun city event if we can. Adeline is excited to go in with us. Thanks again to all for such overwhelming love and support.

Day 2 of Treatments

JR has completed his second day of treatments which involve daily radiation at Sloan Kettering and chemotherapy each night at bedtime. He's as normal and happy as ever and even admits that he misses being at school with his friends. We plan on waiting for a while to consider sending him back to school as we have no idea how the cumulative treatment will effect him, but so far, it's been very smooth sailing and his radiologist is very pleased with the set up and how JR is reacting to everything. He's been totally calm during the radiation treatments which involve wearing this tight-fitting scary mask over his face (to position his head exactly) and lying completely still while the process takes place. From now on, the radiation should only take about 5 minutes and he is excited to bring his new CD's to play his favorite music while he's in the room. There is also an intercom where we can talk to him and tell him he's doing great. He truly is my little hero. As mentioned before, he has oral chemo so he is able to just take a pill before he goes to bed and it hasn't given him any noticeable side-effects as of today.
We've been commuting into Manhattan each day which we've used to take advantage of some of the things that NY has to offer. We've had pizza every day for lunch at the same place (Famiglia for those of you who have joined us!) and lots of walks around, etc. (A second trip to Dylan's Candy Bar happened today along with many Webkinz stores). Our neighbor, Kimberly, was our guest passenger today and our other neighbor Patricia will ride shotgun tomorrow. It's fun for JR to have company in the back of the car. A major commuting development was dropped into my lap though Uncle Ron the other day. His best friend has kindly donated his personal car service to us for JR's treatments. It's truly unbelievable how many people have stepped up to help us and it is truly humbling. I am truly blessed and in awe. If you think for one minute that this world is not filled with absolutely wonderful people, think again. I'll set you straight!! Our family and friends and many acquaintances have shown their true colors.
Servas family, Hone Family and Eglebergs - we've eaten very well this week and thanks again.
We got a pile of schoolwork to do from JR's teacher today which is great since we really want him to stay on top of things. We'll be getting a home tutor in about 2 weeks so let's keep our fingers crossed that he'll stay in such great health.
The gifts and well-wishes and prayers keep pouring in. Thanks for putting in a good word with the big guy. It's working.

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!