Feelin' Pretty Good!

It's been over a month since my last post and I apologize to my loyal readers who have mentioned that they've checked the blog and haven't seen anything new. We have had a few significant milestones but not really that much to report.
On November 14th, JR had his first MRI since his post-op MRI (August) and he has endured the majority of his first of 10 rounds of chemo. He continues to cause the reaction of "shock and awe" as people who know what he's been through see him and notice how well he's doing. He's still doing an amazing job keeping his chin up and not letting this get to him.
The best news we can hear is that there are no signs of anything new on his MRI. That was the news we heard on the 14th. He was totally calm during the MRI process, no sedatives, no music, he just hung out, stayed still and let it happen. I've heard many a horror story about how terrible the process is but he took it in stride (not the same story with the IV line but we'll gloss over that for now...!). After we finished, Jim told him he could have anything he wanted. He chose a hamster that we bought the following weekend when my brother and his wife visited from Colorado. Addie got one, too, for being such a good sister :). Their names are Dusty and Cloudy and they are Blueberry Dwarf hamsters.
We have another MRI coming up on Jan. 3rd, so we hope to report the same news then. Hopefully J.R. won't figure out that when Jim says he can have anything he wants, he pretty much means carte blanche. We could get in some real trouble!!
The five days following the MRI were the first 5 days of the 5 days on, 23 days off chemo cycle. He had 5 days on of some strong stuff and it made him feel pretty off. We had heard that day 10 to 14 of the cycle would probably be his low days but he was pretty good by day 7 and was able to eat a decent amount of turkey (a good food for him anyway!) on Thanksgiving at Aunt Beth's and Uncle T.K.'s. The best part of Thanksgiving for J.R. was having some time with his "big" cousins. We've now been off for 13 days and he feels pretty good but just incredibly tired. He's been trying his hardest to get some extra rest and to get some fun and exercise in between. We had our first snow today and it was perfect sledding for us here on Hoyt Court. I'm a strong believer in fresh air and exercise and sledding down the street is one of our top favorite things to do.
Blood counts have continued to be great so J.R. has been trying his best to stay in school full time. Some days he's just a little beat up and needs to take a breather. His teacher has been very pleased with how he manages to keep up with his schoolwork. We still have our wonderful tutor part time and she is truly a blessing!!
So that's it for now! We can only hope that this is as bad as it gets and that J.R. will keep handling things so bravely. Both of my children make me so proud it's really embarrassing!!! We really don't know much about what to expect as each person who goes through something like this reacts uniquely. We know that on the chemo-taking spectrum, JR is on the "handles it well" side of the scale and we hope that the 23 days off will give him sufficient time to recuperate before starting up again. I feel as though I'm always thinking that I don't know what the future holds but that is true for all of us. All we can do is expect it to be great and somehow it always is! Happy Holidays to all if I don't get back for a while! Your are all in our thoughts and prayers! XOXOXXO

We're Taking a Break and Getting Back to "Normal"

It's been a while since the last posting, mostly because we've not had a ton of things to report. Things are going great! JR's radiation treatments ended on October 19th and we celebrated with a trip to Texas BBQ on First Avenue, Webkinz, etc. The staff at Radiation Oncology were truly terrific and we miss them! The following Wednesday, we had a follow-up visit with Dr. Dunkel and JR's last "finger stick" for a couple of weeks (which makes him happy to no end!!). His counts were very strong, all in the normal range which means that he has a normal ability to fight infections, etc. To me, it meant that he can go ahead and be a normal kid and feel good and take a sigh of relief. He started back at school the next day for a short day (which included a nice little celebration at school and that evening at our neighbors - thank you Kimberly). He's been going in in the morning and coming home around 12:30 over the last 4 school days and we'll gradually get him to a full day. All the kids are so well trained by his teacher as far as what needs to be done each evening that we have some catching up there, but he seems to be in the mix as far as his schoolwork goes. His tutor has been very helpful and we have a nice neighborhood girl who's in his class helping out by bringing him home stuff that he needs. Thanks Amanda!
We have scheduled JR's next MRI on Nov. 14th after which he will begin his next 10 rounds (give or take) of chemo. A round as I understand it is a 28 day cycle with 5 days on (stronger dose than before) then 23 days off. Back into the unknown but not so unknown as before. He handled his first part of the treatment so well that we all expect that he'll do just fine. I try not to pressure him into feeling one way or the other by my comments and don't want him to feel as though he's disappointing us if he doesn't feel well so I encourage him to be honest about how he feels. That being said, I still feel he'll be fine!! The only caveat I have to that is that I still am unable to make plans and I still freak out now and then. The flip side of that is that it's great to just be home and not racing around and not worrying about where we need to be next. It leaves us time for our family nights and to focus on what's really important.
We braved it down to AYC on Sunday and were able to see a bunch of friends who were happy to see both my little goblins (Addie is a girl pirate and JR is a scary devil-skeleton-ish thing). As most of you know, we had just finished camp with a lot of these families when this whole thing started so we hadn't seen many since. I was one proud mama!! Looking forward to Wednesday evening's trick-or-treating which is always a fun night for us. Will touch base again soon! Thank you to everyone who keeps my boy in their prayers.

5 Days Left!

We have mixed emotions as this week approaches. Believe it or not, we'll be sad in some respects as JR's radiation treatments end this Friday. Our routine has had its positives - we've grown attached to our driver J.P. and his great gift of conversation and cheerful prospective on things, we've experienced some wonderful people at the radiation oncology floor at Memorial Sloan-Kettering, Raymond being our senior guy there who has been so accommodating and great to chat with. He's also paid JR some great compliments without even knowing it and I know that JR will miss him and several of the other team members. I'll miss our "down" time together just hanging out doing whatever in the back of the car, sometimes just chatting or attempting to do school work or just looking at cool graffiti in the Bronx or playing hangman or reading licence plates. We have a pretty good list of licence plates at the moment but are still on the lookout for several unusual states! We all know that kids can drive you crazy but I've had this brief gift of one-on-one time with a great little guy and I am rejuvenated. You never know where rich little treasures are buried.
Enough of that - let's get to the meat of it. We have 5 radiation treatments left and only 2 more nights of chemo. After Friday, he has about a four week break (4 to 6) and he'll start a new phase of treatment which should include 10 rounds of chemo. A "round" is 5 days on and 23 days off. The 5 days on call for strong doses which we are hoping he will be able to tolerate OK. We have no idea except to say that he's got an amazingly strong "constitution" and can only hope for the best. The doctor says that the typical low point is 10 to 14 days after the first day, so we'll keep close tabs on him (like we aren't already....) and take it one day at a time. I believe he'll keep up with the weekly blood counts (the one thing that he gets upset about each week is his finger stick, poor thing) and we'll have periodic MRI's (first one should be right as he starts his next chemo round). The doctors say that the likelihood of anything showing up on this next MRI is very low, so we'll just keep up the good work. He's still doing great.
Other related news items - Make-a-Wish Foundation of CT visited us this week and we discussed a few ideas for a family trip. Seems as though they are willing to send our family on quite a nice trip, so make room in your prayers for that organization. We are again humbled.
Our tutor (Miss Tobin) has been great and is another person to whom JR has become attached. We are thinking that he might start back at school 2 weeks from tomorrow, depending on his blood counts, etc. He asked if he could have a few days off after the radiation ended so I gave him a week. I'm a sucker for a pretty face.
The "Feed the Schoens" program has been a tremendous success, drawing participants from near and far. Thank you to the Fullers, the Quinns of Stamford, the Bidells, the Knights, the Blackwells, the Jessops and the Servases to name a few. We are fat and happy. Now I know to go all out when asked to help as I've learned from my wonderful friends and neighbors. I can't say enough about how incredible people have been.
Finally, JR turned 9 last Thursday and had quite a nice birthday. Jim took a treasured day off and we went to MSKCC in the a.m. JR was treated to a surprise little party thrown by his "team" with gifts and a cake et al. We then took him to the top of the Empire State building and to the "New York Skyride" movie that's kind of a Disney-esque fly over and around NY type thing. Then home for the biggest rain storm our home has ever seen. Jim had us laughing to tears all day and we had the greatest time. Missed Addie but it was special to have just the 3 of us.
We probably won't have too much to say over the next few weeks but will post an update soon. Thanks for your concern and we feel the love!

Only 2 Weeks left of Radiation

Things started so slowly while going through this treatment; we were counting every day and it seemed like an eternity! Fast forward 4 weeks and it seems to be flying by! Each week we go to one appointment with JR's oncologist and one appointment with his radiologist (aside from the daily treatments) and we've had such great news that everything seems so matter-of-fact. We see the doctor for about 5 minutes, tell him everything's great, nothing to report, eating well, great energy level, blood counts are fine. Dr. Dunkel even accused him of being a boring patient. Had the nerve to call him superhuman. We've been giddy over it. Things already seem almost back to normal. We'll have his post-treatment MRI in mid-November and he'll start his second round of chemo then. From then on, we'll have MRI's every 2 to 3 months and we'll take it from there. It's wait and see for a long time after that (5 years). I feel well-prepared for anything anyone throws at me from this time forward. We know what he's made of.
Just when we were wasting away to nothing, in swooped a huge flock of friends bearing mountains of food, treats and assorted and wonderful gifts. I think since the last blog, we've had the Guarinis, the Lindells, the Fullers, the Perreaults (with a special Addie's Birthday dinner and all the fixin's), the Buckners and tonight, the McCarthy's from AYC. In addition, the Tolman's sent a crazy big shipment of frozen goodies to fill in those barren in-between days. I'm at least 10 lbs. heavier and happy as the day is long. It's such a huge help - thank you to everyone.
We've also continued with our "guest rider" program for those days without (and sometimes with) our kind and considerate driver J.P. The back seat has seen the likes of my dad, Patricia, Uncle Richie and Susan Q. Amy H comes tomorrow. JR really enjoys having new people in the car as believe it or not, mom gets dull after a while. Jim will have a special birthday cruise with us on JR's birthday next week. Aside from helping with other sanity-keeping activities, the Servas' and the Halvorsens have continued to find ways to organize us and entertain us. We feel the love!!
I can't say I'm sorry that our news is dull and repetitive, but I am sorry if you were looking for some of that doomsday drama and sensationalism. Not here, my friends!! From day one we've asked for positive thoughts and we are getting more than we ever dreamed of. Keep it coming!

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!