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!