Back on Track

OK so it's been crazy. I'm glad I posted an entry in April because it seems as though there hasn't been a free second since then. Anyone who has seen my house at the moment can immediately identify me as someone with way too much going on. Or someone with adult ADD. There have been some dark days in there but I feel like we're back on track.
Let's see - over the past several weeks, J.R. was having some headaches as the doctors were trying to keep a tolerable mix of steroids and other medication. Unfortunately, the mix wasn't doing the trick and the headaches got worse. We had a few emergency room visits but the CT-scans et al were telling us that nothing drastic was going on so we weren't overly concerned but, of course, hated to see JR going through pain. We've had such high hopes that his treatments would negate the need for all this medication but it just wasn't working fast enough. He had mentioned double vision a few times and was always so tired. He was also so hungry all the time from the steroids and just completely not himself. He tried to go to school but I'd get a call from the nurse about an hour into school and I felt cruel even trying to send him but he really wants to feel like a normal kid.
We managed to have a couple of fun times in between all this. We attended Hindley Happening, a local school carnival with lots of rides and everyone in town wandering around. It was fun to feel 'normal' for a little while. We had front row tickets to the Mets game for Mother's Day, courtesy of Lars Noble, JR's baseball coach and the folks at Kelly Real Estate (his in-laws). From what I understand, the Kelly's box seats are right on the Met's dugout, so we were armed with baseballs and hats to sign.
Mother's Day ended up to be a very different day than we had planned. J.R. had a lot of difficulty through the night and claimed once that he felt like Jello and had some pretty severe vomitting, etc. We knew where we'd be first thing in the morning. Well, first thing in the morning ended up to be about 5 a.m. when J.R. was very ill and not exactly with us for a while. The details are very scary (I'll skip them) but it's the type of scare that will stay with me for the rest of my life. Jim said call 911 and I resisted for some reason, just wanted to get to Memorial Sloan Kettering where all of his doctors would understand his condition. We threw him in the car and drove him down there (we were extremely lucky but also extremely stupid to have done that - I totally should have listed to Jim). By the way, if you think you should call 911, call 911. I've been comforting myself with "all's well that ends well" but the truth is, I took a risk where I shouldn't have. Luckily, we got there with JR sleeping on my lap and Jim at the wheel. Addie got dropped off at our neighbor's house somewhere around 6 a.m. and spend Mother's Day with her other mother, Kimberly. Side note, Kimberly's son Nicky spent the night in the hospital just a week before that with a very broken arm, so you know how hard it was to make that phone call at 6 a.m. on Sunday morning of Mother's Day. Thank God for our incredible neighbors. There is no thank you big enough.
So we're at the hospital and we get JR stabilized (some other details we'll gloss over) and the doctors aren't quite sure what is going on and they really won't for a couple of days. He's either having seizures or "pressure waves", meaning he has "water on the brain" which can substitute for the medical jargon. Causes pressure and headaches and all the things that were happening. He gets put on a bunch of different medications and monitors and gets transported (by ambulance to go literally across the street to NY Presbytarian) to the Pediatric ICU (Memorial doesn't have a proper ICU suitable). He reamins pretty stable for a few days and we determine that he is not having seizures but indeed having pressure waves. The best and longest term solution to this is to implant a shunt in his head (more details to skip...). So last Wed. (5/14), he had a successful surgery (minor compared to his other surgeries) and was transported back (another across the street ambulance ride) to MSKCC and was discharged last Fri (5/16). He's been exhausted but the headaches are gone. The wind is kind of out of his sail at the moment but he's been through so much. We are anticipating that we'll see our little guy back in full swing over the next few weeks. By then, he'll be off these steroids and it'll be summer!! The thought of summer always lifts the spirit, even as a decrepit old shell of my former self, I always feel good at the thought of summer.
Our chemo plan was pushed off a week, but we managed to fit in a few follow up MRI's this past Tuesday and Wed. and JR received his chemo one-two punch all on Wed. (yesterday). So we don't know which end is up. He doesn't seem to have much as far as side-effects from this chemo but there's been so many other issues all clouding our analysis here.
It's finally time to simplify! Going forward, we'll be just doing our chemo and antibodies every two weeks (looks like we'll be able to keep it on one day and not have to go in 2 days in a row), have an MRI here and there and get off all this extra medication. As of this moment, we feel back on track and just moving forward, leaving this ugly period behind. Let's hope the next blog has very little to say - something like - "things are great, nothing much to report". Sounds good to me!
One more side note - we may all have our political opinions, etc. but please put Ted Kennedy in your prayers as he is also experiencing exactly what our son is experiencing and no-one on Earth deserves to have this happen. I hope that he can help shine a light on these horrible brain tumors and ultimately bring some progress in curing this cruel disease. Thanks for reading.