In God's Hands

I don't think of myself as a particularly religious person - I don't make it to church much, haven't really had the kids involved in Sunday School and I can't say that I look around and all I see is God's creation. After all, I'm an engineer by way of education and science tends to train us to look for concrete proof and I don't remember getting much out of sitting in church as a kid (I didn't mind being in the choir since I could sit with my choir buddies and giggle and pretend I was singing).
However, despite my attempts to dismiss these beliefs, they become a part of you whether you fully embrace them or not. These beliefs saturate you and define you in times of need. At this point in JR's journey, I feel as though he is in God's hands and I am comforted by visits from two of our ministers from St. Luke's. It haunts me that I haven't exposed JR to more of the church as I feel he, too, would feel more love and less fear if he were taught more of what the church has to offer. I can only hope that he feels safe and loved even without the formal schooling. I'm sure that all the prayers going on out there are surrounding him as he struggles.
To update you on this leg of the journey - we made it back home on Thursday (6/27??) to find a hospital bed lovingly set up in our living room (thank you mom and Kimberly) and all sorts of support from our local hospice folks. The several days between my last posting and the day we returned home were not a lot of fun, some seizures, some chemo, etc. but we got JR stable enough to get him home. We even had him out of bed, in his wheelchair and even standing (mostly on his own). He played a few games of Connect 4 and we got some giggles out of him which always does so much for the soul. Every person from our immediate families visited (and then some). Dr. Yasmin Khakoo, neurologist extraordinaire had taken over the helm of JR's care quite a few months before and she was very supportive of getting him the heck out of the hospital.
At this stage, I need to say a little more about Dr. Khakoo (like "CA - KOO") and J.R.'s team. We've been so blessed with caring people. Dr. Khakoo would sit on the floor of her office and play Break the Ice with JR, ask about the hamsters, ask about school and has truly been a friend and advocate. She has a son born the same year as JR and we heard about his 10th birthday sleepover and we've just relied so much on her knowledge and judgement. I don't know how someone can devote their life to kids with brain tumors and not become desensitized but she's the whole package. I always feel a sense of relief when she gets involved because I know that she has JR's and Jim's and my best interest at heart. We've been hoping that his treatments would alleviate some of his symptoms and trying like hell to keep him with us. I know her heart is breaking, too.
So back to having him home. We spent the weekend of 7/28 learning how to care for JR, how to give him his medications (he has a feeding tube so everything goes through that), met all the hospice people and started figuring out our new routine. Jim and I were pretty overwhelmed at first and nervous that we'd mess things up, but managed to get things under control. Addie spent that last week of June with Jim's brother and sister-in-law Kevin and Carolyn up in Andover, Massachusetts where she was super-spoiled by her two wonderful college-aged cousins, Lindsay and Holly. That, I'm sure, will be one of those special lifetime memories for Addie and everyone went all-out to make her feel special. She even had a private horseback riding lesson!! Well ex-cuuuuuuse me!!! Addie returned home on Saturday to find us all there and missing her terribly. Of course 2 seconds after she got home and hugged us all, she wanted to go play. Anna up the street took her in and showered her with many cute hand-me-downs and we were treated to a fashion show later on that day. The next day she got her Julia fix (best pint-sized buddy and Kimberly's daughter) and was so happy.
We managed things for a few days and JR unfortunately had a scary seizure on Tuesday morning (7/1) and I ended up calling 9-1-1. I wasn't sure if he was breathing and we ended up at the ER in Stamford Hospital once again. Sidebar but when the paramedic was at my house, he put 2 and 2 together and realized that I am his wife Kathy Gottlieb's friend from ages ago. He said he could tell her that he saw me but wouldn't be able to say why. Another sidebar but the Nurse Practitioner at Stamford Hospital used to work at Sloan Kettering with, you guessed it, Dr. Khakoo and Dr. Dunkel and all of our friends at the POU. Amazing.
We were awaiting a room for overnight observation (for hours on end) and were told that they were just getting our room number but as red tape would have it, they chose not to admit him there as his case was too complex for their comfort, so off we went to Sloan Kettering by ambulance once again. And here we remain.
We've now been here a week and it's become extremely frustrating. The poor kid has developed super high blood pressure, a ridiculously high heart rate and is still having seizures. So not only have we not figured out his anti-seizure medication but he's more frail than ever. We've had some wonderful moments when he's suddenly aware and hanging out with us but mostly, he's sleepy and having a hard time. It's so brutal and unfair.
So, here we are. I struggle with the bring-him-home/keep-him-in-the-hospital seesaw. I want him to be home more than anything but I want him stable enough and possibly on the mend but I have no reassurance that we are getting there. It's excruciating. I have long conversations with him about going home and what home is and who he is to us. I like to keep bringing up all sorts of fun things we've all done together and remind him of his favorite things. While we were home last week, Addie and Jim went out and caught some fireflies and bought them up to JR. He was definitely interested and we were hoping that he was picturing himself running around catching some in the yard. I'll stop at this because memories are starting to flood and so are my eyes. Kimberly just called me and we both just lost it. Time to take a deep breath and continue hoping and praying. My friend Amy Hurley is here to lend her support and just gave me her signature bear hug that felt incredible. We are praying for miracles here and miracles do happen and why not for us? You never know.....