Make It Stop

So now what?
Jim and I ask each other all the time - what are we supposed to do? We just don't care. We attend meetings at the Den for Grieving Kids, part of the Center for Hope. These meetings are family-based, so we all attend. There is a group meeting for everyone and we all split up for smaller group sessions - the kids go off to aged-based smaller groups and the parents attend death-related groups (the parents in our group of 7 or so have all lost a child, other groups I imagine are for adults who have lost a spouse, etc.). We do find some comfort in being with other people who are experiencing a similar loss. We hope that Addie is finding some comfort in being around other children her age who have had someone in their family die. It seems as though most of the other kids have had one of their parents pass and I don't know which is worse, a child without their mommy or daddy or a mommy or daddy without their child. All rotten stuff. We've had some other horrible tragedies happen around us, starting with our dear friends the Loura family. Mike Loura was in a bike accident and is paralyzed. We pray for him and his family everyday. Move on to Jennifer Tomasello, wonderful mother of 3 young children and wife (her oldest son Andrew was a classmate of JR's) who lost her cancer battle. I know she has joined my sweet boy and I am happy to think of his having a nice mommy up there with him, joining my great friend Martha's mom for some extra lovin'. Keep him safe, mommies. Another hugely significant event happened shortly after when I got an email that read Mikey Czech died. I never knew Mikey but had heard about him through a contact that my wonderful Uncle Ron had put me on to. At the time, almost exactly one year ago, Mikey's father had put out an APB looking for information on doctors for his 11 year old son who had just been diagnosed with a rare form of inoperable pontine glioma (brain stem cancer). I read the notice and quickly forwarded him JR's doctors at Sloan Kettering (whom he contacted). They ended up at NYU (with the other doctor that JR's surgeon had recommended) and joined a clinical trial that seemed very promising. I heard through the grapevine that he was doing well (a neighbor is great friends with a New Canaan family who are friendly with the Czechs). I was so surprised and deeply saddened when I heard that he died fairly suddenly in September but all due to freakin' cancer. We've had a lot of contact with this very special family and know for a FACT that JR has been there for Mikey and we often picture them running around together. I hope they feel our daily (hourly, OK, each minute) prayers and enjoy each other's company. It's all devastating. I can tell you one thing, however. Cancer never met such a grueling competitor as Mikey's father, If anyone on this planet will help children overcome this disease, it will be Mikey's unwavering parents. God bless that family. They have been a true source of inspiration to me.
Fast forward to Thanksgiving. Now any of you who are familiar with my previous blog entries or who were around us during all of the hospital stays and treatments know that the person who got right in there and got his hands the dirtiest was my Uncle Ron. A minister, hospice chaplain and cancer survivor. He knew Sloan Kettering like the back of his hand and knew just what we needed to do to help. He was with me for JR's first post-op meeting when Dr. Souweidane read me JR's pathology report (which meant nothing to me at the time but in retrospect was a death sentence), taking notes and asking questions that I didn't know to ask. He showed up out of the blue when JR had subsequent surgeries and hospital stays. He kept my family informed and knew when to intervene. He just did everything he could to stay in the loop and to make sure JR was being looked-after properly. All the while, his cancer had quietly returned and was robbing him of his future. He even went out on Addie's birthday (Oct. 1) and got her the best present (a fashion design studio, as it is called) all on his own and was so proud to give it to her (Thank you Uncle Ron). As fate would have it, Ron's cancer took over and he left us Thanksgiving evening. Like JR, he was surrounded by his family and passed peacefully. Could all this be happening? Please pray for Ron, my Aunt Gail and my cousins Chris and Mark and Chris's wife Andrea and their two (and a half) children, Kalle, Luke and baby due on Luke's 3rd birthday in June. What an amazing family they are and they have done so much for us and we feel so inadequate in our help for them. We miss you Uncle Ron.
One last tragedy (with a silver lining) that I must mention. Our neighbors and dear friends the Fitzsimmons had their very own brush with death when their son Jack was hit by a car while bike riding just before Christmas. Thankfully, his injuries will heal and he will recover but his leg was badly broken and his head did a job on the car's windshield but luckily the windshield was no match for Jack and we can rejoice in the fact that Jack will be okay. I remember not being able to breathe when I heard about Jack's accident but our prayers were (finally) answered and he was spared. I can't even begin to imagine the what if's.....
I'm sorry if this is all so depressing but I think once you're in the world of horrible things happening, it can snowball. I think Jack provided the block under the tire that kept the truck of doom from just crashing out of control. All we can do now is try to focus on how we can make some positive changes in this world. OK, so today is Barack Obama's inauguration and we'll hear a lot about all the change that is going to happen. Perhaps we'll see a few things change, but do you think we can rely on the US Government for change in ourselves? The only change I can forecast will come from each of us if we take a look at what has happened and figure out the best place to put our efforts. That is my short-term goal. To figure out where to use all this passion I have found in my quest to honor my son and to make sure that his life will stand for something grand. I have this jumbled mish-mash of ideas and I haven't fully streamlined how to make some of these ideas come to fruition. I sit with my Kimberly and she listens to my grand schemes. Thank God for her and her organized thinking (as I always compliment her) because somehow between the two of us, we will formulate a significant and lifelong goal. Once the goal is set, I will promise to deliver. Luckily, I won't have to limit my delivery to 4 years. Please honor JR's memory with me.

Coming Up on Six Months

I haven't had any desire to write since JR's passing and for some reason today I just sat down, looked up the blog to see if it was even still there and decided to give everyone an update. So much has happened in the nearly 6 months since JR was here with us. I've cried millions of tears that come whenever they decide to come. For example, earlier today I was returning Addie's Hannah Montana combination clock/radio and iPod docking station Christmas present to Toys R Us (this is the second such product I've purchased that completely just doesn't work) and heard a dorky 'ole Pat Bennitar song "We Belong Together" and sat sobbing for half an hour in the parking lot. Didn't expect that one. Going into the store is also gut-wrenching. JR was always fascinated by any store that sold, well, anything. Talk about a kid in a candy shop, or in his case, just a kid in a shop. Add toys and voila, a full-scale battlefield where he always somehow won. Especially given his circumstance, there were never too many "no" answers coming from my mouth. I literally have to turn my head away from the Lego section or the sports equipment section or when I see Pokemon or Yu-Gi-Oh or even Thomas the Train. Then there's the Nintendo and Wii stuff and the bike section. It pretty much covers the whole store except the very pink sections that I head for and wander around in until I can get enough courage to sprint with my head down to the cash registers. I had on dark glasses today to hide my puffy red eyes so imagine what type of lunatic people in the store must have thought I was! I had also slept in the clothes I was wearing. URRRRrrrrrr. In the end, I was proud that I had returned one item on time and while I was there, managed to buy a birthday present for a party that's not for another 9 days. If I can check off just one thing on my list then I feel like I've had a productive day. The number of things on that list is so overwhelming (and growing) that completing one item a day doesn't come close to outpacing the rate of growth of the list, so do the math. Also, there are some things (like returning a purchase to a store) that are simply, "get in the car and drive" that I can handle quickly but if there is a "search for the receipt" or a "find a replacement" component then the task might go right off the radar and slip way down on the list. There is also no rationale behind the things that might suddenly jump to the top. I spent hours the other day working on updating my passport and getting Addie's together. Huh? How did that get to the top of the list? They're not done, by the way, but a new file has been created and has added several new things to my To Do list. Mind you, I had a minor case of the same traits before any of this happened but to see this behavior so amplified worries me a bit. What's in store? Do I care?
Let's see....we had JR's wake on July 21st at Lawrence Funeral Home in Darien. The Lawrence Family was so wonderful, kind and generous to us that we were speechless. If any of you aren't aware, JR (and Addie's) school nurse is a Lawrence sister, so the existing tie to the Lawrence Family already ran very deep. I don't know how many hundreds of people came and don't remember a whole lot about it, except that while I stood next to JR's casket for 6 hours, I hugged and cried with so many people that the button on my jacket pressed into the middle of my chest so many times that I had a big bruise there. Talk about auto-pilot. We managed to get boxes upon boxes of JR's stuff (including his impressive Webkinz collection) scattered all around the funeral home. We were in such a fog we look back and wondered how everything could have taken place. We were just gone. Completely gone.
The funeral the next day at St. Luke's? Huh? I guess that happened, too. I will figure out how to attach each of the eulogies but if I try to do it right now, I'll never get finished here. I only remember looking down at the floor while walking in, reading something and scooting out into the car. I also remember Laura playing the flute since she was one of the few people that I faced. I know what Jim, Bill, Ron, Andrea and Kimberly read but never heard them. I found out later that the church was overflowing and that people had come from all over the place. Sorry to everyone that I didn't see that day (Tracey came all the way from California and I didn't even know it!!). We went to the cemetery (Long Ridge Union Cemetery in Stamford)?? Little blurry on that one, then went home to change and met up with many of you over at Weed Beach for a little casual JR-inspired beach time. I do remember a little of that. The kids all signed a blue balloon and let it go while yelling "We love you JR". Neighbor Kurt got the perfect shot of the balloon releasing.

Just in case you're curious, no, it hasn't gotten any easier. In fact, I find that it has become more difficult as time goes on. A touch of the disbelief and shock wears off to reveal some very tortured feelings. I find that most of the time, I can manage to put the disbelief lid back on in order to save the anguish for later. Works for me.

Well, let's see....that brings us to the end of the first week, only 25 more to go to get caught up. You see how this works?!! I promise to have more info soon but for now, I'm signing off. Thanks for reading and please send JR's soul your most wonderful thoughts.

A Memorial Fund

Our wonderful friends have set up a fund in memory of JR as many people have asked us what they can do to help. In lieu of flowers, we wanted to make this fund available as follows:
JR Schoen Memorial Fund
Citi Smith Barney
399 Park Avenue, 12th Floor
New York, Y 10022
In addition, they are working on a foundation that we will use for making something good come of all this sorrow and hope to announce a fund raiser in the months to come. Thank you so much for the outpouring of condolences. We are so touched by how much JR meant to so many people.

Arrangements

JR's wake will be held at Lawrence Funeral Home on Monday July 21st from 2 to 4 pm and from 6 to 9 pm. The address and phone number is 2119 Post Road, Darien, CT ph. 203-655-6127. I believe they also post information about the arrangements on their website, www.lawrencefuneralhome.com. Many of you probably know that the home is part of Cyndee Rogers' family business and I wanted to let everyone know how generous the Lawrence family has been with us. Please don't hesitate to thank them for taking such good care of our son. We are also in the process of setting up a foundation for donations in lieu of flowers and will provide that information as soon as it becomes available. We, of course, hope to help other children suffer less and survive this deadly disease. No child should die like this.
In addition to the wake, the funeral will be at St. Luke's Episcopal Church, 1864 Post Road at 11:00 on Tuesday, July 22nd. We hope this will help begin the healing process. It's still impossible to us all that this has happened and we think of him every minute. We will let you know more as the plans unfold. I just can't get my hands or my heart around what has happened and I'm still in total denial. He had an automatic spot in heaven.

My Beautiful Boy

My beautiful boy left this world today in search of brighter shores. He died on July 16th, 2008 at around noon surrounded by many of those who will always love him dearly, including both Jim and me. It seems impossible that this has happened to him and we will never live a moment without thinking of him. Addie will miss her big brother. We will let everyone know what the arrangements are and will also post them to Lawrence Funeral Home's website (in Darien), so please check it if we are not able to let you know personally. We are all devastated and will never forget all the love we have felt from everyone. God Bless our son. He will be with us forever.

We're Home!

I wanted to let everyone know that we arrived home last evening. It was very hectic getting out of the hospital and I wasn't sure if it would all happen - getting prescriptions filled, dealing with the ambulance, getting the nursing service set up at home, etc. It all came together and it was a very emotional departure - we've had wonderful and caring help at MSKCC and I was nervous about doing it all at home. Upon arriving at home, I was greeted by Jim and his mom (who has come to stay to help out) and my "3", that is Andrea, Patricia and Kimberly, all there to help and make the transition for us much easier. The visiting nurse came and went through all of our medications, etc. and ordered an oxygen machine that was delivered later that evening. Addie was out at Movie Night at AYC and arrived home at 10:45 PM!!! She is happy that her brother (and her mommy) is home. Andrea and Patricia stayed ALL NIGHT (until 6:30 am) so that I could finally get a night's sleep which was absolutely delicious. Everyone's getting to know how to help with repositioning, feeding, giving medication, etc. so that I can spread out the responsibility here and there. That's it for today - I just wanted to let everyone know that we're home and JR seems very calm and peaceful and very much loved. Thank you so much to everyone for lending a hand and once again for all the wonderful prayers.

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.....