If I Had One Day With Him

I wanted to share the poem I've been working on. JR was great at writing poems so I thought I'd give one a try. It's a little rough but expresses how we are feeling at the moment. Thanks for reading!

If I Had One Day With Him

If I had one day with him which day would I choose?

Easter or Christmas or his birthday cruise?

Would I hold him and love him or let him run free?

Let him play baseball and climb up a tree?

Listen while he giggles with our new little dog

Try the new computer and have him read my blog

Go on an adventure on his bike with his dad

Buy candy and soda like he always had.

Would he want to dance crazy with his little sis

Or just run with the boys who I know he must miss

Play man hunt and basketball then the Buckner's new pool

Or go to T and Logan’s and break his bedtime rule

Listen to Godfather’s same silly lines

Ask Uncle Richie to read poems at bedtime

Show him the changes we've made to the house

Show him the spot where we buried his mouse

Hang in his room that's exactly the same

Bring him to star in his team’s baseball game

Buy him new cleats cause he outgrew his old

And a bike and some clothes and whatever I'm told

Go feed the lamas or help paint the wall

Go to the beach and watch the crabs crawl

Take out a kite at Cuttyhunk beach

Run down for ice cream - it's just within reach

Go to the diner for a shake and grilled cheese

And French fries and pancakes and whatever he please

Watch him catch butterflies with a nice brand new net

And a jar full of of fireflies to complete the set

Go back to Sloan Kettering to say “Thanks!” to the docs

The cancers all gone now I've regrown my locks

My scars they have vanished my port's disappeared

My family is happy and gone are their tears

Admire his shoulders for now they are broad

His legs still are skinny I love his whole bod

Bring him to Holmes School to go to fifth grade

See what would happen if he had just stayed

Bring home for me a Mother’s Day poem

Return books to the library you had out on loan

Give me a flash of smiling eyes big and blue

See if he’s grown as big as Matthew

Would the girls think he's cute? Would Holm make him laugh?

Would he still try the honeysuckle on the school path?

Would he play some lacrosse? Would he make the team?

Would he still be the boy I see in my dreams?

Or stay home from school cause it's snowing outside

Build Charlie a snowman and take my sled for a ride

I can't believe Julia can fit into my boots

And who is this Bailey at Kalle and Luke’s?

Buy him a boat cause he's in Opti 3

Beat Andrew and Lily in race #3

Picnic Point barbecue, corn on the cob

Fourth of July fireworks with the AYC mob

Go to his garden and dig in some plants

Talk to his teacher and watch him advance

Schedule a play date with friend Ryan Q and Ryan M

Or with Justin or Liam or with his friend Ben

Have Logan come over and go to the bog

Get his feet dirty, trip over a log

Finish the day by throwing some rocks

Feeding the elephants, playing with blocks?

Dinner with buddies Antoine and Nick

Daddy’s grilled skirt steaks and you get your pick

Addie will give you her one last little sweet

And let you have more counting Halloween treats

Hang out with Wrigley and the whole Servas bunch

Play some badminton have watermelon for lunch

He'd need a good hour to wander the hood

Meeting Bromley and Harley and Duffy - so good!

Would he care about Legos or Webkinz - oh please

He'd rather go shopping for stacks of CD's

Buy a Father's Day surprise while we're out at the store

Snow Patrol, Nickelback, Daughtry and more

That day that I long for I think it's today

Or maybe three years ago when he was okay

Or way in the future when he is a dad

And we could remember the good times we've had

Which day would I chose if I had the chance

Graduation or christening or his wedding day dance?

I hold all his memories so close to my heart

Still dream of his future and each brand new start

Wish he could be just a regular boy

That was all that he wanted he brought us such joy

All these heartbreaking thoughts swirl round in my head

What would life be like if he were cured instead

I wouldn't be dreading the 16th of Julys

Or designing his headstone to mark where he lies

I'd be planning his birthday for this coming fall

And watching his changes and calling him tall

His sister is almost as old as him now

His parents look older and hold onto a vow

Meet him in heaven and watch him run free

Love him and honor his his whole family

He has his new parents now aunt Claire and now Rich

Uncle Ron takes him camping and throws him a pitch

His new friend Mikey is on second base

Abraham Lincoln covers home plate

Grammie Sue has him over to meet Grandpa Hal

Herman and Eleanor are who he calls Pals

He likes to take care of his baby cousin Doug

And cuddle with Sarah and give her a hug

When I sit with my husband in such disbelief

Why would God give us a life full of grief?

We'll never have answers or know what his life would be like

At Nine and three quarters he's just past a tike

All we can do now is honor his name

And stop trying to figure out who is to blame

I just know I love him and miss him so much

Long for his laughter his face and his touch

A Little Information Helps

I cannot believe that a year has passed since I last wrote. I haven't been able to face this blog. For some reason today I felt like sitting down and getting to it. Perhaps I'm just avoiding other things that I should be doing but I hope this becomes a more frequent event.

Not a lot has really happened with a few notable exceptions. We added a key new family member in our little miniature dachshund named Buddy. Addie wanted a boy dog and wanted to name him after Jim's nickname for JR, hence Buddy. Cousin Chris & Andrea's neighbor Denis heard our story and was thrilled to give us our fun-loving and energetic little puppy and we have all been delighted with him. He's been a great addition and is the subject of Addie's blog-style newsletter named the Buddy Chronicles, complete with articles and dress-up pictures. He's accompanied us on several trips and is great company.

Addie and I went to Paris to visit my niece Lindsay who was studying over there last Spring. We spent a week last summer with our dear friends the Trepps down in the Outer Banks. We escaped Christmas with a trip to the Dominican Republic this past December and avoided the earthquake in Haiti by a mere two weeks. Addie started fourth grade and has been knocking the cover off the ball at school. Kimberly's mother survived a bizarre illness and we lost our neighbor Frank, our friend Claire and my grandmother Sue. Many more things would happen over the year and this could end up sounding like a Christmas card insert but I'd rather get back to the real subject at hand; are our hearts mending?

My first reaction to a question like this is a resounding "no" but things are a little bit different. I am not sure if this is an indication of mending but more like getting used to living with pain. Jim and I are still dazed and confused and asking ourselves "Could it really be true?" and "Why was it JR?" I remember one of the doctors telling me that about 180 cases of pediatric GBM's (glioblastoma multiforme) occur each year. The odds of that happening to JR are virtually impossible yet here we are without him. It doesn't make any sense. Our friends-in-mourning the Czechs also lost their son to a different type of brain tumor that shows up in about 150 children a year. Even more impossible but yet they are in our same predicament. How does anyone process this and make sense of it? We certainly have no clue.

About a month ago, I attended a presentation, accompanied by my BFF Kimberly, on cancer gene therapy for brain cancer. Sounds like something that would make most people run screaming but for someone in my situation, it was very informative and helped me put a few things to rest. For example, one of the first things the panel of highly-qualified experts in this field of research pointed out was that GBM's (the research disease of choice since it is so aggressive that they can attain results very quickly) are essentially 100% fatal. The standard of care can prolong life by a few months or so but there is no cure. I believe my last blog entry let you in on some of the uneasiness I have felt over my choices for medical care and some of my "If only I had tried this" worries. Knowing that there was nothing to stop JR from his horrible fate at least frees me of the guilt I feel for not finding a successful treatment program. It doesn't get him walking through the front door but unfortunately nothing I could have done would have yielded that result.

Another piece of information that I learned or perhaps confirmed was that with all the research through the past 40 years (GBM's are much more common in adults so research has forged ahead. Side note here - not 100% clear here as to whether or not the adult research is even relevant to pediatric GBM's but for the sake of argument we'll say it is) has not given anyone any information on why these tumors form. To this day, nobody has a clue. Again, so awful, but I can stop questioning every little thing I did for JR and wonder if it caused his illness. We may find out down the road that some crazy obvious lethal something or other is present in JR's room or in the brand of peanut butter that he liked but as for now, there is no known cause. Again, a little sigh of relief that I cannot blame myself repeatedly for causing JR harm but it again does not bring him back.

So where does that leave us? I think we are in a more pure form of both missing him and feeling very bad for him and how he spent the last months of his life. There are still so many unanswered questions but most of them now relate to what his experience was and how much did he suffer and what could we have done differently for him. I regret not taking his Make-A-Wish trip to Hawaii and not just totally going all-out every single day we had together. I wanted to keep things "normal" for him so that he felt secure and promised him that everything would be okay. The only thing we know for sure at this point in time is that we love our children and that will never end. I feel like there could be no-one in the world that could have more love than I do but I am sure I am in a huge subset of people on this Earth called parents. I also know that I will never get over the loss of JR. It's a proven fact amongst bereaved parents. How we handle it through the years remains a mystery but the first 19 months and 8 days has been heartbreaking. The key for me has been to make sure I have alone-time to allow my grief to happen. That and wine therapy. I have my wonderful little posse and I am so grateful.

I have so many stories to share about the amazing people that have shared with me as a result of our tragedy. I am now an absolute wealth of knowledge about people experiencing loss and each story is a gift. It is helpful to share stories. It is helpful to bring JR up in conversation. It is helpful to help someone else. Mostly, it is helpful to be around people who are not afraid to show that they try to understand and that they are remembering JR. Some of the most amazing support has come from people who didn't even know JR. In my next blog entry I will strive to relay some of these amazing stories. For now, thanks for taking the time to read my thoughts and for thinking about my son.

Remembering Last Spring

It was a year ago last week when we learned that JR's tumor had returned and we were in the process of deciding what our best course of action would be. It is haunting me because no matter what we decided, we would never know if a different decision would have had a better (or worse???) result. We did know that it had come back quickly and was aggressive (nothing showed up in his Jan. 3rd (2008) MRI but 7 weeks later he had a marble-sized mass). We'll never know if the decision to remove the tumor right away via surgery was the best thing to do or if we should have done more exploring to find doctors who might have had success with different approaches. It made sense that if his treatment wasn't working and we were going to try a new protocol, we might as well start with less tumor rather than more. One thing we were sure of was that his doctors were doing their best and cared deeply about our son. We are fairly certain (not 100%) that his fate was sealed from day 1 but I continue to research the topic to see if there was something that I missed. When you have a team of about 12 pediatric Sloan Kettering cancer doctors from a spectrum of disciplines, from neurosurgery to neuro-oncology to neurology, etc. at your fingertips and 11 out of 12 of them decide that surgery is probably the best option, it is hard to question or challenge.
One thing I have learned through my reading is just how complex the issue of pediatric brain tumor research is. There are about 120 different types of brain tumors, and can all act differently in different host brains, especially true of a developing brain. Dr. Khakoo and I discussed some of these things over coffee that crazy Rockefeller Center day. I asked her if JR's tumor (high-grade (4) glioblastoma multiforme in his right frontal lobe) was actually more of an adult tumor since it is relatively common in adults and fairly rare in children. Her answer was careful but the message was that the tumors rarely ever seem to act the same way. I've been thinking that maybe I'm missing something here but the truth always seems to come down to "maybe sometimes" or "it depends". I saved this report I found that explained the main areas that needed research for brain tumors. It was a round table-type discussion held at a conference of all these researchers. There had to be tens of thousands of variables that needed research (that number could be naive but seems somewhat realistic). And even if the cancer presents itself as being similar to a categorized type from the beginning, it can morph and go along its own unique path - a moving and morphing target. The worst part, at least from my experience, is that this cancer can suddenly jump from one location into the spinal fluid as it rinses through the brain (JR's experience). Some strange new version shows up in spinal fluid and ventricles and meninges. I am still confused but I think it was this part of the cancer adventure that took JR's life. I remember doctors chalking things up to disease progression but the MRI's not showing much evidence. It was so maddening. It still is.
One of the comforts I had initially was that JR died peacefully and innocently and that I did all I could. At this stage, I feel far more responsible for his death and wish that I had been much more of a pit bull. Again, I'll never know if anything would have changed. There were no do-overs. One shot and I didn't get the job done. I know Jim has similar feelings of failure.
Another thing I've discovered is the absolute chaos that parents are thrown into when their child has a brain tumor. If I were to, say, discover that I was infertile, I could go to a government-sponsored website and find out success rates of doctors who dealt with infertility. A life-threatening childhood illness like a malignant brain tumor - different story. Even now that I want information that I can actually read and not fall apart (OK I fall apart every time), it is STILL not out there. I can get explanations of the brain and what the different types of tumors are, but that's it. I guess when you have such a high mortality rate, no-one wants to be the one that everyone flocks to. However, it seems like if everyone is out there trying their hardest to cure this, perhaps research dollars should be focused on certain tumor types for certain institutions. I remember one parent told me while I was in the playroom at MSKCC that her child was in for his 5 year visit (5 years is typically considered "cured") from a neuroblastoma. I think he was initially being treated at Dana Farber in Boston and was not given much hope. Of course Dana Farber is known as a cutting edge cancer center. No one told this mother that there was this crazy good neuroblastoma program 200 miles away at MSKCC where people from all over the world come. She found out by chance and it saved her child's life. I might have a few of my facts wrong but it's an example of how you go to the place that you think is the best (and it very well might be) but you have no idea if it actually is, how many cases of this they see, what their success rates are, if there are any surviving cases (a question you don't want to ask), etc. There's no central registry, no true statistics about care and medication types, on and on. You are thrown into this medical world of terms and hospitals and neuro this and that and leptomeningial and MRI and EEGs and shunts and mediports and levels and bactrim and dilantin and feeding tubes and morphine and zofran and diastat and what's that stuff called again - the one that revives you when you might not make it? I forget but know we used it once in the urgent care room at MSKCC and had it on hand at the POU. I remember the one nurse (Reese, one of my favorites) was putting a bottle of it on the shelf once and said, not on my watch. I was happy.
Some of the pediatric-oriented websites and not-for-profits will get into some detail but will quickly change topics when it comes to survival rates for a Stage 4 (even though it's called grade 4) cancer, just say that there is a significant decrease. Where to go? No info at all. Who is the best, no info. You read about surgery, radiation, chemo and perhaps a second surgery. Then you read about late effects, things that might happen to your child once they've survived and continue to age. Not much in between. Brutal stuff.
I have so many more observations to pass along, all intended to outline the things I'd like to dedicate a lot of time to changing over the course of my life. Writing these things down helps to strengthen my resolve. It's the only way I feel I can honor JR properly and to help make his brief but wonderful life have some extra meaning. I miss my beautiful boy.

Acts of Kindness

Jim and I have been on overload with missing JR, posing the "Why us?" question and spending time with Mr. Kleenex (often times accompanied with Mr. Fermented Grape). One of the things that really puts us in a puddle is the random (and planned) acts of kindness by friends, family and often-times relative strangers. I won't be able to recall all of them in one short writing session, so if you are left out, it certainly doesn't mean that you have gone unnoticed - no doubt we've cried around the fire about it, but I need to write about some of the wonderful things that people have done for us.
Where to begin? Even before we lost JR, while spending endless nights at MSKCC (that's Memorial Sloan Kettering Cancer Center), I was visited by this nurse, sent by a friend of a friend. Nancy was the night nursing supervisor and she would come by in the evening to check on us and often caught me in my darkest hour. Now who would want to continue visiting me in that condition? She did! I still feel amazed that this wonderful person would sneak into my room and hold my hand in the middle of the night. Thanks, Nancy. I think about that all the time.
The gifts, the flowers, the dinners, the donations, the cleaning lady (thanks, Martha), the books, the tributes, the necklace (Ang), the emails, the thank you note help, the lawn mowing, the "I understand" glances, the let's get-together's (that's my "Kimmy"), the trinkets at JR's gravesite, the Addie dates, the hand-knit prayer blanket, the hand-carved St. James statue, the endless (still) cards and the stories of loss that are constantly being shared with us all contribute to our grief journey and give us that leg to stand on. Thank you to everyone who has helped. A small percentage of you have received my thank you notes and there are many more coming, so when I look at the list of the people I have not yet thanked, I cringe but I know that you all understand.
Two and a half weeks after JR's passing came this extraordinary event hosted by our friends at American Yacht Club. When you think of putting on a "surprise" fundraiser in 2.5 weeks, I would think you'd have a barbeque at your house or slide show with some friends or some other get-together with friends. Not an entire family regatta in memory of your son. The Jibe for JR (J4JR) regatta on Sunday, August 3rd) was organized in record time and attracted hundreds of people for the first-ever (I think) barbeque and family fun-type event of its kind at AYC. The J4JR Committee (Pam, of course, Kelly, Missy, Vanessa and Nora) also managed to raise an amazing contribution to the JR Schoen Memorial Fund, also set up by members of AYC. Our family had no idea what to expect when we arrived at the club on the morning of August 3rd. It was a spectacular day although we were scared, sad and overwhelmed. We were greeted at the dock by friends and some family members and boarded the Giglia’s boat and were treated like royalty. We watched the regatta and couldn’t help but picture JR right in there amongst his good friends, thinking they had learned to sail but still saying things like "what's a starting line?". We were greeted way out in the Sound by a stray monarch butterfly and we knew right then that JR was with us. Before returning to the lawn, we took the boat out for a quick sail and the wind kicked up and we felt smiles on our faces. We were so amazed by what had just unfolded.
We then returned to the lawn and realized that people were carrying food that they had made at home and we saw our friends cooking and serving food. It finally hit us that AYC had given permission and the full use of the facility for our fellow members to run a regatta for $1 per person and allow people to bring their own food and to donate their time and labor so that committee could somehow pass the hat and help out our family all in memory of our beautiful 9 year old son. We cannot imagine a more wonderful and caring group of people. We are forever thankful -
to the Flag Officers for letting it happen, the J4JR Committee for making it happen, we thank everyone who helped put together the JR Schoen Memorial Fund, everyone who brought food, cooked food, donated hamburgers, took out our friends in their boats, donated shirts and party favors, ran the race committee, put up signs, collected contributions and the thousand other things that all happened to make the event possible. Not one person ever even let on to us that they had helped but just did it out of the kindness of their hearts and asked for no recognition. It was so amazing, we are so humbled and we will always be so grateful.
Then there was the JR Forever First Annual Memorial Walk. What do I say for that? My girlfriends here in Darien put on this walk on JR's 10th birthday on October 11th. Have you ever tried to have streets closed and flyers mailed to schools, t-shirts printed (with a professionally-designed logo thanks to the Leunis duo), accounting set up (Dianne), parks and rec on board, town on board (including first selectperson approval) brought in corporate sponsors, t.v. coverage and the myriad of other tasks that it takes to have a town-wide event like this? In six weeks? If anyone who had ever tried this before asked you if it was possible, you would be laughed at. Not my group. Pulled it off without a hitch (Kimberly at the helm - let's be realistic). With the group I had, there were no "no's". Just success. The walk was held on a gorgeous fall day, about 400 walkers made a loop around one of the most beautiful waterfront neighborhoods in the world and returned back to a beach party and birthday celebration for our son. Hard to believe he wasn't physically there. It would have been the best day of his life. We raised over $15K for two local charities - Post 53 which is our all-volunteer ambulance squad here in town (BTW - our ambulance squad is staffed by volunteer HIGH SCHOOL students, it's a fascinating story in itself) and Playground by the Sound, a group organized to bring a playground to one of the Darien beaches, something JR would have wanted very much. What a peaceful and spiritual event the JR Forever Memorial Walk ended up being. Thank you to everyone for that memory.
I wish I could type as quickly as I can recall all the special things. As I scratch the surface, I keep thinking, "Oh, I've got to include this" or "oh no, so-and-so is going to think I didn't appreciate that". I've only just begun. However, for the purposes of this entry, I'm going to include 2 more biggies and sign off! My head is so cluttered (just like my house) that if I keep going on and on, your eyes will surely glaze over.
OK - I got this email from one of the mommies from the Holmes School (JR and Addie's elementary school) sometime in August (maybe even late July, if I check, I'll get completely distracted). I had never met her, didn't know who she was but she came across this reading that she wanted to share with me. I read the story, cried and immediately replied to her to tell her that it was the same thing that I had read at JR's funeral. What are the chances of that? Sorry to say that so many of the emails I received, although all were read, didn't get a reply as I was so overwhelmed and if I was in my typical despair, I couldn't function enough to make that response. However, I responded to Claire's email as it was such an amazing coincidence. Within a few weeks of that, Claire emailed back to say that she was wondering if it was OK if she dedicated a golf tournament to JR's memory. I said OK and tucked it away in my mind (without actually registering it) like I have with so many of these crazy-generous acts that have all taken place. Shortly after that, she sent me an email invitation to the 4th Annual Brennan Golf Tournament, Dinner and Silent Auction to benefit the JR Schoen Memorial Fund. I read this email and had no idea what she meant. I checked back in my email and sure enough, in writing, I had been completely informed and had completely signed on. What I couldn't understand is how this whole thing came about. Jim and some of his friends (especially the rugby gang) were friendly with the Brennans and had spent some quality time at their friendly neighborhood establishment in Shippan. I emailed around to find out who had put the bug in their ear about JR. No-one fessed up. Jim even went in to Brennan's, saw one of his buddies and said "Do you know who JR Schoen is?", to which he replied "no". Jim said that JR is his son, to his buddie's amazement. Turns out that despite Jim's ties with many people there, the tournament was dedicated to JR based on the goodness of Claire's heart and how bad she felt for a family of (what she thought were) total strangers. Eamir rocked it. It was a great day and I got a chance to meet everyone at the dinner. Shortly after, I went to Claire's house and she and Eamir gave me this crazy fat envelope. Unbelievable. While we still have the majority of the envelope and plan on donating it to JR's Foundation (for pediatric brain tumor research - still in development), we did tap a little for our Escape Christmas trip (a story for another time). After all that, Claire is planning on helping get this blog published. This is someone who I didn't even know a few months ago. Talk about your good people in this world.
I promised just two more stories and I'm sticking to it. The second story is another one of amazing coincidences and timing and goodness of people. Kimberly and I decided to take the kids to go see Wintuk - the Cirque du Soleil (sp??) performance at Madison Square Garden. While I was going to be in New York, Addie and I could go and grab a coffee with my great friend and JR's doctor, Dr. Khakoo. Kimberly and I were thinking about taking the kids to go skating at Rockefeller Center since it was now December and Christmas in NY and all that. I looked up the info on the skating rink and saw that it happened to be the night of the Rockefeller Center tree lighting. "Forget it!!" we said, way too much of a zoo, wouldn't go near it. One thing that I did notice, however, was some publicity saying that Hannah Montana would be performing at the tree lighting and one of the very few items on Addie's Christmas list was Hannah Montana (HM) tickets. I had looked up that one and saw that she wasn't touring and felt bad. Again, I tuck it away and kind of forget about it. A few days before we are set to see Wintuk, I sent out an email to some of my friends that have ties to NBC asking if anyone might be able to get me in to see the tree lighting in hopes of catching HM herself and rocking Addie's world. I quickly get a response from neighbor Barry who gets the wheels in motion. Lots of background here but get this. We go into the city, see Wintuk and Barry and I are calling back and forth a few times and he told me that he could get me into NBC. He also let me know that HM would most likely not be live, something that I hadn't even told Addie about so that if nothing happened she wouldn't be disappointed. But I thought it would be a lot of fun for her to see the tree lighting (only if we can do it as insiders) since we were going to be there anyway. We get done with the Wintuk and grab a cab up to meet Dr. Khakoo near MSKCC and Kimberly and her kids leave to go home. I spoke with Barry and he said that he thought everything looked promising for the lighting and to let him know when we are on our way back to midtown and he would meet us (at 30 Roc) and show us around. Great! Fun! I was dragging Addie around on pure adreneline and she was about to collapse, poor thing!! I jumped in a cab (Dr. Khakoo was the cab-finding master) and got a message on my phone to call this woman in New Rochelle as soon as possible as she had the tickets available for the lighting. I called right away and she was so pleasant and put me onto this person at NBC who would come meet me in the crowds and bring me into NBC's tree-lighting party. I thought, wow, Barry, you are really connected!! Of course at this stage, my phone battery is dying and there was complete grid-lock in midtown. We were on Park Avenue and the cabbie told us we'd have to walk the rest of the way (you must know how far Park is from 6th Avenue especially on this crazy night). Addie was exhausted and I literally gave her a piggy-back ride to Rockefeller Center (I'm now getting very late) while running. All of the foot traffic is blocked anywhere near Rockefeller Center, so I'm running with Addie on my back down to 44th street and around and up 6th Avenue until I finally (after illegally storming some of the traffic dividers) reach my destination. I called Mary Ann from NBC (turns out she was quite a VIP at NBC) and she came and met me and took us by the hand and brought us to this party. We were amazed - it was right on the rink and we sat at a table amongst some of the top execs at NBC and a few actors that we recognized. We were watching some of the performers and waiting for the 9pm lighting (just a LITTLE late for a school night but what the heck). All the while, I'm thinking Barry really has a lot of pull. I finally check my phone (I know by this time I only have one or 2 calls left on this pathetic phone of mine) and there's a message from Barry wondering where I was. I called him and told him I was finally at the party and thanks. He said, "What party?". I said, you know, the one you organized for us to go to. He told me that he hadn't organized for us to go to any party and that he was just waiting for me to get there. How could that be? We had just been escorted by a top exec at NBC to the super-exclusive NBC party and Barry had nothing to do with it? He said he had never given anyone my name, let alone my cell phone number and couldn't figure out how I could have possibly ended up there. Addie and I had a great time and someone who was sitting near us told us that our table was actually reserved for Britney Spears and if she showed up that we would have to move (she didn't show up but the magic of TV showed her there anyway!!). About 10 minutes before the lighting, we were let out onto the rink and had front row view as the huge beautiful tree went all mesmerizing on us. Addie liked seeing the Rockettes the most. We caught the train home and immediately started the grapevine. Who had this organized? Days later I got my answer. Turns out that Mary, another great nurse and friend from MSKCC saw my original email and put her own wheels in motion, knew that we were meeting with Dr. Khakoo and that we were in the city and on our way down to Roc Center and had her friend from home call me and get in touch with NBC. All on a very grand scale. All without my knowing it. Do people write stories about this? Probably not because no-one would ever believe it. People just don't do things out of the kindness of their hearts anymore do they? I beg to differ. It's all over the place and I'll have many more stories to prove it. Although it's very hard for me to get out of my own way these days, my heart is full of love for all the kindness and will always be full of love for my beautiful boy.

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.....

Lots of Twists and Turns

So much has happened since my last posting that I am shocked when I see that's it's been an entire month since I've touched base. Today is June 21st - the summer solstice, the first day of summer. Time for BBQ's and swimming pools, sailboats, vacations and beaches. I hope everyone reading this is able to enjoy all the great things summer has to offer!
Let's see.....we made it through the Mother's Day episode, the shunt, etc. and kept on track for a period of time, coming off steroids, continuing to receive treatments, etc. but not really feeling like JR was back to feeling like himself just yet. He was still weak and not always able to pay attention. I would sometimes find myself getting frustrated with him, thinking that he was just used to getting his own way and resisting me, so sometimes I'd do some teeth gritting to get him to take medicine, pay attention or whatever it was I was trying to get him to do. It would usually work, so it reinforced to me that it was his choice to drift off to never never land. After all, he is a nine year old boy and nine year old boys don't always say "how high" when I yell "Jump!" Imagine how guilty I felt to learn that he wasn't necessarily able to control himself but was having some physical difficulties. It's heartbreaking.
We went for his regular treatment on June 3rd, my birthday (33rd), nothing of note to report there. We were just finishing up his steroids at the end of that week and hoping that we would see a change back to himself. He was eating huge quantities on the steroids and that was starting to slow down and I decided that I thought it was a good point in time to just let him be on nothing for a while. It made him pretty tired and not too enthusiastic about things. I was really trying to get him to go back to school to finish up the year on a positive note and feel like a part of his class. His class, in the meantime, had sent home the cutest poster with huge letters made out of pictures of the kids spelling out "We Miss You", adorable. It was great to have him home but he just didn't feel well and I felt so bad for him. We tried to rally to go to the Sugarbowl, etc. (local luncheonette) but just didn't want to do anything and often felt shaky when he walked. I just figured he was healing but instead of feeling better he just kept feeling more tired and more sluggish.
So at 4 a.m. on Wednesday morning, June 11th, Jim woke me up to say that J.R. was not responsive. He was having a seizure and we called 9-1-1 and went off to Stamford Hospital in an ambulance. We were then transported to NY Presbyterian via ambulance. That was a pretty eerie ride since we had done the same thing last August on our first day of this chapter of life. We were admitted to the pediatric ICU, treated with some anti-seizure medication, given an EEG (like and EKG but for the head) and sent over to Sloan Kettering (referred to as "Memorial" by the staffers) for a brief day of monitoring. That Friday night (Friday the 13th) we went home, a little nervous but always happy to come home.
Now we're at Father's Day weekend. Saturday was a pretty good day, it seemed as though JR was getting better, had a couple of meals, seemed pretty alert, etc. Sunday morning, however, he just wasn't with it. He managed to walk from one room to another with some help (he hadn't walked for a few days) but he was a lot more "lights on nobody home". We were worried. We called the doctor on call at Memorial and he told us to bring him to the local emergency room. I just wasn't doing that. He was stable and the thought of waiting for an ambulance to take us back down there, etc. was too much to consider. He asked us if we had some Ativan at home. Luckily, we did and gave him a dose and brought him straight to Urgent Care (the "ER"). At least all 4 of us were together for Father's Day. We made the best of it. He was admitted and CT-scanned and tested, etc. and ultimately sent "across the street" meaning transferred back over to the Pediatric ICU (the "PICU") at NY Presb. Cornell. This involves taking an ambulance to go exactly one city block. JR had video monitoring to try to catch these seizures as they were happening but had none during the monitoring. This lead the doctors to believe that it was just progression of the disease and that we should prepare ourselves for the worst case scenario. At this stage, JR is pretty much just sleepy and we were incredibly distraught.
JR's "team" at Memorial just wanted to get him back "across the street", so we again boarded the ambulance (Addie came with us this time, school finished on 6/19) and this past Thursday (6/20), we came back over to Memorial (where we remain today). Both Thursday and Friday were filled with many visitors all hoping to help JR feel better and encourage us all to hang in there. We had all of our respective immediate and extended families come and it has been amazing to feel the love.
Even today, we are still not sure about exactly what is happening as we have had a few seizures and some more monitoring and nothing captured on the monitors, frustrating us and the entire staff here at the "Pediatric Observation Unit" here at Sloan, commonly referred to as the "POU", pronounced "poo". This is a quasi ICU but not a fully equipped ICU, so anytime a true ICU is needed, across the street you go. We thought we'd be home by now and will be as soon as he is more stable.
Where to go from here, you ask. Good question. We are going with our gut feeling which is to keep trying to conquer this disease which is causing all this trouble. I think that if we can keep JR stable enough, then we can keep giving him his treatments and hopefully be victorious. That's my gut and I have to go with it.
As always, thanks for taking the time to check in on us and I hope to be updating you with some great news soon. Until then, tell everyone you know to keep the prayers coming. We should be home soon and will be so grateful! Enough of this hospital!

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.

Time to Kick Some Butt!

We've had some crazy twists in the road over the past several weeks. Just over two weeks ago, JR started feeling very ill and the morning that we were going for his first "antibody" treatment, he started feeling some strong headaches that resulted in a pretty uncomfortable (putting it mildly) stomach. We got to the hospital and the doctors were able to control his symptoms, gave him some medication, he slept and felt fine. They decided to go ahead with his first treatment and we left feeling OK about everything. We thought perhaps he was just really nervous about having his port accessed and knew that he had a lot of questions and anxiety over it, so it made sense but I had never seen him have such a strong reaction and wasn't totally convinced that we were just dealing with a nervous tummy.
He felt OK for a day or two and attended a birthday party 2 weekends ago and I got a call that he had gotten sick at the party and frantically went to go get him. He had already rejoined the party but was tired and a little bewildered. That day was also Jim's birthday and we were having a couple locals over that evening to celebrate. JR just wanted to go to bed and wasn't feeling well again. He had a quiet day with Jim the next day as Addie and I went with some of her classmates to see a little play in New York (and finally over to American Girl Place for a quick purchase). That Sunday night/Monday a.m. turned into a very difficult time for my very strong son. I decided to bring him in to the hospital on Monday, ended up staying over Monday night and had many scans, tests, etc. He checked out fine and we were home Tuesday evening, only to have symptoms return and we ended up back at the hospital on Wednesday morning, stayed over Wednesday night, more tests, scans, etc. and finally a spinal tap which ended up providing some clues to our confused doctors. Not pleasant clues but nonetheless, revealed to us that we really need to get started with his new chemo and confirmed that the course of action we were already planning was one that was a promising long-term solution to a nasty and tricky disease. A plan for his short-term discomfort and symptoms was also devised and has kept J.R. doing a lot better since last week. Scary stuff.
So to reward him for all he's been through, we brought him back to the hospital today for another scan and his now-routine day 1 of antibodies and tomorrow will be day 2, chemo. We'll be repeating this "one-two punch" every two weeks for the foreseeable future. Not exactly what the average third grader would be hoping to do over his Spring Vacation week, but if he's less sleepy than he was today, we'll try to do a little Manhattan tomorrow. Addie will be in tow and the weather is supposed to be fantastic, so let's hope we squeak in a little fun! I would love to encourage everyone reading this blog to take that vacation, go on that trip, don't try to be too practical, experience all those magical times because it's impossible to get that time back and it's all we really remember when we look back. I can't wait to start planning. I was eavesdropping on a conversation that J.R. and his buddy Nicholas had in the back seat of my car a couple of weeks ago when Nicholas posed the question, "What was the most happiest day you've ever had?" to which J.R. responded that it was probably in Disneyland last year (and interestingly enough was exactly one year ago today when we were there). It's a great question to ask yourself and/or your children (and you can always remind yourself, as Homer Simpson would put it, "The happiest day of your life so far") and figure out what makes great memories. I wish lots and lots of them to all. I feel strongly that the best is yet to come.
As I step off my soapbox, I wanted to leave you with one last little profound thought that Jim and I have adopted as our latest motto: "Time to Kick Some Butt!" We're convinced that the aforementioned one-two punch is going to do it this time. It's not going to be a walk in the park and it's not going to happen tomorrow but we have a good feeling about this new plan. My friend Sheelah Quinn sent us a little wall-hanging the reads "Faith is the place between where things are and the good things that are sure to come." That's where we are right now.

What's Next

We met last week with JR's team to get his stitches out and to hammer out a new plan of attack. Interestingly enough, the neurosurgeon (Dr. Souweidane) actually took the time, sat in a little office and took JR's stitches out himself. He even went out and got him an apple juice when he said he was thirsty. When we walked into the office, Dr. Souweidane had an MRI scan on the computer screen and JR asked him, "Is that a brain?" to which the Dr. answered, "Yes, in fact, it's YOUR brain." I was a little worried about how JR would feel but went on to ask some great questions and even wondered if those two protruding things in the front were his eyeballs and was fascinated to learn that they were. The scan looked great and JR even wanted to know what it looked like before the operation and the doc was great with him and showed him before and afters, etc. I was relieved that his simple curiosity didn't turn into something that he really didn't want to know. All in all, he did great and they barely shaved any hair this time so you'd never really know that he had stitches.
I also met with the oncology team while JR had some play time in the playroom. He created this huge crab picture that apparently some artist studio in Brooklyn is supposed to add to some big mural. We're supposed to visit the studio possible in May. We're calling JR the guest artist for the day.
The new plan is starting next Wed. (4/2) for an infusion of antibodies, then every two weeks after that, he'll have an infusion of antibodies on Wed. followed by chemo on the following day (Thurs.). So in other words, every 2 weeks, he'll be there for 2days in a row (except the first time he'll only have 1 day). This will last for 4 to 6 months (??) or until something changes. Hopefully he'll be able to handle this as well as he did with the last chemo (doctors seem to think that it should be roughly equivalent). We'll keep close track of blood counts, etc. just like before. The biggest difference to him will be that the chemo will no longer be oral but that's why we have the port. I just hope and pray with all I have that this will do the trick and that it won't be too brutal. Feel free to join me.
We are enjoying a little break in the action right now. JR looks and feels good and even wants to try a little school tomorrow. He's out with the "boyz in the 'hood" playing and running around in the afternoons which helps more than anything else any of us can do for him. I've said it before but fresh air and exercise is huge here. I'm glad that this next phase is starting while the promise of great spring weather is teasing us all. Seeing him (and joining him) out there enjoying himself does great things for my soul, too.
I'll let you know how this routine plays out. I don't expect anything too huge that first day but I am a bit worried about the ongoing schedule. By worried I think I mean panicked. I'm sure he'll be fine but mama just hates to even think about these things, let alone watch him experience them. He just does it, though, all without much fuss. He's the greatest and I mean it! Until next time....

My Boy is Amazing!!

Most of you have heard by now that JR's surgery last Thursday was very successful and that he is recovering at record pace. We are all counting our blessings and couldn't be more thankful to JR's skillful surgeon. Somehow, I think I just totally expected (for a second time now) a perfect outcome and knew it would be alright but I have to admit that fears do find a way of creeping in despite our most profound efforts to keep them out. Low and behold, here I am reporting to everyone that he did great and continues to amaze us all. He hasn't complained, he just goes with it. He had some very understandable anxiety over getting out of bed and walking while he was in the hospital but he has this amazing ability to take a deep breath and really work through his fears. I can physically watch him do it. The trick is to give him his space (without my usual nagging and hurrying) and let it happen. It really is an awesome quality to have. Once he got out of bed and walked once, he's motoring around like nothing ever happened, proud as punch. Talk about proud....Jim and I are bursting.
JR will have some down time and we hope to start having his tutor back shortly and try some academics. We are so lucky that he's a good student and is able to keep up with school. I have to say that while his curriculum is well thought-out, we go through some of the stuff and just by-pass. We just focus on the major important things and don't sweat the small stuff. Actually, we try to do that with everything. Perspective, perspective.
JR's next phase of this battle is kind of brutal and is the hardest for me to face. Again, he'll probably sail through and be fine but I just feel so sad for him. He'll be changing his chemo treatments (unfortunately it won't be oral this time) and going in to Sloan-Kettering either each week or hopefully every other week for the "infusion". While undergoing his surgery, he had a Mediport inserted in his chest so the IV line and the fear of poking around finding a vein will be a lot easier. I had no idea, however, what a serious procedure the port insertion was. So aside from a head full of stitches, he has stitches on his chest and a little bump that will give access for future IV's. He truly does just go with all this if you can believe it. I just hope and pray that this new chemo protocol doesn't make him too ill. It really is the hardest thing to face and I look around at the pediatric floor of the hospital and see a lot of other boys running around feeling fine and I am inspired. It's into the world of the unknown for us. By the way, one lesson I've learned is that each day is a day into the unknown and that anything can happen. Even your wildest dreams.
JR is asking me if we can go out to eat right now (as we did yesterday). Yesterday he ordered about 5 different things and had a couple bites of each. Impossible to say no to those big blue eyes so I must sign off right now and find a good mac n cheese fix. I'll update you shortly but thank you to all for such wonderful notes and deeds.

Back to the Drawing Board

It's amazing how things can turn around in a heartbeat. Since my last posting when everything was looking perfect and the doctors were so happy with his progress, JR has had a setback. Sometime between Jan. 3rd and Feb. 20th, JR's tumor reappeared and has taken us all by surprise. Needless to say, we are all devastated and didn't know what to do with ourselves. JR had to return for many additional tests to confirm our worst fears.
Since learning about this, we have been waiting and worrying. It's time to start over and get back to our "positive thoughts only" mindset. Jim and I met with JR's team last week and were completely shocked when we walked into the meeting and saw his neurosurgeon from his operation last August, Dr. Souweidane. I'll never forget Jim saying to me just before we got there that "I hope they don't recommend surgery for him." But as soon as we saw the surgeon, we knew. The surgery is set for this Thursday, March 6th.
We know that this news is not exactly light. However, after we had time to digest all of this, we were actually relieved. We were expecting to hear that they would be going forward with a more potent chemo (which I imagine will come afterwards) and we were so upset knowing that it might or might not do what it's supposed to do. This way, the surgeon says he can get a little more aggressive with the operation as they have more information about the nature and "center" (as I'll call it) of the mass. Hopefully he'll get a little more of the sort of root system and he'll be at a much bigger advantage when starting the chemo with less tumor to deal with. So it's basically almost like starting over and we are grateful that we actually have the chance to start over.
So it's back to the drawing board with a little extra information and not in emergency mode like the first time around. The knowing and waiting is not pleasant but at least we'll feel a little more prepared.
Anyone with connections to the "big guy" has our permission to pull strings, beg, plead, twist arms, etc. to get past all this ugliness and find out what good is supposed to come of this. It better be huge. We look forward to finding out. Please pray for our son.

We're Still Doing Great!

This is just a quick update to say that we really have very little to report. JR is on his last day of Round 4 (of 10) of his chemo and is doing remarkably well. Most of the time, he starts feeling pretty crummy even after the first day or two, but this time he has been feeling totally normal. I keep asking him if his tummy is OK, etc., but he keeps telling me that it's fine and his appetite has been good. Although I do anticipate that he'll start feeling tired and a little beat up over the next week or so but he doesn't complain of any symptoms, miraculously. He truly is unbelievable. We spent last Thursday at Sloan-Kettering so that the staff could monitor him while he took his chemo because he developed a crazy rash during the last round, but it seems as though the rash was unrelated to his medication. They wanted to make sure that he didn't develop some allergy to the chemo, which he didn't, so all day of sitting around and waiting for something to happen was somewhat unproductive but we were happy with the outcome. Better safe than sorry.
JR has his next MRI a week from Wednesday (Feb. 20th), so PLEASE keep that positive energy radiating!! It's a very difficult thing for Jim and me but of course, JR just lets it roll right off his back. He has overcome his overwhelming fear of the IV line (which he needs to have before the MRI) and is more brave (or braver??!!) than ever going into this process. I think of what a wimp I am when I need to go get a cavity drilled, I tense up and practically pass out each time. Here's JR going to get needles and sit in a noisy, claustrophic imaging machine, having had some very bad experiences getting his IV line and he has trained himself to be calm and brave and told me that he's not afraid of it anymore. It's so inspirational to get courage from your own child. You never know where you'll learn your life lessons. He's my hero!!
I totally believe that this next scan will be fine and I will update all my loyal readers as soon as possible after the scan. Thank you again for taking the time to keep abreast of his progress. Namaste!!

A Sigh of Relief

Hope everyone was able to experience some wonderful and magical moments over the holidays. The kids get so excited, it's nice to think back on our own holidays when we would wake up on Christmas morning and be "wowed". Jim was saying that he and his brother Kevin would lay awake in their bunk beds and swear to each other that they heard Santa's sleigh bells and vow to stay up all night to see him. Somehow he magically slipped in and out during that one brief moment when they must have nodded off into dreamland. Of course we were up later than normal on Christmas Eve, having spent the evening over at Cousin Chris and Andrea's, celebrating Kalle's 4th birthday, having a great meal and coming home to our now traditional Christmas Eve of reading Polar Express, putting out cookies, milk and carrots and sprinkling the reindeer food around outside. All I kept thinking was that for J.R. and Addie, this is their memory to keep and how incredibly precious this time in life is for all of us. Of course it was hard to keep our minds from wandering but it only helped to strengthen our resolve to make this holiday very special.
I try to keep this blog focused on JR as he has had to endure so much more than the rest of us and probably understands a lot more than I realize, but it's difficult to talk about his experiences without including others around him so I do apologize again for the fluff but I'm just so fluffy, what can I say!! (now there's a run-on sentence for you!!) He did mention that he wished that Santa could use his magic and make all of this rotten stuff go away. We are hoping that this has happened as he wished but that we need to keep checking to make sure.
We visited the hospital yesterday (with Kimberly by our side) for another MRI and had the doctors gitty with excitement over his scans - no change from the last MRI and that was the best news we could have ever wished for. It takes me a while to process this good news and I try very hard to keep it all in perspective but can breathe a sigh of relief for now. It's only after this sigh that I realize how incredibly anxious, sad and distracted I get by this and that it is truly wasted energy. It's completely natural but it takes away from what we have. So for each of you reading this, please breathe the same sign of relief and stay positive! He's doing great! He starts his chemo again on the 10th of Jan. and every 4 weeks until the end of July when we reevaluate and see where we go from there! Two places we know we're going from there is Cuttyhunk in August and Hawaii sometime after that, thanks to the Make a Wish Foundation.
2008 is here and is already feels so good. Thank you again for showing your concern for JR and our family and all the wonderful cards, gifts and prayers we got from so many people. You are all helping so much. Happy New Year to all!!

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