Eli

His name was Eli. The little boy who lost his life here early Wednesday morning. We didn’t know him. We had never met him. But we were here. Here at the hospital where he died. In the same area where he had received treatment. Where he had cried out in pain. Where his parents held him through his suffering.

All I knew on Wednesday was that a child had died. As I mentioned in my prior post it was clear that the staff were struggling with something tragic. The air was heavy. People were moving as if they were existing in a surreal state. I didn’t ask any questions but I heard enough throughout the day to garner an idea of what had happened.

As Ben slept through his treatment I sobbed. Even though I didn’t know this child or his family, I felt so many intense emotions. I imagine it’s like how many of you feel for Ben. A lot of you don’t really know him. But you rejoice when he does well and your heart is heavy when he struggles. Personally, I’m grateful for that. I love that Ben has so many supporters. I adore all of you who are pulling for him, praying for him, rallying around him. It’s made the journey easier.  And I’m happy to say that our journey continues. We’re still going strong and Ben has an excellent prognosis.

But not Eli. His earthly life is over.

When Ben and I got back to the Ronald, we went downstairs to the playroom to meet up with Justin. Ben immediately took off to play video games with his buddy. Justin’s mom, Lori, was hanging out with two moms I hadn’t met before. She introduced me to Sara(h) and Chris and I just kind of listened in to what they were talking about. All three of them are in different stages of a new treatment protocol for their kiddos. They’ve all done the 3F8 protocol (been there, done that) and now they are on to yet another treatment plan. I can’t imagine the exhaustion they must be feeling. But worse yet, they all knew Eli and his family. They filled me in a little bit about what had happened.

Apparently, Eli’s therapy had intensified over the last few months and they had been in NYC quite often. I can’t remember where they’re originally from – I want to say some mid-western state. Anyway, there’s a younger sibling involved, so the mom left to go back home on Monday to care for the younger child. Dad stayed here in NYC with his son.

Eli was not expected to pass away.

So, when Sara(h) found out that Eli had passed away on Wednesday morning, she bolted over to the hospital to support Eli’s dad. He met her outside of the room and explained that Eli was still in there. She hugged the dad and then said that she was going in to hug Eli, too. She told us that this was the second time she’d had this experience. Two times that she’s held a kiddo who had passed away. I could not imagine how overwhelming this would be. How tragic. How beautiful. How painful. How monumental.

Sara(h) said that Eli’s dad was well taken care of. Someone had swooped in and was there for him for the aftermath of losing his son. He had a place to go other than back to the Ronald where all the painful reminders of losing his precious son would be staring him in the face. The average person might not realize this, but when you stay at the Ronald, your kiddo is inundated with “stuff”. You get a toy when you check in. Usually, each night, someone hosts a dinner at the house and often times there are “goodies” that come with that… more toys or balloon animals or treats of some sort. You almost always come away with more than you came with. It’s hazardous to that pesky 50 pound weight limit the airlines put on luggage.

But this time, when Eli’s dad goes to the airport, he’ll just have himself to get through security. He won’t have to be stopped and asked to open every single bottle of liquid medicine required to get your kiddo through cancer therapy. He won’t be lugging the 50 extra pounds of goodies that his kiddo picked up at the Ronald. He won’t have to keep that watchful eye out for his son while in the airport. He won’t have to do all the things he might have originally found to be a nuisance but is oh-so-longing to do now that his son is gone.

And his mom. She left here on Monday most likely NOT expecting that she would never see her son alive again. To not be with her son in his final moments. To not hold him as he drew his last breaths. To not cuddle him and sing to him and just simply be with him as she watched the life leave his body. I just cannot stand it. It makes no sense. This has to stop. I’m furious. Heartbroken. Crying. Exhausted.

But we’ll keep going. Despite the loss and the heartache and the pain and misery, we just keep going. Because there are silver linings. There are stories of survival. There are beautiful moments interspersed between the ridiculous. We find ways to cope with the tragedies and push the rest of the bullshit away.

Life is so short, friends. Unfortunately, we’re reminded of this simple fact all the time because cancer keeps death so close in this world of pediatric cancer. But every single one of us is in the same boat. Life is precious. And we need to make the most out of it. If you can’t stop wasting it and start living it, you’re only cheating yourself.

It’s Thesaurus Day!

What a fun holiday today is because I LOVE words!  Today is Peter Mark Roget’s birthday. He was the author of Roget’s Thesaurus. He started writing his collection of synonyms in 1840 and finally published his work in 1852. Since then, it has never been out of print! So… I don’t feel so bad not having finished my assortment of short stories. If it took Dr. Roget 12 years to amass his synonyms, I can take a bit of time for my compilation. I need to get going though. My 12 years are nearly up.

I’m currently at the hospital in NYC with Benjamin. We’re doing day three of round 10 of antibody therapy. Monday stunk pain-wise. Tuesday was very “hive-y”. Today is a mixture of pain and hives – neither of which have been too terrible to handle. It’s nearly four pm (EST) and he’s still sleeping. I’m hoping we get out of here in the next hour or so… he’s got friends to play with back at the Ronald (namely his good friend, Justin).

I’m looking forward to a change of scenery, this little room gets really old after sitting here for hours on end. I did try to pass the time by taping a couple of videos for my new blog project. I taped them on my iPad and uploaded them to youtube but am having a hard time connecting them here. I know I can’t do it from my iPad so I’m going to try from my laptop. Wish me luck.

Today’s vid-log (I don’ t know what you really call them, weblog? vlog? webbyvideo? wideo? I dunno.) was actually hard to do. I kept crying during initial takes because I found out that a kiddo died here this morning. I don’t know who the kiddo was – I didn’t see them – but the air upon our arrival to the hospital this morning was very heavy. The staff was clearly struggling with something. I later learned that a kiddo passed away (the walls are thin here… it’s easy to hear everything, especially when our room is directly in front of the nurse’s station). And it broke my heart. Ben was already sedated and treatment was underway so I broke down and cried my eyes out. I cried for the child who lost their life. I cried for the family that lost their pookie-pie. I cried for the wonderful fact that my son is doing well. It’s so difficult balancing between the dichotomy of heartbreak and elation over the same damn disease. I hate cancer. In fact, I have a big, white butt that it can kiss. After all, I’ve never heard of butt cancer. Colon cancer, sure. But “butt cancer?”. No. It can get as close to my butt as it wants. Kiss away, cancer. You deserve a big “ass-sandwich.”

So, if I ever get my vid-log/wideo/whatever-it-is, to load you’ll see some tears at the end. I’ve decided that I don’t like the facial expressions I make when I cry so I’m just not going to cry anymore. Ever. I’m done. Yeah, right. I’ll probably cry starting in five, four, three, two….

And there I go.

Love to all of you. Take a moment to spread some love, especially to someone who might feel really unloved right now.

It’s Three Kings Day

Three Kings Day commemorates the biblical story of the three kings who followed the bright star of Bethlehem to bring gifts to the Christ child. But since this story gets a lot of press already, let’s talk about Little Kings instead. You know, the delicious cream ale.

Actually, I’m just kidding. I don’t want to talk about that either. The alternate holiday for today is BEAN DAY! And you KNOW I want to talk about that. My Bean. Bean is my nickname for Benjamin. I don’t really know where it came from but one day I called him Bean and it stuck. He went through a small phase of rejecting it but now he fully embraces it. For instance, he’ll state something like “Let the Bean show you how it’s done.” He’s just so stinking cute.

So, hackers did a number on my site recently. Some revamping has had to occur, which is actually a good thing because I haven’t made any changes since starting this blog in 2009. One of the things that I’ve done is write an “About Ben” page that people can click on to learn more about Ben instead of having to read every single entry of my blog. Now, I think it’s a good idea for people to read every single entry, but it’s not fair to newcomers to have to weed through the site to garner information about my fine young son and his battle with cancer. So, the “About Ben” page was born. I sat down and wrote it yesterday. It was exhausting. In thinking back over the chain of events of the past eight years I get a bit misty. Oh, what am I saying? Sometimes I just flat out break down. It’s heartbreaking to relive all that he’s been through. The beautiful thing, though, is that he’s still alive. And he’s doing well. I cannot complain about that.

One of the other things that I want to begin is a video component to my blog. I’m working on that today and hope to have something to post soon. It will be a short entry – about 1 or 2 minutes in length – but I thought it would be fun to mix it up a bit. I love to write but something else that I love to do that I never really realized until recently is do some public speaking. I’m not just a writer. I’m a storyteller. And while I believe I’m a good enough writer to convey emotion and all that jazz in my written posts sometimes it just has to be told. 

So, here’s to a new phase. A new year. A healthier web site. New challenges. Being stronger than we look.

And that’s that. Think about the Bean today. Right now he’s finishing Math at school – his least favorite subject – but I know that if he can get through cancer, he can certainly get through long division.

It’s National Whipped Cream Day

I don’t love whipped cream. Many of you know that I’m not a big fan of dessert so since whipped cream is traditionally a dessert topping, I suppose it goes into the dessert category. Now, I should state that I kinda like it if it’s being shot out of a pressurized can straight into my mouth, but I’m not the kind of girl that asks for it on top of my brownie or ice cream or hot chocolate.

I did have a dog – Stella – who would come running from wherever she was if she heard the top of the whipped cream can come off. I don’t know how she could distinguish that particular “pop” from other lids coming off, but she could. She was a maniac when it came to whipped cream. I would hold the can up high and start a slow, steady stream flowing from the can straight to her mouth. Her puppy lips never touched the nozzle – I can assure you of that – but she would stand underneath the drizzle of sweet, white confection and furiously lap it up. It was quite comical to watch. Oh, how I miss that dog.  She was a super star.

While I don’t love desserts, I’m convinced that it’s a totally appropriate analogy to use in my current situation. My life can be equated to a frivolous dessert. I’m recently divorced, which I’ll call the bowl that holds my delicious concoction together. Being single again holds many freedoms and yet just as many insecurities. We were married for 10 1/2 years, which in dog years equates to nearly 77 years.  So, to get used to all that comes along with being divorced, well, it certainly is an adjustment period. I think I’m absolutely fine from a relationship standpoint – I’m not mourning that, but it is tough to figure out all the logistics of being single again. But I’m building a new life now, one that is suited for me and the children. Bowl=New Life.

Next, I’m moving. I found a SWEET apartment that is close to the kids’ school, has its own garage so I can still do my picture framing, has a dog park for my crazy little pups to run amok in, and then the extra amenities like a swimming pool, work out facility, etc. I’m actually pretty excited about moving and so are the kids. New Environment=Ice Cream

And that’s all I’ve got. I’ve got the bowl and I’ve got the ice cream. Oh, wait. Ben is back on track with his treatment so we’ll call that the butterscotch. Now I’m waiting for the hot fudge, whipped cream and cherry. Actually, I’m working diligently on the hot fudge (an awesome job opportunity) and I’m pretty confident I have the cherry (which I can’t really discuss at this juncture).  I’m definitely going to forgo the nuts. I’ve had enough nuts in my life and have decided that I have a nut allergy. So, no more nuts. I’m still, however, in search of the whipped cream. I know what the whipped cream is… I just have to make it happen. And it will. Eventually.

So, that’s my dessert. It’s coming together. It might not be at the pace I want it to happen, but I know that the timing will work out the way it’s supposed to.

I’m just hoping that my ice cream doesn’t melt while I’m waiting.

I’m running low on disk space…

Every time I turn on my computer it says that I’m running low on disk space. I’m not quite sure what to purge so I just leave it, knowing that my computer is getting slower and more tired and wishing it could just lie on the couch and watch an Arrested Development marathon. Oh, wait. That’s MY wish.

I’ve been doing a large amount of purging lately, not because I’ve decided to become bulimic, but because I’m getting ready to move. The kiddos and I have just a few days left before moving to an apartment down the street. It’s been challenging going through everything and, I have to admit, I’m overcome with waves of emotion. I’ve found old pictures and memories that have opened the floodgates causing me to cry copious amounts of tears. I found some old journals that expressed issues that I was “scared about”, and interestingly enough, they are the same issues that I’m currently “scared about”. Finding a job. Maintaining healthy children. Living life to its fullest. Seems I’m still not settled on the things that were bugging me a few years ago… when will that change? When will life be a dull, boring, gloriously wonderful NORMAL? I suppose if that were truly the case I would have nothing to write about.

So, in the meantime, I’ll just live each day knowing that I’ll somehow make it through. And that I’ll be better for it eventually. I am proud of myself today… I joined three writer’s groups. All three of them are local so I can take some time out and get to know the industry that I’ve been longing to be a part of. I decided that 2012 is the year I get published. My good friend, Joe, said that 2012 is “THE YEAR OF THE SARAH”. Who am I to say no to that? It’s technically the Year of the Dragon, but I’m totally okay with changing it to the Year of Me. And to be a published writer? That would be awesome. The next step will be to be a “well-received published author”, followed by “National best-selling author”… and so on. I’m looking forward to my new life. It’s gonna rock.

Some of you might be wondering, “Hey! What’s going on with the Bean?” Here’s a quick update: The chemo that Ben received did its job and knocked down his HAMA to a point where we can resume treatment in NYC. The next trip will take place in two weeks. We haven’t been since August so it will be a small challenge getting back into the swing of things.

This will be a bittersweet trip because we just lost another dear friend from the Ronald McDonald House a couple of days ago. Her family lived there for as long as we have been traveling to NYC. Her name was Ashlynn. We did visit with her on our last trip in August. Ben and I went to the Jersey Shore with her and her mother. We played on the beach all day. She was a beautiful, sweet soul and it’s so hard to wrap my head around the concept that they won’t be there when we go back. This has happened way too much over the past year – so many little friends have died. And, unfortunately, there’s always another family ready to take their place. Cancer doesn’t care. It just keeps taking. And while I look forward to meeting new people, this is never the right circumstance. All I can do is be me. Continue to make the bonds with these families. Love them like they love us. Mourn when there’s a loss. Move on as each day begs us to do with the memories that we were so wonderfully given. The lesson of learning to LIVE even when we’re so blatantly faced with death. It’s so not fair. But, unfortunately, even though it is The Year of the Sarah, I cannot change any of it.

The Year of the Sarah should come with a special set of super powers, but, alas, it did not. For now, we just have to live with cancer being a yucky old bastard. Hopefully, eventually, it will run low on disk space. It will grow slow and cluttered and not have the energy to consume any more lives. Especially the kiddos.