It’s “Junk Food Day”

Oh, I love this day. As I type this I’m wrangling a can of sour cream and onion Pringles (the ones in the green can) from my son. I know… cut the kid some slack. Right?

Potato chips are my vice. Ultimately, I like them to be substantial in shape and texture but that doesn’t mean I’ll turn down a yellow bag of Lay’s. They are my least favorite, but, hey, they’re still chips. Beggars can’t be choosers when we’re talking about potatoes fried in oil to create a crispy, crunchy, greasy treat.

My very favorite chip in the whole wide world is the now-defunct “O’Grady’s Au Gratin” chips. They existed solely in the 80’s and Frito Lay stopped manufacturing them after only a few glorious years of production. O’Grady’s were thick, deeply ridged, and covered in a delectable orange powder that they labeled as “au gratin” flavoring. They were flipping delicious. I’m not sure why they disappeared like a hillbilly chasing a UFO but for whatever reason, they’re gone.

Some people mourn the passing of JFK. Others get caught up in the glory days of their youth. I mourn the disappearance of O’Grady’s Au Gratin potato chips. I know, it’s time to move on. However, I might check eBay to see if there’s still a 20 year old bag of chips floating around out there. I’d definitely buy them. And I’d fight to the death like a hyena on the Serengeti if anyone tried to take them from me.

My son, Ben, is also a fan of chips. As explained earlier, he’s big into the Pringles in the Green Can. He also loves Cheetos. When he was a toddler and first diagnosed with Neuroblastoma, he would eat Cheetos with a fork. Of course, I have a picture:

P2270125This was right after his broviac catheter was placed (the tubies dangling from his chest). He wanted Cheetos in a bowl with a fork. Who were we to deny him that?

Foods with strong flavors are what Ben enjoys most. I’m not sure if this is an aftereffect of the chemotherapy or if he just takes after his mother. I guess we’ll see what food he’s interested in this time around. Boy, that makes me mad. Having to think about him going through this again just burns my bottom.

Speaking of treatment, we do have some more news. Ben will be getting his port placed tomorrow evening. We’ll check in at 3:30 PM and surgery is “scheduled” for 5:30 PM. No eating after 9:30 AM. Yuck. But we’ll get this part out of the way and be ready for chemo next week. Back at war. Getting our armor on. I should have bought that chainmail outfit at the Renaissance Festival after all.

180px-Woman_wearing_chainmailSadly, this is not a photo of yours truly. And since my husband isn’t home to help me with the “technical stuff” on the computer I wasn’t sure how to insert my face into this photo. Oh well. It’s still kinda funny. I do sorta want one of these. I wonder if it comes in any other colors?

All “strange sense of humor” aside, we’re getting ready to kick some cancer butt. Actually, Ben had a giant wad of bubblegum in his mouth earlier today. As he was chewing it, he said “I’m here to do two things. Chew bubblegum and kick some butt.” Then he spit out his gum and said, “And I’m all out of bubblegum.” I’m going to video tape him saying this but encourage him to say “kick some cancer butt”. It will be our mantra.

More tomorrow. 🙂

It’s “Moon Day” but I’m not going to talk about that….

Here’s the scoop on the Bean (he’s recently asked me to stop calling him this but I didn’t think my readers would mind):

Dr. Greffe called to say that he’s consulted with Dr. Maris at Children’s Hospital of Philadelpia (CHoP), Dr. Matthay in San Francisco, and Dr. Cohn in Chicago. They are all Neuroblastoma experts. They concur with Dr. Greffe’s plan to give Ben two rounds of chemo, scan to see if the tumor has responded, and then possible resection of the tumor after these two initial rounds of therapy.

Ben will receive a port sometime this week (which is an outpatient procedure). A port is much easier to care for than a broviac, which is what he had before. With a port he’ll be able to bathe, swim, and won’t have to fight with the dangling “tubies”, which can be quite hazardous (easy to pull out of the chest and greater chance for infection). We are also going to set up a time to harvest some more of his stem cells because a lot of the therapy we’ve been hearing about requires using clean cells. We know his marrow clean at this point, we might as well get them while the gettin’s good.

Then, on Monday, July 27, Ben will begin chemotherapy on an outpatient basis. He’ll spend 1/2 day in the hospital receiving a chemo cocktail of topotecan and cyclophosphamide for five days in a row. We can go home each day after he’s finished (I’m glad we live fairly close to the hospital!). Then he’ll have approximately two weeks of rest. He should, if he’s up to it, be able to attend school. He is going to miss his first day of third grade, which is next week (July 28 – we’re on year round schedules here). He will lose his hair again and might even stop his menstrual cycle (yes, my odd attempt at humor). Same old side effects as last time: hair loss, sterility, secondary cancers… all that “fun” stuff. Oh, yeah. We’ll have to give him shots in between his chemo treatments, too. I can tell you I didn’t love giving Ben shots when he was 2 1/2, I’m sure it won’t be much fun to do that to him at age 8.

There are currently NO studies in the Children’s Oncology Group  (COG) that Ben would be eligible for. He is a “strange case” in that he relapsed so late after initial therapy. So there’s not a lot of research to go on. After this initial bit of treatment is done we might look into antibody studies at Sloan-Kettering in New York City or at St. Jude in Tennessee. It all depends on how he responds. I don’t care about the travel. I’ll pull him in a wagon if that’s the only way to get there. However, if anyone has access to a corporate jet – please look to see if you offer “angel flights”. I’d really rather not walk that far.

So. We have a plan. At least for the next little bit. We just told Ben and he honestly did not register any emotions that could be labeled as “sad”. As soon as we explained catheter surgery, chemo, hair loss, missing that first day of school, shots, he jumped up off the couch and started playing with Madeline again. I’m trying to learn from him, but I just haven’t found that groove. I’m worried. I’m mad. I’m heartbroken. I’m panicking. Occasionally hyperventilating. But we’ll get him through this. And we’ll be okay. We all will.

Thank you for all your love, prayers, and support. I sincerely appreciate all of you.

Love,

Sarah

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It’s “Yellow Pig Day”

Okie dokie. I had to look this up because I’ve never heard of a yellow pig, let alone celebrate its National holiday. Here’s what I found:

The Yellow Pig was the brainstorm of mathematicians Michael Spivak and David C. Kelly in the early 1960’s. They were students at Princeton University, studying mathematics. History was made as they were listing interesting properties of the number 17 (can you imagine the interesting properties!?). During this thought wave, the yellow pig was born. Most likely, it had 17 toes, 17 teeth, 17 eyelashes, etc. The yellow pig and the number 17 have been linked ever since.

It still means nothing to me. But I’m reminded of my years at Ohio University and how I avoided at all costs any sort of math class. I had to take a couple of math courses just to fulfill basic requirements but I put it off until my fifth year. Yes, I enjoyed school so much I extended my studies an extra year. Just kidding. That extra year is what happens to a kid who starts out as a photography major and switches to social work right in the middle of everything. I never said I was decisive.

Yellow pigs. I’m just not coming up with anything. So I guess I’ll just talk about social work instead. I earned my bachelor’s degree in 1991 and got a job working for one of the mental health facilities in downtown Columbus, Ohio. I was a caseworker for the extended care treatment team, which meant the clients I was working with had been institutionalized for many years. Nearly all of them were schizophrenic. My job was to work with these people while they were in the hospital, help them learn basic living skills, find them a place to live in the community, and then follow up – either with daily medication, doctors visits, or whatever they needed. I thought I was quite the expert on mental illness at my tender age of 22 thanks to my family history, but I had no idea what I’d be up against. And just how much I would learn over the next two years.

My first week on the job was spent shadowing an incredible woman named Joetta. I love this woman. Actually, she is the person I most admire in this whole wide world. She was my mentor then and continues to be to this day – even though I don’t talk with her as much as I’d like. Anyway, she introduced me to many of her clients during my first week on the job. We went over case notes, histories of patients, things I just never even began to learn about at Ohio University. We talked about which clients would eventually be transferred to me – and how they would most likely react to this change. Many of them were just fine with their freshly-minted case worker, while others were less than excited to deal with someone as “green” as I was.

My second week on the job, one of my team members called off sick. During our regularly scheduled morning meeting I was waiting to be assigned to shadow someone. When nobody grabbed me to join them on their rounds I asked what I was supposed to do. Filing? Reviewing Notes? Signing up for employee benefits? Um, no. They threw me to the wolves. I had to take over for my ailing colleague.

As I was mapping out directions to the clients’ houses, (these were the days before Mapquest and Google) one of my co-workers looked over my list. He looked at the first name and said “Your first visit is a lady who needs to come to the downtown office for a doctor’s appointment. Pick her up and bring her in.” Easy enough, I thought to myself. I grabbed my briefcase, my company issued car phone (which was nearly as big as a yellow pig – this was 1991 after all) and listened to the faint mumblings of my co-workers as I was leaving the building. I thought I heard one of them say “She won’t be “green” after dealing with Milly*.” Whatever. I was educated. I knew what I was doing. Get out of my way. (*Name changed to protect patient confidentiality.)

I arrived at Milly’s house about a 1/2 hour later. I had to psych myself up. “Just go pick her up. No big deal. Introduce yourself, tell her you’ll take her to the appointment, make some small talk! Get to know her a little bit! You can do this!” I knocked on the door. No answer. I knocked harder. Still no answer. I knocked again. I heard a booming voice saying “get the H*LL off my property”. Ummm, Ok. Not what I was expecting. So I said through the door, “Milly. I’m the new caseworker. I’m here to take you to your appointment.” I heard some locks clicking… not sure if they were locking or unlocking… but I pasted a smile on my face and was ready to meet Milly. She opened the door. And much to my utter surprise, she was completely naked. Ummmm, Ok. Again, not what I was expecting. She didn’t exactly invite me in and I wasn’t sure I even wanted to go in. But I kept that silly smile pasted to my face as I scrambled for something to say. “I see your not quite ready for today’s appointment,” I said through my thin smile. She then told me that she wasn’t going and I couldn’t make her. Fair enough.

I stepped outside of her apartment and called for backup. After what seemed to be only 1/2 a ring, my supervisor back at the office picked up. I could swear they were choking back laughter in the background. It seemed that they were expecting my call and before I could squeek out what my issue was, they asked “is she naked?” STINKERS!  So not funny. It’s not that they were making fun of Milly – the people I worked with were some of the most compassionate people I’ve ever met. But they were teaching me that there is no “routine” to this particular job and that even though they could usually count on Milly being completely naked when answering her door, I had to learn to roll with whatever came my way. Boy, did I ever learn. After about an hour of pleading with naked Milly – and finally helping her into some clothes – we got her to her appointment.

Over the next couple of years, I dealt with some interesting stuff.  I was called names. I was hit on the head. I was argued with and cursed at and called out in the middle of the night when a client was having a tough time dealing. I cleaned up after bar fights. I taught one guy how to make sloppy joes. Some of my clients died. One was hit by a car. One overdosed. One was murdered. It was anything but an easy job. And it paid about $9 an hour. Plus mileage.

This population was extremely challenging to deal with but I learned so much. I learned a lot about compassion. I learned an incredible amount about myself. I am blessed, because I don’t have to contend with hearing voices in my head or experiencing terrifying visual hallucinations on a daily – even hourly – basis. I’m accepted. I’m loved. Often times, these people are not. And I believe that being accepted and loved no matter what is a basic human right.

My clients came to enjoy their time with me. It wasn’t all work, we would do fun activities as well (I wouldn’t recommend taking more than three schizophrenics to a movie theater though – another story for another time). And when I was diagnosed with cancer in 1993 and had to leave my job for treatment, my clients cried right along with me.

I look back on my time as a social worker with great fondness. I do miss my clients. Sometimes I still cry for some of them – especially those who just never seemed to catch a break. They taught me so much and I’m eternally grateful to them. But it was such a difficult job.

Would I ever go back to being a social worker again? Perhaps. When Yellow Pigs fly.

Today is absolutely nothing.

Thursday, July 16 is completely open to anyone who’d like to suggest a National Holiday.

I’m going to suggest National Butter Day. It might already exist in some other month, but until I come across it, I’m picking today to celebrate.

It’s the time of year for festivals and street fairs, which makes me think of Ohio. There was always something going on… the Pataskala Street Fair, Reynoldsburg Tomato Festival (YAY!) Kirkersville Pigeon Swamp Festival, Millersport Sweet Corn Festival, Sherman’s March on Lancaster… oh wait, that was Atlanta. And then, what used to be the Grandaddy of Central Ohio Summer – at least to me – the Ohio State Fair. Back in the 70’s I would long for this two week extravaganza of cotton candy, riding the air-tram-thingy from one end of the fairgrounds to the other, and seeing such incredible acts as Donny and Marie, the Bay City Rollers, Mac Davis… the list goes on. The 70’s. Who can get enough? Not me.

So the Ohio State Fair was the first place that I ever saw a “butter” anything. After wandering through the tents with the freakishly large tomatoes and squash that looked like Richard Nixon, I happened upon a life-sized statue of a cow – completely made of butter. The butter displays got better as you moved through the queue… culminating in a life-size statue of Bobby Rahal. Honestly. A Butter Bobby Rahal.

I want to know who thought of using butter as an artistic medium. Did they just run out of pastels one day and had copious amounts of butter on hand? And why Bobby Rahal? Are there rules as to who can have a butter statue in their likeness? Like the United States Post Office requires a celebrity to be dead for 10 years before they can have a stamp honoring them? Does the candidate need to have high cholesterol? Butter churning skills? One who just says no to “I can’t believe it’s not butter”? Fabio could never have his own butter statue. But the bird who smacked him in the nose on that roller coaster ride could have his likeness immortalized in butter.

Alas, a butter statue can’t last for long, can it? If I ever made a statue of a butter anything, I’d make it of the Wicked Witch from the Wizard of Oz. That way, as I watch it dissolve into a buttery pool on the floor I can say “I’m melting. I’m melting.”

Oh, who cares about butter statues? This is what happens to my mind when it is terribly stressed out – like it is currently. My Ben. The bad news is that he has relapsed. But the good news is as follows: his blood counts were completely normal (meaning his white cells weren’t trying to fight anything in his system). His urine test came back completely fine (meaning that there doesn’t appear to be much tumor activity – before we could always tell what was going on with his disease by a simple urine test). His MIBG scan showed NOTHING (an MIBG specifically picks up Neuroblastoma cells). His bone marrow biopsy is clean (meaning there’s no metastatic disease at this time). All results point to a healthy Ben with the exception of that nasty little tumor hanging out in his chest cavity. AAaaaaarrrrrgghhhh! So flipping frustrating.

As I write this, Ben is asking if he can wear the same clothes he wore yesterday. If he didn’t have healing wounds that needed to have a germ-free environment, I’d tell him to go for it. But I’m playing the heavy and making him change into something fresh. I guess I’ll go do that, too. I’m kinda stinky myself. Stress will do that to you.

OK, enjoy today and whatever holiday you choose to celebrate. You don’t have to go with my butter holiday, but I’m in the mood for extra butter. I don’t have it all that often, but every once in a while it’s just good to be all buttered up.

More when my mental status allows… 🙂

It’s “National Nude Day” and “Pandemonium Day”

Awww, man! It’s National Nude Day. And I have to take Ben to the hospital for a bone marrow biopsy. He’ll most likely be nude during this procedure, but that doesn’t help me any. I like being naked, however, I don’t think I have the guts to go to Children’s Hospital in my birthday suit. That would, in all likelihood, cause great pandemonium.

On the plus side, I officially weigh less than my driver’s license states. This would probably make my nakedness easier on any innocent bystander’s eyes, but, then again, I have that crazy paleness factor working against me. Darn. I guess I’ll just keep my clothes on. I will have to live vicariously through any friends celebrating this holiday. Post pictures!

Pandemonium. Hell. John Milton, in his epic poem, Paradise Lost, named the capital of Hell “Pandemonium”. It fits. I think I’m currently living there. After all, it’s been incredibly hot here in the Denver area, and given my current situation, it makes total sense. I am in Hell. No wonder I like being naked.

You’ll have to forgive my mental illness. I’m working on minimal sleep. I didn’t have much trouble going to sleep but staying asleep is very difficult. The “what if’s” wake me up. I’m kinda mad at God right now so I don’t feel I have the right to yell at Him only to turn around and ask Him for help in soothing the “what if’s”. I know I cannot control ANY of this. All I can do is support my Ben. Continue to be Madeline’s mom. Struggle against my homicidal tendencies regarding the rest of the world.

In a few hours, Ben will have a bone marrow biopsy. This procedure entails taking an evil corkscrew looking device and going into what I like to call the “butt dimples”. They will use this instrument to take out a cross section of bone from his pelvis. In doing this, they will learn if Ben has disease in his bone marrow. We DON’T want disease in his marrow. Heck, we don’t want disease at all. But disease in his marrow will be particularly bad. So, there you have it. Can you blame me for not being able to sleep? Frick. I hate this.

All right. you must promise me that if you celebrate “National Nude Day” that you will tell me all about it. As for the Pandemonium, I’ll save you from it and take it all myself.

Love, hugs, and no pandemonium. More tomorrow. 🙂

A Life Worth Living…

I am “bad mood mom” right now. I have my eyes closed and my fingers are furiously tapping on my little keyboard here… letting it all come out. What will come out? I don’t know. Reminds me of that George Carlin skit about things left in the refrigerator too long – could be meat, could be cake – it’s totally up in the air.

I am completely floored. My Ben has relapsed. For those of you who have children I’m sure you can recall those early days when it wasn’t difficult to pass hours just gazing into their little faces. I remember just days after he was born I was sitting in a chair holding him on my lap, staring at that sweet little super serious face. His little brow perpetually crinkled in that “what the hell is going on here” expression. Seriously. He was born a wise old man. I’ll post a picture to prove it.

Ben Birthday17See? Anyway, I was holding him, gazing at his amazing little face when that Stevie Wonder song “For Once in My Life” came on the radio.

For once in my life I have someone who needs me. I have someone who loves me. I’m not alone anymore.

These are just snippets of the lyrics. And even though I knew this song well enough to sing along, this time the lyrics just slapped me upside the head. My Ben. Someone who needs me. Someone who loves me. I’m not alone anymore. Ben was my gift. Ben was my first glimpse into the wonderfulness of what “family” was supposed to be. I did not grow up with reasonable family relationships. I had no idea of what “family” was. By the time I was 12 my mom was off pursuing her next husband who didn’t want to marry her until I was 18 because he didn’t want to assume guardianship of me. They were eventually married – one month after I turned 18. My sister was seven years older than me, which wasn’t really conducive to any sort of bonding. My biological father remarried a woman (who ultimately committed suicide when I was 18) and chose to not have anything to do with me. My step-siblings tortured me. One of them on a daily basis – to the point where she was kicked out of the house once her dastardly deeds were discovered. Family. Not my thing. But here I am – a mother – and completely clueless as to how to lovingly raise this child. But I was going to do it. I had the handbook on how NOT to do it, I would just do everything polar opposite of what I’d learned.

I thought I was doing a pretty good job.

So WHY is this beautiful child, who I love with my entire heart, being dangled in front of me? Sometimes I hear what I think is God saying “Here he is… he’s wonderful… but you can’t have him.” WHY AM I BEING THREATENED WITH LOSING HIM AGAIN? I thought we were in the clear. I thought that after that first tortuous treatment protocol he went through that he was going to BEAT this. Do you know how many kids survive relapsed Neuroblastoma? This disease is so awful. When neuroblastoma comes back it’s just saying “HaHa! I’m resistant to treatment and you won’t beat me this time.”

When a child is diagnosed with high risk neuroblastoma the treatment protocol is to throw absolutely every treatment available at these kids. Ben had powerful chemo cocktails, surgeries, bone marrow transplant, radiation, oral chemo and antibody therapy… everything that his little body could take. And he beat it. But now the cancer has learned. It’s stronger. It’ll be harder to beat. And we’re tired. How do we stand up to something that is simply unreasonable? And Ben understands now. When he was first diagnosed he was just a toddler. But now he knows. He understands. How am I supposed to parent that?

What happened to my basic parental right of being able to kiss a boo-boo and make it all better? Cancer screwed me. I already had to overcome adversity in making sure this little man had a fighting chance at life. WHAT DO I DO NOW?

Keep fighting. Keep loving him and letting him know that he saved me. Let him know that he made MY life one worth living. And let him know I’m going to do absolutely everything I can to make sure he gets a chance to live his.

Ben Update

Okay, so I’ll probably be taking a small break from my National Holidays posting until we get Ben’s results. I missed National Sugar Cookie Day, which was also my birthday, and then today was Teddy Bear Picnic day. I wouldn’t have had much to say about that anyway.

I had planned to do a whole picture collage of baby photos on my birthday. Luckily for all of you, I had other things on my mind. So, I’ll just post one baby pic.

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I’m not quite sure what was going on with my hair. I’m reminded of one of those troll heads you place on the top of a pencil and when you spin the pencil briskly between your hands the hair gets all crazy. Man, I had a gigantic head.

So, here’s the Ben Update that I sent out to my email list:

Ben was sprung from the hospital around noon today. He tolerated the procedure very well. We do NOT have any results at this time. PLEASE KEEP PRAYING THAT THIS IS NOTHING!!

Originally, they had fit him on to the emergency surgery schedule for about 7 PM. Then they called and moved it up to 6 PM with check-in at 4 PM. We had taken Ben to IHOP for brunch since he couldn’t eat after 11 AM. We finished up there at 10:55. We’re rule followers when it comes to hospital stuff.
When we arrived at 4 PM, the nurses told us that he probably wouldn’t go into surgery until 8 PM. My mouth was getting ready to blurt out “So why did you have us come extra early?” but I decided against it. Ben had his DSi to play so he ultimately didn’t care about waiting. His main gripe was about being hungry.
The surgeon came in to explain what he’d be doing. His original plan was to go through Ben’s back to get to the mass but he decided after further review to go through Ben’s side. Plus, he would be able to do a laproscopic procedure, which is much less invasive. One of the main problems would be that they would have to partially collapse his lung to get to the mass. This is where my brain started doing that super loud humming. Yes, I heard what he said, but there was a tremendous amount of feedback that was hurting my ears.
Finally, at about 8:30 PM, they were ready for him. They gave us “bunny suits” to wear down to the OR. Unfortunately, I did not capture this Kodak moment. With the two of us playing wingman, we steered Ben’s bed down the hall. He didn’t seem overly nervous because Dad was making him giggle the entire time. The OR was extremely bright and the staff was ready to go (and Heather, just for your reassurance, he was NOT in “OR 8”). Ben climbed over from his bed to the operating table without any fear. He told the anesthesiologist that he wanted his mask to smell like “Skittles”. They placed the mask over his sweet little face, started asking him questions about his pets, and within seconds he was out. Actually, he was trying to tell the doctors that his dog, Stella, was not black. What he actually said was “Stella is not bla…bla…bla…bla….” Then total Z’s. With a peck on the cheek from each of us and a couple of extra prayers thrown in, we left him in capable hands.
Out of solidarity for Ben, we hadn’t eaten since 11 AM either. So we left the hospital to grab some Chinese nearby. When we came out of the restaurant it was raining. I am always soothed by rain. I’m sure I’m one of the only people in the world that says “YAY!” when it rains. So, I was thrilled to feel the drops on my head and the sensation as it ran down my skin. God was telling me something: to relax – that Ben will be OK – that the Rockies would make it to the World Series again… it was something positive. And I sincerely appreciated it.
Back at the hospital, we delved into our own electronic gizmos to pass the time. When the surgeon came out to tell us that they were all finished, it was such a relief. Ben had done well. They had placed a chest tube in during the procedure but they’d already taken it out and after they completed one more chest x-ray we’d be able to go back to see him. YAY! He was so stinking cute when we got back to PACU. He was awake but very groggy. He was holding a juice box that was slowly tilting to the side. I grabbed it before it fell over completely and spilled any further. They asked him if he knew who I was and he said in his sweet little voice, “That’s my mom.” Oh, I just love this kid.
They moved him to room 910 rather quickly since he was doing so well. We got upstairs around midnight. Ben was sleeping comfortably thanks to copious amounts of morphine. I cried a bit more (my eyelids are actually chapped from crying so much) and finally fell asleep a couple of hours later.
Ben had a bit of nausea this morning, which is not surprising since he’d had anesthetic. After a few episodes of throwing up, he was just fine. My dear friends Barb and Carol came to visit. Matt was with Ben as he was getting another chest x-ray and I was still asleep when they came in. Opening my eyes to these particular visitors was a gift from God. They hung out for a little bit, brought Ben a gift, and brought me so much comfort. Thank you, ladies. I love you both so much.
As for the rest of you, I am amazed by the amount of outreach you’ve exhibited over the last 48 hours. I’m completely blown away by the love, prayers, and offers of support. My plan is to not need anything out of the ordinary. I know you’re all praying for that. However, it is more than comforting to know that you’re all out there, ready to jump in. It’s a true gift from God.
As I’m typing this update, Ben is downstairs resting. He’s watching cartoons, has eaten his dinner, and just told Matt “I wish I didn’t have to go through all of this.”
Me, too, my beautiful son. Me, too.
I’ll give updates as I get information.
So, there you have it. No matter what the results are, I will continue to update this particular site. If not with Ben Updates, then it will be my National Holiday stuff. Maybe I’ll combine them. Writing is the best outlet for me.
Ben has decided that he wants to take over his old website as well as post videos that he’s taken with the video camera he got for his birthday. I’ll let you know when that’s up and running.
I’m planning to sleep a lot tomorrow so in case I don’t get to it, tomorrow is “Cheer Up the Lonely Day”. Do your part.
More soon. 🙂
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Looks like I picked the wrong week to stop swearing….

I’ve been trying really hard lately to stop using curse words. I’ve done lots of wrong things in my life but I’m convinced that my on-going usage of expletives will be my ultimate downfall. I will try to abstain from usage here in my post.

F*%$.

Sorry. See, I’m sitting here, typing, listening to my son play a video game in the background. He occasionally makes comments, like  “darn it” or “Awww!”. I can tell by these comments that he’s struggling with a particular passage in his video game. I’m sure that he will ultimately inherit my potty mouth someday.

I just learned a couple of hours ago that my son, Ben, has a mass growing behind his heart, under his scapula, near a rib. His oncologist, Dr. Greffe, says that it may be recurring neuroblastoma. Then again, it might not. We won’t know until a biopsy is completed. We just heard from the surgeon about 20 minutes ago and Ben is scheduled for biopsy tomorrow evening at approximately 7 PM. They ain’t playin’ around with this. The surgeon who reviewed Ben’s CT scan said that the mass may have some bone involvement. This is not good news. However, I’m hoping for the best. I have to admit though, I’m kinda losing my faith here. Just when I need it most.

My daughter is currently staring at me. “Mommy. Your eyes are all red.” Because I’ve been crying hysterically for the past few hours and dodging the “What’s wrong, mommy?” questions. If we have to go through this again, if we have to restart treatment, we’re probably looking at having to travel to other hospitals. Most likely, we’ll end up going to Sloan-Kettering in NYC. I know, I’m jumping ahead, but I am trying to sort all of this out in my head. Of course, my old “followers” of the original “Ben Update” knows that I find writing like this quite cathartic (in conjunction with a string of expletives). I’ll post daily what’s going on in our lives – good, bad, and ugly. I’m kinda hoping that I can just go back to writing about what National holiday it is.

What am I going to do? How will I explain this to Ben? Why did I say things like “Ben, we don’t have to come back to the hospital for another year.” WHY??? We bought an ice cream cake to celebrate. It’s sitting on the counter melting. I was so flipping confident today. I wholeheartedly believed that Ben would be declared to have no evidence of disease (NED is the acronym for this). The preliminary reports were positive. I was just waiting for the official “good news”. I clearly didn’t see this coming. I got kung-fu’d right in the head.

How do I look into those big brown eyes and tell my son that a surgeon is going to dig into his back tomorrow? That they’re trying to rule out recurrent cancer? How do I leave my daughter with other families because she cannot stay with us at the hospital? Where am I going to find these families? Knowing what I know now, well, what can I say?

F*#%.

I know you’re all praying for Ben. Please pray for me, too, because I’m just not finding the strength to do it right now.

It’s “Video Game Day”

Boy. This is Ben’s day. My son lives and breathes video games.

Ben was 2 1/2 when he was diagnosed with neuroblastoma, stage IV. He was in treatment from February, 2004 to June, 2005. I’d say that 90% of that time was inpatient at Children’s Hospital. I’d also say that more than 3/4 of that inpatient time was spent in bed. Ben’s oncologist said that Ben was receiving some of the strongest chemo possible for a human, let alone a child. This kid had anything but normal toddler years.

There were only so many videos that would entertain him. Ben was really into Thomas the Train at that time of his life and I think we had every single Thomas video ever produced. I can still recall many of the stories by heart. Ben knew every single character. But it only went so far. Even Ben got bored with Thomas (yay!).

We had a Nintendo Game Cube that we always brought to the hospital. The Legend of Zelda and Pac Man World were Ben’s favorites. Dad would lay on the bed with him, running wires from the TV to the bed, making the doctors do the limbo every time they came in to check on Ben. They’d spend hours playing games. When Ben wasn’t feeling well enough, he’d watch Matt play games. I know it was something for Ben to hold on to, something to help him forget that he was laying in a hospital bed. He couldn’t get up and play. He couldn’t get out and make friends. It was his only escape.

When Ben was in transplant he would hold his controller for hours. He didn’t play, he just held it. The music from the video game would play on a constant loop. He was on a constant morphine drip during transplant, and trust me, he’d get very cranky if we attempted to turn it off when we thought he was asleep (I liked to call this “Morphine Meltdown”). His sweet little brow would crinkle in disdain as he tried to shout at us because we were messing up his game. His words just came out as gurgles because his mouth was destroyed by sores. We just let the music play over and over, and never tried to take the controller from his hands.

I can’t do this today. My Ben has scans in exactly one hour to see if his cancer has returned or if he has maintained his no evidence of disease status. If all of his scans are clear we’ll move to annual scans. We are incredibly blessed to have our son. He is doing well. I KNOW he’s doing well. And I think that it’s totally appropriate for Ben to have scans today – on his very favorite day – because it’s HIS day.

I love you, Ben. Praying that you’re well, little man. Knowing that you are.

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It’s “Chocolate Day”

Have it for breakfast, lunch AND dinner. Why not? It’s a special day.

Madeline and I just had our weekly day of beauty (every Sunday) and we gave ourselves chocolate facials. As I was applying hers I reminded her that it’s not REAL chocolate and she shouldn’t eat it. “But mommy, it smells like real chocolate.” I looked into her eyes, surrounded by brown goo, and said sternly, “But it’s not REAL chocolate”. Just moments later as I was applying my own chocolate mask, I heard spitting noises coming from her direction. “Ick. Mommy, you were right. It’s not real chocolate.” Live and learn.

When Ben was in treatment he didn’t eat a real meal for 15 months. After his first round of chemo he got terrible mouth sores. The inside of his sweet little mouth was riddled with what looked like the aftermath of a land mine blowing up. It was heinous. So, the kid didn’t eat. He was on daily IV nutrition instead. Occasionally, he would be having a mouth sore-free day and would request chocolate. In Ben-speak, it was “chockwat”. He’s had a terrible time with “L’s”, which is tough for a kid who likes chocolate, Lego’s, and his sister “Madeline”. That was the best, though, he called her “Mad-e-win”. Thinking of him calling her that still makes my heart melt like a Hershey bar left out in the sun.

Speaking of Hershey, my sister used to live there. She moved to Pennsylvania to pursue a love interest. Once they got married, they moved to a house in Hershey, PA. It was right across the street from Hershey Park, which is actually a very cool amusement park. The whole town smelled like chocolate. I think it was a nice place to visit but I don’t know if I could handle that smell every day coupled with the noise from the amusement park during the summer. However, we’ll do crazy things when we’re in love – even tolerate screaming on a daily basis.

The main street in Hershey is lined with streetlights fashioned as Hershey Kisses. The local residents actually call this the “Hershey Highway”. I still can’t get over that. Sadly, Cassi doesn’t live in Hershey anymore. They moved to Hummelstown. I’ve not been there yet, but I’m hoping they don’t have those freaky little Hummel kids all over the place. Along with the Precious Moments figurines, Hummels are things that my nightmares are made of. And clowns. Oooh, and ticks, too. Creepy.

When I was a kid, I loved walking down to the carry-out in Kirkersville with my allowance. I got a dollar each week for cleaning out the cat litter box. With that dollar I could get four candy bars – or actually three candy bars and a bunch of Swedish Fish. I’d be set for the week. They’d give me my brown paper bag with my treasure trove of candy. I would take it all to my secret hiding place – a tiny area wedged between two dressers – complete with a beanbag chair, diary, Judy Blume books, etc. I loved that space. I wish I had something like it today.

My friend, Tracey, is from England. She swears that American chocolate is disgusting. She’s not impressed with Hershey’s. She says that Cadbury’s is so much better. I point out that we, too, have Cadbury’s here in the Land of the Free and Home of the Brave. “It’s FAKE!”, she says. And, apparently, she is correct. Much to my surprise, I learned that Hershey owns America’s Cadbury. So American Cadbury is really just Hershey chocolate dressed in a different outfit. We are frauds!

Fine. I’m done talking about chocolate, for Ben just came up behind me, put his hands on my waist and said “You’re squishy.” Thanks, kid. Guess I’ll skip that chocolate after all.

More tomorrow 🙂

Mmmm. Chocolate.