It’s National “Bagels and Lox” Day

I’m all for bagels but not so much on the lox. Thinly sliced pieces of cured salmon will do nothing but ruin my perfectly delicious breakfast treat. I just never got into fish so adorning my bagel with anything that used to swim is not my idea of “yum”. Instead, I’ll celebrate bagels and lox day with an “everything” bagel with schmear, hold the lox.

Actually, it’s too bad that I’m not in NYC for this special day. Manhattan is the hot spot for delicious bagels. It’s probably one of the only things that I get from the hospital cafeteria with any regularity. Plus, Ben likes them. That, in itself, is a miracle because that kid likes NOTHING. Interestingly enough, I never see any of the Jewish population at the hospital eating bagels from the cafeteria. Then again, I’m doubtful that the hospital cafeteria is kosher.

We just returned from NYC on Sunday and I immediately came down with a sinus infection. Ben, thankfully, has escaped getting sick from all the travel we’ve been doing lately. My head was so bad that I ended up going to the doctor instead of letting it run its course. If there were meds to be had, I needed to have them stat. I don’t have time to be sick. I”m grateful that my sinus infection had the decency to wait until I was through a week of 3F8 and scans, but I still have stuff to do. No time to be sick. No time to be sick. NO TIME TO BE SICK. If I say it enough perhaps it will feel unloved and just leave?

No. It is refusing to leave quietly. Blowing my nose sounds like a foghorn. I’m a lot better – two days later – and am finally catching up a bit. I still have a fair amount of congestion but at least I can stand up without feeling like my head is going to explode. So, for now, I’m waiting. Waiting for news from the hospital. It’s always something, right?

Ooops. I got sidetracked. It’s a couple of days later and even though I’m still a teeny-tiny bit congested, I feel mucho better-o.

The news from the hospital was outstanding: Ben continues to show no evidence of disease. Hoo-flipping-ray! We’ll go for blood work tomorrow afternoon to see if more doses of antibody therapy are needed. Fortunately, we’ll have several weeks off before needing to go back to NYC, so I can focus on other stuff: like how my mother is doing and getting ready for Madeline’s birthday. I can’t believe Madzilla is going to be seven. I can’t believe we’ve been dealing with this stupid neuroblastoma for seven years. Of course, some years were easier than others, but it’s been wreaking havoc on us and wearing us down for seven flipping years.

I don’t know what I’d do without my Madeline. She has been such a bright light in my life over the past seven years. I didn’t know how I was going to bring an infant into Ben’s world of neuroblastoma, but she made the transition beautifully. She saved me from falling off the cliff. I had to take care of her. I had to take care of Ben. All I could do was focus on them and take each day as it came. Fortunately, we all survived. And Madeline offered such sweetness through her amazing spirit. She was such a wonderful, good natured baby and has grown into a very bright little girl with a tremendous sense of humor. I simply do not know what I’d do without her.

I know, this post was disjointed and random. Going from bagels to sickness to No Evidence of Disease to how wonderful Madeline is… I bet your head is spinning.

Now you know how I feel all the time. 🙂

It’s National “Freedom” Day

Ben is being bullied at school. I learned of this last night as he was under the influence of all his drugs from his day of 3F8 therapy. He was feeling a little weepy from the aftereffects of not only the 3F8, but the dilaudid (pain killer), the fentanyl patch (more pain killer), and respiridone (anti-anxiety), too. All of this medication acted as a truth serum of sorts and he laid out the facts of what was happening at school.

I had no clue.

I’d heard him talk about this kid before – we’ll call him “E” for our purposes here – but I thought “E” was just a minor hooligan instead of a full blown bully. He’s in Ben’s class and I guess he’s been saying hateful things to Ben since he started back to school.

I’ve seen this kid in action. He was terrorizing a kid while walking home from school last week. “E” threw a large chunk of grass at this boy’s head and hit him right in the face. There was dirt in his eye and a nice red mark right underneath. I happened to be the only adult around so I soothed the boy while “E” seemed to not care that he had hurt someone else. I told him that it was inappropriate to throw things at other people, especially at someone’s face. He said sorry but I could tell it wasn’t heartfelt. I didn’t really give this “E” a second thought because, well, boys will be boys. They play rough. I turned my attention to getting the dirt off of the boy and let “E” leave. Had I known that this kid was terrorizing my son, too, well, I might be in jail right now.

So here’s what’s been happening: “E” makes fun of Ben for being little. He said that only nerds have freckles and that Ben looks like a dork. He said that Ben will never get a girlfriend because girls don’t like “shorties”. He thinks it’s funny that Ben has had cancer. He told Ben that he looks like a little rat. He laughs at Ben daily and calls him names.

Ben just wants to be friends with people. He’s not interested in acting like this “E” character. Ben is good natured and has a very sensitive soul. This “E” is breaking his heart and Ben just doesn’t understand why.

Of course, while Ben is pouring out his heart to me, we’re both crying. Tears streaming down our faces as Ben recounted all the hurtful things that “E” has said. And while I reminded Ben that these were just “words” I couldn’t help but be hurt by what “E” has said, too. It makes me sad. Angry. Ready to call this boy’s parents and say “WTH?” But instead of going that route I suppose I’ll contact the school first. Ben told me that his teacher has already confronted this “E” on his bad behavior towards Ben. She made him apologize for calling Ben a rat.

I asked Ben if going to school was too much. He said he loved going to school but “E” took away from that. I want to wrap Ben up and protect him from the world but know that this is not reasonable. He needs to live. He needs to learn how to deal with bullies. He needs to have the freedom to be a normal boy.

But he’s not normal. He’s extraordinary. I think he should be exempt from all this tedious hooey.

So, I’ll help him with strategies on what to say to this “E” when he says hurtful things. And I’ll wipe his tears and offer my support whenever he’s hurting. And I’ll tell him that life isn’t fair.

But he already knows that.