It’s “National Soft Serve Ice Cream” Day

Soft serve ice cream reminds me of Kirkersville, Ohio, which is my hometown. Kirkersville is a wee-bitty village with a population of about 700 (this number does NOT include cows). Everybody knew everyone AND their business. I was only a mild troublemaker so my name wasn’t in the rumor mill all that often. I did, however, work at the center of town where all the action happened. Kirkersville had but one stop light and it was considered the epicenter of the whole village. On one corner you had the Apostolic Church. The corner directly across the street held the local tavern. Following clockwise, the next corner held the post office as well as the carry-out. This was my favorite corner because you could get all the penny-candy you could carry and it truly was a penny apiece. The last corner held my first true place of employment, The Kirk Kone. Unfortunately, by the time I was old enough to work there, it was called “Aunt Mary’s Cafe and Cone”. I could never make the transition of calling it anything other than the Kirk Kone, even though the incorrect spelling of “Cone” annoyed me beyond belief. It was the hub of all the town’s excitement. That’s saying a lot considering there was a tavern caddy corner from the ice cream joint.
We had soft-serve ice cream, every flavor of sundae you could imagine, milkshakes, dip cones, sprinkles, and even a smattering of sandwiches like pulled pork and pizza burgers. It was fine dining by Kirkersville standards.
I understand that Kirkersville no longer has the Kirk Kone. The building now houses a bingo hall or something like that. The other corners still have their staples, but the ice cream place is long gone. It makes me a little sad. But change is inevitable. There’s no changing that.
I bought Ben a $3 soft-serve ice cream cone from the Mister Softee truck in Midtown Manhattan the other day (what is it about soft-serve ice cream that commands people to misspell?). He devoured it before we got to Nintendo World, which was just a block or two away. Usually, he loses interest in all things food about 1/2 way into them – even ice cream. However, this particular cone didn’t even get a chance to melt. Ben has actually been doing well with eating this trip. He’s gained about two pounds and has grown about one centimeter since our visit in June. I know, that’s not a lot by most standards, but in Ben’s world it’s monumental.
So. The scoop on Ben’s treatment. We’ve had some interesting news this week. Ben reached HAMA. I’ll try to explain without getting too technical. HAMA stands for “Human Antibody Mouse Antibody”. The antibodies that Ben has been receiving is derived from a mouse. I know. Crazy. Anyway, the mouse antibodies are supposed to teach Ben’s system how to fight any recurring Neuroblastoma. We want Ben to receive as much of this as he possibly can. The average length of this treatment is approximately two years. Ben has made it about 1/2 way through at this point. We need to make an adjustment in his treatment to bring his HAMA down to a level where his body will accept more of these antibodies. The more he has, the more able he’ll be to fight off any cancer that’s trying to return. So, we either just wait for HAMA to come down on its own or we do more chemo. It’s a low dose of chemo so he shouldn’t lose his hair or get too terribly sick, but it’s still a minor setback. Everything had truly been sailing along at a beautiful pace and now this. It’s not uncommon for this to happen to kids – sometimes it happens more than one time – but it’s still a pain in the butt.
Even though Ben has reached HAMA, he’s still going to finish out the week of therapy. As of today, he has one more session to go. The pain has been minimal this time around (another indicator of HAMA). He’s actually up and playing his Wii right now so I’m hoping we can get out and enjoy this evening.
Maybe we’ll go out and get some ice cream.

National Water Quality Month

I’m watching my sweet little boy as he tries really hard to choke down some lunch. I think Ben believes – after taking medication and participating in any sort of cancer treatment, of course – that eating is pure torture. He keeps looking over at me to see if I’m still watching so he can take a break without me “encouraging” him to take another bite. Poor kid. I can’t even use the usual guilt trips. When I mention that there are children in Africa who are starving and would gladly eat that food he says he’s more than willing to ship it to them. And besides, he has cancer. Doesn’t that cut him some slack?

I hate to see him struggling so much with eating before he does a week of treatment. The week of antibody therapy is so hard on him and eating falls way down on his list of priorities. On top of the pain, there’s his “pain-in-the-butt” mom harping on him to eat something. I’m sure he wants to poke my eyes out.

Oh, I’m not all that bad. After all, I just spent all day yesterday frolicking in the ocean with my son. I’m so NOT a beach girl. I don’t love the sand. I don’t love the salty ocean. I don’t love what lurks beneath the murky water. Plus, Shark Week has just occurred AND that shark movie recently came out… too many reminders of what is out there waiting for me to kick my legs. But I ignored my fears and took Ben out to ride the waves.

It ended up being a beautiful day. Several families staying at The Ronald got the opportunity to travel to the Jersey Shore to spend the day with a very generous benefactor and his family. Apparently, this family hosts several dates over the summer so the kids can get away and enjoy a day at the beach. The family provides food, boogie boards, umbrellas and chairs for the kiddos to enjoy.

I think all the kiddos had a blast playing in the waves and enjoying some sunshine. I know I had a great time watching the kiddos enjoying themselves.

A precious moment of normalcy in their tumultuous world of cancer.

High Scanxiety

I’m sitting at the Ronald McDonald House in NYC watching the rain hit the window of our room. The drops hit with great forcefulness and then slide down gently until they land God knows where. It reminds me of “old school” cartoons where the antagonist is chasing the protagonist, hits something hard – like a wall or an anvil – and then slowly slides down like the bellows of an accordion. I know, I know… my mental illness is showing. 🙂

I am generally soothed by the rain but, unfortunately, there is no calming effect with this particular storm. What do I have to be stressed about, you might ask? Oh, only the fact that the next few days are filled with tests to ensure that Ben’s cancer hasn’t returned. And after scans, there’s a whole week of horrible, awful, ridiculously painful antibody therapy. Ben is stressed, too, so we’re geeking out on our respective electronic devices to pass the time.

We just arrived in NYC today. I didn’t sleep very well last night so I’m thinking (hoping) we’ll crash early. Ben requested pizza for dinner so I ordered online and walked in the rain to pick it up. Upon my return, I was smacked with a reminder that we’ve lost several little friends since I was last here just a couple of months ago. I fought back the tears of knowing these sweet little children wouldn’t be eating in the communal dining area or running up and down the halls or playing in the newly remodeled playroom. Their parents will never kiss their sweet faces again. Or hold their precious hand. Or smooth what hair they might have left. The parents are left – depending on what they believe comes after this life – with the understanding that they are no longer the one comforting their child. The precious life they watched come into this world has drifted out.

And if that wasn’t enough, there’s more loss to it than losing their child. Now the family has to move on. A few of the families were living here at the Ronald McDonald House permanently. One family had sold their house in Florida to live here in NYC – all to care for their cancer-stricken child. Now that their child is gone they are faced with finding alternative housing. They lose their day-to-day support system of hospital staff, RMH families and their children… it’s such a tremendous loss. I feel completely helpless.

Because you WANT to celebrate that your child is doing well. That your child’s therapy seems to be working. And there’s that bit of guilt revolving around the fact that their child didn’t have the same outcome. This is a tough group to belong to. We love each other fiercely. We become each other’s family. We cry despondently when one of the kiddos succumbs. And lately, there’s been too many who have died.

So, I’m sitting here, watching the rain and mourning the children who have recently left this earth. I hope they are somewhere wonderful, watching over their loved ones and knowing that they were severely loved during their all-too-brief time on this planet. And that this sort of love will never succumb to anything like cancer. This love is strong and beautiful.

Just like they were.