When?

Tonight, I held my inconsolable son in my arms as he wept. We were in his room on his bed surrounded by Mario Brothers posters and other things the average nine-year-old boy might have in his room.

An average nine-year-old boy. That’s all he wants to be.

Before the meltdown, Madeline and I were in the bedroom practicing our “faces” — she wants to be an actress when she grows up — so we were perfecting our look of “excited anticipation” in the mirror when I heard the bedroom door shut. I knew that Ben was trying to be subtle in getting my attention. Madeline and I weren’t being loud — we were laughing a bit — but we weren’t in hysterics or anything. He didn’t want to hear our laughter so he shut the door. I opened my door just in time to see his bedroom door close. I took that as a sure sign of trouble.

I peeked into his room to see him laying on his bed facing the wall. He didn’t respond when I said his name so I went over and sat down on the bed. He was crying. He told me he wanted to get some things off his chest. I motioned for him to crawl into my lap, making sure I was giving him the option to come to me instead of making him feel like a baby. This age is so delicate. He is unbelievably mature for such a young boy and it’s hard to not treat him like a baby, especially given all he’s been through. When he willingly crawled onto my lap, I cuddled and rocked him. And let him cry.

In between his sobs he said he wanted to get some things off his chest. Not knowing what was coming my way I held him close and told him he could tell me anything. He told me that he’s tired of his sister. I countered that being tired of a sibling is fairly normal. And then he told me that he was concerned about something “bad” he saw on the Internet two years ago. He had watched a video on YouTube that had some bad words in it. I told him that if it’s been over a year then he should just let that go. And then he started crying harder as he let the real questions that were plaguing him spew forth.

“Mom, I’m just so tired. When is this going to be over? Why can’t I just be a normal kid? Why is there no cure for this cancer?” Then he started talking about how he wished he could be in heaven instead of living through this hell.

I rubbed his back and rocked him on my lap. I was at a loss as to what I should say. I have no answers. I don’t know why he’s been given this road to travel. I just don’t know.

So, I cried, too, and admitted that I don’t have any answers as to why he has to go through this hooey. But I did ask him what we could do to make him feel more normal. He told me that maybe it was time for him to go back to school. My initial reaction was to say no, but I stopped myself and said we would bring it up with his teacher tomorrow. His antibody therapy is on more of a routine now and his immune system isn’t compromised like it was during his chemotherapy, but there’s still so much that he goes through on a daily basis. I don’t know if a full day of school is the right thing. But we’ll certainly ask. If it’s going to make him feel a bit more normal then maybe it’s a start to getting my pookie pie back on track.

So, would you be surprised to hear that I’m fighting a massive bought of depression? I smashed my foot at the Ronald McDonald House two weeks ago and finally went to the doctor about it a few days ago. Fortunately, it’s not broken, but I’m supposed to stay off of it (yeah, right) and give it time to heal. While I was in my doctor’s office, I asked for a different antidepressant because what I’m currently taking isn’t working. My doctor said, “Sarah, I’m afraid that nothing will work. Your life just sucks that bad.” Now, I love my doctor. We have an excellent rapport and she has been incredibly kind to me over the years. But when she made this statement my jaw dropped. I felt like I had won some sort of lifetime achievement award, and while I’ve always wanted to be a winner, this is not what I had in mind. “And the “crappiest life” award goes to… ”

Wow. I am so incredibly tired. How long, Lord? When will this be over?

It’s “Chinese Valentine’s Day”

I bet you didn’t know this but today is the seventh day of the seventh lunar month, which means it’s Valentine’s Day in China! And being the seventh day of the seventh lunar month makes me want to break out in song. I think you’ll like it. Ready? Here goes: “When the moooooon is in the seventh houuuuuse…. ” Sorry, couldn’t help myself. I love that show tune as well as the musical it’s from (“Hair”), which I DIDN’T get to see before it left Broadway a few weeks ago. Oh! The agony!

Okay, back on track. This day of sevens is important for a  young woman named “Zhi Nu” because – according to ancient Chinese legend – today is the day she gets to see her beloved husband. They only get to see each other once a year thanks to her incredibly overbearing and intrusive mother. See story below:

The Goddess of Heaven had seven beautiful, young daughters. The seven daughters came down to earth. They decided to bathe in a pristine river, leaving their clothes on the shore. Along came a cow herder named “Niu Lang”.  He took their clothes to see what they would do. The daughters decided that the youngest, and most beautiful,  named Zhi Nü should go out of the water and recover their clothes. Because Niu Lang saw her naked, they had to get married. They fell madly in love, and shared several years of marital bliss.

Finally, her mother became irritated by her absence from Heaven, and ordered her to return. Seeing how much Zhi Nü missed her husband, the Goddess of Heaven brought the couple back together. Ultimately, Zhi Nü was allowed to visit her husband, Niu Lang, just once a year. The annual reunion occurs on the 7th day of the 7th month of the Lunar Calendar.

Man. How’s that for a conjugal visit? I think there would be a lot less divorce in the world if we could only see our spouses once a year. But, then again, there is that horrible mother-in-law factor. That, in itself, might drive them apart permanently. Oy.

We’re sitting in the hospital with Ben waiting for his bone marrow biopsy. He just had his exam, had his port accessed and is currently playing a Nintendo game (I know! Shocking!). I’m so thankful for handheld electronics. Better “coping” through technology, right? As I look around this pediatric oncology unit I see gazillions of dollars worth of laptops, iPads, cell phones, Nintendos… it makes me wonder how anyone got through these long days at the hospital before portable technology? I guess we’d be forced to communicate with each other. And really, who wants to do that? It’s just so much easier to delve into our electronic devices.

Distractions. We all need them. I wonder what Zhi Nu did with all of her downtime? Did she cut out little hearts and paste them around the walls of her palace? Did she write in her journal? Practice her married name? I can see it now – Mrs. Zhi Nu-Lang. Or Mr. and Mrs. Niu Lang, Herder of Cows and Princess of Heaven. Maybe the cow herder was progressive enough to take her last name? That would make him Prince Niu Nu-Lang. I wonder if he kept his day job of being a cow herder after marrying into royalty? Did she send him support checks each month? And did he ever give up the nasty habit of stealing fair maidens’ clothes from riverbanks? That could be a point of contention in any marriage.

This endless barrage of bizarre questions floating through my head is what I do to get through my stress-laden downtime.

In fact, my Bean just got sedated and his parents were banished to the land of waiting. I better end this post now before I get really weird.

So, however you choose to spend this Chinese Valentine’s Day, whether it’s by celebrating love, or just eating some great Chinese food, be sure to make the most of it.

Give it all you got….

Ben revealed a new skill this week during antibody therapy: he’s a natural coach. We heard phrases like “Is that all you got?” and “Give me more!” when he was giving us direction on how to alleviate the pain. Like I had mentioned in prior posts, his pain tends to be focused in the abdomen, back, head and neck during the infusion of antibodies. He says that it feels like his skin is taking the brunt of it, sometimes it feels internal, but mostly it’s the skin. Heat packs applied with close-to-rib-cracking amounts of pressure is what helps the most.

“Rub! Rub! Rub! Give it all you got! Don’t stop! Whatever you do, DON’T STOP!” These demands were given with the excitement and energy of a coach watching his team play in a tension-filled championship. His enthusiasm worked. His “team” gave it all we had. I have to admit, I like hearing him in “coach mode” instead of screaming out in intense pain – like he did on Monday. While both outlets keep his oxygen saturation at 100% (which is what we want) I prefer the “give it all you got” method as opposed to the “Why, Lord, why?” that he was screaming on Monday.

Monday. Ugh. Mondays are the worst. The first day of 3F8 is the longest because he has to get his port accessed, blood drawn, labs completed, height and weight assessed, be seen by the staff and go over all the questions of what went on during our three weeks off therapy. THEN the 3F8 is ordered (based on weight), THEN the pharmacy has to make it (I imagine people in lab coats stuck in a small cubicle with bunson burners and rows of test tubes wringing out mice to fill little baggies with mouse essence – I know, that’s weird). THEN it comes back to the ninth floor which starts the pre-medication process and eventual infusion into the kiddos. The staff has to space this out because it’s horrific enough to have a couple of kids screaming at the top of their lungs at one time, it’s quite another to have an entire floor of kids shooting through the roof in pain all at once. Also, since the kids have been off therapy for a couple of weeks, their bodies haven’t built up any tolerance to the antibodies. Once Ben’s infusion began on Monday, he started his screams of “Why, Lord, Why?” and “Make it stop!” and “I hate this hospital!” He screamed so loud for so long that his vocal cords began to sound like he was screaming in two separate pitches at the same time. And at a very high frequency. Then, once the pain subsided, he fell into a dilaudid-fueled sleep. Mondays usually result in no earlier than a late afternoon discharge from the clinic followed by an all-afternoon and evening snooze-fest intertwined with occasional bouts of mind-numbing pain. Good times.

The days post-Monday, however, have been a bit easier this time around. The pain is still horrific during infusion but Ben uses his amazing coaching skills to give us direction. He knows where it hurts and knows what he wants us to do to alleviate the pain. I couldn’t imagine him going through this therapy when he was, say, three years old. The little guys aren’t as verbally astute, which makes the process a bit more difficult to navigate. I hate that Ben has to go through this at all (of course), but there are a couple of benefits of him being a bit older this time around. I’m glad he can tell us what to do.

Ben is currently sleeping off today’s infusion. Once he wakes we’ll head back to the Ronald and hopefully he’ll feel up to doing something fun tonight or tomorrow. We’ll be in NYC over the weekend because he has a bone marrow biopsy on Monday. Don’t worry, nothing was found, this biopsy is just part of the normal 3F8 protocol. Then, in between round two and three of antibodies, Ben has to take accutane. Getting this drug is a big, crazy ordeal. He had to be enrolled in the “iPledge” program. This means he has to “pledge” to not get pregnant during this piece of his therapy since Accutane is famous for causing severe birth defects. This is funny on so many levels (not the “birth defect” point, but the “Ben getting pregnant” point). First of all, he’s male. Secondly, he’s got lots of girlfriends but I am confident that my nine-year-old isn’t “active” in that capacity. Third, there is no way his “swimmers” survived the Hiroshima and Nagasaki we’ve had to put his body through. In other words, he’s reproductively challenged. Big time. But we still made him hold up his hand and pledge not to procreate during his Accutane therapy. Actually, I’m making that up. All I had to do was sign a release that stated I understood the dangers. Man. If I had a dollar for every time I had to sign something like that regarding my son….

Well, I should go. Ben’s lips are swollen (allergic reactions like swelling, itching, and hives are common with this 3F8 stuff). Admittedly, he’s still incredibly adorable given the over-sized lips. I think I’ll go steal a kiss.

Have a great weekend, everyone. And as Ben says, remember to “give it all you got.”

Eating cheese and hanging on…

I just ate two slices of Kraft American Cheese and am considering having one more but that would require me to get up and go downstairs to retrieve another piece from the refrigerator. Plus, on my journey to the fridge, I would want to check on the mouse that our cat, Cricket, brought up to the house about an hour ago.

Cricket was playing that horrible “game” that cats engage in to torture mice. She had the mouse cornered and was clearly enjoying the panic the little guy was exhibiting. We wrangled Cricket back into the house and gave the mouse some room to move. While I’m hoping it escaped back into the “wild” of Suburban Aurora, I’m concerned that it dropped some mouse pellets and gave up, which means I’m going to have to dispose of it, which really puts me off getting that third slice of cheese.

However, if the mouse is still alive, I could share a piece of Kraft American cheese with the little fella. After all, I own the cat that brought him great misery, the least I could do would be to give him a bit of cheese. Do they even like American cheese? Cuz the only other sort I have is pepper jack and gruyere. And I’m not giving him the expensive stuff. I don’t care if he is dying. Oh, okay. I do care. And if he asks for it, I’ll give it to him.

I’m stalling. I really don’t want to go down and face a dead mouse by my front porch. Oh, okay. I’m going. I’M GOING!

Dammit. He’s dead. Now I’m feeling very guilty that I didn’t go down for that cheese a bit earlier. Maybe he just needed a teeny-tiny bit of cheese to gain enough strength to keep on going. Make it back to his family and friends. Spin his yarn about his ordeal with the big scary cat named Cricket. He’d move up in the ranks of bravery within his community. Maybe even earn a medal. But instead, he’s found his final resting place here in Southeast Aurora. I fashioned a casket out of a USPS Priority Mail flat rate box cushioned with some paper towels and placed him (gently) in the dumpster.

I’m trying really hard to not feel guilty about it.

Guilt is such a wasteful emotion, isn’t it? I spend so much time feeling bad about things that just are not in my control. And I’m feeling horrible about that little mouse. I know Cricket was just doing her job. Bringing her “present” back to her home shows that she loves us, right? At least, that’s what some crazy New-Age cat whisperer has decided. Until cats can speak for themselves, we have to depend on the experts to decipher the feline’s odd behavior. Meanwhile, I’m going to sulk that I have yet another dirty task added to my list of chores. I am so NOT doing laundry after burying a dead mouse. I will only participate in one grueling chore per day and I’ve reached my limit. So there.

On top of the mouse drama, I’m waiting for Sloan-Kettering to call. Today is the weekly Tuesday Blood Run to see if Ben has maintained his eligibility to receive antibodies. We missed last week’s testing cut off by one hour (thanks to a FedEx flight delay) so we are not in New York this week. There is really no issue with being a week behind, I’m just hoping they have enough beds open so Ben can get the next round over with. I’m anxious. He’s anxious. We’re all anxious and hanging on as best as we can.

It reminds me of a grasshopper I picked up a few days ago while at Sam’s Club. I came out with my treasure trove of bulk items, packed them in the van and buckled in to go pick up Yoshi from his play date. As I was backing out of my parking spot I noticed a giant grass hopper hanging on to my windshield. He was definitely in the way — smack dab in the middle of my line of sight. I briefly considered turning on the wipers to shoo him away but quickly discarded that as cruel. So, I decided to go with it. If he was game, I’d give him a ride.

I was only going a couple of miles down the road but the journey would take us to a different town in a different county. The grasshopper was going to have to change his voting district. Then I wondered what my little green friend was running from? As I accelerated from 30 to 35, he kept hanging on. Was he leaving behind a nagging wife? Reeling from a recent job loss? It was hard to ask through the thick plate glass of the windshield, so I just kept driving. The speedometer crept from 35 to 40. An occasional flap of his leg had me questioning his endurance but I kept climbing nonetheless. 40 to 45. I had reached the speed limit of the new town in the next county and still the little booger hung on. When I came to a stoplight, my new friend flew off to experience his new life.

I admit that I’m a little jealous that he flitted away so breezily. No “thank you” for the ride or even a tip of the hat. Heck, I would have taken a half-hearted salute from my little green buddy. But no. Off he went to find happiness. I really do hope he finds it. And someday comes back to tell me all about it.