Stronger Than I Look

Note: this is an “op-ed” piece. I shouldn’t have to state that this is MY opinion on what is a blog that chronicles MY opinion, but I know this might offend some people in the cancer community. Nevertheless, here goes:

Everybody – and I mean EVERYBODY – knows that kids get cancer. So there. Awareness is not an issue. People are MORE than AWARE. They might not understand that the symbol for Childhood Cancer is the Gold Ribbon, but even if they did, I don’t think it would change anything. Besides, seeing how over-played the Pink Ribbon (which EVERYONE knows stands for breast cancer) has become, I’m not sure that the Gold Ribbon should be displayed on everything from underwear to soup to toothpaste. I’m pretty confident that the Susan G Komen foundation pays through the nose for their ribbon to be emblazoned on every product, and if the Gold Ribbon were to follow suit, I think it would become yet another symbol for people to ignore. Besides, Gold Ribbon families simply don’t have the money to buy awareness. We’re all broke.

I used to be one of those activists, one who met with members of congress trying to get them to support our cause. I’ve been told everything from “we already support cancer research” (which, unfortunately, gives very little to childhood cancer research) or, my personal favorite line uttered by a Congressional Aide, “Until someone famous gets this disease and backs it, I expect very little will change.”

So, under this premise, should I be praying for one of the Kardashian kids to get cancer? That would get people’s attention, right? Maybe someone would care then? However, I wouldn’t wish cancer on anyone… not even a Kardashian. But I bet they’d come out with a killer line of chemo backpacks. Kids getting cancer is pretty sad but why not make it fashionable? Yes, I’m being sarcastic, but this is what our world has come to. We care more about what those reality star dim wits are doing than we do about our neighbors, who are simply trying to survive.

I’ve been “listening” more than posting on Facebook recently, and it’s filled with two camps right now: people doing the Ice Bucket Challenge and people bitching about the Ice Bucket Challenge. Personally, I think it is a brilliant campaign. It has raised lots of money for ALS. That is TRULY phenomenal. But, what has made it successful is that it appeals to people showing others their personal piece of it. Look at me dumping ice on my head! And then there are those who are tired of seeing it and take the time to complain about it. Okay. Sorry to bother you. But THIS IS WHAT HAPPENS WHENEVER ANYONE TRIES TO RAISE AWARENESS! People turn their backs or complain about it or  shut down altogether.

The beauty of Facebook – and why so many people are addicted to it – is that it appeals to our vanity. It’s about me. It’s about you. Keeping everyone up-to-date on what I had for dinner or how bad my head hurts or a picture of me getting a pedicure. It’s my own personal Reality TV, except I’m keeping up with people I actually care about instead of the freaking Kardashians. Don’t get me wrong, I LOVE FACEBOOK. And I love to keep up with my friends. And I love to keep you up-to-date on what’s happening with me. I’ve “met” a lot of great people here and it has kept me from falling off the cliff more times than I can count. In fact, I was at the mall the other day and someone came up to me and said, “You’re Ben’s mom, aren’t you?” She told me that she’s been following Ben’s journey on Facebook and reading my blog for a while now… I was overcome with JOY that someone would take the time to come over to me and let me know that they care about my son. It was truly heartwarming.

But back to the ALS campaign, many people in the pediatric cancer community are trying to think of something similar in hopes that it would go viral. I really hope we can be more original than jumping on another organization’s bandwagon. If we start sending videos of us smashing pies in our faces or sucking on lemons or doing any number of things to try to get people’s attention, I honestly think it will make us look foolish. I know this is going to piss some people off and I’M SORRY for any offense, but let’s think of something else. People are tired of the pink ribbon, so why promote our gold ribbon? People are getting tired of the Ice Bucket challenge, so why try something in a similar vein? I don’t know what the answer is and I don’t have any grand ideas, but please, let’s find something that will excite people, not make them groan, roll their eyes, and turn their backs. We already have enough resistance to overcome.

For now, I’m taking a personal approach. I’m using Facebook. Ben has his own page dedicated to him and his journey. I keep most of his medical stuff separate from my personal page. My blog has a lot about Ben on it but it’s not solely about him. I can talk about whatever I want to here. But his Facebook page is 100% him. And anyone who “likes” his page can keep up with what’s going on. I try to make an impact there… showing videos about what he’s going through. Posting pictures of the hell he endures. I just changed the “cover photo” on his page to reflect the 10 years of torture he’s been through… it’s my own way to raise awareness. It might be directed at a very small group of 2K+ people, but it’s making an impact. He gets new followers every day. I don’t expect our plight to go viral but I’m doing my part in letting people know how bad this sucks.

There are some amazing people out there who are doing incredible things for pediatric cancer. Running hundreds of miles. Baking cookies and cakes. Cutting their hair. Starting foundations. Marching on Washington. There is no doubt that our cause is way underfunded and pushed under the rug. But stop being pissed at the Empire State Building for not “Going Gold.” They don’t wanna support us, they’ve made it clear, so we’ll bang on someone else’s door. We can’t make people pay attention. But that doesn’t mean we shouldn’t try a different outlet. I think it’s fruitless, however, to keep hitting those who don’t want to listen over the head with it.

Trust me. They’re aware. They know that kids get cancer. And either it is simply too sad or too painful or hits too close to home. Or maybe they just care more about the Kardashians. Their choice. Heck, I have some extended family and friends who refuse to read my blog or discuss Ben’s issues because they just can’t handle it. I can’t make them. So, I’ll tell the readers of my blog and those who follow Ben’s page. I get my message out to as many people who will listen. And if those supporters want to give money to our cause, that’s fantastic.

But we can’t make them listen. And that’s not our fault. It’s not for a lack of trying.

So, let me leave you with this excerpt from the all-time comedy classic, The Jerk.

Hobart: Sir, there are charity people here to see you.

Navin R. Johnson: What? Send them away. There are plenty of people more deserving than me!

Hobart: But these people want *you* to give, sir.

And then he meets with a shyster disguised as a Priest soliciting funds for *GASP* Cat Juggling. As he views the 8mm film of a man juggling cats, Navin says: “Good Lord – I’ve heard about this – cat juggling! Stop! Stop! Stop it! Stop it! Stop it! Father, could there be a God that would let this happen?”

He proceeds to get out his checkbook and write a number with lots of zeros.

We – the Pediatric Cancer Community – need a Navin R. Johnson to come to our rescue. Our salvation ain’t in the Empire State Building. Or anyone affiliated with the Pink Ribbon. Or usurping the Ice Bucket Challenge. I wish I had the answer. And I wish I had the energy to fight the bigger battle besides the one I battle with my son.

I guess the best advice I have is to keep sharing our stories. And, unfortunately, there’s no lack of heart wrenching stories to share.

 

 

I don’t think I explained what happened Friday when Ben was discharged from his MIBG therapy. My alarm went off at 5:45 that morning so I could start getting him ready for discharge. He had to have his Foley catheter pulled, take a shower to wash off some radiation and then head down to radiology for an MIBG scan all before he could have his PICC line pulled and his mediport de-accessed.

As the nurse was pulling his catheter, I averted my eyes (no 13-year-old relishes the thought of anyone doing anything to his “private area,” especially while mom’s hanging around) but with all the rules in place, it wasn’t feasible to simply step outside while this was happening. So, I looked out the window instead, just in time to witness the beautiful sunrise as Ben was gasping – first in pain and then in relief – as the foley was pulled. This wasn’t the first time that I had to focus on something else while my son was going through something painful. And, I was quite certain, that he wanted no comfort during this part of it – especially from mom. My poor, traumatized 13-year-old.

As he showered, I changed his sheets and disposed of other items, so he could lay back down on a minimally radiated bed. His legs were wobbly after spending so much time being sedentary, so I hovered as close to the bathroom as I could in case he needed me. He didn’t. Then he got dressed in new, non-radioactive clothes, and waited for the MIBG scan. I took a nap while he scanned… I had been up more than I had slept the night before. Once Ben was finished scanning, we went over all the discharge rules. Again.

No close contact with anyone through August 8. Must stay entirely separate from younger sister through 8/8. Must stay entirely separate from all children through 8/8. Must use disposable eating utensils, which must be disposed of after being held in isolation for one month to avoid violating radiation levels at our local landfill. All clothing and sheets must be washed separately. Must have sole use of a bathroom until 8/8 and the toilet must be flushed 2-3 times after each use. Must shower every day (this is probably the hardest to enforce.) And, for the Love of God, DO NOT PEE IN THE SHOWER! The radiation is excreted through sweat and urine… peeing in the shower would most likely dissolve his little legs off. Just kidding. I think.

So, I haven’t truly hugged my son for eight days. Now, I’ve gone this long without hugging him before, but it’s really freaking hard when he’s right in front of me and I can’t hug him. It was decided that Ben would stay at his father’s house since I live in an apartment and radiation can sneak through walls. Despite him emitting a fairly low frequency of radiation, it’s best to play it safe and keep him as isolated as possible.

The follow-up MIBG scan showed that the radiation had surrounded the cancerous spots and hopefully kicking the hooey out of those bad cells. It was noted, however, that radiation was surrounding a spot on his liver, too. There’s always been a spot there, but it was deemed to be ‘brown fat’ since it hadn’t grown or moved or done anything ominous over the past two years. The fact that it was surrounded by radiation suggests that it’s cancer. So, that sucks. But, at least the MIBG is surrounding it and hopefully forcing it to give up.

Stupid cancer.

Knowing that I would be hanging out with Ben today while Matt was at work, I took Madeline to a friend’s house for a sleepover since she can’t be around the radiated Bean. On my way home, I called Ben to chat. I told him I couldn’t wait to see him in the morning. He expressed the same excitement about seeing me. My emotions got the best of me and I apologized for his having to go through so much. He said, “That’s okay, mom. I’m glad it’s me and not you or Madeline.” I’m sure my face twisted up in an effort to not lose it, but I told him that I would take it from him in a second if I could. He said that wouldn’t be acceptable. Then I told him I loved him. It’s our little game to one-up each other during this exercise of expressing love… “No, I love you more…” and then I say, “No, I love you most…” and then he says “Not possible…” and I say, “Possible. Infinity.” But last night, he asked, “Please, just let me win this one. I need to love you more.”

So, I surrendered. I let him win. But just this once.

He is feeling optimistic that this therapy is helping. He said “It really wasn’t so bad. And maybe this is the answer, mom.”

Maybe this is the answer, Ben.

Hopefully, it is.

 

 

While I was visiting Ohio last week, I overheard my sister, Cassi, and my dad’s lovely wife, Janet, discussing heirlooms. I was sitting on the couch in another room – staring out the window and silently sobbing – while they were talking about china and knick-knacks and other things deemed inheritable, when my sister brought up the hope chest she had during high school. For half a second, I stopped crying and smiled at the thought of dreaming of a future. Collecting things to make your life all that you could possibly dream of. Or, better stated, cultivating hope.

My sister’s high school years took place in the late 70’s when hope chests were all the rage. Seventeen magazine featured advertisements from Lane furniture showing a young woman adoringly gazing at her hope chest, longing to fill it with the belongings she would feature in her future home: the silver she would use to host her first family gathering; the linens she would smooth each day as she made her bed; the picture frames she would display photographs of her wedding and, eventually, her newborn. My sister had one of these and she actually worked hard to earn her prized collection. Cassi was (and still is) a very organized person. She color codes her clothes and hangs them according to length, which is how she always knew when I “borrowed” something without asking first, because that type of order makes absolutely no sense to me. Inevitably, I would always put the “borrowed” item back in the wrong place. I love how aesthetically pleasing her closet is, but I do not possess these same traits. In fact, the chair beside my bed is the best I can do as far as organizing my clothes. I hate laundry. I’m pretty confident this is how it will always be.

So, when Cassi and Janet rounded the corner to see my desolation, the halt of their bodies was synonymous with a needle making its deafening scratch across a record.

“Are you okay, sweetie?” Janet queried, knowing the answer before asking it. Janet is intimately acquainted with pediatric cancer in a manner completely separate from her inherited grandson. In a bizarre twist of events, the hell Janet faced with rhabdomyosarcoma – a pediatric cancer defined as a soft tissue cancer – took the life of her adult husband. He’d never had cancer as a child, so to have her husband pass away after a brief battle against a cancer that typically strikes children, was undoubtedly tragic.

Sometimes I feel guilty for reintroducing her to this world despite knowing she has nothing but love and compassion for our situation.

My sister sat down next to me and held me while I claimed my temporary insanity. Muttering about losing my Ben. Weeping in despair. Frightened about the unknown road before us. Again. She mentioned the word “HOPE,” which sometimes sounds so foreign to me. At least it did to me then. I want to have hope. I really do. But my hope chest was non-existent.

I never collected for the future. When I got engaged (at the age of 27) my mom took me to Williams-Sonoma and bought me some high-end kitchen items – all of which have lasted longer than either of my marriages. I don’t have a hope chest. I have a memory box. It holds the past: delicious love letters, jewelry from dead relatives, and tidbits that – at one point or another – have made me happy. But nothing for the future.

Why is this?

Was this a foreshadowing of my inability to have hope? The silver I would eventually pack up and move out of my home; the linens I would permanently strip from a marital bed; the picture frames that temporarily housed the smiles of a fleeting love. The facts are undeniable that I’ve struggled to make good choices when it comes to men. But this is different. This is my child. My son. My heart. 

So, I’ve decided to amend my ability to have hope. As I leave the room that holds my son as he battles a physical demon, I have hope that this new treatment is torturing every bad cell as much as those cells have tortured my beautiful son over the past 10 years. Despite my inability to touch his radioactive body, my love attacks the radiation that keeps me at arms length. I know Ben feels it. Hopefully, it’s bringing him comfort during this current storm.

Hopefully. Hopeful. Hope.

I rip the paper gown from my body and strip myself of the rubber gloves that protects me from the radiation, depositing them into the contaminated waste receptacle by the heavy, lead-lined door. I smile at the fantasy of having a drawer full of disposable clothes as I step over the threshold, leaving my brave son to continue his war on his own. No chore on earth could prepare my son for adulthood like this one can. And while it hurts beyond belief, I have to have hope that he will use this experience in his adult years to teach the world a thing or two.

And I decide that it’s okay that I’ve never had a hope chest. Besides, all the hope I hold now could not fit comfortably in a single chest.

It’s simply overflowing.

 

It all changed yesterday. I had to turn myself off. A reboot, reset, update – whatever you want to call it – and get on with it already. I’ve spent the last several days doing a tremendously bad job of hiding my tears and repressing massive panic attacks. Of course, I’ve been trying my hardest not to have these meltdowns in front of Ben and Madeline. Fortunately, Ben has been “gaming” with his beloved cousin and Madeline has been swimming up a storm during this visit, so they’ve had little time to notice what I’m doing. My sister and dad, however, have not been so fortunate.

I know the frequency of my panic attacks have increased because of what I’ve recently learned about my Bean. I feel helpless, and – at times – hopeless, and I guess I felt somewhat safe within the confines of my dad’s house and with my children distracted… enough to allow myself to cry in an attempt to get it all out of my system. Now, I know I can’t release all of that – I mean, I haven’t found the “miracle cure” to let it all go or anything – but I’ve been better at managing my emotions in the past. However, this visit home has allowed me to be introspective. My phone hasn’t been working properly so I haven’t spent a lot of time using electronics as a coping mechanism. And I brought my coloring book with me so I could try to focus on that instead of allowing my breathing to elevate to proportions synonymous with a volcano explosion. But really, I’ve just spent a lot of time with my own thoughts.

I’ve been avoiding and distracting myself for so long that I kinda forgot how to think. Ugh. I’m not explaining this very well. Bear with me. Sometimes, all I do is think, but I think about all the wrong things. The “woulda, shoulda, coulda’s.” The ugly scenarios. The worry. The fear. So, during yesterday’s reboot, I was encouraged to change my thinking. So, here goes…

There’s no doubt in my mind that Ben will survive this.

This is what he needs to see from me. I don’t want him to look in my eyes and see the fear. I want him to look in my eyes and see a fierce dragon ready to kick the ass of whatever is trying to hurt him. I need him to garner strength from me so he can be ready, too. I want him to know he’s not fighting this alone. He’s not alone. Madeline’s not alone. I’m not alone.

There’s no doubt in my mind that Ben will survive this.

Watching him be tired and weak is temporary. It’s evident to me that this relapse is wearing heavily on him. All he’s wanted to do is play video games with his cousin, but even that seems to be wearing him out. I know he’s scared. I know he knows that I’m scared. He’s a very wise child and he can see right through me. I need him to see the impenetrable force of a brick wall when he looks at me. I’ve been so transparent with my fear, but the need to shift that to strength is imperative.

There’s no doubt in my mind that Ben will survive this.

Some of us tell our children that they can be anything they want to be when they grow up. Why can’t that translate to this situation? Ben, you are allowed to grow up. You are allowed to become a young man. You are allowed to get your driver’s license and go to college (or not) and fall in love (or not) and be whomever you wish to be….

There’s no doubt in my mind that Ben will survive this.

I had grand plans for this trip and it hasn’t turned out how I expected. At least, not for me. I knew that all Ben would want to do is hang out with his cousin and forget about what’s coming up in a couple of days. I was thinking that this would be an opportunity for everyone to come see him. I wanted him to feel the love that so many people have for him. But he’s simply not up for something like that. Everyone coming together was for me. Not for him. It’s not that he doesn’t love all the love, it’s simply because he’d be so overwhelmed and he’s already just so tired.

And I’m ashamed to admit – but I’m going to anyway because admitting I have a problem is the first step to recovery (so they say) – that this trip would be an opportunity for people to say goodbye.

My heart is racing just by typing that sentence. I can’t say that putting it out there has made me feel better, but there it is.

However, I’m replacing it with this:

There’s no doubt in my mind that Ben will survive this.

I’m sorry there’s no get-together today and I’m sorry that I hardly saw anyone on this trip. I really did have something else in mind. And I want every person in the world to meet Ben and Madeline because they are simply amazing children. I wanted them to feel the love they have surrounding them before heading into this next battle and I know so many of you were looking forward to finally meeting these amazing little people. But there’s no doubt in my mind that all of you understand.

Just like there’s no doubt in my mind that Ben will survive this.

 

 

 

 

 

 

I wouldn’t have wanted to be a part of my inner circle yesterday, for this sweet little redhead had a pretty serious meltdown.

My hand was literally on the handle of my suitcase, which was filled with a week’s worth of clothes for myself, Ben and Madeline. I needed to be at my ex-husband’s house within the next few minutes in order to get to the airport on time for our flight to Chicago. We were headed to the Windy City to attend a conference specifically for Neuroblastoma families – ALL the important doctors were going to be there, and we wanted to pick their brains about the best way to save Ben. I’m usually running a little behind, so when I saw Matt’s name pop up on my phone,  I think I answered with “I’m on my way right now.” He cut me off to ask if I got the call from Dr. Macy.

“What do you mean?” I asked as my body filled with the natural defense mechanism of adrenaline – my glands are always happy to produce this in massive quantities. The buzz always starts in the pit of my stomach and shoots out to each limb, the metallic taste overtaking my mouth and pressuring my internal capacity to its limit. The only option then is to let it violently shake my body in hopes of finding a way out.

Matt dropped the bomb: “There’s a new spot.”

We had spent the previous day at Children’s doing extensive education on this MIBG therapy. Ben will be the first kid to receive MIBG in Denver (many other kids in Denver have done this MIBG stuff but have had to travel to other states for therapy) so it’s kinda a big deal for Ben to be the first. And everyone is being extremely cautious. Part of the pre-treatment workup was to scan Ben for hours. Okay, maybe not hours, but it was way longer than a routine MIBG scan. As always, Ben handled it well, lying still for a very long time while the gigantic machine perused every inch of his body.

Dr. Partrick had removed one cancerous lesion from behind Ben’s collar bone on July 1st, but we knew another spot remained. To learn that there was another spot, which popped up in less than two weeks’ time between scans, completely caught me off guard.

I dropped the handle of my suitcase, which crashed to the floor with a resounding thud. My body followed directly after –  tears immediately spilling over but without sound as I listened to what Matt was saying. “New spot… definitely in the skull… possibly in the brain.” As he continued to explain, my silent tears exploded into wracking sobs. He said that he’d get Dr. Macy on the phone so we could talk about this new development. I forced out something sounding like “okay” and disconnected.

I have no idea what this scene looked like to the average outsider, but I’m sure it was a full-on ugly cry. My body swayed back and forth as I wept uncontrollably, my hands fisting in my hair, stopping just short of pulling it out at the root. My mind reeled. This simply cannot be happening! My son! My darling son. A new spot is really bad. And infiltration into the brain would be super-size bad.

Call dad. Call dad. Call dad. I pulled up my speed dial list and anxiously awaited while the rings went unanswered. He always answers. He needs to answer. PLEASE ANSWER! This added to my distress, which had by then elevated to hyperventilation status. I left a voice mail.

“Dad…ppleaase… call as… soon… as possible.” And then some other fractured words which probably included: “Ben, spot, disease, brain, scared, bad….”

Just in case, I called right back. No answer. I called his wonderful wife to see if she knew where he was. I blurted in staccato: “Ben… tumor… brain… bad… please have dad call ASAP.”

Those freaking adrenal glands weren’t giving up. My body continued to fervently shake. When the phone rang, I nearly jumped out of my skin. I picked up but could not squeak out a greeting. The sobs were audible, though, so Dr. Macy started talking. “…Could definitely see the lesion in the skull but needed an MRI to determine if it’s in his brain.” Tears. Sobs. “Come in today.” Tears. Sobs. “I know where you’re going in your mind, Sarah… try not to do that….” Tears. Sobs.

Devastation.

Disconnect.

I’m sure my neighbors were frightened by what happened next. I screamed. I’d never heard a sound like that before, so it was shocking to realize it coming from me. The wails kept rising, louder and louder, until they crashed into a whimper, allowing me to catch my breath. When my dad called, I started off calmer but quickly escalated to actual hyperventilation. He kept me focused while encouraging me to breathe. It was one of the most difficult conversations I’ve ever had.

My friend, Sarah, dropped everything to come to me. My friend, Rhonda, rushed to the hospital to whisk Madeline away and keep her occupied. Matt drove and I’m not sure what I did. By then I was out of tears. During the MRI, Ben could see me in the mirror. He kept blowing me kisses as the machine loudly captured what was going on in my sweet son’s brain. My eyes burned with the threat of new tears as I tried to keep the look of worry from crossing my swollen lids.

Dr. Macy called rather quickly after the MRI to inform us that the lesion wasn’t on the brain. It’s bad that there’s a new spot – and so quickly – but it’s GREAT that it’s not in his brain. We’ll move forward with the MIBG therapy at the end of the month. And while we missed the trip to Chicago, we’re still able to take the second leg, which is a week with my family and friends in Ohio.

It will be a nice break. And boy, do we need one.

I learned 10 days ago that my son’s cancer has returned. Usually, I’d get right on my blog and start writing away about the options as well as including my hopes and fears and all the other nonsense that flies through your head when you’re given tremendously bad news. But this time, I did my alone-time crying and left it at that.

I guess I’m tired of stating and re-stating how cancer has obliterated our lives.

My coping mechanisms have always included an intense desire to hide coupled with my ridiculous sense of humor. And even though I write on my blog – a very public outlet – I’m still able to hide behind my computer screen: refusing phone calls, ignoring emails, saving texts to read later. It’s strange. I tell all of you absolutely everything as long as I have this computer barrier between us. And you all want to help. You all want to check in and see how we’re doing. And I appreciate it. I just can’t handle it in person. I can’t face you. I can’t face the pitying looks. I can’t face the hugs (even though I want them.) And if I do have to face you, I pull out my weird sense of humor just to give you the semblance of me being slightly okay. Also, I can’t face the advice. I rarely ask for it, even from other cancer moms, because we’re all so different. And when it comes down to it, nobody knows what to say. I’ve heard all the advice out there… I promise that you have nothing new to offer. No offense, but by this late period in the game, I’m extremely well-steeped in what options there are for my son, which, unfortunately, are rapidly dwindling.

There is a ridiculously high chance that I’m going to lose my son. And with each relapse it smacks me harder in the face. Please, before you castigate me for not embracing each precious moment with my children, please re-read my entries and note that I HAVE DONE THAT every step of the way. It’s just when the beast returns rearing its’ ugly head, I have to rebuild my army. I have to restructure. Sometimes, that includes changing key players in my inner circle. Sometimes that means reorganizing a plan of attack. We’re past the point of asking “why.” We are now in survival mode. How long can we keep him healthy enough to enjoy his life? What are his limits? What are mine?

How do we do it? Honestly, that’s my favorite sentiment from friends and well-wishers: “I don’t know how you do it.” Well, friends, I don’t either. I don’t wanna do it. I wanna lay on the couch and watch stupid movies and ignore all the nonsense. And sometimes I do when I’m alone. When the kids are with their dad, I sometimes pretend that cancer doesn’t exist. Yesterday, in my alone moments, I put on my headphones and listened to music at a deafening level, singing at the top of my lungs (probably much to my neighbor’s dismay) and watched myself dance in the mirror. Embarrassing? Only if I get physically caught. Relieving? On some level, yes. I can still “get down” (at least in my own mind) and if I can’t hear myself sing because of the loud music pumping through the headphones, then I think I sound like a real contender on one of those Idol or Voice shows or whatever stupid television programming we numb our minds with. Hey, I could be addicted to crack or some nonsense like that, but I’m navigating this solely on antidepressants. Well, and sometimes a little beer.

Regardless, here we go again. I’m madder than usual. Mad that another summer has been squelched by cancer. Mad that my son has to do this AGAIN. Mad that “important people who could make changes” simply don’t give a crap about Childhood Cancer. That has been made very clear – extremely clear – that it’s not going to change. There are wonderful people out there fighting to be heard, fighting to save our children, and I applaud them. I am grateful for them. But it’s depressing that all their hard work is falling on deaf ears. The people in charge of shifting the attention to children probably get kickbacks from someone stronger… which just doesn’t seem right. It takes a true bully to not give a shit about sick children.

So, when I went to get my bangs trimmed yesterday, it was really one of the first times I was in contact with someone who knows Ben very well (she cuts his hair, too.) She has known us for a long time. She reads my posts. She is actively interested in what’s happening in our lives. So, when I saw her, I had to deal with the tears I knew would be coming. She hugged me tight and asked how we were. Well, frick. What does one say? “We’re scared, Tawnee.” And then I didn’t say much else other than explaining the situation and what options we were considering. She did the rest of the talking. Words like “you’re so strong. and kind. and sweet.” All descriptors that she used for my children as well. Then she said, “I’ve seen you go through so much. I’ve seen you at your lowest. I’ve seen you completely broken. But now I see you strong again.” She applauded me for making some serious changes in my life over the years and then she said this: “I admire you.”

Now, I hear “you’re so strong” and a lot of other varieties of similar statements, but “admire?” That one is not as common. And it brought tears I wasn’t ready for, which if you’re getting a haircut, any moisture on your face is going to attract little bits of annoying hair. She let me know that my words were reaching more people than I could imagine. And that they’re actually helpful. My open heart is actually doing something for the greater good. She picked the tiny pieces of hair off my face and wiped my tears, which was the closest thing to being “mothered” than I’d had in a very long time. It’s hard to let myself be that vulnerable in public. Here on my computer? Sure. But in person? Letting her see my pain was something I sincerely have trouble with. I don’t often trust people with that piece of my heart. There are many reasons why, but letting my pain out in my blog often feels safer than letting someone hold me when I’m crying. Probably my cynical nature. But I’ve been shown – harshly – that some people pretending to care simply don’t have the capacity when it comes right down to it.

So despite wanting to hide and despite letting my emotions flow here rather than “in person,” it felt meaningful that someone could even begin to gather something from this terrified person hiding behind her computer screen pouring her own heart out to a land of anonymous hearts. We’re beating in rhythm for once. And that is truly replenishing to me.

We’ll rebuild this army. And nothing will stop us.

Until it does.

Then we’ll rebuild again.

So, the little girl who got “kicked out” of KFC for having a face too scarred to let others enjoy their 11 herbs and spices has been deemed a hoax. The little girl does, indeed, have a legitimate medical issue – she was attacked by dogs that took her eye and left her precious face severely scarred – but KFC did NOT throw her out for being too scary. That was made up by one of her family members in order to get some cash.

Gross.

When I first read this story, my heart went out to this little girl. There is absolutely no doubt that she has been through hell. Getting attacked by dogs is some seriously scary stuff! Then, to be kicked out of a freaking fast food restaurant was beyond my comprehension, but there are truckloads of idiots existing out there who might have lost all compassion and forced her to leave. This scenario broke my heart. Evidently, it broke many other hearts, too. The family raked in over $100,000 PLUS the $30K that KFC pledged to help with medical bills. I’m not against this little girl getting money for her legitimate medical need, but the way they did it was deplorable. Despite the new evidence that this was a hoax, KFC is going to make good on their donation, which I applaud.

Now, I know that these large companies have strong legal teams that sort through stuff like this. Slip and falls at Walmart, fingers in Wendy’s chili, a real battered chicken head in your pile of McNuggets… these legal teams sort through the nonsense claims. I used to work for Ricart Automotive (a very large car dealership in Ohio) answering phones and the majority of the calls were pissed off customers wanting to speak to the legal department. I’m sure some were legitimate claims, but many were just looking for a settlement. Squeaky wheel gets the grease, I guess. Whatever. Many people make a good living off their frivolous lawsuit lifestyles while showing no remorse.

So, why am I bothered? Because these people really hurt those who have a legitimate need. There was a woman here in my hometown of Aurora, CO who shaved her child’s head and led everyone to believe that this child had cancer. The little boy – age six – totally believed that he was dying. She received over 25K in donations. So, she didn’t just take advantage of the generosity of others, she tortured her own child into believing he was going to die. Unfortunately, this scenario isn’t uncommon. She wasn’t the first person to think of such a scam.

Gross.

So, we’ve been at this for 10 years. We’ve received thousands of dollars from gracious donors. With that, we’ve paid medical bills. We’ve paid for travel to NYC and KC. We bought food and paid utility bills. We bought medications. And, admittedly, we bought toys and treats and clothes. For all of us. There were a few of you who gave us some money labeled solely with “Go have some fun with this.” So we did. Those fun things got us through the tough times. Video games for Ben (and Matt), toys for Madeline, crafts for me. A road trip to forget about cancer. Little things that got us through the nonsense and brought us some much needed joy.

Okay, so here’s what pisses me off about all of this. These parasites find a way to make their stories go viral. And then when it turns out to be a hoax, all the lovely and generous people get deflated over helping these idiots fund their lies. I’ve been taken twice by internet ding-dongs. One lady started her Facebook page at the same time I started Ben’s. She was able to garner over 5,000 “likes” in just a few weeks, whereas Ben’s page has steadily grown to 1,600+ over the last couple of years. She kept pushing the issue of sharing her page (a share for a share is what it’s called… she’d share your page on hers if you’d share hers on yours…) Well, she turned out to be a big fraud. She had people all over the world sending her stuff (she liked owls) and always talked about how happy it made her to receive a package from someone new. It made her forget her illness. All true statements that she stole from real people who are truly hurting. And then once she was found out… “POOF!” She disappeared.

So, now I really don’t “share for a share” anymore unless I directly know them. And this is what I’m afraid of. People will get so cynical (like me) and stop supporting those who truly need it. Who need the donations to survive. To live. Or to enjoy fleeting moments in between medical treatments. Damn these people!

And then there’s the person who stole my son’s identity to support her own weird needs. She never took money, but she garnered a lot of attention. Know this: I know who you are and I’m watching you carefully. If you “POOF” from my view now, you’ll only prove who you truly are, which I will then share with the rest of my world. You wanted attention, right? I’ll be happy to give that to you but I guarantee this is the type of attention that you will not like. Hopefully the slap on the wrist you got from authorities has turned you away from screwing with others emotions. Our very real hell afforded you the attention you so desperately desired… hope it was worth it.

I’m to the point where I wouldn’t be offended if someone wanted proof of my son’s illness. Many charities require a doctor to fill out a form stating that the medical need is real. I think that’s acceptable. Because there are so many turds out there abusing the system. A little due diligence never hurt anyone, and people who are truly fighting for their child’s life won’t be offended to give you their doctor’s name or the actual details of their child’s diagnosis. The frauds can rip off words from the rest of us on our blogs that talk about throwing up and hair loss and all that… those details can be faked. But take the extra step to make sure you’re not getting screwed.

Better yet, why don’t these frauds just simply get their own life? I mean, if they really and truly want to trade their health for my son’s illness, let’s find a way to make that transfer happen. Otherwise, just STOP!

Please. Stop.

 

 

 

*Warning: Today’s post has some fairly offensive swears. I’m not sorry.

Today is my son’s 13th birthday. I gently kissed him before taking the dogs out for a walk – hoping to not wake him – because I am praying that he’s dreaming of something way more amazing than his current reality.

I am so fucking sick of cancer overshadowing every single day. Every. Single. Milestone.

I know. I sound defeated. I feel defeated.

I’ve been throwing myself quite a pity party lately. One month ago I was saying “Well, after this week of scans we’ll know what we can plan for the summer.” And, of course, after learning of the spot, I was put on hold for another month. Then, my sunshiny attitude said, “Well, after THIS set of scans we’ll know what we can plan for the summer.” And on Wednesday, Dr. Macy said she felt pretty good about where he was (she said 95% sure that this spot was nothing) but still wanted to do a different scan to be 100% positive. So, on Thursday, we did the scan. And it didn’t give us the extra 5% we were hoping for. In fact, it changed the game. Two spots. The talk of doing a biopsy. The talk of treatment options.

“So, are we calling this a relapse?” I asked with one hand clutching my thigh as tight as I could – hoping the physical pain would keep me in the present – as the other hand gently caressed my stunned son’s shoulder.

Dr. Macy said no. Not yet.

Yet.

Goddammit.

All the adrenaline that I had been storing up for the second scan week, I’d let go of 95% of it when Dr. Macy said she was 95% sure it was nothing. Then, it all came flooding back at once. It was like slamming on the brakes to avoid rear ending a car, but instead of that feeling dissipating after a few minutes, I’ve managed to maintain it for the past three days. It’s highly uncomfortable. I’m trying to focus on making this an awesome weekend for Ben. This is supposed to be a major milestone! He’s becoming a young man! Unfortunately, he’s had to be more of a man in his 13 years than any other man I’ve ever known. I could go off on a tangent here and express that Ben is more of a man than ANY OTHER MAN I’ve ever met. But that’s anger best used for another time.

So, as I turned my head away from the conversation to look out the window behind me, I caught sight of my hand still caressing Ben’s shoulder. His thumb and forefinger were pressed against the bridge of his nose. Men don’t cry. At least that’s what he’s heard from others. I can only imagine the battle between letting the tears flow and hearing the echoey voices telling him to “Man UP!” I don’t know this, of course, but he didn’t want anyone to see those emotions. The emotions of a potential relapse. The tears of fear. I saw two small wet spots spreading on his shirt like a gunshot wound. I weakly stated to him that it was okay to cry. Only then did I feel the silent shake of his small frame as more tears fell despite the barrier he’d created with his fingers. I looked out the window hoping to suppress my own. Mom isn’t supposed to cry either.

Unfortunately, I’ve worn my heart on my sleeve throughout this entire 10 year process. He knows that I’ve been terrified on this journey. He knows I don’t want to lose him. He knows that if he leaves then my world will be shattered. (Don’t you DARE respond to this post with “at least he’d be in a better place” or any nonsense about “Angel wings.”) Sometimes I think he fights so hard because he feels accountable for the rest of us. I don’t want to add to his stress, but I’m pretty confident this child feels responsible for all we’ve been through. He knows that we’re financially fucked because of his treatment. He knows we only have “fun” because other people generously give. He knows that we can’t pay for the wonderful opportunities he receives. And he feels responsible. I had to ask for people to help us get his birthday present. And that makes me feel like shit. Especially when others bluntly remind me that I can’t do it for myself – for my own children.

We’re being held hostage again. So I’ll take baby steps to the shower. Baby steps to wash my hair. Baby steps to get through this day of celebration. Knowing that each baby step will take us closer to the bullshit that cancer continues to throw our way. Happy Birthday, Ben. Enjoy that cake now. You have a biopsy in the morning and can’t eat after 7 pm.

Actually, that last statement was for dramatic purposes (did I really need to add more drama?!) He was supposed to have a biopsy tomorrow, but for now we’re waiting for his surgeon to get back in town – the surgeon originally consulted doesn’t think she can get to the spot because of there being too many blood vessels surrounding it. More on that tomorrow, I guess.

I will say, however, that if Ben has relapsed, I’m taking him to Hawaii as soon as possible because that is his greatest wish right now. And I’m going to ask all of you to pay for it. And I’m not going to feel guilty about it. In fact, even if he hasn’t relapsed, I’m still going to take him to Hawaii as soon as possible because he deserves some freaking JOY in his life. I didn’t hold a fundraiser the last time he relapsed because of the overwhelming guilt I have surrounding asking people for help.

But screw it.

That’s what friends are for, right?

 

 

 

My Dear, Sweet Camp Wapiyapi:

Oh, how I Love You.

You, a shining beacon of love that engulfs my children in a warm and glowing hug of gooey hope and acceptance; recruits loving and nearly impossible-to-believe humans who exude compassion and ridiculous amounts of cheer; encourages me to be a “smother” yet gives me the confidence that my delicate – yet tenacious – children are absolutely fine without me….

Oh, how I Love You.

From that first year I drove the 90 miles to your beautiful mountain setting in 2007 to today, my love for you withstands. I entrusted you with my precious seven-year-old. I was apprehensive to leave, yet wept at the concept of having this rite of passage – this normalcy – of sending my child to camp. Sure, it was a camp specifically for cancer kids, but it was priceless for someone like me who never anticipated – or felt secure enough – to leave their child in the care of others for a full five days. And as I watched from behind the wheel of my vehicle as my sweet boy confidently grasped the hand of his companion, I cried. The image forever burned in my mind of my heart incarnate as he held the hand of his much taller companion – a wonderful college boy named Chris – as they walked off toward their cabin, ready to make new, non-cancerous memories.

Oh, how I Love You.

You tout that you offer these children “The Best Week of the Year.” That’s a hefty claim, but one you consistently make good on. Many events in this world of pediatric cancer are “once in a lifetime” events. Gee. How do I explain this graciously? So many philanthropic hearts want to offer the pediatric cancer community something amazing – and we have had some incredible opportunities. I’ve appreciated them all, of course, but what I’m trying to say is that Camp Wapiyapi is CONSISTENT. It is something that my children look forward to every year. Even the year that Ben missed when the cancer came back or the year that he had to leave early because he had just started chemo. You remain a part of our FAMILY. Do you know what that means to me?

Oh. How I Love You.

And now that Madeline is old enough to go, it has been instrumental in her development. This is one of the things I LOVE MOST about Wapiyapi – the fact that Madeline is included. She has been able to bond with siblings just like her, who often feel forgotten PLUS have the ridiculous distinction of having to watch their sibling struggle through something so awful. She has learned that she is not alone. The silent shame that she carries – the fact that she gets a bit peeved when her brother gets cool stuff and she doesn’t – isn’t a burden at Camp Wapiyapi. Other siblings carry that, too. It’s NORMAL in our abnormal world. And the fact that Wapiyapi includes her, accepts her, and loves her – just as much as they love the children who have the cancer diagnosis – means the world to her. And to me. In fact, you saw her blossom this year when she stood alone on a stage in front of you and belted out a song in the talent show. She chose, “Let It Go” from “Frozen.” Any parent with a young girl living in their home knows this song – and perhaps is more than ready for this song to be a passing phase – but honestly? I would have loved to be in the audience listening to my daughter belt out something we’ve been working on… to simply “Let It Go.” But since I wasn’t in the audience, I am genuinely touched by all the people who came up to me yesterday to let me know what a beautiful job she did.

Oh, how I Love You.

I felt like a star yesterday when I pulled in to your stunning mountain setting. I opened my car door to a flood of adoring Ben and Madeline fans who longed to gush about my beautiful children. Your descriptors filled my heart: Sweet. Loving. Caring. Compassionate. Kind. Adorable. Amazing. Strong. Polite. Gracious. I can live on these words for a long time. But the super cool thing is that I know you offer these words to all of us. You LOVE our children. You sincerely, undoubtedly, whole-heartedly love our children.

Oh, how I Love You.

The joy you exude and instill in my children will keep us coming back for more. I hope that my children will want to be Junior Companions when their time comes. Ben’s companion this year – the AMAZING Tanner – has fought cancer twice. I would think there might be a time when a teenager/young adult who has fought for his life would want to leave all that behind. But the fact that Tanner stepped up to make the best of his horrific experience – that he was there to encourage my little fighter to keep on fighting – touched me to my core. You are an incredible young man, Tanner. I sincerely hope that my Ben and Maddy follow in your footsteps and offer their amazing insight just like you have. You are so very brave. I applaud Wapiyapi for giving you an environment to use those amazing talents. And Maddie, thank you for caring for my Maddy. I don’t know where Wapiyapi finds beautiful souls like you, but I’m forever grateful that you shared precious time with my daughter.

I know, I know. My cynical self doesn’t usually get this oozy when it comes to sharing the love. However, I simply cannot express my gratitude for Wapiyapi without it getting all sticky. You’re like a unicorn wrapped in the glossy threads of cotton candy. You can’t believe what you’re seeing is real. It’s so beautiful – and nearly mythical – that all these amazing people come together to care for these remarkable children. It’s almost like a mirage… the swirling beauty wavering behind the intense heat. And as we walk closer – the thirst for this beauty palpable in our dry throats begging for a sweet drink of love – fearful that you are actually a mirage and will disappear at any moment. When we arrive and are able to touch you, we weep in relief that you actually do exist.

You’re real. Thank goodness.

Oh, how I Love You.

Sincerely,

Ben and Maddy’s Mom.

 

 

 

It’s difficult to thrive when there’s so much on my mind but none of it wants to come out. I’ve started this particular post several times – over several different days – yet words are just spinning in my head instead of flowing onto the screen of my award-winning* blog.

I’ve resumed my world-famous defense mechanism of going into hiding. Not answering the phone. Not responding to messages. Muttering under my breath and taking out my anger on non-essential insects. Honestly, we do have a ridiculous amount of moths around here right now – and since Ben and Madeline are seriously freaked out by any type of flying bug (it’s borderline phobic – like my issue with clowns and ticks) – I’ve been doing a lot of bug killing lately.

My homicidal tirade hasn’t helped to elevate my mood because I’m thinking of that spot. That damn spot. The spot that might be nothing or the spot that might be recurrent Neuroblastoma. Ben’s scans were last week. And the time in between that last scan and when the doctor comes in to discuss the results are like the preparation of ripping off a band-aid. JUST TELL ME THE RESULTS OR I’M GOING TO GO MAD! So, I’m all prepared to lose some hair where the sticky bits of the band-aid has adhered to my skin. I close my eyes tight and grab the loosest end, getting ready for the sting of ripping hair out from the root. I even turn my head a bit like there’s a physical blow accompanying the follicular extraction. When the doc says “No Evidence of Disease,” the sigh of relief gives the sensation of “that wasn’t so bad! Yay! I can heal!” When the doctor says “Relapse” the fallout is horrendous, but at least we know that we need to come up with a plan. But when the doctor says “we don’t know what that is but we’ll have to wait five weeks to do anything about it,” well, I’m thinking this is a little worse than “relapse.” At least, that’s how it feels right now. I didn’t get the luxury of relief and I wasn’t told I needed to get out my armor again. I’m in a holding pattern. And it sucks.

So, there’s a spot. It’s near the area where he relapsed last time (near his collarbone on the left hand side.) Most of his major cancer activity has been on the left side. Left adrenal gland. Left rib. Left neck. Left collarbone.

Crap.

There is a possibility that it’s nothing. Of course, this is what I’m hoping for. But the wait until we can scan him again is excruciating. Meanwhile, when the doctor explained it to Ben, he said “I really feel that this is nothing.” And I’m not sure, but I think he’s forgotten about it. He’s focusing on finishing school this week and going to camp the first weekend in June. He’s moving on. I’m trying to take my cues from him, but I’m not nearly as strong as he is.

So… that’s that. And until I know what that damn spot is, I’m going to be crazier than usual. I’m trying really hard to appreciate each moment. I am. But in watching him this very minute as he tries to get through a morning of school… his nearly 13-year-old mind looking forward to the break of summer… the essay he just wrote about wanting to create video games when he grows up… the kind soul that personifies my darling son….

I’ve simply lost my tolerance when it comes to this stupid cancer nonsense. I know it thrives on sucking the lives out of the patient and the caregivers, but I feel we’ve given enough.

Enough already.

Enough.

 

*This blog hasn’t won any awards except in my mind. 🙂