Stronger Than I Look

“Yay! Ben! We don’t have to come back here for an entire YEAR!!!” I grabbed his small hand in mine as we walked down the hall away from the room where he had just completed his MIBG scan. It had been six months since his prior scan and report of “no evidence of disease”. Dr. Greffe told us at our semi-annual appointment that if these scans came back clean that we would move to annual scans. My system heaved a huge sigh of relief as we moved further away from the world of neuroblastoma.

A whole year, Ben! We don’t have to come back here for an entire year. I smiled as I held that little hand in mine, all but skipping with joy down the hall. Ben, being a newly minted eight-year-old, didn’t really seem to care about the news I was basking in. He had nearly forgotten about  the chemo, surgeries, radiation, bone marrow transplant, and the months of painful antibodies and huge horse pills he learned to swallow at the tender age of three. This grueling therapy had robbed him of being a toddler but it had kept him in remission for four years. Dr. Greffe said that it was uncommon to relapse this far out. Dr. Greffe said that we’d be moving to annual scans. Dr. Greffe said…

Dr. Greffe said he’d call later with results.

I was laying on my stomach on the bed, letting “scanxiety” release from my body. This is a phenomenon I can’t explain, this “scanxiety”. Those in our “position” know that scan time is something that is inevitable and you always breathe a sigh of relief when it’s over and everything’s clean, but there’s always that anxiety that flows through the patient, the caregiver, family and friends that there might be something lurking. Something set on destruction and completely willing to explode and ruin life as you know it. I always worry during scan time. It can’t be helped. This is my baby we’re talking about, after all. My precious, wonderful, sweet son who was fighting with his sister downstairs as I released my “scanxiety” in the best way I knew how: by doing absolutely nothing.

Becky in radiology said that his scan looked good. Becky loves all the neuroblastoma kids. She has a bulletin board filled with pictures of neuroblastoma kiddos she’s known over the years, and Ben’s kindergarten and first grade picture were posted up there on her “board of fame”. Ben was the kid she pointed out to other neuroblastoma families as they dealt with their own “scanxiety”. I never heard her say it, but I can only imagine her words, “See this boy here? Four years he’s been clean. There is hope. Kids do survive this horrible disease and Ben is one of them.” Becky said his scan looked clean. She knows how we as parents suffer through scan time. She told us with as much authority as she had that his MIBG scan looked good. Becky said “See you next year, Ben!”. Becky said….

The phone rang shaking me out of my attempt to clear my mind. Caller ID said it was Dr. Greffe. I picked up the phone despite the cacophony of the ongoing battle between Ben and Madeline downstairs. I expected that the phone call would be very short. All he was going to say was that everything looked good and that he’d see us in a year. Right? But Dr. Greffe said…

“Sarah, the CT scan shows that Ben has a mass behind his heart.”

That metallic taste that goes hand in hand with a rush of adrenaline overpowered my mouth. Stunting my ability to speak. Stunning every sense I have. My mind swirled with question after question. It reached and tried to grab hold of all the positive things that Dr. Greffe had said. That Becky had said. That statistics had said. What had they said? What was he saying? Are you telling me that Ben’s cancer is back? BUT YOU SAID…!

I heard what he was saying. Behind Ben’s beautiful, wonderful, kind heart, there was a mass. Something growing. Something that didn’t belong there. Something trying to destroy my son. Wait. What are you saying?

Without fully realizing what I was doing, Matt came up behind me and put his hand on my back. I guess I hadn’t said anything at all since my answer of “hello”. Matt must have realized that I was speaking with the hospital. While I hadn’t made any audible statements my actions said it all. I had sprung up out of bed, stumbled to the railing of the stairs and was holding on for dear life. I was doubled over. I can only imagine what my facial expression was.

“What are they saying?” he whispered. He took the phone from me and turned on the speaker. Since I couldn’t say anything, Matt announced that he had switched the phone to speaker and needed him to start the conversation over again.

Dr. Greffe said. He said. He said that there was a mass behind Ben’s heart. He had already taken the liberty of scheduling an emergency biopsy for the following day. While they couldn’t confirm that the mass was definitely neuroblastoma, they knew it was something that needed to come out right away. Matt and I sat on the floor in Madeline’s room. Surrounded by pink walls. A fluffy canopy bed. Bright. Girly. Pretty. We faced each other. The phone was laying on its back spewing terrible awful hideous information at us in the midst of Madeline’s sugary sweet room.

We remained silent as we listened to Dr. Greffe give us details of what needed to happen the next day. No eating after midnight. Check in at 0:00 hours. Surgeon will go in through Ben’s back. Plan to stay overnight. We’ll do everything we can. I’m sorry.

Dr. Greffe said he was sorry.

The ice cream cake we got as a celebratory “clean scan” reward sat melting on the counter as I went downstairs to do what had to come next.

I said, “Ben, please come to me.” I sat down on the couch and motioned for Ben to come over. Ben thought he was in trouble for fighting with Madeline. He started to defend his actions as I enclosed him in my arms. Holding him. Hugging him. Getting ready to prepare him for what was coming next.

I said. My God. What do I say? How do I tell this wonderful, sweet boy about what comes tomorrow? After all, I just finished telling him that we didn’t have to go back to that hospital for a whole year. I’m his mom! He trusted me! Dr. Greffe said. Becky said. I said.

What do I say?

“Ben. The hospital just called. They said your scans showed a mass behind your heart.” My arms encircled the small frame of his body. His weight a slight 40 pounds on my lap. My eyes staring into his big brown ones as I told him of what was going to come next. I watched as his brow furrowed. I could see the questions swirling in his head as he processed the news of what I was telling him. More pain. More scars. More yuck. But I wasn’t prepared for what he asked. What Ben said.

“Mom, am I going to die?”

And as my mind scrambled for what to say to my beautiful eight-year-old son, my mouth took over.

“Ben, I sure hope not. We don’t know what’s going to happen but I can promise you that we’ll fight with all we have and go wherever we need to go and do all we need to do to get you through this. I will never leave your side.”

That’s what I said.

And one year later, here we are. We’re still fighting. We’re going where we need to go. And I’m never leaving his side.

We’ll get through this kiddo. And that’s all I have to say.

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I’m so glad we’re not in NYC for Meteor Watch day. The light pollution in the city is so intense and would definitely mar our ability to catch a glimpse of any shooting stars. It makes me wonder if city dwellers are ever interested in heading out for a nature trek to see some of the more spectacular sights? Yes, NYC is filled with amazing man-made spectacles but there’s nothing like laying on your back under a blanket of thick stars and watching a star or two streak across the sky. I guess Times Square does have that Naked Cowboy – maybe that’s enough “streaking” for the average New Yorker? I really can’t say.

I just had a flashback from my days as a camp counselor. Now, while most of you would have imagined me as a counselor for children with special needs, I chose to spend two summers as a counselor for the over-privileged from the Tri-State area. Most of the children I worked with were from incredibly wealthy families. They were shipped off to camp for the entire summer and had to endure the following: blistering heat without A/C, no nanny to entertain them, no housekeeping staff, no personal chef, onslaughts of Japanese beetles, swimming in a lake instead of a temperature controlled private pool, and counselors who grew up poor.

Anyway, my bunk of kids were really very good despite their slightly-spoiled upbringing. My girls worked hard to pass their daily bunk inspection and nearly always won the “cleanest bunk award”. I made a deal with them that if they won this award “x-amount of times” then we could walk to the nearest pizza place (two miles away). This appeared to be incentive enough as my girls busted their behinds to win the weekly award.

The day arrived where their consistent victories would finally be rewarded. Armed with water, sunscreen and good footwear, we set out on our two-mile walk to get our pizza. About 1/2 way into it the girls started to lose their enthusiasm. The country air rung with cries of “Are we there yet?” and “My feet hurt!” I tried to make the walk in the country an adventure, but they weren’t buying it. Then, lo and behold, there was an animal up ahead in the dirt road. I immediately knew what it was since I’d grown up in a land fraught with agriculture. The girls, however, were terrified. As we drew closer, the animal strutted a bit quicker, its head darting back and forth making his bright red comb dance. Yes. It was a rooster. The girls completely lost their minds as we drew closer to the bizarre and exotic bird. And as we were passing by, the rooster seemed to sense their trepidation and exacerbated the situation by stirring up a little dust with his erratic movements. Screams sliced through the air. I explained that it was merely a rooster and he really wouldn’t hurt them at all. My girls had never seen such a thing. A rooster? What on earth is THAT?

It makes me wonder what their Fisher Price “See and Say” taught them? I have a feeling that while my version of the ‘See and Say” spouted phrases like “The Rooster says “COCKADOODLEDOO!”, that their “See and Say” stated “The taxi says “HONNNNKKK!’” or “The pedestrian says “I’m walking here!”.

Anyway, the girls were completely traumatized, which kicked up their speed a notch or two. We arrived at the pizza place in record time – covered with dust, dying of hunger, and a bit shaken from the encounter with the creepy farm animal – only to find out that the pizza place was closed. CLOSED? REALLY? This was back in the late 80’s, before everyone had a cell phone, so we were forced to walk all the way back. The girls were completely deflated. And overly cautious that a band of vicious roosters were gathering and waiting for us to pass through again.

We were able to make it back to the camp in time to enjoy the offerings of the cafeteria but the girls just didn’t have it in them to eat grilled cheese with their choice of tomato or tuna in the middle. I promised them that I would make good on the pizza. And while they didn’t find that particularly encouraging, I threw in that I would have it delivered directly to the camp and that we would have a massive pizza party and stay up late and toilet paper other bunks and have a silly string fight with the boy’s bunk of their choice.

I’m hoping that nearly 20 years later they’ve finally forgiven me. And maybe they think of me as they’re teaching their children about roosters. I can only hope.

Back to stars, Ben was recently featured on the Parents.com website for the story on Icing Smiles, the amazing non-profit that made Ben’s incredible Yoshi birthday cake happen. Check it out here: http://www.parents.com/blogs/goodyblog/2010/06/amazing-cakes-for-ailing-kids/ Ain’t he cute? He LOVED his cake and was sad to dismantle it. He wanted to keep it! I know his birthday wasn’t the best scenario, but so many people pulled together to make it special. I hope he’ll remember it fondly despite being away from home and going through un-fun cancer stuff.

Ben is also featured on Icing Smiles website at www.icingsmiles.org.

We’re back in Colorado now. We had a nice birthday party for Ben thanks to the Hoskins/Skogen family. They allowed us to come over and piggy back off a party they had earlier in the day. They had rented a bouncy house for their afternoon function so we were able to use it for Ben’s evening party. Mike Garcia, our dear friend from the Outback, came and brought lots of chicken and ribs. Ben played with his friends (and his new puppy, Yoshi). He had a great time.

This week we’re taking it easy. We finally heard from Ben’s treatment team yesterday and we are definitely going to start antibody therapy soon. So, we’ll start his round of shots here in Denver  in preparation for him to receive the mouse antibodies in NYC. Madeline is most likely going to travel along this time since she is officially finished with Kindergarten. She’s excited to go to the big city.

I have a feeling that as she matures she’ll be more interested in the Stars on Broadway instead of the stars in the sky. But I sincerely hope she has an appreciation for the beautiful world God made for her.

And won’t be too terrified of roosters.

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No, it’s not propofol awareness day, but thanks to Michael Jackson’s untimely passing (one year ago today) the drug “propofol” has entered the realm of common knowledge. I’ve known about propofol since 2004 thanks to stupid cancer. It’s the drug of choice for anesthetizing pediatric oncology patients. Once administered, they’re out like a light. Once the infusion is stopped, the recovery time is fairly speedy. It appears to be a good drug unless you’re using it illegally for a sleep aid.

Ben’s getting some propofol in about one hour. While he used to have propofol for nearly every scan and procedure, he’s graduated to needing it only when bone marrow biopsies are performed. He does not need it for scans and radiation since he’s able to remain still, but for the biopsy, it’s a very painful procedure and he needs to be anesthetized. A bone marrow biopsy requires the doctor to take a corkscrew looking device and drill into his hips to take a cross-section of bone. Most hospitals take bone samples just from the back (or the butt dimples) but here at MSKCC they take samples from the butt dimples AND the front of the hips. In other words, it’s a “four point” bone marrow biopsy. They just want to ensure that there’s absolutely NO disease in the bone marrow and this four point procedure is more comprehensive than the “butt dimple only” procedure. Would you want to be awake for that? Me, neither. Bring on the propofol.

During Ben’s initial treatment for neuroblastoma we lived in Ohio. During one of Ben’s routine scans he was hooked up to propofol so he would remain still. Remember, he was only two-and-a-half when he was initially diagnosed. While Ben is very compliant it’s ridiculous to ask such a small child to remain completely still for an hour long scan.

The propofol administration is fairly labor intensive. It requires an Emergency Room doctor to be present to administer the propofol and remain for the duration of the scan to ensure stable vital signs. I believe that the administration of propofol was fairly routine. Routine enough that the doctors and radiology technicians were discussing plans for their weekend while going through the motions of Ben’s scan. Hey. I get it. It’s just a job to them. They have a life outside of their work even if we didn’t have much of a life outside of neuroblastoma.

Listening to them throughout the course of Ben’s treatment was sometimes very difficult. I’d hear about their children having trouble at school. I’d hear about their car trouble. I’d hear about bad dates. I’d hear about normal, everyday life. Admittedly, it was very difficult to hear about their children. “Joey made three goals during last week’s soccer game” or “Heather made honor roll this semester”. Hearing about their normalcy alienated me in a way that I couldn’t explain. And it wasn’t like they were telling ME about their children’s achievements, they were talking to their co-workers while I was in the room watching my son get scanned for possible cancer activity. Of course, their normalcy would often throw me into a tailspin as I scrambled to celebrate my sick child’s achievements. Yay! Ben scored the best possible score on his MIBG scan. Ben has a steady girlfriend despite the statistics that long-term pediatric cancer survivors live out the remainder of their lives in their parent’s basement playing video games. My son excels at chemotherapy. He always wakes up .10 seconds faster than the average propofol recipient. Excellent!

So, when the staff in radiology began talking about their plans for the weekend I tried to tune them out a little bit and just focus on Ben. Watching him breath. Making sure he didn’t move which would cause them to have to start the scan over. Praying. Hoping. Sometimes silently crying. And then the discussion in the room turned to concerts. The ER doctor started talking about seeing Bruce Springsteen in concert and how it was the greatest show he’s ever seen. Myself, I’m not a big fan of The Boss. Well, the main exception being the song “Candy’s Room”. But otherwise, I can’t see myself forking out ridiculous amounts of money to go to one of his shows, especially waiting to hear the one song of his I enjoy, which never really hit the mainstream and most likely would not be played in concert. What’s the point? That’s right. No point at all.

A random voice shook me out of my thoughts to tell me that Ben’s scan was nearly over. I breathed a small sigh of relief and continued to watch him sleep. Then I watched as the numbers on Ben’s monitor started dropping. Oxygen levels bottoming out. The alarm starting it’s piercing screech of something being drastically wrong. The numbers kept dropping. The conversation about Bruce Springsteen was halted as the staff started to swiftly move around Ben. I was pushed backwards by the staff, pinned between the wall and the ER doctor as they tried to wake up my son.

The numbers on the monitor kept dropping. I could hear my thoughts swirling in my head. I was crying out “what’s happening” in my mind but nothing audible was coming out of my mouth. I was pinned. Watching my son’s lips turn blue. Watching his face turn blue. Watching the life drain from him.

DO SOMETHING. (why can’t I say it out loud?) DO SOMETHING! DO SOMETHING!!!!!

Someone placed a mask over my son’s nose and mouth and started working the bag to get oxygen to him. No improvement.

Oh, God. DO SOMETHING DO SOMETHING DO SOMETHING. I’m watching my son die! His life is leaving him right before my eyes. My last moments with him are of me pinned up against the wall while the ER doc tries to revive him. Screaming monitors. Staff scrambling around him. This was supposed to be a routine scan! Stupid cancer. Stupid Bruce Springsteen. COME BACK TO ME, BEN! YOU CANNOT LEAVE ME!

Much too slowly the monitor started to record a strengthening pulse-ox. Ben was breathing again on his own and the color was coming back to his face. His lips were still tinged with blue when I cut through the wall of staff and leaned down to kiss his precious lips. I picked him up and started singing to him as he struggled to regain stability. Adrenaline cut through each muscle that had been taut with tension and I started to violently shake. I was suddenly exhausted. Thoroughly relieved. A mixture of tears streamed down my face releasing my fear and embracing my joy.

You’re still with me. You’re still here. You’re going to be okay.

I think I’m going to throw up.

I learned later – much later – that the ER doc had administered too much propofol and that’s what caused Ben to crash. As the scan was winding down, instead of stopping the propofol he pushed the rest of what was in Ben’s tubing straight through to Ben’s little system. Ben was overloaded. And it almost killed him in the process.

I blame Bruce Springsteen.

Admittedly, I get anxious whenever Ben’s scans come around, especially when he has to be sedated. And today is one of those days. Any minute now they’re coming to get him. Hook him up to propofol. Put him to sleep. Drill into his back. Drill into his hips. Causing him pain in the process of looking for signs of neuroblastoma, the stupid beast that is trying to kill him.

So my recommendation is “DON’T try propofol at home”. Leave the propofol administration to professionals, especially those who are competent and paying attention to what they’re doing.

And especially aren’t fans of Bruce Springsteen.

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I believe that today is one of many “take your dog to work” days available throughout the calendar year, so don’t despair that you’re just now finding out when the day is nearly over.

I’ve never worked anywhere that would have allowed me to bring my dog to work. I guess it’s because I’ve always worked customer service or food industry type jobs. Or maybe it’s because the dogs I’ve had have always been ill-mannered. Being a former HR person, I’ve often wondered if an employee can file a worker’s comp claim for a dog bite from someone else’s dog on “take your dog to work” day? These are the questions that haunt me at night. Seriously.

Ben got a doggie for his birthday. My parents came to visit Ben in NYC over the weekend and while they were here Ben wrangled them into a visit at “our” pet store. The end of this particular visit resulted in a new dog for The Bean. He is over the moon for this dog! “Yoshi” is part Havanese and part Shih Tzu, or a whole “Havasoo”. The dog is truly adorable. I’d add a photo here but I can’t get my computer to cooperate. Pictures to come.

So, Ben turned NINE yesterday. I woke up early in the morning and snuggled up next to him, just breathing him in as he peacefully slept. The newly minted peach fuzz on his head soft against my cheek. Nine. I am able to remember very clearly when I turned nine. And while I’m hoping that Ben forgets a lot of this treatment hooey down the road I sincerely hope he recalls the efforts by so many to ensure that he had a very happy birthday. He was really concerned about having to spend his birthday in New York City, away from family and friends, and enduring yucky treatment. I think, though, that he had a pretty great day.

I put the word out to my friends on facebook to send Ben a birthday card to the Ronald McDonald House. Boy, did my friends come through! As of today, Ben has received around 250 cards from people all over the United States and a few from exotic locations, like Barbados and Australia. The walls in his room are covered with cards. The outpouring of love has been phenomenal and I am sincerely grateful.

I started this post earlier today and now it’s, well, it’s actually a new day. It’s after midnight and while I should be writing about whatever holiday is on June 24th, I feel that I need to finish what I started.

I’m having a bad day. Bad evening. Bad year. I’m so over it. So over people. So over cancer. So over all the uncertainty of absolutely every little thing.

Forget it. My head is swimming and I can’t focus. Ben has scans tomorrow and I must have a huge case of “scanxiety”. I can’t make heads or tails of anything. Be back later.

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Happy Birthday, Stronger Than I Look! You’re a year old now. You’ve reached all those milestones of rolling over, sitting up, eating cereal, sleeping through the night, crawling, and now you’re even walking. You’ve come so far but there’s still a long journey ahead of you. A whole life to be lived. Keep growing, little baby. You can do it.

I realize that I’ve posted just 1/3 of the last 12 months and missed many National Holidays along the way. I’ve decided that my blog will continue to celebrate National Holidays and how they apply to my life, since, oddly enough, they almost always do. Plus, I missed National Tap Dancing Day in May and you know I can’t miss posting on THAT particular holiday. Going forward, if I happen to post on a holiday that I’ve already discussed, well, I’ll reevaluate and see if anything else applies. Maybe something’s changed. Or maybe I’ll just find out what the word of the day is and see if I can use it in a sentence.

Regardless, I’m going to keep writing since I’ve got so much to say. I can’t keep it in because it drives me insane. Writing is my outlet. And if I don’t “say it, I’ll spray it”. Man. I haven’t used that childhood phrase for a long time. But it’s fitting here. Not writing about life will sit in me like the contents of a bottle of Coke that’s been shaken. Pop the top and KA-BOOOM! I’m sure you’d rather not have the contents of my life hit you in the eye and drench you with the high fructose corn syrup that embodies me.

So, I’ll keep up appearances that I’m Stronger Than I Look. I’m invincible, right?

Hardly. Today, I am exactly as strong as I look. I’m sitting here in the Ronald McDonald House in New York City at 1:27 PM on a Saturday. I’m still in bed, my Colorado Avalanche night shirt looking a little worse for wear. My hair is pulled back in a messy bun. Yesterday’s small bit of eye makeup still adorning my eyes, although it did slide down my face a bit. I’m a wreck.

Ben is playing Super Mario Galaxy 2 and excited about a two day break from the hospital. I’m letting him decide what he wants to do instead of having events planned for him – no required trip to a museum or National landmark – so he’s planning to go to the pet store on Lexington (he wants a small dog so very badly) and go see a movie (either Marmaduke or The Karate Kid). A low-key day is just fine with me.

I have to admit that I’m starting to enjoy New York City (Rhonda, you can say “I told you so” again!). I like knowing where things are. Dylan’s Candy Bar is on 3rd and 60th. Serendipity is just down the street from Dylan’s on 60th. Ben gets his Chicken McNugget fix on 1st Ave and 69th. Nintendo World is at 10 Rockefeller Plaza, just off 48th. I buy Madeline a supply of earrings on Lex and 64th and mail her a package every couple of days, so she knows we’re thinking of her while we’re here in NYC. The pet store we go to nearly every day is on Lexington, between 61st and 62nd. This place is the highlight of Ben’s day.

The pet store employees know Ben and are always excited to see him come through the door. They call out “BEN!” like he’s Norm from “Cheers”. They give him the option of picking out any dog he’d like to play with and we take it upstairs to one of the little play rooms. Lately, he’s been picking out a little Pomeranian he’s named “Princess”. She’s a wonderful puppy. She is very playful and Ben is hopeful that he can take her home when we leave NYC this time. Without bursting his bubble completely, I try to encourage him to just visit with her and enjoy the time we do have together. Don’t make too many plans. Take each day for what it is. I’m kinda tired of living life that way. I’m desperate to make plans. Solid, concrete plans. All the while, completely understanding that even solid, concrete plans change – even for those with a “normal life”.

I’m tired of not having a plan. Or having a plan that changes all the time. For instance, just when we felt like we finally had this radiation hooey all figured out (how many cycles, how many times a day…) our oncologist throws in a bonus round of chemo in conjunction with the radiation. Really? Thanks! That really made our day.

I haven’t written since arriving in NYC because the plan has changed at a rate that spins my head. We keep purchasing one-way tickets between Denver and NYC because we never know the plan or how long we’ll be here. As it stands currently, we’re here through June 25 to finish his 20 cycles of radiation (10 days, two sessions each day) and complete the necessary scans to “plan” what’s next. What I’m hoping will come next is finally getting started on this antibody therapy. Supposing this radiation does what it’s supposed to, we’ll leave here on June 26, start shots in Denver on June 30, and be back in NYC to start antibody therapy on July 5, which will go through July 9th. Then, maybe, just maybe, we’ll have a more predictable schedule.

If this plan doesn’t work out then I don’t even want to contemplate what will come next. If this next phase doesn’t happen that means that the radiation didn’t do what it was supposed to. That means that Ben isn’t clear of disease. That means that he might not be curable after all. That means that a life that is already fraught with emotional terrorism will escalate from Orange to Red (according to the color-coded chart compliments of Homeland Security).

But I’m not supposed to go there, right? Okay. I won’t.

One way that I’ve been able to work out my worries while in NYC is through walking. I walk everywhere. I borrow a wheelchair from The Ronald or from the hospital and I push Ben all over the city. It’s an exercise in dedication to find the perfect wheelchair for Ben. It has to be roomy enough for him to lay in the fetal position when he gets tired, there cannot be an IV pole attached to the back, the wheels must be properly aligned (or I’ll be stuck with what can only be described as a reject cart from WalMart). And it can’t have any gadgets or gizmos on the back that will interfere with walking. Yesterday, I maimed my toe on the metal gizmo that allows me to pop a wheelie over the curbs instead of dumping Ben out on the street. The injury I sustained yesterday hurt tremendously. I wanted to sit down and cry, but Ben was asleep in the chair and we were in the middle of Times Square. It was fairly crowded so I had nowhere to truly sit down to have my little pity party. I’ve decided though that I missed a grand opportunity to make some money. If only I had a cup, people might have felt bad for “The Crying Woman Who Was Bleeding And Had A Sleeping Kid With Cancer In A Wheelchair”. Passers-by might have thrown a dollar or two our way. Hey. It’s New York City. It could happen. Instead, I continued to walk to Central Park and up 5th Avenue leaving a tiny trail of blood. It was on my jaunt across 72nd street that I witnessed a pedestrian get hit by a taxi cab. He was thrown off his feet and out of the crosswalk. I heard his muffled cry from just a few steps behind me only to turn and see him flying through the air. The man was able to get up shortly thereafter. Fortunately, my autopilot kept making me walk until I had pushed Ben to the other side of the road. I stayed until I heard sirens and then walked the rest of the way back to The Ronald. Shaken. In need of a change of underwear.

So now I can add to my Times Square sign. “Crying Woman Who Is Bleeding And Has A Sleeping Kid With Cancer In A Wheelchair. Witnessed A Pedestrian Get Hit By A Taxi. Need Money. And Fresh Undies.”

Oh, this trip hasn’t been all bad. Sure, we’ve been shocked with additional chemo. Maimed by a wheelchair. Witnessed a man lose a match with a taxi cab. That’s some craziness right there. But we also got to participate in a dedication here at the Ronald McDonald House. Ben read a poem to the guests. I spoke about how great The Ronald has been to us. They gave us a box of butterflies to release, but since it was raining, we brought them back to our room to release the next day. Well, Ben decided to release them in our room that evening. Two days later I am still shooing butterflies out of our room through the teeny tiny crack of our seventh floor window. I’m guessing that The Ronald has had a suicide attempt or two since opening their doors here in NYC because you cannot open the windows more than an inch. Guess those of us who are on edge will have to take the subway down to the Brooklyn Bridge to end our sorrows.

Or cross at 72nd and Madison.

Thanks, loyal readers. I cannot thank you enough for walking with me through this nonsense.

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Old Maid’s Day came about after the end of World War II when many women were waiting for their GI’s to return from the war. Some women waited a long time. And, of course, some GI’s never came home. It left a lot of lonely ladies.

I imagine some GI’s left their sweet young girl behind only to return to an emotionally encrusted nag of a woman. This poor woman had just spent years waiting for the love of her life all the while having her bonbons rationed. The GI had it rough? Not hardly. War is nothing when compared to no chocolate or bananas or tea or milk or rubber or gasoline. And for crying out loud, no TYPEWRITERS, PAPER OR INK! Had I lived during that era, I would have fallen apart. No writing? I mean, really. There’s no doubt that I would have been an old maid.

While I admire women of that era I’m certainly glad I didn’t have to live during those years. Plus, I don’t look good in the big shoulder pads that were fashionable during the 40’s. Luckily, I got to skip over that section of the 80’s when they came back in style. I opted for skinny jeans and Duran Duran boots instead of big shoulders. A better choice? No. But what were the options?

While my high school years may have been a bit dry in the boy department (I blame poor choices in hairstyles) I’ve more than made up for it in my adult years. The key is to go where the boys outnumber the girls. And it helps to be isolated to some degree. So the boys can’t just hop in the car and go to the next town where girls are plentiful. I suggest Summit County, Colorado (or any mountain town) and, if you’re truly desperate, McMurdo Station in Antarctica. This option is not for everyone since you have to pass a rigorous mental health exam, because once you’re there, you’re stuck. I’ve even heard that if you die at McMurdo, they stick you on ice until the thaw comes, which could be months. And, if you make a poor choice, you have nowhere to run. You’ll be stuck with that poor choice staring you down Every. Single. Day. While I’ve never had to resort to going all the way to Antarctica, I did take full advantage of Summit County back in my 20’s. But, as I’ve stated before, the odds are good, but the goods are odd. And it, too, is a small county. Your mistakes tend to haunt you in such a tiny community. I had to move back to Ohio after my divorce because I couldn’t go to the grocery store without someone asking me “Hey, Sarah! How’s ***?”. To which I would respond “Gee. I don’t know. I kinda hope he’s on fire.” But once one person knew then the whole county knew. It was worse than high school in some ways. At least I had better hair by then.

So, if you happen to be an old maid, you’ll take comfort in knowing that today is also “Hug your cat” day. And everyone knows that if you’re an old maid then the chances of you having a cat is pretty high. Evidently, I was planning from an early age to be an old maid because I’ve been captured on film hugging many a cat. See case file #OM1977:

This cat did NOT want to be hugged. In fact, I think I was shredded shortly after this photo shoot. I still have the scars to prove it.

Okay, gotta get ready for my final laser session of tattoo removal. Tattoos are like a one night stand in Antarctica. They might seem like a good idea at the time, but they never are. And the removal process is EXTREMELY painful.

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Sorry. Sorry. Sorry. Sorry. Sorry. And, I repeat, sorry.

I haven’t been writing/updating lately because I just couldn’t. I can’t really call it a writer’s block because I’ve had plenty of material – perhaps too much material – and it all went rushing through my head over the course of this past month. All I could do was go with the flow. Let the river take me. Navigate the rapids when I could.

My rapids weren’t insurmountable, say, a Class VI (which is considered “unrunnable” in the world of white water rafting), they were more of  a Class IV, which can be described as “difficult to very difficult; long turbulent rapids with powerful waves and holes, and many obstacles requiring precise maneuvering”. And when I couldn’t maneuver, I just rode out the rapid, hoping I wouldn’t get caught by a strainer or pulled under water for too long.

I haven’t been on a rafting trip for about 12 years. Wait. How is that possible? I am very young and shouldn’t even be able to remember 12 years ago . Anyway, on that last river run, I was dumped out of the raft right at a critical moment in paddling through a rapid. That had never happened to me on prior trips so it was quite a shock to be paddling one moment and then pitched into an icy cold river the next. The suddenness of it all had me reeling. I’d been through the drills of what to do when thrown into a rapid time and again, but having never had the real experience of it had me frantically recalling what I needed to do to survive. My teammates pulled me in before I got left behind and all I suffered were a couple of bruises. The bruise to my ego was particularly ouchy.

Happens to the best of us, right?

Interestingly enough, someone was standing at the river’s edge videotaping us as we went through the next stretch of white water. We got to see the video before packing up and heading home that same day. The video showed my teammates digging in with their paddles, a mix of adrenaline-soaked expressions and exhilarating shouts coming from the boat as we soared through a Class V rapid. But when the camera panned to me, the fear was evident on my face. I’d been thrown out just minutes before and here we were navigating another rapid. I was terrified of being thrown over again and it showed very clearly on my face. I was going through the motions, punching through the water with my paddle, digging in with all my might, but my expression was completely different. Where my teammates were enjoying an incredibly thrilling moment, I was scared to death. I was afraid of it happening again. A repeat. Relapse.

Relapse. I hate that word.

We’ve been through all of this with Ben before. We “made it” to the other side of therapy and enjoyed four years of Ben being in good health. We had been tossed out of our raft in 2004 but we braved the rapids and said good riddance to the Beast Named Neuroblastoma in 2005. And I wrote, multiple times, that if we could just keep Ben from relapsing we’d be in good shape. We’ve known kids who made it through initial treatment and survived long-term. We don’t know many – or any – kids who have survived recurrent neuroblastoma long-term. A repeat of this disease, well, we all could have done without that.

Four years. Four years that sneaky neuroblastoma waited before making a comeback. Repeat performance. Recurrence. Relapse. And we’re coming up on the one year anniversary of starting all of this hooey over again. My face might not show the raw fear of what my white water video showed but I know I’m exhausted. Tired. Worn out. And, unfortunately, we’re not even close to being finished with his therapy. We can’t get that stupid spot to go away so we have to do some more radiation. We were in NYC last week for simulation (he got FIVE tattoos) and we’re supposed to start therapy June 10. We’ll most likely be flying back to NYC mid-week to start therapy.

June 10 is also the day of Madeline’s first acting performance. Her Kindergarten class is putting on “The Three Piggy Opera”. And I’m going to miss it. Just like I missed her very first field day where she excelled at jumping over hurdles. And her first day of Kindergarten. And all those milestones the first year of her life because we were constantly in the hospital battling neuroblastoma. She recently told me that she believes I love Ben more than I love her. Her carefree and gregarious spirit is being crushed by this evil beast. Flipping cancer. It’s not that I’m upset that you tried to ruin our lives once, it’s that you’re trying to do it again. Your repeat performance was so unnecessary.

So, let’s talk about something much more funner than cancer (I said ‘much more funner’ on purpose despite knowing that it is hideously grammatically incorrect). During our last trip to NYC, The Ronald McDonald House held a Spring Social for the families. We got to choose formal wear and had our hair and makeup professionally done. The event was held at the New York Athletic Club. Very fancy. I picked out a beautiful yet simple black dress. Ben got a tux (set off by wearing his favorite bright green crocs). I got my makeup done, which I wasn’t exactly thrilled with, but it was a formal affair so I had to be okay with wearing more makeup than usual. I just wasn’t excited that she put blue eyeshadow on me. Ick.

Then I waited for my turn with the wonderfully flamboyant hairdresser. I thought I’d go with a simple “up do” since my hair is long enough for that now. When the hairdresser was ready, he pointed at me and said “get on my throne”. I obeyed. He leaned down, looked in my eyes, then toyed with the ends of my hair and said “this hair is heaven. I love it.”, which made me slightly delighted. He didn’t give me a choice of saying what I’d like to have done, he just did it. He said, “This calls for Rita Hayworth in “Gilda” hair.”

Ms. Hayworth had a bit more wave than my stick-straight hair. The hairdresser actually said “If I was as straight as your hair, I’d have kids.” Then, much like Edward Scissorhands attacking a shrubbery to make it into a glorious topiary, my hairdresser went to work.

He sang “Put the Blame on Mame” as he worked on my hair and told me stories about Rita Hayworth herself. My hairdresser was a very famous drag queen back in the day and very close with Rita’s daughter. He actually got to meet Ms. Hayworth, who was unfortunately in the middle stages of Alzheimer’s. He told me of the time that Ms. Hayworth threw an ashtray at him because she mistook him for Frank Sinatra. I didn’t get any back story on why Ms. Hayworth would have any beef with Mr. Sinatra but it makes for a delightfully interesting story.

As he was finishing up my hair he asked who would be doing my makeup. I told him it was already done. He crouched down to my level, forcefully turned my face from side to side, and vehemently stated, “NO! I want MORE! More eyes. More lips. More!” He made me point out my first makeup artist, clucked a “tsk-tsk”, apparently for her inability to do makeup properly. He said, “Good GOD! You’re going to a party, not a funeral. Blue eyeshadow. Who uses blue eyeshadow?” And I was terrified at the thought that this man, a former very famous drag queen, was picking up a makeup palette and loading a brush with eyeshadow that would be directed at my face.

After a mad flurry of powder, he stood back and said “There. That’s how it’s done,” loud enough for the incompetent makeup artist to hear.  Then he handed me a mirror. Opening one eye at a time, I slowly saw the waves in my hair and eyeliner and glossy lips and, wow! I was stunned. Ben had fallen asleep on the couch wearing his sweet little tux and green crocs. I woke him up gently, telling him it was time to leave for the party. He opened one eye at a time, taking in the transformation of his mother. At first, he was concerned about the hair. Then he said, “Wow. You’re beautiful.” We got up, grabbed our stuff, and headed for our limo to the party.

We had a wonderful night. Just me and my son dancing and enjoying a nice evening out on the town. Forgetting about cancer, even if it was just for a little while.

Now that’s something I wouldn’t mind repeating.

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Poor lost socks. They were once twins created in a factory, hoping to be mated for life. But more often than not, one gets lost in the laundry. Or behind a dresser. Or stuffed down the toilet by a toddler. And it leaves the mate wondering if they’ll ever see their twin again. If they happen to be a plain white sock, the chances are high that they’ll be paired with another like sock that also lost their mate.

Sibling-less sock #1: “Wow. Not seeing much action these days. Just floating around this drawer and missing Bill now more than ever. Can’t say that I’m missing those tennis shoes, though. They are way past their prime. Even my soft cotton fabric can’t absorb all of that smell. But I have to admit I’m missing the sunshine and that seventh period gym class. And just when our owner finally trimmed his toenails, Bill went missing. Was it the stress? Was it the odor? Where did he go? And why didn’t he take me with him?”

Sibling-less sock #2: “Wait! No! This is not my mate! George! Where are you? Nooooo!”

Sibling-less sock #1 is paired with sibling-less sock #2 and rolled into a ball. Thrown into pile with socks of similar size.

“Sibling-less sock #1: “Hey there. I’m Steve.”

“Sibling-less sock #2: (weeping quietly) “Tom. Nice to meet you.”

Sibling-less sock #1: “Guess we’ll be in this together. Sorry for your loss.”

Sibling-less sock #2: “I’m really not ready to move on. It’s not you. I’m just really missing George.”

Sibling-less sock #1: “No worries, Tom. It’s tough to move on. But it’s even tougher being stuck in the drawer for months on end. Never seeing any action. Just waiting for someone else to lose their sib. Take your time to grieve, Tom. But know I’m here. I’m right here. And I’ll do my best to never let you go.”

Steve clings to a trembling Tom, wishing that their owner would reconsider using Downy with Febreze instead of the Target brand dryer sheets, knowing that letting go would only result in severe static shock. And who needs that when you’re both in mourning?

Yes. I know. My mental illness has reached an all-time high. But I bet when you put your next pair of socks on, you’ll wonder about what conversation they’re having.

Speaking of socks, I have laundry to do. Ben and I are getting ready to go to NYC on Wednesday for scans, tests, and a bone marrow biopsy. We’ll be there from Wednesday to Saturday, so it’s just a quick visit this time. Probably won’t do a lot of sight seeing, especially since that bone marrow biopsy will leave the Bean feeling a bit sore. I’m sure we’ll make it to the Nintendo store once or twice.

Ben is feeling so much better. His mouth is healing nicely and he’s starting to eat on his own. He’s still a skinny little man despite his being on the high-calorie TPN but at least he’s trying. We have a clinic appointment Tuesday afternoon to see if he’ll need to continue on the IV nutrition. I’m hoping that we don’t have to mess with it in NYC (it requires a lot of supplies) but if Ben needs it, of course I’ll deal with it. That’s my job. I’m sure Homeland Security will question my need for loads of hypodermic needles and the various other supplies required to nourish my son. Oh well. We’ll get to the airport early.

I woke up this morning with my kiddos on either side of me. Since it’s Mother’s Day, I couldn’t ask for anything better. They each made me a special craft – always the best gift – and since I’m not a big fan of breakfast, I got a bagel and Mtn. Dew in bed. It’s 12:40 pm and I’m STILL in bed. I’m feeling a bit guilty about that, but seeing how it’s Mother’s Day, I get to do what I want, right? Oh well.

I nearly always write while I’m still in bed, I guess that’s where my brain works best, so I’m making up stories about mismatched socks to lengthen my time snuggled beneath the covers with my kiddos. Wasting the day away. Feeling guilty that Matt is cleaning up the bathroom despite recently having sinus surgery. But I’m writing! I’m pursuing my creative outlet! I shouldn’t feel guilty, right? But I do. Hmmmm. What other stories can I make up to lengthen my time snuggled in bed?

Seriously, though. Happy Mother’s Day to all the mom’s out there. It’s a beast of a job but no way would I ever give that up. My children are my world. My light. My loves. I’m a better me because of them.

That’s worth a few extra hours snuggled up with them, right?

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Today, May 8, has a variety of holidays to choose from. While you may take your pick from the following list: Birth Mother’s Day, International Migratory Bird Day, Iris Day, No Socks Day, V-E Day, and World Red Cross Day, I’m going to play “eeny-meeny-miney-mo” to figure out what I’m going to write about.

I choose Wildflower Week. The second week of May is always Wildflower Week. Wait. What? It’s the second week of May already? When did that happen? I am absolutely overwhelmed by this thought. Honestly, though, what doesn’t overwhelm me these days?

I’ve been spending a lot of my “free time” sleeping. Yesterday I took a nap before bedtime. I woke up long enough to eat, watch “The Blind Side” (which was okay), and hook Ben up to his IV nutrition. That event was an exercise in comedy… I’ll come back to that.

That last round of chemo for Ben really knocked him out and made him extremely sick. He ended up back in the hospital just three days after discharge with horrendous mucousitis. He wouldn’t eat or drink because of the pain involved with swallowing. He wouldn’t even swallow his saliva so, of course, food was completely out of the question. His tongue looked like someone took a cheese grater to it. I know, that’s a terrible image, but just think how my poor son felt.

Ben was discharged after eight long days of being inpatient. He lost four pounds, which for those of you who know him understand that he doesn’t have four pounds to give, so the docs decided to put him back on TPN. TPN is a bag of liquid nutrition that goes through his port. It’s very high in calories, which will hopefully boost Ben past the 41 pounds he’s currently carrying. Mind you, he’ll be nine years old next month. The “charts” say he should weigh an average of 61.6 pounds. That’s a 20 pound difference.  This breaks my heart.

So, anyway, Ben was on IV nutrition for nearly all 15 months of his first round of therapy since he was constantly plagued with mouth sores. I became a pro at administering his nightly nutrition. I had to do a lot of his care at home during his initial diagnosis: shots, medication, TPN – I was as close to being a nurse as I’ll ever be. So when they told us that Ben would be sent home on IV nutrition I figured all I would need is a quick refresher course on how to hook him up. Our home care supplier sent us a huge box of tubing and syringes and batteries and saline and medications… enough to fill the Jersey shoreline. The box weighed more than Ben, which I found slightly amusing. A nurse came by a couple of hours later to give me a refresher on how to hook Ben up. I followed her instructions as the memories came flooding back from 2004. She told me that I was a “rockstar” and felt confident in my abilities to connect him. I was – in a strange way – proud of myself for remembering how to do it.

The first two nights went without incident. Then, last night, I whizzed through the set up process and attached the tubing to Ben. He put on the heavy backpack containing his pump and the bag of nutrition and went downstairs to eat some ice cream. Then I heard Matt call my name. I was cleaning up the carnage left by the many components of Ben’s TPN, so I said “Just a minute”, to which Matt responded “No, NOW!”. I ran downstairs to see a slightly freaking out Ben and an exasperated Matt holding up the tubing that was filling with blood. My mind started racing “oh no, oh no, oh no… what do I do?” So I clamped his line, pulled off the tubing, and tried to retrace my steps. Matt helped me push the blood out of the line. I reconnected the tubing to the pump exactly the same way as I did before. And, for whatever reason, it was fine. Who knows why it didn’t want to work before? I guess I just needed a dose of adrenaline? All it did was exhaust me more.

I listened out for Ben’s pump all night long. I was so paranoid that I wouldn’t hear it and had nightmares of blood backing up in his tubing. It was a long night.

Currently, Ben and his sister are hanging out together, starting in on their daily ritual of annoying the hooey out of each other. Ben’s mouth is much better. His ANC was over 2,500 at yesterday’s clinic appointment, so his mouth should finish healing in the next couple of days. Just in time for us to go to New York for scans and procedures. This visit will only be a couple of days. Then we’ll come back to Denver to do a cycle of shots in preparation for antibody therapy. Then we’ll be starting the last phase of this ridiculous journey. And hopefully getting on with our lives.

I’m finally seeing a light at the end of this horrific tunnel. I’m finding comfort in the hope that the doctors are giving us. I’m beginning to believe that Ben is going to be a long-term-on-this-earth kiddo. Unfortunately, I’m having a hard time convincing Ben of this fact. He is still so afraid that he is going to die. I’m searching for ways to parent this – it’s really not in any handbook out there – so I’m just muddling through the best I can. Reassuring him that there’s hope. That he might feel small and weak but he is so incredibly strong.

When I truly think about it, he’s like a fairy slipper orchid. When I lived in Summit County, I would pull out my hiking boots as soon as the weather permitted. One of my favorite trails was to Lily Pad Lake. There were sections of the trail that would remain snow clogged for a long time because it was shrouded by dense forest. And despite the fact that this trail was normally very busy (it was a fairly easy hike and culminated in a view of a large lake with a giant beaver dam = great reward with minimal effort) I loved it because it afforded me a look at the elusive fairy slipper orchid. This tiny beauty was capable of bursting through the lingering crust of last winter’s snow. I have no idea how it found the strength to overcome such insurmountable odds, but it always did. I knew that spring was truly coming whenever I caught that first glimpse of the fairy slipper’s purple crown, defiantly defeating its frozen captor. My body would tingle in delight as I marveled at the beauty of it. And as I dared my eyes to take in a little bit more of the frozen landscape, I would see many more tiny purple heads sprouting through the encrusted surface. Amazing. Life breaking free. Growing despite the less than ideal conditions. Enduring against all odds. Unstoppable. Supported only by its fragile base, crowned in its amazing glory.

I always wondered what made me stop to see that first fairy slipper orchid? When most people are trudging up the trail, precariously teetering between the snow pack and the pools of mud, eyes only on the end result of getting to the lake. What made me stop and see those miniature flowers on the ground? And what made me come back year after year in search of this tiny miracle of nature?

Now I know.

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May Day! It’s a holiday, right? Actually, it represents different things all over the world. It’s known as Pagan holiday, a celebration of  leis in Hawaii, and some sort of uprising surrounding long working hours back in the late 1800’s… if you really want to know more, you can start your research here: http://en.wikipedia.org/wiki/May_Day.

Whenever I think of May Day, I always think of the movie Midway, the 1976 war film depicting the turning point of WWII, which was the Battle of Midway. This blockbuster featured a star-studded cast including the talents of Edward Albert, James Coburn, Henry Fonda, Charlton Heston, Robert Wagner, Pat Morita, Tom Selleck, and… Erik Estrada (this was after his big breakthrough role in Airport ‘75 but before his stardom catapulting turn on CHiPs).

Anyway, the one and only thing I remember from this movie – other than soaring airplane sounds and bombs scoring direct hits – was one of the characters yelling “MAYDAY” from his cockpit. I recall being annoyed by it at the tender age of eight, thinking why would anyone scream out “MAYDAY” as their plane took a nose dive toward the planet instead of screaming out something like “I love you, Janet!” or “I’ll always regret not finishing college” or a quick shout-out to the Man Upstairs to save your weary soul. But no. It was MAYDAY. It wasn’t until I was in high school in Mrs. Ratchford’s French I class that I learned about the verb aider, which means to help, and is conjugated as follows:

I help – j’aide; You help – tu aides; we help – nous aidons; you (plural) help – vous aidez… a-HA! “Aidez” sounds like “AYDAY”. And the way the French implore you to help them is by saying “m’aidez”, translating to “help me”, which if you Americanize it turns into MAYDAY. Honestly, though, I simply cannot imagine any person of French descent asking for help in this way. They are probably still peeved with us for bastardizing their language and refuse to use the phrase, even if one of their limbs gets blown off.

Limbless and Profusely Bleeding French Man: “Forget eeet. I refuze to ask for zee help from you, you Americain Pig. You slaughtered our beautiful “m’aidez” and I would rather bleed to death than to ask for you to aide moi. Away with you.”

American Pig: (shoving hands in front pockets of his jeans and casually shrugging his shoulders), “Cool”.

American Pig steps over Limbless and Profusely Bleeding French Man and saunters down the street into a swirling mist of rain, whistling a French tune. A lone accordion fades in and joins in with the song, eventually overtaking the American Pig’s whistling. Camera pans to closeup of Limbless and Profusely Bleeding French Man as he silently mouths “MAYDAY”, expels his last breath and closes eyes.

Music swells. Fade to Black.

Ben is still in the hospital. I have a bit of a scratchy throat so Madeline and I are steering clear of the hospital today. I did phone in and talked to the Bean for a couple of minutes. He’s not saying much because he still is in quite a lot of pain, but at least he didn’t refuse to take my call like he did yesterday. He groaned a bit when I explained that I wasn’t feeling 100% and wouldn’t be coming to see him today. I hate that I can’t go, but I simply cannot risk getting him – or any other kiddos on the oncology unit – sick. So, Madeline and I are working on crafts. I may or may not do some laundry. I might sort through clothes and make a Goodwill run. Or, I just might lay in bed all day and watch “Edward Scissorhands” for the gazillionth time. Madeline just LOVES her some Tim Burton. I just LOVES me some Johnny Depp.

And if Johnny Depp can’t MAYDAY me through this day then I’m not sure who can.

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