It’s “Hermit Day”

Ahhh. The beautiful thought of complete solitude. Away from people, distractions, worries and all that other nonsense. Sounds good to me.

Don’t get me wrong, I love my family. I enjoy spending time with them. But there are times I fantasize about living on a large parcel of land in Wyoming (one of the least populous states in the US) in my log cabin, sitting in a chair on a front porch that has as many square feet as my living space, strumming a guitar and watching the antelope play. I don’t even have the inclination to yell out an echo-y “Hello-o-o-o” since there’s no one for miles around. Being away from it all brings serenity. It’s peaceful. And, in my Wyoming fantasy, I get to wear my cowboy boots all year long.

I’m ultimately a loner. I crave time by myself. I was actually looking forward to Madeline starting Kindergarten this year because I’d have a couple of days a week at home by myself. Again, don’t mistake this as my wanting to get rid of my kids, I just love having the time to be alone with my thoughts, read a book, maybe write a bit, but that damn cancer didn’t care. Ben has only been to school one full day this year, but thanks to cancer, he now does his classwork at home. Madeline is going to Kindergarten (when the flu isn’t going around) but she’s not happy about it. She was looking forward to going to school with her big brother. Maybe next year. 🙂

Madeline and I have been hermits for the past two days. We’re snowed in. I’d say we have about two feet of snow and I’ve yet to go outside and shovel. I’d usually leave the shoveling to Matt but seeing how he’s holed up at the hospital with Ben, well, we’ll continue to be snowed in.

We thought Ben might get sprung from the hospital today but his ANC is still too low (plus the snow storm would have made getting home a challenge). Ben was also out of platelets so they gave him a refill. He definitely doesn’t have the flu, which is outstanding, but they’re not letting him out of the hospital until his ANC comes up a bit more. I haven’t seen my Bean for two whole days. There goes the “fantasy” of being a hermit. I just couldn’t go without.

We did learn a bit more about upcoming treatment. Ben will finish up two more rounds of chemo and then head straight into radiation therapy. Dr. Greffe said that Ben will receive radiation to the area where his tumor was (called the tumor bed – a term I find slightly comical – like “nighty-night, tumor”) which was behind his heart. Ben will go each weekday (closed on weekends, because, of course, cancer takes the weekends off) for four weeks. Then, once he recovers from that, we’ll head out to NYC for antibody therapy.  Best guess on this time line will be mid-January. Yay! New York City in January? That sounds FUN! When reviewing the info from Sloan-Kettering, it looks like he’ll have one week of treatment in NYC and then three weeks off in Denver. Dr. Greffe thinks that while antibody therapy can continue for up to 24 months he’s under the impression that Ben will only go to NYC four times. Of course, this is all subject to change. It always is.

So, there’s the scoop. And while I often times want to crawl under a rock and live a hermit-like life, I know that I gotta suck it up and take the next step. Not only for Ben’s well-being, but for my sanity, too. Plus, the lack of personal hygiene from living under a rock would eventually get to me.

More later. 😉

It’s “Plush Animal Lover’s” Day

I already wrote about my beloved bear, Roger, in an earlier post so I won’t drag you through that again (I can hear you saying “YAY”).

I used to have dozens of stuffed animal “friends” during my youth and each night at prayer time I would “God Bless” each and every one of those stuffed animals before falling asleep. Tedious? Sure. But those inanimate objects loved me unconditionally and were completely deserving of my prayers. They were my friends. I’ve made different friends since then – the human kind – and while I do enjoy having two-way conversations, there is something to be said for having friends who cannot talk back. I would never dread the answer to a question because I knew they would always say the “perfect thing”, which allowed me to draw my own conclusion. And, of course, they never had anything negative to say.

We all have to grow up sometime, though.

Here’s something that makes me smirk: Adults who wear Disney clothes on a regular basis. For instance, I used to have a neighbor who had what seemed to be an unending supply of clothes with Tigger and Snow White and Mickey Mouse on them. She would come over at the most inopportune times to gossip about someone while wearing her Disney clothes – venomous comments spewing forth from her lips as I was forced to look at the Seven Dwarves staring at me from her sweatshirt or a bouncing Tigger springing up and down on a jumper. It just didn’t seem right. Now, there are exceptions to my pet-peeve, like anyone consistently working with children or just plain HAPPY people, but if you’re a Negative Nelly, then you should not be allowed to wear clothes that advertise the Happiest Place on Earth. And then there’s my dear friend who just sincerely LOVES Disney. Her son went there for his Make-a-Wish trip and they go back at least two times a year. It brings her happiness to wear her Disney clothes so I cannot begrudge her that simple pleasure. But you won’t catch me in clothes featuring any Disney creatures. I do have a “School House Rock” shirt though. I claim that I wear that solely for educational purposes. Or to sleep in.

Oh, who am I to say anything about simple pleasures? I believe everyone has something they’ve held on to since childhood, whether it be something tangible or behavioral. Like I said, I still have Roger the Bear. Losing him would be crushing. He holds no monetary value and maybe someday I will pass him on to my kiddos but right now, he’s mine. He’s comforting. And then there’s the fact that I am in a constant state of movement before falling asleep. I used to rock myself to sleep as a child and I still do it today. It’s a behavior that I don’t even realize I’m doing – until I hear someone mention that I need to stop moving because I’m disturbing them. It’s not as easy to do when I’m, say, camping or hanging out on the “bed” at Children’s Hospital, but I still give it a shot. It’s comforting. Relaxing. A ripe tomato sandwich on soft white bread with Miracle Whip and lots of pepper provides a very similar comfort.

My kids don’t really have anything like that. My guess is that Ben wouldn’t be able to live without his Nintendo DS games and Madeline wouldn’t be happy without her “pretend” cell phone. But they have no special bond with any of their stuffed animals or other toys. They enjoy their Build-a-Bears and their webkinz, but they don’t cling to them. I’ve saved a blue plastic Fisher Price hammer that Ben seemed to adore when he was a toddler as well as a pair of Mr Potato Head glasses that he used to like to wear. And then Madeline had a doll my mom got her from Williamsburg – Madeline loved to chew on that thing when she was a baby. I’ve saved those items. But again, they’re sentimental to ME. Not them.

Maybe Ben won’t want to remember his childhood? All the pain and suffering he’s experienced – is there really anything that he would want to cling to from these days? “Oh, look, Mom. Here’s the tube they shoved up my nose during one of my scans.” Heartwarming? No. And then poor Madeline “Mom, what was my favorite toy as a child?” And I would scramble to remember because her infant and toddler years have been overshadowed by her brother’s illness. I could say “Oh, Madeline. You used to love to try to pull Ben’s broviac catheter out of his chest.” Crazy. Our lives are just absolutely crazy.

I do have to mention that Madeline was sincerely disappointed when she had her tonsils taken out. She was hoping they would let her keep them. Meanwhile, Ben has a vial of his blood that I let him keep in the refrigerator. Maybe my kids are too demented to cling to the traditional? I’ll take full credit for that trait. I’m the demented parent here.

So, if you don’t have a plush animal that brings you happiness, try to remember what brought you the most happiness when you were a kid. And if you have kids of your own, tell them about what you treasured. And if they have something they treasure, take a picture of them with it. Or go as far as to make a video of them talking about what’s important to them. Trust me. That evidence will become one of your newest treasures.

More later.

It’s “National Nut Day”

Sometimes you feel like a nut. Sometimes you don’t. In doing a bit of research on National Nut Day I couldn’t find if it was a reference to the food or to a personality trait, so it’s fair game to talk about either one.

Did you know that peanuts aren’t actual nuts? They are a legume – related to the pea (hence the “pea” in peanut). So, does that mean that all the people who have peanut allergies are also allergic to peas? If this is the case, then I am sincerely allergic to peanuts because I’m certainly “allergic” to peas. Yuck. Peas are gross.

Actually, Ben says he’s allergic to things he doesn’t like. His allergies include bees, fish sticks, cleaning his room, rollercoasters, etc. He has no actual allergies. I am not allergic to anything either. Well, with the exception of vicodin. I break out in a terrible rash. Why would this have to be my one and only allergy? Vicodin is good for so many things – pain relief, escaping reality, and as an ice cream topping. I know. I’m a nut.

I’m a nut under “normal” circumstances let alone what I’m facing these days. My sense of humor is my best coping mechanism and, unfortunately, seems to scare a lot of people. They don’t know what to make of me. Not to say that my sense of humor is inappropriate. I don’t think I’m terribly offensive – not like an Andrew Dice Clay type or anything, but I do find odd things funny. And I might – on occasion – say odd things. It just can’t be helped.

I have this vivid scenario I play out in my head from time to time. It has to do with competition between cancer families trying to “one up” each other. Yes, it happens in “our world”, too. I have a hard time with “one-uppers” in general, but it just seems so unnecessary in the world of childhood cancer. We’re all in a bad situation seeing that we ALL have critically ill children, but some families are just nuttier than others. Of course, we all bring our baggage with us into our situations – cancer knows no boundaries – so it doesn’t care if you were the most popular in high school, or come from a poor family, or insecure, or egotistical, or lazy, or driven, or just waiting for your 15 minutes of fame. When cancer strikes your child, you are thrown into a world that you wished you never had to enter. But you still bring the rest of your life with you.

So, Matt and I are fairly passive people. Rule followers. We learned what Ben’s course of treatment would be and followed that path. We gave him his medicine in a timely manner and went to all of his appointments. We cultivated and preserved relationships with our medical team and garnered as much information from them as we could. They were the experts. We followed their direction. It was uncommon for us to become combative with his medical team. I can only recall a handful of times that we did any head-butting with staff, but even then only because Ben’s safety was compromised. After all, Ben came first.

But some families come with the expectation that they are OWED something. We need the BEST room you have (like it’s a hotel or something). We deserve this… we require that… MY situation is worse than YOUR situation so we’re more important than you. Oh, your diagnosis is that? Well, OUR diagnosis is this, plus we have this, and then there’s this, so our situation is much worse. One woman said to me, “Our claim to fame is that we’ve spent over 100 days in the hospital, so we pretty much own the place.” After doing some mental calculation of my own, I estimated that Ben had spent at least 200 days in the hospital over the course of 15 months, so we had doubled her “claim to fame”. I didn’t say anything, but I just found it odd that she felt superior to everyone based on the number of days her child had been inpatient. Oh, people are just nuts.

There are plenty of horror stories that go along with a childhood cancer diagnosis but why people have to “one-up” just makes no sense. For instance, Ben recently lost 2/3 of a rib and the top of his lung. In relaying this information to other families it wasn’t uncommon to hear “well, MY kid lost not only a rib, but a spleen, a lung, 1/2 of his heart, AND his ovaries.” I know… boys shouldn’t have ovaries. But we’re dealing with medical abnormalities here and people are just plain weird. And I’m exaggerating.

Ben was in isolation for his stem cell transplant for 31 days. I ran into both extremes on this. “Oh yeah? Well MY kid was in transplant for only 28 days. His cells engrafted immediately after being infused. Beat that!” And then there was the other extreme; “Oh yeah? Well, MY kid was in transplant for four months so our situation is way worse than yours.” It’s not a freaking race, but some people treated it as such. Nuts.

They should give us bumper stickers. “My child excels at Bone Marrow Transplants at Children’s Hospital” or “Ask me about my kid’s neuroblastoma” or instead of a soccer ball with the player’s number featured on the back window of the minivan, we could have an IV pole with the number of chemo infusions our kids have received. My kid is better than yours.

So, back to this vision I have, which would make a good pilot for a reality show. Moms are at a starting line in the hospital revving up. At the sound of the beeping machine we take off on our obstacle course. But our obstacle course isn’t jumping through hoops or hurdling walls, it’s clearing upstream occlusions, changing the dressing on a broviac catheter, getting your kid to vomit in a moving yellow pan, snaking a tube up your kid’s nose and down into the stomach (points deducted if it comes out through the mouth!), making your child swallow a pill the size of Texas, and the final level, drawing a shot of neupogen, getting out the air bubbles, delivering said shot (points deducted if your kid cries), depositing used syringe into the proper receptacle and then hitting the buzzer at the end of the course. YAY! Did I win? What’s the grand prize? Getting to do it all over again tomorrow? That’s no freaking prize!!! That’s just our lives.

And don’t even get me started on the people who parade their sick kids in the name of “awareness”. Ben has had the privilege of being the featured kiddo for the Wendy’s Championship for Children Golf Tournament, but we didn’t submit head shots or anything, we were just asked. There was a family who was actually UPSET that their child wasn’t chosen. It’s not a freaking competition!!!

So, even in the hideous world of childhood cancer, even in the face of potentially losing your child, people are still nuts in the way that normal people are nuts. There’s just an extra added layer of nuttiness to the psychosis.

New and improved, with extra nuts.

It’s “Babbling” Day

Here’s your word of the day: Blatherskite. A blatherskite is one who babbles incessantly about foolish things. I know a few of these types as I’m sure you do, too. They leave 20-minute messages on the answering machine but never really say anything, or they’re trying to insert one kernel of important information into a monologue devoid of any true conversational weight.

Let me give you an example. Let’s say you receive a phone call from someone you’re dating. They start talking about the weather and sports and their families or friends and then drop a bomb like “I can’t take you to the prom tomorrow night.” only to be quickly followed by “Hey! Did you see that story about the balloon boy?” You’ve sort of tuned them out because they’re just, you know, babbling. But then you say, “Wait! Back up!”

There might even be a few people who would call ME a blatherskite. I have a tendency to talk a lot – especially if it’s about me – but I prefer to call myself a “storyteller”. I don’t believe I babble on and on about nothing. I do tend to talk about a lot of fools as opposed to foolish things, so I can see where someone might be confused and call me a blatherskite.

Oh my. Am I babbling? Oh well. I could be called worse. Interestingly enough (or not) Matt and I had a communication breakdown last night. Our friend called to see if we needed help with Madeline tomorrow since she’s out of school on Wednesdays and we’re still not able to bring her to the hospital during the flu season. Matt answered the phone and said he didn’t know what I had planned for Madeline. He relayed the message to me, and I said “Oh, yeah. I confirmed with Nancy for Friday, but didn’t confirm with Kimberly for tomorrow.” Matt said, “Well, call Kimberly and let her know.” So I did. Then, this morning, I’m getting ready to take Ben to the hospital. Madeline is giving me a hug goodbye and I told her to be a good girl at Kimberly’s house today. Matt said “Um, I have to take Madeline? And I don’t know where Nancy lives.” And I said she’s going to Kimberly’s. Blah, blah, blah… tension mounts… stress builds…. ending with “It would have been nice to know this last night.” Which I state – a little aggressively – “I DID TELL YOU LAST NIGHT!” I pointed out our positions in the house with near exact coordinates, what we were doing at said time of communication transmittal, and the transcript of his follow-up statement. See? Obviously I’m a babbler and he had tuned me out. I’m sure it’s not the first time this has happened between spouses.

I can always tell when someone has tuned me out. There’s the classic indicators, like the distant responses of “uh-huh” and the blase’ “really?” and the occasional “hmmm”. And in today’s technologically overloaded environment, one can often hear the clacking of a keyboard in the background, or fingers furiously texting someone else while you’re talking to them. They call it multitasking. I call it ignoring. Whenever I hear any of these indicators I like to throw in a “shocker”. A good example would be while talking with my kids. The minute they tune me out I go monotone. Talk about cleaning their rooms, practicing good manners, we’re having frog legs with a side of snail snot for dinner, and then they have to put some clothes away. While I would think it would keep them on their toes to the point of actually listening to what I had to say it has yet to capture their attention. I think the official “politically correct” term would be that my kids have ADD. Every kid has ADD, right? I know I do. Wait. What did you say?

These days my brain is very disjointed. I must keep lists of what needs to be done or it will be forgotten. My current situation is divided between typing this blog, the rush of nurses and doctors in the hall, answering text messages, trying to tune out beeping machines and screaming childrenl, and oooh! look at the pretty snow falling outside, and, wait, I’m forgetting something. What is it? Um… dagnabbit! I know it’s something important! Oh yeah! Order lunch for Ben! Honestly. I forget the basics thanks to the mush that is currently inhabiting my cranial cavity.

So, feel free to babble today. Or ignore someone who’s incessantly babbling. It’s also National Pumpkin Cheesecake Day (which is completely revolting to me) so why not go out and babble over a piece of Pumpkin Cheesecake?

I hope you didn’t just skim over this post. It wasn’t all just babbling. 🙂

It’s “Evaluate Your Life” Day

Okay, so Evaluate Your Life day was actually yesterday, but since today is Brandied Fruit Day, I’m going to back up and do some life evaluating. Brandied Fruit? Seriously. Who would have anything to say about that with the exception of the fruitcake industry?

So. Self-evaluation. Am I happy? Am I satisfied with my appearance? My life goals? What I’ve accomplished thus far? Let’s see.

My major complaint these days is, of course, my son’s life-threatening illness. Just a minor blip on this radar I call life, right? No. It’s debilitating. It’s crippling. When “discussing” life with my spouse, I constantly state “It’s been one thing after another for the past eight years. Major things. Life-altering things. Post-traumatic-stress disorder invoking things.” He’s more of a “there’s evil in the world – and we’re all sinners – so bad things are bound to happen to us.” Like there’s some cosmic pot of crap out there that everyone’s bad deeds go into and then when you hear the clanging bell it means that the pot is going to pour out on whomever tends to be standing in its path – much like the buckets of water that fill to overflowing and then dump out on the kiddos at a water park. But in this scenario, we always seem to be standing right in the path of the overflowing crap. I can agree to some point on this, but COME ON. The amount of major traumatic events that have occurred over the past few years has been astounding. And for me to be able to even sit here and type about it, well, what can I say? I’m still standing? I’m trying to function? I’m not in a straight-jacket? (But I am highly medicated… Yay!)

Let’s review: My cancer diagnosis prompted move to Colorado to live out a life dream of living in the mountains. Married a man who was (not out of the closet) gay. Divorced. Moved back to Ohio. Got a good job using my newly minted MBA. Got pregnant. Got remarried. Had son. Moved into a house. Got laid off from job but got to collect unemployment while caring for newborn. Matt got laid off. Both of us found another job. I got laid off again. Found GREAT job. Got pregnant again. Two months before giving birth to second child, first child was diagnosed with a hideous stage IV cancer. Quit great job due to intensive treatment for toddler AND caring for a newborn. Successful completion of 15-month therapy. Whew. Got to take a breath after that. Matt faces layoff in Columbus, found transfer to Colorado. Move across country – away from hospital and support group – but to a beautiful part of the country. Attempted suicide of my parental unit followed by major stroke of my other parental unit. Matt laid off on the day we received good news about Ben’s scans. Several months unemployed. Finds better job. Matt loses a parent. Travels to Ohio only to watch family squabble resulting in arrest of his brother. No funeral. Back home within 36 hours. Stress from everything takes its toll on us and we struggle as a couple. Issues with extended family members continues to mount, culminating in the relapse of our son’s cancer, which is all too often a fatal diagnosis – since we’ve watched so many of our little friends die from this very disease. That’s f*cked up. (Sorry for the swear.) Oh, and throw in a terrorist living in the apartments behind our house. And that balloon boy incident.

I think what would make this all better would be some botox. And maybe a boob lift. The stress is having a negative effect on my body. If I’m going to have a crazy life, at least I should be able to look good, right? Actually, that reminds me of a promise I made to myself. When Ben was going through treatment the first time, I looked like crap. I was exhausted, not to mention pregnant. My ankles were unrecognizable as a body part, my eyes were chapped from constant crying, the worry ever-present on my face. The parents living in the hospital with their critically ill child had to share a “family shower”. You learn a lot about people when you have to share shower space with them. Ick. Anyway, I didn’t always look “my best”. There was one mother, however, who always looked FABULOUS. She wore cute outfits (opposed to the scrubs and sweatpants that most of us wore while inpatient). Her makeup always looked nice. Her hair was always styled. She was never scruffy or stinky or wrinkled. I called her the “Soap Opera Mom”. You know, because soap opera people wake up in the morning beautifully styled and still toting their highly glossed lips. I don’t know how this woman did it, but I was always envious of how fabulous she looked while facing her child’s critical illness. So, when Ben relapsed, I said to Matt “I’m going to be Soap Opera Mom this time around.” Yeah, I haven’t been keeping my promise. Some days I just roll out of bed and pull my hair back in a pony tail. The only thing that is prepared and ready to go with their bags packed are my eyes. Soap opera mom I’m not.

But I could be if I could just get my hands on some botox. And get rid of that damn cancer that keeps trying to ruin my son’s life.

More as my mental health permits. 🙂

Be Bald and Free Day

Sorry I haven’t been keeping up with my National holidays. My brain is jello. I start a sentence only to jump off track – or is it jump the shark? Either way, I’m over it. I am sincerely ready for a new head. Too bad insurance has a strict policy of approving only one head per person – lifetime max – and I received my allotment in 1993 during my thyroidectomy.

So. Be bald and free day. When I started writing about these National holidays this past June I had no idea how many would fit so well into my life. It seems like I always have a story to relate to whatever holiday it is. Is it a gift or just the product of too much zaniness? Ooooh. Zany. I haven’t used that word in a long time.

As many of you know, my son is bald. It’s not an early onset of male pattern baldness but the aftereffects of chemotherapy. If having cancer wasn’t bad enough, Ben does face the prospect of becoming a victim of the dreaded male pattern baldness since it does genetically pass down through the mother.

While my biological father has a head full of hair (at least he did 10 years ago – the last time I physically saw him) both of my grandfathers were thin on top. My maternal grandfather, who we lovingly called “Little Grandaddy” was bald. He was tiny AND bald. I think he barely cleared five feet but he made up for his short stature by enjoying the company of large women. He was super cute. And he always told me that I was his favorite. Now, my mom is the youngest of eight siblings and there’s LOTS of grand kids. I’m sure he told all of us that we were his favorite but we never shared that with each other, guarding our “special status” from the other kiddos, but I’ve cherished the thought that I was really and truly his favorite my whole life. I mean, really. What’s not to love about a little red-headed freckle faced girl?

So. My bald-headed son. Ben is a very wise little man. He has a bit of silliness to him but when you get right down to it he is a super serious kid. Sweet, sensitive, serious. And seeing how his childhood has been mostly composed of treatment that should never happen to a child, well, it just adds to his little old man persona. Yesterday, we learned that his ANC is only 36, which means NO visitors. As we were leaving the clinic Ben broke down in tears. He was crying that he can’t be like other kids. And he actually said “I’m a shut-in”. He is desperate to visit with some friends but it’s just not possible at this time. Especially with all the flu bugs going around. It’s just not fair. Or fun. Damn cancer.

We try to insert fun into this mess of a life whenever we can. For instance, I’m always trying to get Ben to ask people “How does my hair look?” He looks at me with his little crinkled eyebrows and says “Oh, mom. I’m not going to say that.” It’s humbling to realize that your eight-year-old son is way more mature than the woman attempting to play the role of mother. Oh well.

After Ben had his first round of chemo back in 2004, I was expecting his hair to fall out right away. Like that first drop of chemo would hit the eject button for his hair and it would come shooting off of his head. It didn’t happen. And once I got past the disappointment of seeing projectile hair I fantasized that maybe it wouldn’t fall out at all. I mean, other than the bruising around his eyes (classic indicator of Neuroblastoma) and the tubes hanging out of his chest, one would never know that he was a sick kid. His exterior was completely normal. It was the inside that was a mess – tumors in his body, cancer cells invading his bones and bone marrow, cancer eating through his pelvis creating actual holes in his bones. It was a mess inside.

That first stay in the hospital during his initial diagnosis was a very long three weeks. After receiving a full week of chemo we were discharged. Ben spiked a fever just two days after being discharged which landed us back in the emergency room at Nationwide Children’s. One of the “benefits” of being an oncology patient is that you don’t have to wait out in the lobby with the masses, you’re put in a room immediately to avoid the ER germs. It was determined that Ben did, indeed, have a fever and would have to be admitted. Infections can be fatal for the oncology kid so they don’t play around with it.

As I was holding Ben on my lap in the ER triage room I began to stroke his hair. It felt “crunchy” – like a bad perm or something – and as I was trying to soothe him hair started falling out in my hands. His beautiful red hair – coming out in clumps. I knew that cancer was making a mess of him on the inside, but the hair loss was a tangible indicator that this was one sick little kid. It broke my heart.

When we told Ben that he had relapsed one of his bigger concerns was losing his hair again because he didn’t want anyone to make fun of him. So far, all of his friends have been really supportive. A couple of his friends even shaved their head to support the Bean. The outpouring of love and support has been simply amazing. And, this time, despite being older and understanding more about what he’s dealing with, he’s handling his hair loss just fine. After all, he does have the perfect head for it. 🙂

Bald is beautiful. You never have a bad hair day. You don’t get wind blown. You’re aerodynamic. And, your family can play tic-tac-toe on your head with a crayon while waiting for a table at any restaurant that gives away crayons with the kid’s menus. Benefits are endless, as long as you’re willing to look for the silver lining. And we’re trying.

More later. 🙂

It’s “Benefit for the Amazing Ben Day”

WHAT AN AMAZING DAY! My dear friend, Angela, sent me an email back when we found out that Ben relapsed in July. She asked “Can we hold a benefit for your family at the Outback on September 27? Just say yes or no. You don’t have to be there if you can’t make it.” I replied that they could do that and went back to the grueling world of having a child with cancer.

I wouldn’t say that I forgot about it. I knew that she had recruited a few people – namely Ms. Nancy (Mad’s former preschool teacher) – to help organize the event. But I just had no idea what all they were up to. I did know that they wanted to sell 200 tickets for a luncheon with proceeds going to us for Ben’s treatment. Wow. 200 tickets. I thought that was a lot.

Fast forward to today. Ben was feeling good so we were able to attend the event. When we arrived there were fire trucks out front waiting to take Ben and Madeline for a ride. I went inside the restaurant while Dad was on the truck with the kids and was completely overwhelmed. There was a bake sale. There was a silent auction loaded with donations. There were hundreds of people. Many of these people I had never even met. I was amazed by the outpouring of love and support. Stunned.

Ben’s pediatrician came! Madeline’s Kindergarten teacher, preschool teachers and former preschool director were there! Ben’s home/hospital teacher came as well as many of his school buddies. Families who have children at Canyon Creek and didn’t even know our family personally attended. So many people! Michael, the owner of the Outback, said that they served 295 plates today, which is about 100 more than he usually does for a benefit. Wow. And then there were people who bought tickets who weren’t able to come – they just wanted to donate. The outpouring of love and support was simply amazing.

Ben’s favorite guest was his girlfriend, Skyler. They still have big plans to marry someday. 🙂


At the silent auction four people bid on four buddy passes for us to use when we need to fly to New York. Meg, the director of Madeline’s preschool, brought a jar of change that the preschool kids had been contributing to over the past few weeks. It was a gigantic jar that weighed 17 lbs, 4 oz.! We’ve yet to count what’s in there. Ben is very excited to count it all!

We are amazed, overwhelmed, and humbled. What an incredible outpouring of support. Thank you, everyone. Thank you Angela and Nancy for all your incredible work. Thank you Michael for hosting the event and continuing your amazing kindness to our family. Thank you friends and supporters for all you’ve so generously given.Thank you, thank you, thank you. I am so completely overwhelmed that I had to come home after the event and take a five-hour nap. Now I’m gonna be up all night 🙂

Click on the link below to look at more pictures from the event.

I’ll be sure to update when we have the grand total!

More later 🙂

It’s Cherries Jubilee Day

I really don’t have a lot to say about Cherries Jubilee. I don’t believe I’ve ever had what some consider to be a tasty treat, but then again, I’m not really big on dessert.

I’ve been wracking my exhausted brain trying to come up with something to write about regarding this topic. The only thing that comes to mind is floating in a gigantic swimming pool filled with cherries. The raft I’m on is blue. I’m lying on my back with my hands folded behind my head, eyes closed, and drifting in my sea of cherries. No waves or ripples, just smooth sailing.

I guess this is not an original thought. After all, there is a popular saying that “Life is a bowl of cherries”. This is usually followed by another statement cautioning one to avoid the “pits” in their cherry-filled life. I can’t even come up with something adequate to say that would reflect how riddled with pits this life has been. I’m so tired.

But, in my pool of cherries, there’s not a single pit to be found. I’m relaxed. Floating. Absolutely no worries.

And I’m pretty sure I have a tan. Clearly, this is a grand fantasy.

More later.