Month: February 2010

A “lame duck” is not an injured water fowl. No. A “lame duck” is someone whose tenure has run out. Someone who needs to be shown the door. One whose glory days are long behind them and now they’re just taking up valuable space. I’ve been out of the workforce for a long time (and I do not miss it a bit) but I’m thinking that I know something that fits this “lame duck” title well. Neuroblastoma.

In its heyday, neuroblastoma coursed through my son’s body, eating away at every healthy cell Ben had. It caused him pain. It took away his ability to be a normal toddler. It kept him from play dates and sandboxes (yes, he couldn’t play in sand!) and having the typical fun that any toddler should be having. It even took away all the progress he had made with toilet training. Once treatment started there was no way I was going to hold Ben accountable for going potty like a “big boy”.

Neuroblastoma is a Lame Duck.

We’re showing you the door, you big bully. You tried to come back but my Bean is stronger. He’s got Love. Strength. Prayers. And the best treatment team available. You’re going down. And you don’t get to keep any benefits or draw pension. You are useless and must be destroyed. You’ve occupied precious real estate for too long and now you’re being evicted. Don’t even think about finding another place to live. You’re not welcome. In any child. Ever.

We’ll be leaving NYC in a couple of hours. While we didn’t exactly get the road map of treatment we were expecting, we did hear the most wonderful news: Ben is CURABLE. And while this is absolutely positively the best news ever, he still has a long road in front of him.

Over breakfast this morning, I explained to Ben what he was going to have to endure over the next few months. He knew that the overall outcome would be great, but he wasn’t made aware of the details – the steps he would have to take to get to this “final level” of being cured. So, I told him. His big brown eyes fixed on me, occasionally widening when I said words like “chemo” and “surgery” and “antibody therapy”. Then the tears. I held him on my lap in the brightly lit Ronald McDonald house cafeteria as he cried and asked “WHY?”. And felt like a lame duck when I couldn’t answer his questions. All I could say was that I would be with him every step of the way.

So, a plan is in place. We’re tired but absolutely NOTHING will stop us from fighting. We’ll get you through this, Ben. Pinkie promise.

Weather is fascinating to me, especially since it only gets crazy if I have something planned. For instance, we have a flight out of LaGuardia planned for tomorrow afternoon but there’s a snowstorm looming over Manhattan. I’ve heard this storm could dump anywhere from 3 – 18 inches of snow (quite a large margin if you ask me), and every New Yorker I’ve talked to today has said something like “Oy, good luck getting out of here tomorrow, we shut down over two snowflakes.” So, to ask me to “celebrate” the sketchy job of reporting the weather, well, we’ll see how I feel about weathermen tomorrow. I’m kinda hoping this storm is just a bunch of hoopla. I will not be disappointed if they’re completely wrong and tomorrow greets us as a bright, sunshiny day. 🙂

So. Yesterday after Ben got his MIBG injection, we decided to head to the Empire State Building. It is truly an awesome experience. I loved the lobby. I loved all the art deco embellishments. I loved the thought of King Kong climbing up the side and fighting off airplanes. It’s a gorgeous building. We had to go through metal detectors once we got in line and my immediate thought was “uh-oh, Ben is radioactive.” We’ve had this experience before at the Denver Mint – Ben actually shut that place down thanks to his being radioactive! Right as I had this thought and was flagging down someone from security to let them know, the machine started beeping. Poor kid. He wasn’t even through it yet and it was going off. The security guard was really nice, though, and pulled Ben around to the other side. It was absolutely no big deal at all!

We bought our tickets and headed to the observation deck. The nice fellas selling maps gave all four of us the audio tour device for free (cancer-kid perk I’m sure). Once at the top, we ventured outside. Ben was not a fan of the height and Madeline was not a fan of the cold (how on earth did Fay Wray and Jessica Lange exist in their filmy, slinky gowns while braving not only a giant ape, but the NY weather?) so the kids headed back inside with Matt. I took the audio tour. It was cold but boy, was it an amazing little tour. I learned an incredible amount about NYC and I have to say that, thanks to this little endeavor, I feel much more better about NYC (I know, poor grammar, but I love saying “much more” together). I have a better idea of the layout now and understand lower, upper, midtown, etc.

After they pulled me away from the amazing Empire State Building, we decided to go to Times Square. Boy, is that place bright! It was fun to see. Ben and Madeline started getting tired but they perked up once we stopped in at Toys R Us. We rode the ferris wheel, looked at all the toys, got lost in the life-size Barbie Dream House (Mad spent an extraordinary amount of time in here). Then we walked over to Nintendo World (our second visit this trip). I’m sure this will be the store we go to every time we travel to NYC – it really is awesome.

We caught a cab back to RMH and found they were hosting an Israeli folk dancer and a buffet dinner featuring falafel and hummus. Ben caught sight of the food and immediately said “pass”. Fortunately we had some left-over pizza in the fridge. 🙂 The folk dancer was a lot of fun, Madeline danced with him for about an hour. She had an absolute blast! Then we had gigantic, yummy cupcakes for dessert. Red velvet with cream cheese frosting? HEAVEN.

The Ronald McDonald House does a lot of amazing things for the families… tonight they had a “chef cook-off”, kinda like the Iron Chef. It was televised locally and then the food made during the cook-off was passed around for all to enjoy. So far, they’ve had something available for dinner every single night we’ve been here. Next time you roll through the drive-thru at McD’s, throw a few coins in the RMH box. It’s such a wonderful charity.

I know, you’re wondering how today went. Well, Ben and I got up early and walked over to MSKCC. We checked in and started the MIBG scan a bit after 8 AM. For those of you new to our experience, the MIBG scan is a radioactive who-zi-whats-it (yes, that’s the technical term) that attaches itself specifically to neuroblastoma cells. It’s usually the best way to see if there’s any disease in the body. It was long… 90 minutes… and unlike Colorado they didn’t periodically stop to let Ben get the wiggles out. That’s a LONG time for an eight-year-old to stay still so we had some big struggles with this morning.

After, we needed to have a spec CT done. I didn’t know what this was, but I guess it’s something that every new MSKCC patient has to do. They didn’t account for it in Ben’s schedule of events, so this little 30 minute scan threw the rest of the schedule off. I have to insert a complaint here, I AM NOT a fan of the receptionist in the radiology department. For those of you who remember, I also had trouble with the radiology receptionist in Denver. I’m thinking that my entity and the personality that embodies all radiology receptionists are just natural enemies. Sort of like anyone born in the year of the monkey should avoid anyone born in the year of the tiger. It’s just a fact that cannot be avoided.

After the spec CT, Ben had to drink the contrast for his CT scan. He did a great job drinking the foul-tasting elixir in record time (since we were running behind) and headed back to radiology. Usually, this is a very speedy scan, but this one took about 25 minutes. While standing behind the thick plate glass watching my son move in and out of the large, circular machine, I listened to the staff debate the new MSKCC dress-code for staff members. I learned a lot about what would pass as a proper shirt to wear under scrubs and was relieved to hear that all female staff are required to wear a bra.

Then we headed back up to the Oncology floor. I need to throw in here that this is the MOST confusing building I’ve ever experienced. Different elevators go to different floors and you have to land on Michigan Avenue at precisely 1:47 in order to catch the magic train that takes you to the town that may, or may not, have a bus that will take you to the oncology floor. Okay, I made that up. But it is pretty darn confusing. Next time I’m leaving a trail of spray paint.

They were waiting for us upstairs so they whisked Ben back into the procedure room. I told them that had they equipped us with a MSKCC GPS unit, we would have been a bit earlier. I had a minute to chat with Bean before they sedated him. He was nervous. He kept hugging me and saying how he wished that none of this had ever happened to him. Me, too, Ben. Me, too. The docs gave him a bit of propofol (yes, the Michael Jackson drug) and he was out. I gathered my stuff and left the room, walked out in the lobby, and cried a little bit.

I settled in with a magazine and looked at pretty pictures – that was all my mind was good for at that particular time. Moments later, the doc came out and told me that Ben tolerated the procedure well. Once he woke up they would bring him to me. For those of you who need a refresher on what the bone marrow biopsy is, they take a giant needle, push it into your “butt dimples” and take out a cross-section of bone. Here at MSKCC, they also take samples from the front hips as well. So, four ouchies instead of his usual two. This test is used to find out if there’s disease in his bone marrow, which we DO NOT want to see. It makes treatment so much more difficult. When he was first diagnosed in 2004, he was loaded with disease in his bones and bone marrow… so far this time he’s had no evidence of disease in his marrow. Whew.

The nurse brought my sleeping baby out to me in the lobby. He snuggled into my arms as I sang to him. He likes it when I sing to him. He slept for about half an hour resting comfortably in my arms.

Then we met with Dr. Kramer. I’m thinking I love her. She’s very kind and patient and adores Ben (who doesn’t?). She said that his MIBG scan is NEGATIVE (yay!) but his CT scan still shows a spot (darn it all!). This means that we will have to come back to NYC in a couple of weeks for Ben to have surgery with the famed Dr. LaQuaglia. He is the absolute BEST. If there’s something in there, he will find it and excise it.

Then, I stole a wheelchair and rolled Ben back to the RMH since walking would be a challenge for my sedated, aching, dilaudid-fueled kiddo.

Tomorrow, we’re going back to Colorado (unless we get snowed in). Monday afternoon we will go back to Denver Children’s and start a very low dose of chemo just to ensure that the crazy spot they found on the CT scan doesn’t grow before Dr. LaQuaglia can get in there to remove it. We’re thinking there will be about three weeks before we’ll get in for surgery. Then, after he recovers from surgery they’ll hit him with the high dose chemo that will make him sick as a dog and knock out his precious peach fuzz that is slowly growing back in. Then, once he rebounds from chemo, we’ll start the 3F8 antibody. Then he’ll be all better. Forever.

Currently Ben is trying to get comfortable. He can’t lay on his back and he can’t lay on his stomach due to “the holes” he had drilled into him. That’s what he keeps telling the rambunctious Madzilla, “Be careful! I have holes in me!” If the weather holds out, tomorrow we’re going to go to Chinatown and maybe see the Statue from the Staten Island Ferry. Or we’ll just save it for next time.

Thanks for all the love and prayers, friends. We sincerely appreciate your support and the fact that you muddle through my musings to glean a bit of information about the Fabulous Bean.

More later. 🙂

Today in history, February 3, 1959, marks the tragic airplane crash that took the lives of Buddy Holly, Richie Valens, and the Big Bopper at the peak of their musical careers. While I was not in existence at this point in time, being a rock and roll music aficionado dictates that this event has impacted me on a profound level. Plus, I love the Don McLean song “American Pie”, which commemorates the tragic event. I know this song by heart and can even strum a bit of it on the guitar. It’s always a hit around the campfire.

While the events of what happened in 1959 are, indeed, tragic, my sorrow surrounding this event is completely overshadowed by my immense joy. We learned today, February 3, 2010, that our fine young son, Benjamin, is in a good position of being CURED of this whole neuroblastoma mess. It’s going to take a while and there are some steps we weren’t expecting, but the overall outcome should produce a “long-term-on-earth” Ben. The minute Dr. Kramer made this statement, the tears started rolling. THANK YOU, JESUS!

Admittedly, I’m not crazy about this New York City place. I might reach a certain comfort level in time, but for now, I feel completely claustrophobic. I’m more of a Wyoming girl – preferring a total population of 500,000 compared to this itty-bitty island with its millions of people and crazy drivers. Someone give me a paper bag. I need to hyperventilate.

So, this morning we arrived at Memorial Sloan Kettering Cancer Center (MSKCC) to meet with Ben’s treatment team. First, we met with the financial guy. Then we met with Ben’s social worker. She is in charge of our Ronald McDonald stay and helping us apply for financial aid. Then we met Dr. Kim Kramer. She examined Ben and chatted with us at length about her thoughts. She said that since Ben relapsed so late after initial therapy (four years after being declared to have no evidence of disease) and the fact that it came back in just the one spot with no bone marrow involvement, she believes that this 3F8 therapy will CURE MY BEAN!!!!! Someone give me a paper bag. I’m hyperventilating (in a good way).

So, tomorrow Ben will have an Echocardiogram and an MIBG injection. Then Friday he will have his MIBG scan, a CT scan, and then a four point bone marrow biopsy (which takes a cross-section of bone from the front AND back of the hips. He’ll be sedated for that last part and probably be a bit sore for the rest of the day.

What will come next depends on the outcome of his scans. If he has a little bit of disease left over, he’ll be scheduled for surgery (with Dr. LaQuaglia here in NYC), a round of high dose chemotherapy (in Denver), and then start the 3F8 antibody therapy AFTER he recovers (back in NYC). If he has no disease at all, then he’ll be scheduled for a round of high dose chemotherapy (in Denver) and then start the 3F8 antibody (in NYC). We weren’t expecting having to put him through more chemo, but Dr. Kramer says that the antibody therapy will work better if he’s had recent chemo. It’s going to be a bummer though, because his hair has just started to come back in AND this is going to knock him out big time. I was hoping for no more hospital stays, but this round will mandate that we’re inpatient. OH WELL. HE’S CURABLE!!!!!! We’ll take the positives where we can get them.

So, we have a long way to go. But we want this antibody therapy to work so we’ll do what we have to in order to get this kid of mine back on the road to normalcy. It just can’t happen soon enough.

More soon. 🙂

Old Phil saw his shadow today, which means six more weeks of winter! Good thing I’m back on the East Coast for this very important holiday since we don’t have groundhogs out west.

I thought the western relative of the groundhog would be the prairie dog, but I was wrong. It’s actually the marmot. I’ve never seen an actual marmot in any of my western outdoorsy activities, but I do own a few items from the Marmot mountaineering and skiing equipment catalog. I think my friends out west were hoping for the marmot to see his shadow today because it’s been a particularly disappointing season for winter sports enthusiasts.

But I digress.

I just popped a couple of valium in hopes that I’ll knock down this anxiety a notch or two. Or twelve. I’m borderline psychotic and driving everyone crazy. We flew into New York City today to do the preliminary testing for this next (and hopefully final) phase of Ben’s treatment. I’m a little less than pleasant right now. There are many extenuating circumstances as to WHY I’m less than pleasant, but I admittedly always get anxious at the start of a new phase for Ben and then the ever-present “scanxiety” that looms over my head during scans, which are set for this coming Friday. Just thinking about it makes me want to throw up. C’mon, valium. You can kick in anytime.

I think we’re all a bit tired. Or should I say we’re all exhausted. We made a last minute decision to travel to Ohio to hit two fundraisers for Ben this past weekend. The first, the Snuggie Pub Crawl, was so much fun. Ben and Madeline’s Godparents (Aunt Patty and Unkie) put together a really fun event, and yes, wearing a “snuggie” was required. It was great to see so many of our friends and they were so glad to see the kiddos. We are so blessed to have so much love and support. Aunt Patty and Unkie ROCK! As soon as I get pictures, I’ll be sure to post them.

Then Matt stayed behind with the kiddos while I zipped out to Ziggy’s in Pataskala to meet up with fellow WMHS-ers. It was simply amazing. I laughed, I cried, I had plenty of cocktails, talked about what’s next for Ben, and caught up with classmates. It was a much needed break AND I walked out with a big bucket of cash (total for both benefits to be announced). Thank you to my high school “peeps” for not only doing some fundraising for the Bean, but making time to meet me while I was in town, getting your “hearts on” for an excellent cause, and just plain old taking great care of me. <3 Y’all are the BEST!

So we got home to Denver yesterday evening, did a load of laundry, and then packed again for our New York trip. We left at 8:45 AM this morning. Whew. I have to give a shout-out to Janet for hooking us up with buddy passes… Janet, our experience flying Frontier has been nothing short of incredible. Thank you, thank you, thank you.

After our very short “home layover” in Denver, we got on another plane heading back east. We landed at LaGuardia in NYC in the early afternoon. Can I say that I am less than impressed with this airport? I was thinking snazzy, metropolitan, and hip with everyone drinking cosmos and wearing haute couture. Boy, was I ever wrong. It was dirty. Dingy. Had a slightly scuzzy feel to it. Yuck.

Then, once we collected our bags, we made our way out to the taxi stand to take our $32 trip into the city (which I would gladly pay again because I will NEVER drive in Manhattan. EVER). As we were standing in line for our taxi, Ben leaned into me and whimpered a bit. He said that he didn’t have good feelings about this new place because there were so many horns honking. I told him that I had to agree. Way too noisy, way too fast paced, way too much. I’ll take my wide-open spaces over the hustle and bustle of the city any day.

We had the privilege of traveling with Shing Ho, Medallion Number 1F23. He was kind, but I felt like the stereotypical tourist because no matter how hard I tried and how many times I asked him to repeat himself, I could not understand a thing he was saying. I just kept throwing out random statements hoping that I would eventually answer the question he was asking. He still took us where we wanted to go despite my “Excuse me’s” and “Would you say that again, please?”

I am a terrible backseat driver. And I do think this taxi ride was one of the worst things I’ve ever experienced. I applied my “brakes” every 30 feet and had a panic attack as Mr. Ho nearly rear-ended a mini van. Then he tailgated a school bus. Then he swerved in and out of traffic. I finally just had to focus on something else other than the road or I knew I would have a coronary. And the HORNS. Constant blaring. There was never the friendly “toot of the horn” that most of us learned in our driver’s education courses. When they honk, they lay on it. A person with low self-esteem could never exist in such an environment.

So now we’re here at Ronald McDonald’s House. It’s a pretty nice set up for the most part. Very close to MSKCC and there are restaurants as far as the eye can see. I’m sure we’ll have fun exploring while we’re here… we want to see the Statue of Liberty and Times Square and all the “big stuff”. We’re planning to see some big sites after meeting with his treatment team tomorrow.

But for now, I’m waiting for the valium to kick in to put me at ease. I just can’t take the stress (and a car ride certainly wouldn’t help at this point!) I just want my kiddo to be done with all this hooey.

Thanks, my friends, for all the LOVE and SUPPORT you’ve shown to me and the fam… I’d be lost without you. Feel free to send me encouraging messages to keep my sanity. It’s stretched pretty thin right now.

More later. <3

Oh yeah. We can get mail here. Our address is:

Ronald McDonald House, 405 East 73rd Street, New York, NY 10021 – Room 505. We’ll be here through this coming Sunday so feel free to drop off some mail. I do have to ask that if you plan to send a little toy or treat to Ben that you should send a little something for Madeline, too. She is especially struggling right now. xoxo