I was cute.
ARCHIVED POSTS
July 12, 2016
This past week was AMP CAMP WEEK. I could probably write an entire novel about why this has been the week that makes me BEAM, for like the last ten (honestly, I lost track) years. I'm smiling just thinking about it. Every single time I meet a young amputee, I tell them about the Amputee Coalition Youth Camp, and why they absolutely have to go.
It's one week at Camp Joy in Clarksville, Ohio, where about 140 young amputees and 35 counselors all gather for the most fun time ever. This was my third year as a counselor and it's probably the most rewarding job I know. Did I mention we're ALL missing at least one limb???
This is the week when the kids throw their legs off, race up rock walls, jump through ropes courses, take endless flips in the swimming pool, break out into flash mob dances at lunchtime, race each other on the basketball court, get into some aggressive games of Gaga, swap prosthetics, and walk around camp with a smile that comes from knowing you're around people who look like you. When I walk down the dining hall, around ~180 other amputees, I don't get any reactions to my slight limp. Because no one's paying attention to it.
The kids at camp know there will always be stares/questions/some pity coming from strangers, the people who come up to us and give us a congratulations on walking outside because 'Wow, you're doing so well despite...' BS. Despite what? At camp, I see my kids' faces light up when they find a friend who teaches them how to tie their shoe with one arm, when they learn how to break-dance in a large crowd and totally own it without hesitation, when they realize they're a beast at sitting volleyball, and actually enjoy hiking when there's a group willing to find ways to get those legs up the terrain. They smile, they are accepted, they celebrate themselves... they realize they can do SO MUCH if they just try. That's what camp did for me, and that's what I want for my campers. We have late-night chats about the kids at school, how to fit tight jeans over prosthetics, how to clean liners the right way, how to demand a better prosthetist (yes, there are bad ones), how to get involved in sports, who they talk to when they need help... We teach them independence, because that opens the door to everything for us. Being our own advocates.
As counselors, we show the kids that they never have to settle. Yeah, in the non-camp world, when our campers are back in a pool of able-bodies, that tinge of 'Here we go again with everyone watching/I look different doing XYZ than everyone else here' may kick in, but if the kids just hold on to what it felt like when they tossed aside their hesitations at camp, hold onto the memories of how much fun they had when they just went for it, and channel that mindset for whatever crowd they're in, they won't hold back -- they'll kick ass. The kids realize if they're willing to adapt just a little bit, they can do anything. You want to climb the rock wall at your local gym? Go. Right now. Show 'em your one-arm strength. You want to go down the waterslide at the pool party? Throw the leg off. Who cares if you don't walk up the stairs - hop. Find a way. You know you want to go down that slide... Nervous about that limp when you walk past lockers in the hallway? Let's get you in shorts, and teach you a dance. Walk down the hallway with some confidence in just how balanced you really are.
And I obviously go back to see the counselors, too. We're best friends, and we've been there for each other in more ways than I can count. They brought out the stronger side of me that celebrates my body. And that's special. It's a unique perspective we have, celebrating a body type that the rest of the world would not choose. That's why it's so important as a kid to have that support system. Nearly none of us have amputee moms, dads or siblings... but we have each other and that means the world. For just one week a year, it is so rejuvenating to be around a community that 'gets it' at a level most people just don't.
In other news, I've spent the past month exploring Boston on the weekends while working as a clinical research intern. This city is full of so many surprises: beautiful parks, med campuses, boardwalks...and yep, I've already tackled the ice cream list. Still on the hunt for coffee shops, though. I miss a really good dirty chocolate chai from Hopkins. Until then, Starbucks!
June 11, 2016
Right after leaving Baltimore, my dad and I drove up to Worcester, MA to help Sophia move out of her freshman dorm. She officially finished her first year at College of the Holy Cross! We're so proud of her for making so many strides up in MA. She's made a great group of friends on campus and seems to enjoy her Psych classes. Of course, Sophia and I love any and all chances to move around once school is out, so we spent a few days with family in Connecticut as we made our way back down to New York.
Crazy exciting news once I got back home... Last year, I submitted a grant to the Challenged Athletes Foundation (CAF) to obtain a running leg. When I showed up at A Step Ahead, I thought I was only getting my new foot/ankle/knee as planned, but Erik and his team surprised me by already having my running leg set up!!! It was AWESOME. I spent many hours with the A Step Ahead team practicing taking fast steps, jogs, leaps, and then 'runs' in the parking lot. The foot is so bouncy!!! It was emotional, too. I had not run in 14 years, since I was 6 years old. Besides skiing and swimming, I wasn't used to moving at a much faster pace than walking. It was thrilling and exhilarating. I have a bunch of new exercises to try to build up my core and maintain my ankle. I get tired really quickly, but they say it's just a matter of building up endurance, since my body isn't used to working those muscles at that kind of physical activity level. I trust the process, and just have to be patient. It will come! Little by little, I want to get there. My dad got me a new pair of running sneakers later that day, so we're off to a good start. :)
Then we headed out to Frackville, PA. One of the things Sophia and I look forward to most every summer is staying at our family's house in Frackville. When my grandparents moved to NYC after WWII, both of their big families remained in PA. We have tons of cousins there. Summer is the best time to take trips to Heisler's Dairy Bar for the freshest ice cream and most beautiful mini golf course overlooking countless fields, Knoebel's Amusement and Water Park, Hometown Farmer's Market, and basically every ice cream shop I find. There's always something going on when so much family is in the area. Plus, I found lots of terrain in the woods to practice using my running leg. Chugging through lots of water bottles, but making progress! I make Sophia run with me; even when she looks annoyed, I think she enjoys it LOL.
When we got back to NYC, I signed up for an Ossur Running and Mobility Clinic, hosted by CAF. Ossur is the prosthetics company that supplies all the running legs that CAF distributes through grants. They host running/mobility clinics all around the country, so I was eager to sign up for the annual one in Harlem. So happy that I went! There were tons of amputees with/without running legs -- kids, teens, young adults, adults. Each amputee was paired with a volunteer; mine was a great DPT student from Columbia University. We split into teams, and some awesome Ossur/CAF staff led us in drills on the field, pacing through cones, working on arm position, doing some criss-cross foot work for diligence, widening the angles of our sound limb to make bigger steps, etc. The CAF staff, Ossur prosthetists and volunteers were motivating and guiding us every step of the way. Made lots of improvements. (Although, I have to improve my running backwards skills for the obstacle course they made us do hehe.) I even ran into Travis Ricks, who is my co-counselor at the Amputee Coalition of America Youth Camp, and works for CAF. The day was just SO MUCH FUN. It also happened to be Sophia's 19th birthday. :)
And now, I am all moved into Boston for the summer. Very excited and grateful to be set up where I am... big ventures ahead this summer!
May 11, 2016
We need to talk about Team Prominence. (#TeamProminence) Earlier this year, I was approached by a group of five Mechanical Engineering students at JHU. As part of their Senior Design project, this MechE team was designing and constructing a prosthetic ankle/foot system for female amputees. And it gets better–Walter Reed was even behind them! So of course when asked if I’d be willing to offer some amputee insight/guidance and test the prototype, my answer was a big YES. Being the only lower-limb amputee on campus finally came in handy.
When I say I love this team, words can’t even do it justice. Talking about gait, ankle adjustments, ease of fit, etc was all relevant lingo for me, but what made the whole experience the best? Devin, Kate, Ben, Luke and Joey. I could not have expected a more welcoming, engaging, respectful or attentive team. This group genuinely wanted to create something useful and get perspective on their product from the very type of person who would use it. There was a particular care they put into The Prominence and every conversation with me. This past month, I finally got to walk on the prototype. A one-day round-trip ticket to NY (trust me, with my track record, my parents weren't at all surprised I tried to make this happen), some help from my prosthetist, and boom, I had that foot attached to me.
While doing laps on a ramp, I had a really cool AHA moment. There I was, walking, in sturdy form and stable steps, with an ankle that my friends had made. And it kind of hit me right then: I go to school with some really freaking awesome (and very smart) people. These five team members designed and built The Prominence in a basement machine shop off-campus, while still tackling heavy course loads as seniors. I am still in awe. I don't take my ability to walk for granted; I'm thankful everyday that I can simply walk to wherever I want to go, but that's only possible with a good foot/ankle. I hope #TeamProminence realized that their contributions have power. Their good hands, brains, work and design have so much potential. (Check out the news coverage of these guys by clicking here!)
And now, as I'm sitting here typing away, I've just finished my last final of junior year. It's a bittersweet time. Of course, it feels good to finish up exams, pack up the physics homework and bio notes, and get ready to finally have some much-loved family time. Plus, I'm a little too excited to start my clinical research this summer (hehe). But I'll miss the familiar faces on campus, seeing my best friends here all day every day, having the busy schedule that, even when keeping me on the tips of my five toes, I honestly love. Every semester here is like that, but I thrive when I'm under some pressure.
Students like those on #TeamProminence remind me of just how much I love being where I am: right here at Hopkins. I'm surrounded by such innovative minds, and every once in a while, I remind myself that we're all headed for exciting futures; it's a special gift to share the very beginning of those journeys with each other (even if it means seeing everyone at their best in the library grind, but hey, coffee helps us all). At Hopkins, I can push myself, tap into my own abilities, and cheer my classmates on; I love it. To be honest, finishing my third year at JHU is sort of daunting.
People rarely hear me say 'I can't wait for...' because I don't really think that way. I like to stay in the moment. Another year deep into Hopkins, and I'm enjoying the ride... but breaks are good. I think it's about time I curled up in bed with some SVU and an Iced Latte in hand...
April 15, 2016
Little Leg's 13th Birthday!
Happy Ampuversary to me! Taylor Swift once said that 13 is the luckiest number of them all, and this year, I'm feeling all those vibes. Today's the one day a year that's such an emotional roller-coaster for me; it's like, an explosion of, "Oh my god, today's the day that cancer took my leg away, I need to cry for a few minutes" and "Today's the day that every amazing opportunity I've had so far can be traced back to, I need to cry for a few minutes" and just about everything in between. Put it bluntly: April 15, 2003 changed everything. So every year, I take some time to reflect on what this day really means; what's the source of all the happy tears???
Right off the top of my head, I can think of all the questions I get from people who love trying to get 'the real scoop' on why my life must be so much less satisfying than theirs (Spoiler: these are funny but real quotes):
- Don't you hate having to put that leg on every morning? All that back pain, collapsed ankle, skin issue stuff?
- Are you aware that you're stared at constantly whenever you walk into any room wearing shorts?
- Does the limp bother you all the time? Knowing that people think you're walking in more pain than you really are?
- Is it annoying going up stairs slowly? Always attracting stares and attention? When your pants make your right knee look 'weird'?
- My all-time fav from a stranger on the street in Baltimore a few months ago: Aren't you self-conscious? I would be covering up.
This bad-ass prosthesis of mine has a miraculous means of giving me a very natural step, and I'm thankful to put this efficient leg on everyday. All the back, ankle and skin stuff has become as normal as maintaining good make-up and hair; it's just part of my routine. I love showing my mettle in shorts all the time, because God damn, my left leg has grown quiiiite muscular. And the stares -- been there, done that. Ship sailed on that one real quick. I know I'm being stared at on line for lunch, walking to class, blah blah everywhere. Although I can't speak for all amputees, I honestly don't mind the questions. I understand - a prosthesis stands out, and people like to ask about it. (PSA: If I ever told you I was bit by a shark, sorry, I lied.) A long time ago, I made a decision to toss aside anxieties about who will "get it" and who won't. I haven't looked back since.
These days, I'm busy getting through a chunk of Public Health/Pre-Med classes as a junior at JHU. Every once in a while, though, I remember as I'm rushing to physics class... that my ability to walk across Gilman Hall in a usual rush, isn't my feat alone, and my mentality regarding amputee life, isn't that of all amputees; there's a whole team that helped me reach this point. Adaptive gym teachers, physical therapists, occupational therapists, oncologists, surgeons, nurses, social workers, prosthetists and many many hours of time, are all part of the source of confidence I have in what I can do. Early on, I gained an appreciation for what a team effort really is, and just how wonderful the people who do anything -- no matter how small (like making me a really good iced vanilla latte) -- to make me smile, really are. Since April 15, 2003, it's been essential for me to surround myself with people who bring out my best... and I like to think that I enjoy doing the same for others just as much.
At eight years old, I had a plan: I was going to push and maybe I didn't know what my exact interests and goals were quite yet, but I was going to kick my way forward without limitations. That's what I do. Through the amp club (I made that phrase up), I've learned how to walk, swim, play soccer, rock climb, ski... in the company of the most resilient personalities. There's nothing in the world that keeps me from going back to adaptive ski camps, or the Amputee Coalition Youth Camp, where I get to help kids understand that accepting limb loss is by no means as rewarding and exciting as embracing and celebrating it.
I’m not saying there aren’t challenging days. Are there days when my leg is painful to wear, when it’s annoying or frustrating me, when the stares rub off on me the wrong way? Yes, absolutely. But I would never want to take back the life experiences this leg has given me, the journey it’s taken me on, or the friends I’ve made who share this experience with me. I’m doing what everyone else is doing — I’m handling the set of cards I’ve been dealt. There’s a special distinction between accepting something that challenges you, and wishing things were different. On my bad days, the thoughts running through my head may be something like: Ugh, I wish there was a lotion that was more sensitive to my little leg’s skin, or Hmm how can I modify my socket to relieve the pressure point?
It’s never, ever been, “God dammit, I wish I had two legs.”
So to my beloved little leg, thank you for opening the doors to everything. For an optimistic outlook, an open heart, an empathetic mind, a curious intellect, and a drive to seize opportunity (like when you want to go down a five-story water slide but it's not handicap accessible, so you get the three young amputees around you to make a relay team and hop up every. single. step. because duh, you just love water slides), without getting caught up in who's staring/how different I look/that icky 'but why is it harder for me to do XYZ than for her to...' lingo. You've given me so much.
I am lucky.
April 3, 2012
It's been a while... Hm, I need to emphasize that a bit more... IT'S BEEN A WHILE since my last update. I guess all I can say is that no news is good news (for the most part)! A lot has happened since my last post. Health wise, things have been great. Scans have all been clean. I can't explain enough how much of a relief it is to get back good scans. The end of freshmen year was awesome and I absolutely love Poly. I cannot discuss this next topic in detail because it's too hard to write about. After a long fight in the hospital, my Papa passed away last summer. I miss him more than I can write and I love him more than I can say. It's been really hard without him, but he is always my hero and the person I admire most. This year... Junior year... it's been busy! I love playing in the Band at school, my classes have all been challenging but I'm enjoying this year. I must say that I'm really enjoying math and physics this year (history, too). So it's safe to say that Pre-Med is where I'm headed! I'm still at MSM playing in the Repertory Orchestra and a Woodwind Ensemble this year. The Ensemble has really been great because as much as it's challenging, I've really improved because of joining. This past winter, I went skiing at Camelback. It was an amazing trip and I got to see my favorite familiar faces... Mau, Tyler, Stephanie, Kelly! Over spring break, I went skiing for four days in Steamboat Springs, CO for the second time. Amazing trip! The condo was fun, I met a bunch of new girls who really inspire me, and the weather... oh my. It was so warm I skiied in a t-shirt, something you just cannot do on the East Coast! My favorite part of the city of Steamboat is the scenery. I cannot do it justice by writing; it's something you just have to see. The view of the mountains all around me at the top of the hills is breathtaking and... inspiring. I'm back at school now for the final stretch before summer. I'm hopefully going to be a counselor at the Amputee Coalition of America Youth Camp this summer! It will be my eighth year (I've lost count)! Also, it's National Limb Loss Awareness Month! Spread awareness! This life is one I'm proud of.
December 15, 2009
Back from The Hartford Ski Spectacular! The trip was SOOOO MUCH FUN! =) Sorry for the caps, but it was THAT AMAZING. I flew to Denver by myself for the first time, which actually went well. There were about 20 kids at the Ski Spec, and even more coaches. Each "ski team" at the Ski Spec stayed in their own rental house in Breckenridge, with their team's coaches. My house was full of kids I'd already knew and new friends :) During the day, there were Advanced and Mid Level ski groups that went skiing with different kids and coaches. I was in the Mid Level group (Advanced group, soon!) with two other girls. Breckenridge was amazing. The snow conditions are so much better than the East. As they say, "If you can ski out East, you can ski anywhere in the world." Hmm...I don't know about anywhere in the world, quite yet...but I'm getting there :) I was able do some shopping in town, and got some Christmas shopping done. The city is unbelievably beautiful, but it was freezing cold. During the day, the windshield hit up to -40˚F! If you can believe that. It was great staying in the house with everyone. We ate breakfast together (made that together, too!) and talked about skiing, played games in our game room at night, ate dinner together, had late night talks with one another, and indulged in microwaving chocolate chip cookies topped with ReddiWhip and caramel sauce. We really became close with one another, and I met a ton of new kids :) I should mention the first two days in Breckenridge I had some altitude sickness, with a lot of vomiting and headaches, but I think it's best not to talk about that ... The day before I left Colorado, there was a Level 1 Race on the slopes. I had so much fun racing, and I had two perfect runs! The adrenaline rush was amazing :) I can't wait to see everyone again! Once pictures are developed, I promise I'll post them!
December 6, 2009
Hi everyone! I'm off to Colorado for the Hartford Ski Spectacular in Breckenridge! It's my first time skiing out west, and I am super excited to see Mau, and all my friends! :) I'll be staying in Colorado for a week, and flying out there and back by myself. (That's a first!) Hopefully, I'll update the site with pictures and posts during my trip! Hope all is well with everyone!
Here's the link to Adaptive Adventures: www.adaptiveadventures.org
Here's the link to Disabled Sports USA: www.dsusa.org
October & November 2009 :)
Alexandra, Sophia, and Mom joined Junior Team A Step Ahead in helping to hand out PowerBar Gels (liquid energy boosters) to the runners in the NYC Marathon! Go Team Go!
November 17, 2009
Wow! I am incredibly overdue for an update! Almost three months! Here I go... I started high school on September 8th and I absolutely love it! :) My school has been amazing in all aspects; I've made countless amounts of new friends and I'm truly just enjoying a great "Freshman Year" experience :) I'm in the Band at school, and we are having our winter concert this coming December. I'm taking Biology, History, French I (Parlez-vous francais?), Health, English, Geometry, etc. The Poly campus is gorgeous; there are ponds, tennis courts, a separate science building, courtyards, football fields... The year has been a transition, though. I don't get home until 4:30pm, and with activities and music lessons, it limits time for other things. It's all good, though! It's all good! I also started Manhattan School of Music this September. I'm there every Saturday from 8:45pm to 4:00pm. MSM is very different from the MAP Program at Juilliard. It's more demanding, and competitive. The classes are more challenging. At MSM, I'm in an orchestra, a chamber music class, and theory and ear training classes, along with a private lesson. I'm enjoying the experience :) I have some concerts coming up this December and January! Exciting news - I was filmed last month for a documentary "Kids with Cancer" by Nickelodeon News. The documentary is focusing on kids who have or had cancer, and how they are living today. The filming experience was fantastic - it took two full days! I had cameras set up around my house, and a whole film crew follow me to school :) Thank you to Marty (camera and interview), Mike (sound), Danny (lighting), and Hartley for making the filming so much fun! The documentary is set to air December 27th on Nickelodeon, so I'll keep you all updated! I also wanted to bring up Hannah Crossley's brother Nathan. Most of you know Hannah was my dear friend from the hospital, who passed away early last year. Her older brother Nathan has been working with Miracle Corners of the World, stationed in Africa for two years. Nathan has been helping to build homes and schools for the less fortunate. We are so proud of you, Nathan! This coming week is an exciting one! I'm going to Saturday Night Live, thanks to my cousin Liz! I'm also attending the Francesco Loccisano Memorial Foundation's 2nd Annual HopeFest Gala this Sunday. I was honored with "the Hope Award" at this Gala last year. This year, I will be presenting the award to another girl, Shannon O'Brien. I am so excited for the event! The Foundation has done great work to aid the burdens of families whose children are dealing with cancer.
If you are interested in learning more about the Francesco Loccisano Memorial Foundation click here.
If you are interested in learning more about / attending the Francesco Loccisano Memorial Foundation's 2nd Annual HopeFest, click here.
August 22, 2009
Sorry for the delay in posting! Things have been very busy and I haven't had the chance to update the web site. Here's an update on what's been happening during the summer. Sophia and I went to Happiness is Camping for two weeks in the beginning of July. We made a lot of new friends, but best of all, we saw a lot of our old ones. This year at camp I signed up for Boating, Scrapbooking, Pool Sports, Ziplining & Rock Climbing, Swimming, Archery, Arts n' Crafts and a lot more. Sophia did all of the same activities as me, but she took Dance, as well. After camp, we visited family in Connecticut. It was great to see our cousins and take a few dips in the pool. I, of course, love visiting the small towns and going to the farmers markets. We went back to Happiness is Camping for another week after that. Then, we were home for a while. We celebrated my Baba's 89th birthday on August 8th, even though it may be August 14th...long story. Our cousins from Chicago were in Brooklyn for three weeks, so we were glad to go to the park with them and hang out with them. We went up to our house in Pennsylvania with them and our grandparents for a week. We went swimming, visited the amusement parks and had a lot of fun. Now we are in Connecticut with our cousins for a day. We will be leaving for Camp Sunshine in Maine tomorrow. It's a long car ride but it's worth the trip. Before we know it, school will be finished, but luckily I've finished all my summer work. Summer went by truly fast and I'm going to miss it! I will be starting Manhattan School of Music in September and Poly Prep Country Day School. These schools will be new adventures for me, and I'm excited. Sophia will be starting 7th grade at her school and she's looking forward to it. I hope all is well with everyone. I also wanted to share a great story with you. I've mentioned quite a bit my friend Hannah Crossley from MSKCC, who passed away last year. Her older brother Nathan, who is in college, recently joined the Miracle Without Borders organization and is stationed in Africa for a year. He will be traveling throughout Africa helping to build homes and school for children and adults. We are very proud of you, Nathan! Happy summertime!
Alexandra's Graduation
Genesis Program Middle School Class of 2009
June 14, 2009
"Life is not easy for any of us, but what of that? We must have perseverance and above all, confidence in ourselves."
- Marie Curie
Alexandra graduated from the Genesis Program at Xaverian High School on June 14, 2009 as a member of the Class of 2009. Alexandra graduated with three awards including the General Excellence Award, the President's Excelsior Award, and the graduating class' Latin award. She will be attending Poly Prep Country Day School in September, where she will participate in the Band and embark on learning French. She is very excited about high school and all that awaits her. She will also be attending the Manhattan School of Music on the clarinet, this coming September, after having graduated from the Juilliard School of Music - Music Advancement Program with a Spirit Award on May 9, 2009.
The Road Not Taken
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I -
I took the one less traveled by,
And that has made all the difference.
- Robert Frost
May 19, 2009
Well, our family has been hit hard with spring sickness! I (Alexandra) have been sick since Thursday. Thursday afternoon I began to feel sick after a nap, and when my mom took me temperature she found that it was 103. Truth be told, I stayed home that night and missed my music concert at Xaverian. I only got worse on Friday and I had to miss my final Xaverian concert and the playwright that took place that night. I had been running high fevers ALL day and ALL night. I had to cancel my audition for Manhattan School of Music for Saturday, but luckily I was able to get out that night to see the final performance of my play. I have been home since then, trying to get better. My doctor said that I have a lung infection :( I tend to get a lung infection every year - the intense chemo I receieved has given me very weak lungs, and a weak immune system. Yesterday, we noticed that Sophia was feeling sick, and she had to come home from school. Sophia has been running high fevers as well, with the same sysmptoms I had - runny nose, ear pain, headache, dizziness, throat pain. She was running 104 fevers in the middle of the night, so we are hoping for the best. Our doctors say Sophia has the flu (we are waiting to hear what type of flu.) For now, I am going to try to attend school tomorrow for my class trip to see West Side Story on Broadway. All the best!
Alexandra is the New York State Senator for a Day!
May 13, 2009
Alexandra recently won the New York State "Senator for a Day" contest, sponsored by New York Senator Marty Golden. Participants had to write about what they would do for the community as Senator for a Day. Alexandra wrote about increasing enrollment and funding for Catholic elementary schools in New York. As many of you know, recent decisions have been made to shut down many Catholic elementary schools within the five boroughs and throughout the state. Alexandra won the contest amidst 1000 other applicants! She will be awarded with a class trip to Albany, as well as lunch and an interview with the senator! Congratulations, Alexandra! We are so proud of you!
May 8, 2009
It's Alexandra! I recently won a contest: A Playwright Grows in Brooklyn - Youth One Act Festival, sponsored by the BrooklynONEtheater group here in Brooklyn. Kids were asked to submit short one act plays. I wrote a play about my trip to China, hoping to somewhat share the incredible experiences I had in China at the Paralympic Games in September 2008. I have had so much fun going to the rehearsals, meeting the other playwrights and working with the actors. If anyone is interested in coming to see the performance, the festival will be held at St. John's Parish (99th Street & Ft. Hamilton Parkway) in Brooklyn on May 15th and May 16th 7:30 pm. The festival is free of charge and I am sure everyone will have a great time. The night is featuring five plays and a set of six monologues, with a special performance by a middle school rock band that is amazing!
May 4, 2009
WOW! It has been so long since I last updated the site! Things have been incredibly busy! For a large update, my best friend Linnea and I made it to the New York City Competition for the National History Day Competition, for our project "Marie Curie: Changing the World through Discovery of Radioactivity." We came in 3rd place at the City Competition and advanced to the New York State Competition! The NYS Competition was held in Cooperstown, NY this past weekend (April 30 - May 2, 2009). We all had fun on the long ride up to Cooperstown - staying in the hotel pool and visiting the Baseball Hall of Fame! Our project won the Basset Healthcare Award for the Best Project on Medicine in New York State! As far as school goes, all is well. I am preparing for auditions for the Manhattan School of Music and the Mannes School for music programs on the clarinet. I am also graduating from Juilliard MAP this upcoming Saturday. I have been working to find a prom dress for my 8th grade graduation, which is merely a month away. Lately, I have continually noticed the stains the recession has put on the economy. Due to lack of funding, my favorite camp - Happiness is Camping has cut down their amount of camp sessions, the Amputee Camp of the ACA has limited the number of children going to camp, Juilliard MAP will be closing after this year (I am the last graduating class), Gilda's Club closed in Brooklyn, etc; it's terrible. For now, we must keep hope! I have decided to start a new thing with the guestbook; I will be posting my Book of the Moment! The book of the moment for this post is Of Mice and Men by John Steinbeck. This book is an incredible story of farmers struggling through the Dust Bowl and Great Depression. Sign the guestbook!
March 12, 2009
Hello everyone! Long time, no updates! I am going to Poly Prep, in case that wasn't clear in my last post! I am going to be a Poly girl <3... I am very excited, as you can tell! My best friend Linnea and I have been working on perfecting our history project for the City Competition on March 29th. We are both nervous but very anxious and excited. I am continuing my lessons at Juilliard, which I enjoy so much! I received in the mail copies of the Bridges Newsletter, the cancer survivorship newsletter that my trip to Beijing was featured in, with a professional photo taken of me! I love the article, and I am very thankful and happy about its being published. I hope all is well with everyone. I will have an extra day to relax, because I have no school tomorrow. For anyone who watched the news, there was a snow day and few weeks ago in New York and New Jersey. Only one way to describe this: it was awesome! A snow day was just what everyone needed! Please keep in your prayers, a high school senior named Sharif Abdallah, who collapsed and passed away after chasing away men who were bullying his friend. Sharif was a high school senior and attended Xaverian High School. Most of you know that my small junior high, Genesis, is located within Xaverian, and so we see most of the Xaverian boys. To read an article about Sharif click here. RIP Sharif. Please sign the guestbook or email us at AlCap95@aol.com! We love hearing from everyone! Until next time =]
February 18, 2009
High School Decisions have been made! I am going to Poly Prep Country Day School! I am very excited about high school and about Poly. I hope that everyone is doing well! Sophia and I are now on Mid-Winter break. We have been studying for school, enjoying trips to Starbucks and having sleepovers with friends! Please keep in touch by signing out guestbook or emailing us at AlCap95@aol.com! I forgot to mention in my last post, that my best friend Linnea and I made it to the City Competition for our National History Day Project on Marie Curie! We are very excited and proud of ourselves, and who knows, maybe we'll make it to State?! Until next time...
February 14, 2009 <3
Happy Valentine's Day! I hope everyone is able to spend the day with the people they love - whether you are with them or you give them a call. I have great high school news. I was accepted into Poly Prep Country Day School in Brooklyn, NY with a scholarship! I am so excited, and now I must chose between LaGuardia or Poly... Sophia and I are very glad that we have off for the week; it's Mid-Winter Break! I am very excited about being able to relax and just hang out with friends. As for now, I am busy studying for a science midterm and a writing test and working on my Girl Scout Silver Award while Sophia is working on her Girl Scout Bronze Award. I hope all is well with everyone. If anyone is interested, I have a Facebook that I use to keep in touch with friends and my old nurses in the hospital. Feel free to add me by searching "Alexandra Capellini." Happy Valentine's Day! "There would be nothing in the world without love."
February 7, 2009
Hello everyone! It's Alexandra! I am back from Ski Camp and I had an amazing time! I learned how to ski the halfpipes, and that was incredible! I had my Juilliard Departmental Forum Concert today, and I did great! I also have great news...I found out that I made it into LaGuardia Performing Arts High School on the clarinet! My parents and I are considering sending me there, but we'll see...I hope all is well with everyone! See you soon!
February 5, 2009
Hi everyone! It's Alexandra! Ski Camp has been going amazing! We have been doing a lot of gate training and GS training. Mau, our amazing Ski Trainer, has taught everyone (Louis, Stephanie, Staci, Chris, Joe, Dan) to hop while we are skiing and we have been practicing making 360s and skiing with actual poles. As far as skiing with poles goes, that's my work in progress...I have been doing a lot of black diamonds today, and have even led our group as leader for a few mornings (yay!). I would love to join the Mau's Racing Team - Team Mau! Tonight, I played my clarinet solo piece for all of our instructors and kids at dinner. It was great practice for my concert at Juilliard on Saturday, and I did great! I am so glad to have made new friends, like Staci, and to see old ones, like Dan, Stephanie, Louis, Chris and Joe! I love our instructors, too! Hope to see you all soon! I'm having the time of my life!!!~
February 2, 2009
Greetings from Ski Camp! I am in my hotel right now...I had an awesome time skiing today! I got to Camelback about 10:30, got my equipment and ate lunch at 12pm. Then, I had to fix my equipment and skiied with my group from 2pm-4pm. Right now, me and my roommate (Stephanie! yay!) are hanging out and we have dinner in half an hour. Then, we hope to use the swimming pool and can't wait to ski the black diamonds tomorrow!
February 1, 2009
Hi everyone! It's Alexandra. I am going to Amputee Ski Camp tomorrow, at the Camelback Resort in Tannersville, PA (it really is the Poconos, though.) I am very excited about Ski Camp, and I can't wait to get back on the slopes and see Stephanie and more of my friends! I will be gone from tomorrow until Friday, and hopefully I can update my trip if I can connect to the Internet up there! We usually ski from 8am - 12pm and then from 1pm - 4pm! And, yes, by the end of the day, we are very tired. But it's very fun! I won't be able to stay for the race on Saturday, because I have a Juilliard performance in a Departmental Forum. Please sign my guestbook! A lot of my friends have been signing lately...I'll update more frequently! If anyone is interested, I am part of my school's Politics in Action Club. I am the Executive Secretary and so I run the club's website, as well as making the club's weekly minutes for each meeting, taking attendance, etc. I recently updated the web site, so if you are interested in seeing it, click here! See you soon!
January 20, 2009
GREAT news! Alexandra got her test results back for the TACHS (Test for Admission into Catholic High Schools). She made the Fontbonne Hall Academy Honors Programs with a partial freshman scholarship, and also made St. Savious Honors. Her highlight was making Dominican Academy and being asked to take the scholarhship exam (here 1st choice Catholic high school!) MORE GREAT news! Alexandra's TACHS results were excellent! She scored in the top 1% of the nation in the TACHS test! Congrats Alexandra! As for now, we are waiting to hear from Marymount and Sacred Heart, whether Alexandra got the scholarhships!
Congratulations to President Barack Obama, for becoming the 44th President of the United States of America, and the nation's first African American President - YES WE CAN!!! And, congratulations to John McCain, for putting his heart and soul into his campaign, as well. We can only hope that President Obama will lead us out of this economic crisis... Sophia and I love Malia and Sasha, we think they are so cute and stylish! www.barackobama.com Alexandra's school was able to gather in one big classroom and watch the whole Inauguration Ceremony on CNN. She was glad to be able to watch the whole Inauguration (she didn't have any classes.) Hope to see you all soon!
January 10, 2009
We hope that everyone had a very Merry Christmas and a Happy New Year! We spent a great Christmas visiting family in Connecticut and in Brooklyn. Sophia and I got some great gifts for Christmas. Since my laptop broke down and I was in desperate need for a new one for school, I got a new MacBook!!! Sophia and I love the MacBook so much and we have so much fun with PhotoBooth and video chatting! The New Year was nice too and we spent it with family. Sophia and I are very excited because we are expecting to get guinea pigs in a matter of weeks...For now, I am very busy with school and Juilliard and piano. The craziness and busyness never ends! I hear back from my high schools later this week, so wish me luck! Sophia was not feeling well today, with a bad stomach ache, so please hope she feels better. This weekend was really tough for everyone. My beloved Baba, who is 88 years old came down with a 103 fever and was not feeling well at all. We called an ambulance to take her to hospital, and she will be there until possibly tomorrow. Please pray for our Baba! I hop everyone is well; sign the guestbook and I will try to get back to you!
December 18, 2005
Sorry for taking so long to update this site again! I am officially finished with high school testing! I hope all goes well..December had been a very busy month for us all! I had my Xaverian Christmas concert on December 9th...I played in two different band...and most of all, I had a GREAT time. On December 10th, I had my Juilliard solo concert! I played Gavotte from Migon and I am very proud of myself! On December 17th, I had my Juilliard Instrumental Ensemble Concert where my ensemble played The Arrival of the Queen of Sheba! We did spectacular! Sophia has an upcoming dance recital this Sunday, also... We are all very excited about Christmas in my house! The Christmas lists are hanging up, Christmas shopping has begun, we have hung the wreaths and lights and decorations up, we've had the radio station tuned to Christmas Carols 24/7, we've been making Pumpkin Spice Cake and drinking hot cocoa...and we still have yet to get a Christmas tree! Last night, Aunt Sue treated Mom, Sophia and I to tickets to The Nutcracker. The show was incredible! It was great to see the ballet with our Nana and our cousins. Christmas break will start tomorrow and I am very excited! We have made plans to adopt two guinea pigs...since Sophia and I got First Honors. Sophia and I are so excited to pick them up...we will pick them up the week after Christmas. Their names are Hiedi and Ginger. On our animal update, our two fish Charlie and Lola have gone psycho and are constantly running around the tank jumping up for food. Our turtle Chocolate Chip, doesn't seem to like moving and besides occasionally eating, it just sits in the same spot for 3 days. As you can see, we are excited about the guinea pigs...they will actually move and play with us! I posted some picture under the "Pictures" and "Fundraisers" link. I recently camp upon the inspiring story of a young Neuroblastoma angel, named Christi Thomas. To read more about her click here. I will post again before Christmas!
November 25, 2008
Wow! It has been such a long time since my last update! I might as well get started...To start off, Mom and I had to most incredible time in China! Being able to see the Paralympic sporting events, and visit the Bird's Nest and Water Cube was unbelieveable! Mom and I made so many friends in China through the Paralympic Academy, and the trip was truly a rewarding experience! To read part of my online diary about the trip click here. The school year started off great after coming back from China! I was featured in a "welcome home" article in The Brooklyn Eagle local newspaper. To view the article click here. Whoever said that 8th grade would be easy was wrong! I have been very busy this year with various high school entrance exams prep classes. I joined my school's Politics in Action Club, as a member and secretary. I was promoted to Executive Secretary for doing such a great job, so I am very proud of myself. I have been looking at a bunch of different high schools but my heart is set on the Marymount School of New York, or Convent of the Sacred Heart, or Fontbonne Hall Academy. I made it to the semi-finals of the Sacred Heart and Marymount scholarship exams! Schools has been going well for Sophia, too. I have my Juilliard recital coming up soon....December 6th, 2008! I have finished taking my high school SHSAT and TACHS exams. The much anticipated Frankie Loccisano Memorial Foundation HopeFest 2008 was a truly emotional, heartwarming and special night. I enjoyed seeing Frankie's family, because despite the hardships of losing their beloved Frankie, they have focused their energy into the Frankie Loccisano Memorial Foundation, in order to help other children fighting pediatric cancer. I was awarded the "Hope" Award. two incredible men named Matthew Long and Tom Kane were also honored. I encourage you to follow their great work, because their is no doubt these men will change the world. Congrats to Matthew Long, who recently ran the NYC Marathon! I have been home all week, very sick. The doctors told me I have walking pneumonia and bad bronchitis in both my lungs. I have been coughing very badly with a sore throat and a sore back. Nevertheless, I am very excited about Thanksgiving! Mom is cooking and I can almost smell the turkey and stuffing! I would like you all to please say a prayer for my friend Sammy Rotman, who sadly passed away. Although I never met Sammy, her family was always in touch with our family and we will greatly miss her! We miss you, Sammy!
September 1, 2008
Sorry for no sooner updates! So, here is an update of the past two weeks..Sophia and I spent two weeks in Pennsylvania with Baba and Papa while Mom, Dad, Aunt Lisa and Rene came for a week. It was great to spend time with Baba and Papa. We even got to go the Knoebels Amusement Park, see cousins and family, go to church picnics, have sleepovers and more. Sophia and I also found a mother and her five kittens who were living on our property. We couldn' take them home, but...we kept feeding them milk. Then, the kittens disappeared but the mother stayed, so we hope the kitties are okay. After a great time in PA, we all came home. The next day all of us went up to Connecticut to our cousins house for Labor Day weekend. We stayed for the weekend and most of our family on Dad's side was there. We a had a great time in the pool, seeing our cousins, playing with our cousins' dog and we even found a tree swing that we spent hours on...
I was also recently featured in an article in the Brooklyn Eagle about my trip to Beijing. Thank you Tom Kane for writing such a beautiful and inspirational article about me. You truly are a talented writer and such a kind and nice guy! Tom Kane will be honored with me at Frankie Loccisano's Memorial Foundation's First HopeFest Gala in October! Here is the article: Dream of a Lifetime. Thanks Tom Kane!
Now, to the big news of the day. China is only 3 days away and that means less than 72 hours until my feet are on Beijing soil!!! Mom and I have been hurrying to pack everything for China, clothes, and lots of books to read on the plane. I have a nice big book, Twilight to read on the plane ride. I also have a bunch of shirts from Happiness is Camping, Lenny and Joe's, Camp Sunshine, A Step Ahead, BrooklynONEtheater and more. You'll see what those were for in time...I can't wait to go to Beijing and see the Opening Ceremonies. Here's an ironic little fact I wanted to share: who knew that there is a T.G.I Friday's in China? I will update again before we leave on Thursday. Don't forget to check my blog for the journal of my trip! I can't wait. Words simlpy can't express how excited I am!
If you have a t-shirt from your camp, company, newspaper, theater group or restaurant that you would like me to wear in front of the Great Wall, please contact me. This is short notice as I am leaving in 3 days. I will be taking pictures with all different shirts when I visit the Great Wall. Also, please say a prayer for my dear friend Sammy Rotman, who recently discovered that she has a brain tumor and is battling osteosarcoma. Thank you for all the support you have given me!
August 12, 2008
HAPPY 16TH BIRTHDAY HANNAH CROSSLEY!!! Today would have been Hannah Crossley's 16th birthday. Hannah was one of my best friends from the hospital and sadly passed away in April of 2008. Hannah annd I shared rooms inpatient in the hospital on various occasions and we were great friends. We event went to Happiness is Camping together. Hannah was truly a special blessing from God and is greatly missed by my family and I. Please say a prayer for Hannah in Heaven and her family during these rough times. We miss you but know that you are loved! To leave a message for the Crossley Family go to Hannah's web site: www.hannahsjourney.com
August 6, 2008
Hello everyone! I hope summer has been going well for all. Sophia and I recently spent the weekend in Connecticut with out cousins and family. It was great to be able to jump into the pool on a hot day. We are heading back up to Connecticut with Dad later tonight and we are excited. I thought I would give you some update on that. Mom and I finally finished all of the forms and paper and passport and visa info for the trip to China. The process was a little confusing so it is good to have that off our backs! Also, Baba's birthday is coming up and guess how big of a coincidence this is....my beloved Baba will turn 88 on August 8, 2008!!! We plan to give her a nice birthday party. I hope all is well with everyone. I am so excited to watch the Olympics this year...in gymnastics I'm rooting for Shawn Johnson and in swimming Michael Phelps! Let the competition begin! I am looking foward to my trip to Beijing and can hardly wait!!! Also, I will be making a new page on the site to give information and facts on Osteosarcoma, it willl be very informative. Until next time...
July 28, 2008
Hello everyone! Long time, no update! This summer has been really busy for us and I have had little free time to update. Just to walk you through our update...Sophie and I left for Happiness is Camping from June 30-July 7. Camp was awesome - Sophie and my cabins were across from each other so we got to see each other a lot. I signed up for Photography (w. Phia), Pool Sports and Film (w. Phia). We had a great time...there was even an animal show where we got to hold a 6 foot long python! Amazing! I even sported a red wig on July 4th! We left for Switzerland on July 8th!!! The flight was 8 1/2 hours. We had a great time in Switzerland with Mommy, Aunt Lisa and Rene. We visited Zurich, and - what an underestimated city- it was gorgeous! We also visited Lucerne (walked across the famous bridge built in the Middle Ages and the cute shops), Bern (while it was raining, but we saw a live bear on display), Interlacken, Augusta Raurica and Baden. We got to visit the Alps and how gorgeous! The view was incredible and Switzerland is such a beautiful country! We even got to drive to Germany, we were 10 minutes from the border. We were only there for an hour, but Germany was beautiful!!! Switzerland was an incredible trip and we loved every minute of it!!! Thank you Lisa and Rene! We returned home and left for Amputee Camp in Ohio on July 19th. Camp was awesome and I even got to play Wheelchair Football, go fishing and perform skits. I also got to play disc golf for amputees at camp thanks to a great guy named Randy Mecca. Randy is a professional amputee disc golf player. If you are interested in learning about amputee disc golf, visit Randy's site at www.discgames.org Now, we are back home and I am doing summer reading for school and working on History Fair. (Yes, history fair goes into summer.) We are also trying to work out the last minute arrangements for my trip to Beijing in September. I hope everyone is having a great summer and enjoying it. PLease say a prayer for my friend Sammy Rotman, who recently relapsed with Osteosarcoma. Hope all is well and please feel free to sign the guestbook, I love to hear from everyone. Check out news on the Paralympics, also at my blog: www.alexandraslife.edublogs.org !!! Pictures will be posted soon!!!
June 27, 2008
Hello everyone! This is Alexandra, again. Sophia and I have officially finished schpol for the year. I took my Living Environment Regents on Tuesday and I think that I did very well. We are all very excited about summer and the busy one that we have ahead of us! We have been packing for Happiness is Camping. We are leaving for camp on Monday! Summer is already going very fast
June 13, 2008
I would like to take this time to ask those reading to say a prayer for two of my friends who have recently been diagnosed with cancer. Please say a prayer for Drew Taylor, an 8th grader from my school as he embarks on the journey of chemotherapy. Also, please say a prayer for my friend Natalia Harris, as she continues with treatment for the same type of cancer that I had. We will win!!!
June 13, 2008
I recently went for my check-up at MSKCC and saw some old friends and nurses of mine. I had to meet some doctors and have a Chest x-ray and Echocardiogram. Thanks for all of the support! On a happier note, the flights have been booked and...we are going to Switzerland!! Aunt Lisa and Rene have invtied us to visit them in Zurich so we will be flying there for a week this summer!! Yes, I am very excited!!! School has finished for Sophia, so she is officially on summer vacation. I have another week of one-hour review classes at school for the Living Enviornment Regents, and then I am off for the summer. Sophia and I will also be going to Happiness is Camping for a week and are very excited. I will also be attending Amputee Camp in Ohio this summer, as well. It's going to be a fun summer! Until next time...
June 8, 2008
HAPPY 14TH BIRTHDAY MICHAEL!!! This is a birthday greeting for one of my best friends from the hospital, Michael Romano. Michael was such a special and important person in my life. He courageously battled Neuroblastoma for almost 7 years and unfortunately passed away on October 21, 2005. He was 11 years old. We all miss you very much, Michael. We think about you always and you are in our hearts everyday! Please say a prayer for Michael's family one this tough day.
Click Here to donate to the Michael Romano Memorial Alex's Lemonade Stand in Honor of His 14th Birthday
Click Here for Michael's Web Site
May 16, 2008
Hello everyone! I hope you all had a wonderful and blessed Mothers Day! We spent Mothers Day with our family and Baba and Papa. A lot has been going on - including a great deal of homework and projects. Also, Softball Season began and Sophia resumed her position on the Visitation Academy Softball Team! Go Sophia! We have had fun at the softball games. I have also been working hard in school, preparing for my Mock Trial Tournament tomorrow - I am playing an attonrney and yes, I am a little nervous, but even more excited! I finished Juilliard last week after playing in my Spring Clarinet Ensemble Conert!!! I feel sad that I can't go back to Juilliard every Saturday because the year ended but I have next year to look foward to! Also, please continue to pray for Hannah Crossley and her family through this Mothers Day season. On a much happier note, I heard back from the U.S Paralympic Academy about a contest I entered to win a trip to the Beijing, China Paralympics this summer and.....I WON!!! We are sooo excited going to China in September. I can't wait to see China, eat Chinese food, learn a little Chinese and further explore the culture! I was also nominated by my teachers to attend the National Young Leaders State Conference for showing great leadership skills, in Westchester! I will keep you updated on more news as it comes! Please feel free to sign my Guestbook!
April 22, 2008
Today has been a rough day for my family and I. We learned today that my dear friend from the hospital, Hannah Crossley passed away. Many of you know that Hannah was one of my best friends from the hospital - we both enjoyed sharing rooms Inpatient and watching movies together when we were being treated together. From this came a great friendship between us. Hannah and I both went through rough times together; strong through thick and thin. Despite Hannah's relapses in 2005 to present, she never stopped fighting. Hannah is not suffering anymore, but is now at peace and rest with God. Please keep the Crossley family in your prayers. Our hearts go out to Hannah and her family. To leave a message for Hannah and her family, visit her web site www.hannahsjourney.com
Celebrate Hannah Crossley!
January 16, 2007
Merry Christmas & Happy New Year to everyone! This Christmas was awesome!! On Christmas Eve, Baba, Papa, Aunt Lisa and Rene came over for dinner. We also helped Mom put up the stockings and decorate the tree. It was fun and we made some yummy sugar cookies for Santa! Santa treated us great this year! This year I got some great gifts including:
December 11, 2007
Hello overyone! It is me again! Sophia and I can not wait until Christmas....only 14 days away. (Don't worry, we're counting :)) Anyway, among our Christmas lists are an iHome Clock Radio, a pair of pink skiis (imagine who would want those...hint: she is typing), an iPod, some High School Musical games ( at home we are very big fans of HSM!), some Hannah Montana stuff, CD's, DVD's, Wii Nintendo Game System and so on. Like I said, this Christmas I am excited about spending time with my family and friends. It is a nice warm feeling this time of year.We are looking foward to some snow because New York has only had a few inches a week ago. It is sleding time and skiing time. I may attend Amputee Ski Camp again in February and can't wait. The tree will be up soon for the holidays. I am in such a good mood in December. It is the sharing season and Mom's birthday is coming up the 27th. We may even expect a visit from our cousins in Chicago for the New Year! Well, it is time to get out the holiday decorations and celebrate the birth Christ awaiting Advent. Everyone has been keeping up with our Advent calendars. My Juilliard Christmas Recital is also coming up so I have something more to look foward to. I recently spent a day at Sephora with my friends Marion and got a great make-over and brought some lip gloss. It was sooooo much fun! Well, I am home today from school, a little under the weather and not feeling that great. It is a bummer, I know. Signing out with a little remark, "It's that time of year again", or as we put it "It's Hot Cocoa Season Again"
The Christmas carols are playing and it is all overwelming! I love it so much, though. "It's the most happiest season of all...." "Deck the halls with boughs of holly, fa la la la la, la la, la, la, tis the season to be jolly, fa la la la la, la la la la..."
December 3, 2007
Hello everyone! It's Alexandra! I hope everyone had aDe great Halloween and Thanksgiving! I was a Juicy Couture Rocker for Halloween and Sophia was a 1920's flapper. Thanksgiving was fun and we had tons of leftover food. Sophia is continuing her violin lessons and I am truly loving enjoying my clarinet lessons at Juilliard. We got some snow yesterday so Sophia and I went out and swiped some snow off our car. As sophia and I call it it's "Hot Cocoa Season" which we wnjoy with some good chocolate cake! I will keep you updated. For now, please sign the guestbook because I love to hear from you all. Also, read my entry on my speech at the Benefit Gala for Gilda's Club!
October 17, 2007
Hello! October 2nd was Alexandra's 12th birthday and she had a great time. School is going very well and Alexandra joined the Debate Team. She like to put up a good fight! Sophia is taking the violin and will start the cornet in school. Alexandra loves Julliard and had some upcoming recitals. Her class there will be going to see the NY Philharmonic Rectial. Today, Alexandra got out of school early and Nana and Mom took her to get her ears pierced. It hurt a little bit, but she's glad they're pierced and she can wear earrings! Alexandra had her tests done a while ago and EVERYTHING IS OKAY! Her Girl Scout troop is going to see the Legally Blonde on broadway so she's looking foward to that. We'll keep you posted!
September 17, 2007
Hello everyone! Sophie and I have returned to school! We stayed in Connecticut for the first two days of school but we've officially returned! I'm now in 7th grade and little Sophia is in 5th grade, Homework is twice as much this year so I'm overwelmed. The good news is that yesterday I went with Mom to the Julliard orientation and rented out my new clarinet! I'm so nervous and excited at the same time.I'm looking into joining the Skiing Club and I'd love to do Gymnastics. This year I'm in Girl Scouts so far. I'm still working out getting used to new school curriculum. I would like to inform you of a special person I knew, Frankie. who was a senior at Xaverian High School, the same building I go to school in. Frankie's family knew mine and he was treated for Osteosarcoma at MSKCC with me. Frankie also lost his leg above his knee. On a sadder note, Frankie relapsed and sadly passed away on Friday night, Spetmeber 14, 2007. We miss you Fraknie, all our blessings to your family from ours!
August 21, 2007
Hello Everyone! We all got back from Pennsylvania a few days ago. We had a great time going to Dutch Wonderland for the first time, we also visited Knoebels Grove Amusement Park, and went swimming, and visited cousins and family. Tonight Daddy is taking us to an Al Stewart concert in New Jersey so we hope we'll have some fun tonight! We'll keep you posted, but check out the two new slideshows I created in the Multimedia!
August 8, 2007
Hello! The summer has been very busy lately! Phia and I have been having a lot of fun. We went to Happiness is Camping for a week and a half. We swam, cooked, sang some camp songs and made lots of new friends ( Krissy, Cassie, Helena, Melanie, Lorena) Camp was definetely worth it. Soon after, for four days I went down to Atlanta, GA for Amputee Camp. I had a great time swimming, playing tennis, wheelchair rugby, soccer, basketball, bowling and making new friends. I even hung out with kids from Michigan and San Fransisco! Amp Camp was a great experience. Now, back at home, Sophie and I have been taking some tennis lessons twice a week with one of my teachers and we're getting a good work out. We've been spending time with Grandma and Grandpa, too. Sophie and I have been enjoying the summer and playing at the park. Phia and I also were shocked last night as our own Bay Ridge experienced a tornado. All of the streets around us were closed off, trees were all over the sidewalks broken, windows of the stores and churched were broken in so it has been rough to get around the nieghborhood along with many power outages and transit limitations. For now, Sophia and I are packing for a week in PA and we're very excited for High School Musical 2 to come out 8/14! Keep you updated, the summer's going by so fast!
June 15, 2007
Hello everyone! I'm very sorry I haven't updated sooner! I've been studying for finals this week and then Monday I get out of school! I'm very excited, as I'm working on a project on World War I with a friend and making the best of the last days of 6th grade. I've had a cold all week so I may visit the doctor next week. Sophia's birthday was the 5th so we went out to eat.HAPPY 10TH BIRTHDAY SOPHIE! We also all participated in MSKCC'S Rock and Run on the River Relay. We did a 5K walk for cancer research and had a great day! We also celebrated Michael's 13th birthday! HAPPY 13TH BIRTHDAY! I will keep you updated. As you can see, I've been updating the website. Talk to you soon! P.S The guestbook is being fixed so just hold off the comments for a while...
March 16, 2007
I'm very sorry that I haven't spoken or updated in a while. I got back from ski camp and it was amazing. I got a Gold medal!! I am working on a mini history fair project in school and studying French and Latin lately. Things have been very busy. I had no school today because it was Spirit Day and last week in school I celebrated "pi" Day (the mathematical term. pi= 3.14 & it was 3/14/07) On Sunday I will be performing in the St.Patricks Day Parade with the Xaverian High School Concert Band! I am very excited!! My leg has not been fitting great or staying on lately, so my mom, dad and I all went to get it fixed today. I also had my first green bagel today! Well I will update more soon......
February 3, 2007
Sorry, everyone- I haven't updated in a while but I've been very busy. I finished all my midterms and I passed them all and did very well on my report card. As I said in January, I have a lymphnoid in my groin that everyone was worried about but the doctor said it was just an infection. Recently, my ear has been bothering me, and I've had some shortness of breath and a sore throat. I went to the doctor and he said that I have a very bad ear infection in my right ear. So, right now I have to take some pills and motrin until Tuesday.
On a happier note, I am leaving on Monday morning for ski camp at Camelback with other amputees. It shold be a lot of fun and I am looking foward to making new friends who are amputees just like me. My parets are sending me alone this year, so I'm a bit nervous but I shoudl be fine. Mom, Dad and Sophia are coming to stay on Thursday to see my skiing race and I'm really excited. I'm not looking foward to all of my homework I'll have to do but I'm hopeful that I'll manage it!I'll update soon when I get back from camp and hopefully I'll have some new sking pics!!!!
January 11, 2007
Hello!! It's 2007! We wish everyone a Happy, Healthy New Year!!! Alexandra has been studying for her upcoming Midterms and she's been playing her piano and clarinet. She recently was in a concert and she was amazing! Sophia is taking her 4th Grade State ELA's and so we're all very nervous for her!! Diane recently spotted a "rash" on Alexandra's leg and so we're going to the hospital today to check it out. We'll update soon!!
December 6, 2006
Hello! I have been very busy lately so I haven't had the chance to update. I have recently joined the school newspaper! I am so excited! I am in charge of an article called "Spotlight on a Student" and an anonymous Advice Column (oh yeah thats the best :) I have a band concert next Friday (clarinet) so I have been practicing for that. I got my report card back from school and I have a 90.5 trimester average! I am very proud of myself. I have also been asked to be the "manager" of my school's track team - that could be interesting! I will update soon but for now I've got to go!
November 24, 2006
Hello everyone! I hope you have a Happy Thanksgiving!! Enjoy the holiday!! I have been busy in school and am working on lots of school projects!! I hope to speak to everyone soon and I'll update more in the future!
October 19, 2006
Hello, everyone. I (Alexandra) have recently come down with a bad cough, and I've been getting headaches, nauseau and stomach aches. Due to this, I've been at home since Wednesday. I am starting to feel a little bit better, but I am still going to visit the doctor. Please pray that I feel better. I will try to go to school tomorrow and I will present my speech on my running for Class President. Wish me good luck! I will update soon on Halloween!!!!
October 13, 2006
Hi everyone! I'm sorry I haven't updated in such a long time!!! Sophia has recently started the violin and she is doing awesome! She loves it and I'm very proud of her! I'm in the Genesis band and I am still playing the clarinet. Since I've been playing for a long time I might be moved up to the Advanced Band Level!Isn't that wonderful! I've been doing very well in school and I have lots of new friends. I am going to be a Pink Ladie with my Mom and Sophia for Halloween. I'm so excited and anxious about trick-or-treating. Hey, you're never to old for Halloween. Please say a prayer for the Romano family as Michael's one year memory day (Oct.21) approaches. I hope everyone has a nice holiday and Happy Halloween!
September 17, 2006
Hello, everyone, this is Alexandra!! I started School in Genesis @ Xaverian on September 7th and I absolutely, LOVE it!! I am really enjoying school and i have made new friends and I like my teachers. I have been taking Latin and surprisingly I like it a lot. I also really like Science and World History. We're studying Egypt in History and I find it very fascinating. I take the school bus to school and thank God-- I get picked up at 7:45!! What a relief, I used to get picked up at 6:30 in the morning! A few days ago, Sophia sprained her ankle, so she has been having pain in her foot but the X-rays say that there is no serious damage. Also, on September 16th,my tutor and very good friend from the hospital, Marion took me out to lunch and to a theater show, Hairspray. I loved the show and was bopping in my seat to the music. The music was awesome!! Also, Haylie Duff (Hilary Duff's sister) was in the show and right in the middle of the show, she waved at me personally! I freaked out and it made my day! After, the show, Marion took me to the stage door and I got everybody's autograph!! When Haylie Duff came out the door, she went straight to me first and gave me an autograph. I told her she was amazing and she said so was I. She told me that she was so nervous up on stage- it was her first time on Broadway and she did wonderful! Afterwards, I got a picture with her and I was sooo Happy and excited!! I had met HAYLIE DUFF!!!!! (and she talked and had a converstaion with me!!! :)) Well, I will put up my pictures soon enough and my picture with Haylie Duff!
Happy and Healthy,
aLeXaNdRa!!! <33
July 2006
Hello everyone!
Its summer and I am having the time of my life. I went to sleepaway camp at Happiness Is Camping, a camp for children with cancer.Then I went to Atlanta, Georgia for a sleepaway camp for amputees.I went swimming,canoeing,and even went to a dance!!!!Talk about fun! I also went to my house in Pennsylvania. I finally got to relax, use my new digital camera and see some family.(Pictures will be posted soon.)I saw some family,played with cousins, went swimming,and even went to Knoebels Amusement Park! I am now in Connecticut with my cousins and tomorrow I am off to Maine for Camp Sunshine, a family camp for kids with cancer. It'll take six hours,with no T.V!!!! (but some lobster and steamers!!!) Keep you updated!!!
Love, Alexandra
June 23rd, 2006
Alexandra has graduated from P.S 176 and is moving on to middle school. The ceremony was very nice and Alexandra got awards for outsanding achievement in: Technology, Math, Band (clarinet), school spirit, excelsior award, best of brooklyn award, writing** and reading. Sophie and we are very proud and all Alexandra. Her grandparents came to her graduation so she was very happy about that.
May 2006
Alexandra and Sophia were in the Norwegian Day festival on the Viking ship float. Alexandra won the annual Scandinavian East Coast Museum Vking Essay contest!! She won a free Norwegian sweater and got to ride on the float in the parade! We're so proud of her achievement. Meanwhile, Sophia has been doing very well in gymnastics and is getting the hang of doing a complete cartwheel so Alexandra is very proud of her. Sophia has been very good helping around the house lately and we're very happy with her.
April 15th, 2006
Today was a rough day for the whole family. It was the day Alexandra lost her leg. She was crying most of the day but she felt good to get her tears out. We're there for you, Alexandra... always.
March 2006
March is here! Alexandra has been so happy. She found out today that she was accepted into Genesis Junior High!!!She took a big test to get in and she did!! She is so happy and excited. It was her #1 choice for a junior high. Alexandra also played her clarinet in a multi-cultural festival with her after-school We are so proud!!! Keep up the good work, Alexandra!!
February 2006
Alexandra went on an amputee skiing trip to Camelback with her Mom for five days. She had been practicing her skiing and says she's really improved. She says the mountains up at Camelback are so beautiful at night and she has made a lot of friends so far. I saw her ski as I was coming to pick her up and she was AMAZING!! Alexandra did great and she even scored a silver medal in a race. We also went sledding down a big hill in the park at home. The girls hit a big bump and went flying in the air but they claimed it was an "awesome feelling in the air - excitement and bewilderment" ???
January 2006
It is some COLD January! Alexandra saya its so cold when she wakes up in the morning for school. The girls love getting bundled up and staying "cozy" (they are really into being cozy!) Alexandra got some good scores on her class tests - a 98!!! We'll keep posting!
December 2005
Christmas! Toys! Toys! Alex and Phia had a wonderful Christmas and loved the toys they got. Alexandra and Sophie helped pick a Christmas tree and enjoyed decorating it. Santa brought walkie-talkies, clothes and a whole lot more. We went to BaBa and PaPa's house for dinner and then got over to Nana's house for more celebration. The girls got to see their cousins from Connecticut and New Jersey amd were so happy! It was a marvelous day for Alexandra!
November 2005
The girls went to grandma's house for Thanksgiving. Alexandra had a wonderful time - especially with all the food! Her cousins from New Jersey came in and she was able to play with them over the holiday. In school, Alexandra has taken her fifth grade city - wide social studies test and she thinks she did well - so we wait for the scores! Keep you updated!
October 21, 2005
Today is a very sad day for all of us. We found out early this morning that one of Alexandra's dearest friends, Michael Romano, lost his 7 year battle with cancer shortly after midnight. Michael and Alexandra met while they were both being treated at Memorial Sloan-Kettering Hospital, and they became instant friends and bosom buddies. Michael fought a long and courageous fight, and his absence will leave a void in all our hearts, especially Alexandra's. Their picture together is on the "Important People" page of this website, and he certainly was one of the most important people in Alexandra's life. He was very special. We send our deepest sympathy and support to his family. The world was a much better place with Michael in it, and we will always remember and miss him.
October 2, 2005
Today is Alexandra's birthday! Happy 10th birthday, Sweetie, and may you have many, many more! We love you - Dad, Mom, Sophia and all your family and friends.
September 2005
We finally got around to posting a few pictures from our trip to Italy. Check 'em out!
August 2005
Recently I visited Italy for my Make-A-Wish trip and I was there for 10 days. We visited Rome, Florence and Venice. I enjoyed Rome very much. I saw the Colisseum and went inside. I also saw St. Peter's Basilica, the Sistine Chapel and Pope Benedict XVI. The best part of Rome was when I received Communion at the Vatican and received a blessing from the priest. My parents were very touched by that. I also enjoyed seeing the Pope. In Florence I got to see the statue of David and some museums. My Nana met us there and finished the trip with us. Florence was full of stores for shopping. While we were in Florence, my Uncle Tom surprised me and came to Italy to finish the trip with us, too! I was very happy about that. In Venice, I got to go on a gondola ride. We passed Marco Polo's house. I really loved St. Mark's Square. It was beautiful at night. Boy, were there a lot of pigeons! Venice was so romantic. I enjpyed being there with my family. This was the ultimate trip - definitely! -Alexandra
May 2005
Alexandra recently had 3 "suspicious" moles removed from her leg and stomach. After a very tense and nerve-wracking two week wait while the biopsy was performed, we received good news: the moles were not cancerous and she is fine. This week she is taking her New York State grade 4 math test, so she's a bit nervous, but she thinks the first day of the testing went pretty well. Two more days of tests to go...
April 2005
Recently, Alexandra auditioned for a talent show at school. They were selecting 30 out of 130 kids to perform in the talent show. She auditioned with a clarinet solo and, amazingly, she made it!! Alexandra is very happy and excited and we all are proud of her. She said she tried out just for fun and being selected was the farthest thing from her mind.
Also, Alexandra was chosen to participate in a speakers' panel to talk about her experiences with Gilda's Club. She and her sister Sophia both attend Gilda's Club each week, a place where people whose lives are affected by cancer go to discuss their experiences .She was very nervous but excited. She addressed a rather large audience and discussed her medical history and how Gilda's Club has helped both her and Sophia to deal with the many issues they face. Of course, her favorite part of the experience was the delicious food after the speech!!
Since Thursday, April 28th was "Bring Your Child to Work Day", Alexandra went to work with Aunt Lisa for the day. Aunt Lisa is a trial attorney and Alexandra was very excited to go to the courthouse and spend quality time with her and to see what it's like to be in a courtroom at an actual trial.
After almost a year of planning, in June, we are leaving for Alexandra's Make-A-Wish trip to Italy. She is EXTREMELY excited about this. We plan to see the sights in Rome, Florence and Venice, an itinerary chosen by Alexandra herself.
We've been very busy and we know you are, too, but please take the time to say a prayer for Alexandra's following friends from the hospital: Nicole, Michael and Robby, who has relapsed, and, of course, for Alexandra. Thanks!
March 2005
We're finally getting around to posting some pictures from Alexandra's trip to Camelback in February. Check out the "pictures" page and take a look......
February 2005
Alexandra is currently at the Camelback Ski Resort, participating in the "adaptive skiing" program that's offered there. She is there along with her Mom and Paddy Rossbach, the President of the Amputee Coalition of America and 11 other children. They arrived yesterday and within 2 hours, Alexandra was "hitting the slopes" along with the other kids! Hopefully, she'll have some pictures to share when she returns on Friday.
December 2004
Alexandra has returned to school on a full time basis as of September 2004. She has adjusted very well to her new routine. The bus picks her up rather early each day, around 6:45am, so she has been getting up much earlier in the morning than she had in the past. She takes adaptive gym class twice a week and has 3 physical therapy sessions each week as well, all geared towards making her more proficient in the use of her prosthetic leg. In the afternoon, the bus brings her to afterschool, where she has been reunited with many of her friends and has made several new ones. She was able to keep up with her schoolwork this past year and a half and continues to do well in the Delta program. In addition to the physical therapy, Alexandra continues to see a therapist to help her deal with the traumatic loss of her leg. She is working very hard to cope with this loss and has been extremely brave.
July 12, 2016
This past week was AMP CAMP WEEK. I could probably write an entire novel about why this has been the week that makes me BEAM, for like the last ten (honestly, I lost track) years. I'm smiling just thinking about it. Every single time I meet a young amputee, I tell them about the Amputee Coalition Youth Camp, and why they absolutely have to go.
It's one week at Camp Joy in Clarksville, Ohio, where about 140 young amputees and 35 counselors all gather for the most fun time ever. This was my third year as a counselor and it's probably the most rewarding job I know. Did I mention we're ALL missing at least one limb???
This is the week when the kids throw their legs off, race up rock walls, jump through ropes courses, take endless flips in the swimming pool, break out into flash mob dances at lunchtime, race each other on the basketball court, get into some aggressive games of Gaga, swap prosthetics, and walk around camp with a smile that comes from knowing you're around people who look like you. When I walk down the dining hall, around ~180 other amputees, I don't get any reactions to my slight limp. Because no one's paying attention to it.
The kids at camp know there will always be stares/questions/some pity coming from strangers, the people who come up to us and give us a congratulations on walking outside because 'Wow, you're doing so well despite...' BS. Despite what? At camp, I see my kids' faces light up when they find a friend who teaches them how to tie their shoe with one arm, when they learn how to break-dance in a large crowd and totally own it without hesitation, when they realize they're a beast at sitting volleyball, and actually enjoy hiking when there's a group willing to find ways to get those legs up the terrain. They smile, they are accepted, they celebrate themselves... they realize they can do SO MUCH if they just try. That's what camp did for me, and that's what I want for my campers. We have late-night chats about the kids at school, how to fit tight jeans over prosthetics, how to clean liners the right way, how to demand a better prosthetist (yes, there are bad ones), how to get involved in sports, who they talk to when they need help... We teach them independence, because that opens the door to everything for us. Being our own advocates.
As counselors, we show the kids that they never have to settle. Yeah, in the non-camp world, when our campers are back in a pool of able-bodies, that tinge of 'Here we go again with everyone watching/I look different doing XYZ than everyone else here' may kick in, but if the kids just hold on to what it felt like when they tossed aside their hesitations at camp, hold onto the memories of how much fun they had when they just went for it, and channel that mindset for whatever crowd they're in, they won't hold back -- they'll kick ass. The kids realize if they're willing to adapt just a little bit, they can do anything. You want to climb the rock wall at your local gym? Go. Right now. Show 'em your one-arm strength. You want to go down the waterslide at the pool party? Throw the leg off. Who cares if you don't walk up the stairs - hop. Find a way. You know you want to go down that slide... Nervous about that limp when you walk past lockers in the hallway? Let's get you in shorts, and teach you a dance. Walk down the hallway with some confidence in just how balanced you really are.
And I obviously go back to see the counselors, too. We're best friends, and we've been there for each other in more ways than I can count. They brought out the stronger side of me that celebrates my body. And that's special. It's a unique perspective we have, celebrating a body type that the rest of the world would not choose. That's why it's so important as a kid to have that support system. Nearly none of us have amputee moms, dads or siblings... but we have each other and that means the world. For just one week a year, it is so rejuvenating to be around a community that 'gets it' at a level most people just don't.
In other news, I've spent the past month exploring Boston on the weekends while working as a clinical research intern. This city is full of so many surprises: beautiful parks, med campuses, boardwalks...and yep, I've already tackled the ice cream list. Still on the hunt for coffee shops, though. I miss a really good dirty chocolate chai from Hopkins. Until then, Starbucks!
June 11, 2016
Right after leaving Baltimore, my dad and I drove up to Worcester, MA to help Sophia move out of her freshman dorm. She officially finished her first year at College of the Holy Cross! We're so proud of her for making so many strides up in MA. She's made a great group of friends on campus and seems to enjoy her Psych classes. Of course, Sophia and I love any and all chances to move around once school is out, so we spent a few days with family in Connecticut as we made our way back down to New York.
Crazy exciting news once I got back home... Last year, I submitted a grant to the Challenged Athletes Foundation (CAF) to obtain a running leg. When I showed up at A Step Ahead, I thought I was only getting my new foot/ankle/knee as planned, but Erik and his team surprised me by already having my running leg set up!!! It was AWESOME. I spent many hours with the A Step Ahead team practicing taking fast steps, jogs, leaps, and then 'runs' in the parking lot. The foot is so bouncy!!! It was emotional, too. I had not run in 14 years, since I was 6 years old. Besides skiing and swimming, I wasn't used to moving at a much faster pace than walking. It was thrilling and exhilarating. I have a bunch of new exercises to try to build up my core and maintain my ankle. I get tired really quickly, but they say it's just a matter of building up endurance, since my body isn't used to working those muscles at that kind of physical activity level. I trust the process, and just have to be patient. It will come! Little by little, I want to get there. My dad got me a new pair of running sneakers later that day, so we're off to a good start. :)
Then we headed out to Frackville, PA. One of the things Sophia and I look forward to most every summer is staying at our family's house in Frackville. When my grandparents moved to NYC after WWII, both of their big families remained in PA. We have tons of cousins there. Summer is the best time to take trips to Heisler's Dairy Bar for the freshest ice cream and most beautiful mini golf course overlooking countless fields, Knoebel's Amusement and Water Park, Hometown Farmer's Market, and basically every ice cream shop I find. There's always something going on when so much family is in the area. Plus, I found lots of terrain in the woods to practice using my running leg. Chugging through lots of water bottles, but making progress! I make Sophia run with me; even when she looks annoyed, I think she enjoys it LOL.
When we got back to NYC, I signed up for an Ossur Running and Mobility Clinic, hosted by CAF. Ossur is the prosthetics company that supplies all the running legs that CAF distributes through grants. They host running/mobility clinics all around the country, so I was eager to sign up for the annual one in Harlem. So happy that I went! There were tons of amputees with/without running legs -- kids, teens, young adults, adults. Each amputee was paired with a volunteer; mine was a great DPT student from Columbia University. We split into teams, and some awesome Ossur/CAF staff led us in drills on the field, pacing through cones, working on arm position, doing some criss-cross foot work for diligence, widening the angles of our sound limb to make bigger steps, etc. The CAF staff, Ossur prosthetists and volunteers were motivating and guiding us every step of the way. Made lots of improvements. (Although, I have to improve my running backwards skills for the obstacle course they made us do hehe.) I even ran into Travis Ricks, who is my co-counselor at the Amputee Coalition of America Youth Camp, and works for CAF. The day was just SO MUCH FUN. It also happened to be Sophia's 19th birthday. :)
And now, I am all moved into Boston for the summer. Very excited and grateful to be set up where I am... big ventures ahead this summer!
May 11, 2016
We need to talk about Team Prominence. (#TeamProminence) Earlier this year, I was approached by a group of five Mechanical Engineering students at JHU. As part of their Senior Design project, this MechE team was designing and constructing a prosthetic ankle/foot system for female amputees. And it gets better–Walter Reed was even behind them! So of course when asked if I’d be willing to offer some amputee insight/guidance and test the prototype, my answer was a big YES. Being the only lower-limb amputee on campus finally came in handy.
When I say I love this team, words can’t even do it justice. Talking about gait, ankle adjustments, ease of fit, etc was all relevant lingo for me, but what made the whole experience the best? Devin, Kate, Ben, Luke and Joey. I could not have expected a more welcoming, engaging, respectful or attentive team. This group genuinely wanted to create something useful and get perspective on their product from the very type of person who would use it. There was a particular care they put into The Prominence and every conversation with me. This past month, I finally got to walk on the prototype. A one-day round-trip ticket to NY (trust me, with my track record, my parents weren't at all surprised I tried to make this happen), some help from my prosthetist, and boom, I had that foot attached to me.
While doing laps on a ramp, I had a really cool AHA moment. There I was, walking, in sturdy form and stable steps, with an ankle that my friends had made. And it kind of hit me right then: I go to school with some really freaking awesome (and very smart) people. These five team members designed and built The Prominence in a basement machine shop off-campus, while still tackling heavy course loads as seniors. I am still in awe. I don't take my ability to walk for granted; I'm thankful everyday that I can simply walk to wherever I want to go, but that's only possible with a good foot/ankle. I hope #TeamProminence realized that their contributions have power. Their good hands, brains, work and design have so much potential. (Check out the news coverage of these guys by clicking here!)
And now, as I'm sitting here typing away, I've just finished my last final of junior year. It's a bittersweet time. Of course, it feels good to finish up exams, pack up the physics homework and bio notes, and get ready to finally have some much-loved family time. Plus, I'm a little too excited to start my clinical research this summer (hehe). But I'll miss the familiar faces on campus, seeing my best friends here all day every day, having the busy schedule that, even when keeping me on the tips of my five toes, I honestly love. Every semester here is like that, but I thrive when I'm under some pressure.
Students like those on #TeamProminence remind me of just how much I love being where I am: right here at Hopkins. I'm surrounded by such innovative minds, and every once in a while, I remind myself that we're all headed for exciting futures; it's a special gift to share the very beginning of those journeys with each other (even if it means seeing everyone at their best in the library grind, but hey, coffee helps us all). At Hopkins, I can push myself, tap into my own abilities, and cheer my classmates on; I love it. To be honest, finishing my third year at JHU is sort of daunting.
People rarely hear me say 'I can't wait for...' because I don't really think that way. I like to stay in the moment. Another year deep into Hopkins, and I'm enjoying the ride... but breaks are good. I think it's about time I curled up in bed with some SVU and an Iced Latte in hand...
April 15, 2016
Little Leg's 13th Birthday!
Happy Ampuversary to me! Taylor Swift once said that 13 is the luckiest number of them all, and this year, I'm feeling all those vibes. Today's the one day a year that's such an emotional roller-coaster for me; it's like, an explosion of, "Oh my god, today's the day that cancer took my leg away, I need to cry for a few minutes" and "Today's the day that every amazing opportunity I've had so far can be traced back to, I need to cry for a few minutes" and just about everything in between. Put it bluntly: April 15, 2003 changed everything. So every year, I take some time to reflect on what this day really means; what's the source of all the happy tears???
Right off the top of my head, I can think of all the questions I get from people who love trying to get 'the real scoop' on why my life must be so much less satisfying than theirs (Spoiler: these are funny but real quotes):
- Don't you hate having to put that leg on every morning? All that back pain, collapsed ankle, skin issue stuff?
- Are you aware that you're stared at constantly whenever you walk into any room wearing shorts?
- Does the limp bother you all the time? Knowing that people think you're walking in more pain than you really are?
- Is it annoying going up stairs slowly? Always attracting stares and attention? When your pants make your right knee look 'weird'?
- My all-time fav from a stranger on the street in Baltimore a few months ago: Aren't you self-conscious? I would be covering up.
This bad-ass prosthesis of mine has a miraculous means of giving me a very natural step, and I'm thankful to put this efficient leg on everyday. All the back, ankle and skin stuff has become as normal as maintaining good make-up and hair; it's just part of my routine. I love showing my mettle in shorts all the time, because God damn, my left leg has grown quiiiite muscular. And the stares -- been there, done that. Ship sailed on that one real quick. I know I'm being stared at on line for lunch, walking to class, blah blah everywhere. Although I can't speak for all amputees, I honestly don't mind the questions. I understand - a prosthesis stands out, and people like to ask about it. (PSA: If I ever told you I was bit by a shark, sorry, I lied.) A long time ago, I made a decision to toss aside anxieties about who will "get it" and who won't. I haven't looked back since.
These days, I'm busy getting through a chunk of Public Health/Pre-Med classes as a junior at JHU. Every once in a while, though, I remember as I'm rushing to physics class... that my ability to walk across Gilman Hall in a usual rush, isn't my feat alone, and my mentality regarding amputee life, isn't that of all amputees; there's a whole team that helped me reach this point. Adaptive gym teachers, physical therapists, occupational therapists, oncologists, surgeons, nurses, social workers, prosthetists and many many hours of time, are all part of the source of confidence I have in what I can do. Early on, I gained an appreciation for what a team effort really is, and just how wonderful the people who do anything -- no matter how small (like making me a really good iced vanilla latte) -- to make me smile, really are. Since April 15, 2003, it's been essential for me to surround myself with people who bring out my best... and I like to think that I enjoy doing the same for others just as much.
At eight years old, I had a plan: I was going to push and maybe I didn't know what my exact interests and goals were quite yet, but I was going to kick my way forward without limitations. That's what I do. Through the amp club (I made that phrase up), I've learned how to walk, swim, play soccer, rock climb, ski... in the company of the most resilient personalities. There's nothing in the world that keeps me from going back to adaptive ski camps, or the Amputee Coalition Youth Camp, where I get to help kids understand that accepting limb loss is by no means as rewarding and exciting as embracing and celebrating it.
I’m not saying there aren’t challenging days. Are there days when my leg is painful to wear, when it’s annoying or frustrating me, when the stares rub off on me the wrong way? Yes, absolutely. But I would never want to take back the life experiences this leg has given me, the journey it’s taken me on, or the friends I’ve made who share this experience with me. I’m doing what everyone else is doing — I’m handling the set of cards I’ve been dealt. There’s a special distinction between accepting something that challenges you, and wishing things were different. On my bad days, the thoughts running through my head may be something like: Ugh, I wish there was a lotion that was more sensitive to my little leg’s skin, or Hmm how can I modify my socket to relieve the pressure point?
It’s never, ever been, “God dammit, I wish I had two legs.”
So to my beloved little leg, thank you for opening the doors to everything. For an optimistic outlook, an open heart, an empathetic mind, a curious intellect, and a drive to seize opportunity (like when you want to go down a five-story water slide but it's not handicap accessible, so you get the three young amputees around you to make a relay team and hop up every. single. step. because duh, you just love water slides), without getting caught up in who's staring/how different I look/that icky 'but why is it harder for me to do XYZ than for her to...' lingo. You've given me so much.
I am lucky.
April 3, 2012
It's been a while... Hm, I need to emphasize that a bit more... IT'S BEEN A WHILE since my last update. I guess all I can say is that no news is good news (for the most part)! A lot has happened since my last post. Health wise, things have been great. Scans have all been clean. I can't explain enough how much of a relief it is to get back good scans. The end of freshmen year was awesome and I absolutely love Poly. I cannot discuss this next topic in detail because it's too hard to write about. After a long fight in the hospital, my Papa passed away last summer. I miss him more than I can write and I love him more than I can say. It's been really hard without him, but he is always my hero and the person I admire most. This year... Junior year... it's been busy! I love playing in the Band at school, my classes have all been challenging but I'm enjoying this year. I must say that I'm really enjoying math and physics this year (history, too). So it's safe to say that Pre-Med is where I'm headed! I'm still at MSM playing in the Repertory Orchestra and a Woodwind Ensemble this year. The Ensemble has really been great because as much as it's challenging, I've really improved because of joining. This past winter, I went skiing at Camelback. It was an amazing trip and I got to see my favorite familiar faces... Mau, Tyler, Stephanie, Kelly! Over spring break, I went skiing for four days in Steamboat Springs, CO for the second time. Amazing trip! The condo was fun, I met a bunch of new girls who really inspire me, and the weather... oh my. It was so warm I skiied in a t-shirt, something you just cannot do on the East Coast! My favorite part of the city of Steamboat is the scenery. I cannot do it justice by writing; it's something you just have to see. The view of the mountains all around me at the top of the hills is breathtaking and... inspiring. I'm back at school now for the final stretch before summer. I'm hopefully going to be a counselor at the Amputee Coalition of America Youth Camp this summer! It will be my eighth year (I've lost count)! Also, it's National Limb Loss Awareness Month! Spread awareness! This life is one I'm proud of.
December 15, 2009
Back from The Hartford Ski Spectacular! The trip was SOOOO MUCH FUN! =) Sorry for the caps, but it was THAT AMAZING. I flew to Denver by myself for the first time, which actually went well. There were about 20 kids at the Ski Spec, and even more coaches. Each "ski team" at the Ski Spec stayed in their own rental house in Breckenridge, with their team's coaches. My house was full of kids I'd already knew and new friends :) During the day, there were Advanced and Mid Level ski groups that went skiing with different kids and coaches. I was in the Mid Level group (Advanced group, soon!) with two other girls. Breckenridge was amazing. The snow conditions are so much better than the East. As they say, "If you can ski out East, you can ski anywhere in the world." Hmm...I don't know about anywhere in the world, quite yet...but I'm getting there :) I was able do some shopping in town, and got some Christmas shopping done. The city is unbelievably beautiful, but it was freezing cold. During the day, the windshield hit up to -40˚F! If you can believe that. It was great staying in the house with everyone. We ate breakfast together (made that together, too!) and talked about skiing, played games in our game room at night, ate dinner together, had late night talks with one another, and indulged in microwaving chocolate chip cookies topped with ReddiWhip and caramel sauce. We really became close with one another, and I met a ton of new kids :) I should mention the first two days in Breckenridge I had some altitude sickness, with a lot of vomiting and headaches, but I think it's best not to talk about that ... The day before I left Colorado, there was a Level 1 Race on the slopes. I had so much fun racing, and I had two perfect runs! The adrenaline rush was amazing :) I can't wait to see everyone again! Once pictures are developed, I promise I'll post them!
December 6, 2009
Hi everyone! I'm off to Colorado for the Hartford Ski Spectacular in Breckenridge! It's my first time skiing out west, and I am super excited to see Mau, and all my friends! :) I'll be staying in Colorado for a week, and flying out there and back by myself. (That's a first!) Hopefully, I'll update the site with pictures and posts during my trip! Hope all is well with everyone!
Here's the link to Adaptive Adventures: www.adaptiveadventures.org
Here's the link to Disabled Sports USA: www.dsusa.org
October & November 2009 :)
Alexandra, Sophia, and Mom joined Junior Team A Step Ahead in helping to hand out PowerBar Gels (liquid energy boosters) to the runners in the NYC Marathon! Go Team Go!
November 17, 2009
Wow! I am incredibly overdue for an update! Almost three months! Here I go... I started high school on September 8th and I absolutely love it! :) My school has been amazing in all aspects; I've made countless amounts of new friends and I'm truly just enjoying a great "Freshman Year" experience :) I'm in the Band at school, and we are having our winter concert this coming December. I'm taking Biology, History, French I (Parlez-vous francais?), Health, English, Geometry, etc. The Poly campus is gorgeous; there are ponds, tennis courts, a separate science building, courtyards, football fields... The year has been a transition, though. I don't get home until 4:30pm, and with activities and music lessons, it limits time for other things. It's all good, though! It's all good! I also started Manhattan School of Music this September. I'm there every Saturday from 8:45pm to 4:00pm. MSM is very different from the MAP Program at Juilliard. It's more demanding, and competitive. The classes are more challenging. At MSM, I'm in an orchestra, a chamber music class, and theory and ear training classes, along with a private lesson. I'm enjoying the experience :) I have some concerts coming up this December and January! Exciting news - I was filmed last month for a documentary "Kids with Cancer" by Nickelodeon News. The documentary is focusing on kids who have or had cancer, and how they are living today. The filming experience was fantastic - it took two full days! I had cameras set up around my house, and a whole film crew follow me to school :) Thank you to Marty (camera and interview), Mike (sound), Danny (lighting), and Hartley for making the filming so much fun! The documentary is set to air December 27th on Nickelodeon, so I'll keep you all updated! I also wanted to bring up Hannah Crossley's brother Nathan. Most of you know Hannah was my dear friend from the hospital, who passed away early last year. Her older brother Nathan has been working with Miracle Corners of the World, stationed in Africa for two years. Nathan has been helping to build homes and schools for the less fortunate. We are so proud of you, Nathan! This coming week is an exciting one! I'm going to Saturday Night Live, thanks to my cousin Liz! I'm also attending the Francesco Loccisano Memorial Foundation's 2nd Annual HopeFest Gala this Sunday. I was honored with "the Hope Award" at this Gala last year. This year, I will be presenting the award to another girl, Shannon O'Brien. I am so excited for the event! The Foundation has done great work to aid the burdens of families whose children are dealing with cancer.
If you are interested in learning more about the Francesco Loccisano Memorial Foundation click here.
If you are interested in learning more about / attending the Francesco Loccisano Memorial Foundation's 2nd Annual HopeFest, click here.
August 22, 2009
Sorry for the delay in posting! Things have been very busy and I haven't had the chance to update the web site. Here's an update on what's been happening during the summer. Sophia and I went to Happiness is Camping for two weeks in the beginning of July. We made a lot of new friends, but best of all, we saw a lot of our old ones. This year at camp I signed up for Boating, Scrapbooking, Pool Sports, Ziplining & Rock Climbing, Swimming, Archery, Arts n' Crafts and a lot more. Sophia did all of the same activities as me, but she took Dance, as well. After camp, we visited family in Connecticut. It was great to see our cousins and take a few dips in the pool. I, of course, love visiting the small towns and going to the farmers markets. We went back to Happiness is Camping for another week after that. Then, we were home for a while. We celebrated my Baba's 89th birthday on August 8th, even though it may be August 14th...long story. Our cousins from Chicago were in Brooklyn for three weeks, so we were glad to go to the park with them and hang out with them. We went up to our house in Pennsylvania with them and our grandparents for a week. We went swimming, visited the amusement parks and had a lot of fun. Now we are in Connecticut with our cousins for a day. We will be leaving for Camp Sunshine in Maine tomorrow. It's a long car ride but it's worth the trip. Before we know it, school will be finished, but luckily I've finished all my summer work. Summer went by truly fast and I'm going to miss it! I will be starting Manhattan School of Music in September and Poly Prep Country Day School. These schools will be new adventures for me, and I'm excited. Sophia will be starting 7th grade at her school and she's looking forward to it. I hope all is well with everyone. I also wanted to share a great story with you. I've mentioned quite a bit my friend Hannah Crossley from MSKCC, who passed away last year. Her older brother Nathan, who is in college, recently joined the Miracle Without Borders organization and is stationed in Africa for a year. He will be traveling throughout Africa helping to build homes and school for children and adults. We are very proud of you, Nathan! Happy summertime!
Alexandra's Graduation
Genesis Program Middle School Class of 2009
June 14, 2009
"Life is not easy for any of us, but what of that? We must have perseverance and above all, confidence in ourselves."
- Marie Curie
Alexandra graduated from the Genesis Program at Xaverian High School on June 14, 2009 as a member of the Class of 2009. Alexandra graduated with three awards including the General Excellence Award, the President's Excelsior Award, and the graduating class' Latin award. She will be attending Poly Prep Country Day School in September, where she will participate in the Band and embark on learning French. She is very excited about high school and all that awaits her. She will also be attending the Manhattan School of Music on the clarinet, this coming September, after having graduated from the Juilliard School of Music - Music Advancement Program with a Spirit Award on May 9, 2009.
The Road Not Taken
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I -
I took the one less traveled by,
And that has made all the difference.
- Robert Frost
May 19, 2009
Well, our family has been hit hard with spring sickness! I (Alexandra) have been sick since Thursday. Thursday afternoon I began to feel sick after a nap, and when my mom took me temperature she found that it was 103. Truth be told, I stayed home that night and missed my music concert at Xaverian. I only got worse on Friday and I had to miss my final Xaverian concert and the playwright that took place that night. I had been running high fevers ALL day and ALL night. I had to cancel my audition for Manhattan School of Music for Saturday, but luckily I was able to get out that night to see the final performance of my play. I have been home since then, trying to get better. My doctor said that I have a lung infection :( I tend to get a lung infection every year - the intense chemo I receieved has given me very weak lungs, and a weak immune system. Yesterday, we noticed that Sophia was feeling sick, and she had to come home from school. Sophia has been running high fevers as well, with the same sysmptoms I had - runny nose, ear pain, headache, dizziness, throat pain. She was running 104 fevers in the middle of the night, so we are hoping for the best. Our doctors say Sophia has the flu (we are waiting to hear what type of flu.) For now, I am going to try to attend school tomorrow for my class trip to see West Side Story on Broadway. All the best!
Alexandra is the New York State Senator for a Day!
May 13, 2009
Alexandra recently won the New York State "Senator for a Day" contest, sponsored by New York Senator Marty Golden. Participants had to write about what they would do for the community as Senator for a Day. Alexandra wrote about increasing enrollment and funding for Catholic elementary schools in New York. As many of you know, recent decisions have been made to shut down many Catholic elementary schools within the five boroughs and throughout the state. Alexandra won the contest amidst 1000 other applicants! She will be awarded with a class trip to Albany, as well as lunch and an interview with the senator! Congratulations, Alexandra! We are so proud of you!
May 8, 2009
It's Alexandra! I recently won a contest: A Playwright Grows in Brooklyn - Youth One Act Festival, sponsored by the BrooklynONEtheater group here in Brooklyn. Kids were asked to submit short one act plays. I wrote a play about my trip to China, hoping to somewhat share the incredible experiences I had in China at the Paralympic Games in September 2008. I have had so much fun going to the rehearsals, meeting the other playwrights and working with the actors. If anyone is interested in coming to see the performance, the festival will be held at St. John's Parish (99th Street & Ft. Hamilton Parkway) in Brooklyn on May 15th and May 16th 7:30 pm. The festival is free of charge and I am sure everyone will have a great time. The night is featuring five plays and a set of six monologues, with a special performance by a middle school rock band that is amazing!
May 4, 2009
WOW! It has been so long since I last updated the site! Things have been incredibly busy! For a large update, my best friend Linnea and I made it to the New York City Competition for the National History Day Competition, for our project "Marie Curie: Changing the World through Discovery of Radioactivity." We came in 3rd place at the City Competition and advanced to the New York State Competition! The NYS Competition was held in Cooperstown, NY this past weekend (April 30 - May 2, 2009). We all had fun on the long ride up to Cooperstown - staying in the hotel pool and visiting the Baseball Hall of Fame! Our project won the Basset Healthcare Award for the Best Project on Medicine in New York State! As far as school goes, all is well. I am preparing for auditions for the Manhattan School of Music and the Mannes School for music programs on the clarinet. I am also graduating from Juilliard MAP this upcoming Saturday. I have been working to find a prom dress for my 8th grade graduation, which is merely a month away. Lately, I have continually noticed the stains the recession has put on the economy. Due to lack of funding, my favorite camp - Happiness is Camping has cut down their amount of camp sessions, the Amputee Camp of the ACA has limited the number of children going to camp, Juilliard MAP will be closing after this year (I am the last graduating class), Gilda's Club closed in Brooklyn, etc; it's terrible. For now, we must keep hope! I have decided to start a new thing with the guestbook; I will be posting my Book of the Moment! The book of the moment for this post is Of Mice and Men by John Steinbeck. This book is an incredible story of farmers struggling through the Dust Bowl and Great Depression. Sign the guestbook!
March 12, 2009
Hello everyone! Long time, no updates! I am going to Poly Prep, in case that wasn't clear in my last post! I am going to be a Poly girl <3... I am very excited, as you can tell! My best friend Linnea and I have been working on perfecting our history project for the City Competition on March 29th. We are both nervous but very anxious and excited. I am continuing my lessons at Juilliard, which I enjoy so much! I received in the mail copies of the Bridges Newsletter, the cancer survivorship newsletter that my trip to Beijing was featured in, with a professional photo taken of me! I love the article, and I am very thankful and happy about its being published. I hope all is well with everyone. I will have an extra day to relax, because I have no school tomorrow. For anyone who watched the news, there was a snow day and few weeks ago in New York and New Jersey. Only one way to describe this: it was awesome! A snow day was just what everyone needed! Please keep in your prayers, a high school senior named Sharif Abdallah, who collapsed and passed away after chasing away men who were bullying his friend. Sharif was a high school senior and attended Xaverian High School. Most of you know that my small junior high, Genesis, is located within Xaverian, and so we see most of the Xaverian boys. To read an article about Sharif click here. RIP Sharif. Please sign the guestbook or email us at AlCap95@aol.com! We love hearing from everyone! Until next time =]
February 18, 2009
High School Decisions have been made! I am going to Poly Prep Country Day School! I am very excited about high school and about Poly. I hope that everyone is doing well! Sophia and I are now on Mid-Winter break. We have been studying for school, enjoying trips to Starbucks and having sleepovers with friends! Please keep in touch by signing out guestbook or emailing us at AlCap95@aol.com! I forgot to mention in my last post, that my best friend Linnea and I made it to the City Competition for our National History Day Project on Marie Curie! We are very excited and proud of ourselves, and who knows, maybe we'll make it to State?! Until next time...
February 14, 2009 <3
Happy Valentine's Day! I hope everyone is able to spend the day with the people they love - whether you are with them or you give them a call. I have great high school news. I was accepted into Poly Prep Country Day School in Brooklyn, NY with a scholarship! I am so excited, and now I must chose between LaGuardia or Poly... Sophia and I are very glad that we have off for the week; it's Mid-Winter Break! I am very excited about being able to relax and just hang out with friends. As for now, I am busy studying for a science midterm and a writing test and working on my Girl Scout Silver Award while Sophia is working on her Girl Scout Bronze Award. I hope all is well with everyone. If anyone is interested, I have a Facebook that I use to keep in touch with friends and my old nurses in the hospital. Feel free to add me by searching "Alexandra Capellini." Happy Valentine's Day! "There would be nothing in the world without love."
February 7, 2009
Hello everyone! It's Alexandra! I am back from Ski Camp and I had an amazing time! I learned how to ski the halfpipes, and that was incredible! I had my Juilliard Departmental Forum Concert today, and I did great! I also have great news...I found out that I made it into LaGuardia Performing Arts High School on the clarinet! My parents and I are considering sending me there, but we'll see...I hope all is well with everyone! See you soon!
February 5, 2009
Hi everyone! It's Alexandra! Ski Camp has been going amazing! We have been doing a lot of gate training and GS training. Mau, our amazing Ski Trainer, has taught everyone (Louis, Stephanie, Staci, Chris, Joe, Dan) to hop while we are skiing and we have been practicing making 360s and skiing with actual poles. As far as skiing with poles goes, that's my work in progress...I have been doing a lot of black diamonds today, and have even led our group as leader for a few mornings (yay!). I would love to join the Mau's Racing Team - Team Mau! Tonight, I played my clarinet solo piece for all of our instructors and kids at dinner. It was great practice for my concert at Juilliard on Saturday, and I did great! I am so glad to have made new friends, like Staci, and to see old ones, like Dan, Stephanie, Louis, Chris and Joe! I love our instructors, too! Hope to see you all soon! I'm having the time of my life!!!~
February 2, 2009
Greetings from Ski Camp! I am in my hotel right now...I had an awesome time skiing today! I got to Camelback about 10:30, got my equipment and ate lunch at 12pm. Then, I had to fix my equipment and skiied with my group from 2pm-4pm. Right now, me and my roommate (Stephanie! yay!) are hanging out and we have dinner in half an hour. Then, we hope to use the swimming pool and can't wait to ski the black diamonds tomorrow!
February 1, 2009
Hi everyone! It's Alexandra. I am going to Amputee Ski Camp tomorrow, at the Camelback Resort in Tannersville, PA (it really is the Poconos, though.) I am very excited about Ski Camp, and I can't wait to get back on the slopes and see Stephanie and more of my friends! I will be gone from tomorrow until Friday, and hopefully I can update my trip if I can connect to the Internet up there! We usually ski from 8am - 12pm and then from 1pm - 4pm! And, yes, by the end of the day, we are very tired. But it's very fun! I won't be able to stay for the race on Saturday, because I have a Juilliard performance in a Departmental Forum. Please sign my guestbook! A lot of my friends have been signing lately...I'll update more frequently! If anyone is interested, I am part of my school's Politics in Action Club. I am the Executive Secretary and so I run the club's website, as well as making the club's weekly minutes for each meeting, taking attendance, etc. I recently updated the web site, so if you are interested in seeing it, click here! See you soon!
January 20, 2009
GREAT news! Alexandra got her test results back for the TACHS (Test for Admission into Catholic High Schools). She made the Fontbonne Hall Academy Honors Programs with a partial freshman scholarship, and also made St. Savious Honors. Her highlight was making Dominican Academy and being asked to take the scholarhship exam (here 1st choice Catholic high school!) MORE GREAT news! Alexandra's TACHS results were excellent! She scored in the top 1% of the nation in the TACHS test! Congrats Alexandra! As for now, we are waiting to hear from Marymount and Sacred Heart, whether Alexandra got the scholarhships!
Congratulations to President Barack Obama, for becoming the 44th President of the United States of America, and the nation's first African American President - YES WE CAN!!! And, congratulations to John McCain, for putting his heart and soul into his campaign, as well. We can only hope that President Obama will lead us out of this economic crisis... Sophia and I love Malia and Sasha, we think they are so cute and stylish! www.barackobama.com Alexandra's school was able to gather in one big classroom and watch the whole Inauguration Ceremony on CNN. She was glad to be able to watch the whole Inauguration (she didn't have any classes.) Hope to see you all soon!
January 10, 2009
We hope that everyone had a very Merry Christmas and a Happy New Year! We spent a great Christmas visiting family in Connecticut and in Brooklyn. Sophia and I got some great gifts for Christmas. Since my laptop broke down and I was in desperate need for a new one for school, I got a new MacBook!!! Sophia and I love the MacBook so much and we have so much fun with PhotoBooth and video chatting! The New Year was nice too and we spent it with family. Sophia and I are very excited because we are expecting to get guinea pigs in a matter of weeks...For now, I am very busy with school and Juilliard and piano. The craziness and busyness never ends! I hear back from my high schools later this week, so wish me luck! Sophia was not feeling well today, with a bad stomach ache, so please hope she feels better. This weekend was really tough for everyone. My beloved Baba, who is 88 years old came down with a 103 fever and was not feeling well at all. We called an ambulance to take her to hospital, and she will be there until possibly tomorrow. Please pray for our Baba! I hop everyone is well; sign the guestbook and I will try to get back to you!
December 18, 2005
Sorry for taking so long to update this site again! I am officially finished with high school testing! I hope all goes well..December had been a very busy month for us all! I had my Xaverian Christmas concert on December 9th...I played in two different band...and most of all, I had a GREAT time. On December 10th, I had my Juilliard solo concert! I played Gavotte from Migon and I am very proud of myself! On December 17th, I had my Juilliard Instrumental Ensemble Concert where my ensemble played The Arrival of the Queen of Sheba! We did spectacular! Sophia has an upcoming dance recital this Sunday, also... We are all very excited about Christmas in my house! The Christmas lists are hanging up, Christmas shopping has begun, we have hung the wreaths and lights and decorations up, we've had the radio station tuned to Christmas Carols 24/7, we've been making Pumpkin Spice Cake and drinking hot cocoa...and we still have yet to get a Christmas tree! Last night, Aunt Sue treated Mom, Sophia and I to tickets to The Nutcracker. The show was incredible! It was great to see the ballet with our Nana and our cousins. Christmas break will start tomorrow and I am very excited! We have made plans to adopt two guinea pigs...since Sophia and I got First Honors. Sophia and I are so excited to pick them up...we will pick them up the week after Christmas. Their names are Hiedi and Ginger. On our animal update, our two fish Charlie and Lola have gone psycho and are constantly running around the tank jumping up for food. Our turtle Chocolate Chip, doesn't seem to like moving and besides occasionally eating, it just sits in the same spot for 3 days. As you can see, we are excited about the guinea pigs...they will actually move and play with us! I posted some picture under the "Pictures" and "Fundraisers" link. I recently camp upon the inspiring story of a young Neuroblastoma angel, named Christi Thomas. To read more about her click here. I will post again before Christmas!
November 25, 2008
Wow! It has been such a long time since my last update! I might as well get started...To start off, Mom and I had to most incredible time in China! Being able to see the Paralympic sporting events, and visit the Bird's Nest and Water Cube was unbelieveable! Mom and I made so many friends in China through the Paralympic Academy, and the trip was truly a rewarding experience! To read part of my online diary about the trip click here. The school year started off great after coming back from China! I was featured in a "welcome home" article in The Brooklyn Eagle local newspaper. To view the article click here. Whoever said that 8th grade would be easy was wrong! I have been very busy this year with various high school entrance exams prep classes. I joined my school's Politics in Action Club, as a member and secretary. I was promoted to Executive Secretary for doing such a great job, so I am very proud of myself. I have been looking at a bunch of different high schools but my heart is set on the Marymount School of New York, or Convent of the Sacred Heart, or Fontbonne Hall Academy. I made it to the semi-finals of the Sacred Heart and Marymount scholarship exams! Schools has been going well for Sophia, too. I have my Juilliard recital coming up soon....December 6th, 2008! I have finished taking my high school SHSAT and TACHS exams. The much anticipated Frankie Loccisano Memorial Foundation HopeFest 2008 was a truly emotional, heartwarming and special night. I enjoyed seeing Frankie's family, because despite the hardships of losing their beloved Frankie, they have focused their energy into the Frankie Loccisano Memorial Foundation, in order to help other children fighting pediatric cancer. I was awarded the "Hope" Award. two incredible men named Matthew Long and Tom Kane were also honored. I encourage you to follow their great work, because their is no doubt these men will change the world. Congrats to Matthew Long, who recently ran the NYC Marathon! I have been home all week, very sick. The doctors told me I have walking pneumonia and bad bronchitis in both my lungs. I have been coughing very badly with a sore throat and a sore back. Nevertheless, I am very excited about Thanksgiving! Mom is cooking and I can almost smell the turkey and stuffing! I would like you all to please say a prayer for my friend Sammy Rotman, who sadly passed away. Although I never met Sammy, her family was always in touch with our family and we will greatly miss her! We miss you, Sammy!
September 1, 2008
Sorry for no sooner updates! So, here is an update of the past two weeks..Sophia and I spent two weeks in Pennsylvania with Baba and Papa while Mom, Dad, Aunt Lisa and Rene came for a week. It was great to spend time with Baba and Papa. We even got to go the Knoebels Amusement Park, see cousins and family, go to church picnics, have sleepovers and more. Sophia and I also found a mother and her five kittens who were living on our property. We couldn' take them home, but...we kept feeding them milk. Then, the kittens disappeared but the mother stayed, so we hope the kitties are okay. After a great time in PA, we all came home. The next day all of us went up to Connecticut to our cousins house for Labor Day weekend. We stayed for the weekend and most of our family on Dad's side was there. We a had a great time in the pool, seeing our cousins, playing with our cousins' dog and we even found a tree swing that we spent hours on...
I was also recently featured in an article in the Brooklyn Eagle about my trip to Beijing. Thank you Tom Kane for writing such a beautiful and inspirational article about me. You truly are a talented writer and such a kind and nice guy! Tom Kane will be honored with me at Frankie Loccisano's Memorial Foundation's First HopeFest Gala in October! Here is the article: Dream of a Lifetime. Thanks Tom Kane!
Now, to the big news of the day. China is only 3 days away and that means less than 72 hours until my feet are on Beijing soil!!! Mom and I have been hurrying to pack everything for China, clothes, and lots of books to read on the plane. I have a nice big book, Twilight to read on the plane ride. I also have a bunch of shirts from Happiness is Camping, Lenny and Joe's, Camp Sunshine, A Step Ahead, BrooklynONEtheater and more. You'll see what those were for in time...I can't wait to go to Beijing and see the Opening Ceremonies. Here's an ironic little fact I wanted to share: who knew that there is a T.G.I Friday's in China? I will update again before we leave on Thursday. Don't forget to check my blog for the journal of my trip! I can't wait. Words simlpy can't express how excited I am!
If you have a t-shirt from your camp, company, newspaper, theater group or restaurant that you would like me to wear in front of the Great Wall, please contact me. This is short notice as I am leaving in 3 days. I will be taking pictures with all different shirts when I visit the Great Wall. Also, please say a prayer for my dear friend Sammy Rotman, who recently discovered that she has a brain tumor and is battling osteosarcoma. Thank you for all the support you have given me!
August 12, 2008
HAPPY 16TH BIRTHDAY HANNAH CROSSLEY!!! Today would have been Hannah Crossley's 16th birthday. Hannah was one of my best friends from the hospital and sadly passed away in April of 2008. Hannah annd I shared rooms inpatient in the hospital on various occasions and we were great friends. We event went to Happiness is Camping together. Hannah was truly a special blessing from God and is greatly missed by my family and I. Please say a prayer for Hannah in Heaven and her family during these rough times. We miss you but know that you are loved! To leave a message for the Crossley Family go to Hannah's web site: www.hannahsjourney.com
August 6, 2008
Hello everyone! I hope summer has been going well for all. Sophia and I recently spent the weekend in Connecticut with out cousins and family. It was great to be able to jump into the pool on a hot day. We are heading back up to Connecticut with Dad later tonight and we are excited. I thought I would give you some update on that. Mom and I finally finished all of the forms and paper and passport and visa info for the trip to China. The process was a little confusing so it is good to have that off our backs! Also, Baba's birthday is coming up and guess how big of a coincidence this is....my beloved Baba will turn 88 on August 8, 2008!!! We plan to give her a nice birthday party. I hope all is well with everyone. I am so excited to watch the Olympics this year...in gymnastics I'm rooting for Shawn Johnson and in swimming Michael Phelps! Let the competition begin! I am looking foward to my trip to Beijing and can hardly wait!!! Also, I will be making a new page on the site to give information and facts on Osteosarcoma, it willl be very informative. Until next time...
July 28, 2008
Hello everyone! Long time, no update! This summer has been really busy for us and I have had little free time to update. Just to walk you through our update...Sophie and I left for Happiness is Camping from June 30-July 7. Camp was awesome - Sophie and my cabins were across from each other so we got to see each other a lot. I signed up for Photography (w. Phia), Pool Sports and Film (w. Phia). We had a great time...there was even an animal show where we got to hold a 6 foot long python! Amazing! I even sported a red wig on July 4th! We left for Switzerland on July 8th!!! The flight was 8 1/2 hours. We had a great time in Switzerland with Mommy, Aunt Lisa and Rene. We visited Zurich, and - what an underestimated city- it was gorgeous! We also visited Lucerne (walked across the famous bridge built in the Middle Ages and the cute shops), Bern (while it was raining, but we saw a live bear on display), Interlacken, Augusta Raurica and Baden. We got to visit the Alps and how gorgeous! The view was incredible and Switzerland is such a beautiful country! We even got to drive to Germany, we were 10 minutes from the border. We were only there for an hour, but Germany was beautiful!!! Switzerland was an incredible trip and we loved every minute of it!!! Thank you Lisa and Rene! We returned home and left for Amputee Camp in Ohio on July 19th. Camp was awesome and I even got to play Wheelchair Football, go fishing and perform skits. I also got to play disc golf for amputees at camp thanks to a great guy named Randy Mecca. Randy is a professional amputee disc golf player. If you are interested in learning about amputee disc golf, visit Randy's site at www.discgames.org Now, we are back home and I am doing summer reading for school and working on History Fair. (Yes, history fair goes into summer.) We are also trying to work out the last minute arrangements for my trip to Beijing in September. I hope everyone is having a great summer and enjoying it. PLease say a prayer for my friend Sammy Rotman, who recently relapsed with Osteosarcoma. Hope all is well and please feel free to sign the guestbook, I love to hear from everyone. Check out news on the Paralympics, also at my blog: www.alexandraslife.edublogs.org !!! Pictures will be posted soon!!!
June 27, 2008
Hello everyone! This is Alexandra, again. Sophia and I have officially finished schpol for the year. I took my Living Environment Regents on Tuesday and I think that I did very well. We are all very excited about summer and the busy one that we have ahead of us! We have been packing for Happiness is Camping. We are leaving for camp on Monday! Summer is already going very fast
June 13, 2008
I would like to take this time to ask those reading to say a prayer for two of my friends who have recently been diagnosed with cancer. Please say a prayer for Drew Taylor, an 8th grader from my school as he embarks on the journey of chemotherapy. Also, please say a prayer for my friend Natalia Harris, as she continues with treatment for the same type of cancer that I had. We will win!!!
June 13, 2008
I recently went for my check-up at MSKCC and saw some old friends and nurses of mine. I had to meet some doctors and have a Chest x-ray and Echocardiogram. Thanks for all of the support! On a happier note, the flights have been booked and...we are going to Switzerland!! Aunt Lisa and Rene have invtied us to visit them in Zurich so we will be flying there for a week this summer!! Yes, I am very excited!!! School has finished for Sophia, so she is officially on summer vacation. I have another week of one-hour review classes at school for the Living Enviornment Regents, and then I am off for the summer. Sophia and I will also be going to Happiness is Camping for a week and are very excited. I will also be attending Amputee Camp in Ohio this summer, as well. It's going to be a fun summer! Until next time...
June 8, 2008
HAPPY 14TH BIRTHDAY MICHAEL!!! This is a birthday greeting for one of my best friends from the hospital, Michael Romano. Michael was such a special and important person in my life. He courageously battled Neuroblastoma for almost 7 years and unfortunately passed away on October 21, 2005. He was 11 years old. We all miss you very much, Michael. We think about you always and you are in our hearts everyday! Please say a prayer for Michael's family one this tough day.
Click Here to donate to the Michael Romano Memorial Alex's Lemonade Stand in Honor of His 14th Birthday
Click Here for Michael's Web Site
May 16, 2008
Hello everyone! I hope you all had a wonderful and blessed Mothers Day! We spent Mothers Day with our family and Baba and Papa. A lot has been going on - including a great deal of homework and projects. Also, Softball Season began and Sophia resumed her position on the Visitation Academy Softball Team! Go Sophia! We have had fun at the softball games. I have also been working hard in school, preparing for my Mock Trial Tournament tomorrow - I am playing an attonrney and yes, I am a little nervous, but even more excited! I finished Juilliard last week after playing in my Spring Clarinet Ensemble Conert!!! I feel sad that I can't go back to Juilliard every Saturday because the year ended but I have next year to look foward to! Also, please continue to pray for Hannah Crossley and her family through this Mothers Day season. On a much happier note, I heard back from the U.S Paralympic Academy about a contest I entered to win a trip to the Beijing, China Paralympics this summer and.....I WON!!! We are sooo excited going to China in September. I can't wait to see China, eat Chinese food, learn a little Chinese and further explore the culture! I was also nominated by my teachers to attend the National Young Leaders State Conference for showing great leadership skills, in Westchester! I will keep you updated on more news as it comes! Please feel free to sign my Guestbook!
April 22, 2008
Today has been a rough day for my family and I. We learned today that my dear friend from the hospital, Hannah Crossley passed away. Many of you know that Hannah was one of my best friends from the hospital - we both enjoyed sharing rooms Inpatient and watching movies together when we were being treated together. From this came a great friendship between us. Hannah and I both went through rough times together; strong through thick and thin. Despite Hannah's relapses in 2005 to present, she never stopped fighting. Hannah is not suffering anymore, but is now at peace and rest with God. Please keep the Crossley family in your prayers. Our hearts go out to Hannah and her family. To leave a message for Hannah and her family, visit her web site www.hannahsjourney.com
Celebrate Hannah Crossley!
January 16, 2007
Merry Christmas & Happy New Year to everyone! This Christmas was awesome!! On Christmas Eve, Baba, Papa, Aunt Lisa and Rene came over for dinner. We also helped Mom put up the stockings and decorate the tree. It was fun and we made some yummy sugar cookies for Santa! Santa treated us great this year! This year I got some great gifts including:
- my first cell phone!
- some clothes from Ralph Lauren & Abercrombie
- some cute gifts & activity sets
- an iHome!
- Julie American Girl Doll
- some clothes & activity sets
- activity sets & gifts
December 11, 2007
Hello overyone! It is me again! Sophia and I can not wait until Christmas....only 14 days away. (Don't worry, we're counting :)) Anyway, among our Christmas lists are an iHome Clock Radio, a pair of pink skiis (imagine who would want those...hint: she is typing), an iPod, some High School Musical games ( at home we are very big fans of HSM!), some Hannah Montana stuff, CD's, DVD's, Wii Nintendo Game System and so on. Like I said, this Christmas I am excited about spending time with my family and friends. It is a nice warm feeling this time of year.We are looking foward to some snow because New York has only had a few inches a week ago. It is sleding time and skiing time. I may attend Amputee Ski Camp again in February and can't wait. The tree will be up soon for the holidays. I am in such a good mood in December. It is the sharing season and Mom's birthday is coming up the 27th. We may even expect a visit from our cousins in Chicago for the New Year! Well, it is time to get out the holiday decorations and celebrate the birth Christ awaiting Advent. Everyone has been keeping up with our Advent calendars. My Juilliard Christmas Recital is also coming up so I have something more to look foward to. I recently spent a day at Sephora with my friends Marion and got a great make-over and brought some lip gloss. It was sooooo much fun! Well, I am home today from school, a little under the weather and not feeling that great. It is a bummer, I know. Signing out with a little remark, "It's that time of year again", or as we put it "It's Hot Cocoa Season Again"
The Christmas carols are playing and it is all overwelming! I love it so much, though. "It's the most happiest season of all...." "Deck the halls with boughs of holly, fa la la la la, la la, la, la, tis the season to be jolly, fa la la la la, la la la la..."
December 3, 2007
Hello everyone! It's Alexandra! I hope everyone had aDe great Halloween and Thanksgiving! I was a Juicy Couture Rocker for Halloween and Sophia was a 1920's flapper. Thanksgiving was fun and we had tons of leftover food. Sophia is continuing her violin lessons and I am truly loving enjoying my clarinet lessons at Juilliard. We got some snow yesterday so Sophia and I went out and swiped some snow off our car. As sophia and I call it it's "Hot Cocoa Season" which we wnjoy with some good chocolate cake! I will keep you updated. For now, please sign the guestbook because I love to hear from you all. Also, read my entry on my speech at the Benefit Gala for Gilda's Club!
October 17, 2007
Hello! October 2nd was Alexandra's 12th birthday and she had a great time. School is going very well and Alexandra joined the Debate Team. She like to put up a good fight! Sophia is taking the violin and will start the cornet in school. Alexandra loves Julliard and had some upcoming recitals. Her class there will be going to see the NY Philharmonic Rectial. Today, Alexandra got out of school early and Nana and Mom took her to get her ears pierced. It hurt a little bit, but she's glad they're pierced and she can wear earrings! Alexandra had her tests done a while ago and EVERYTHING IS OKAY! Her Girl Scout troop is going to see the Legally Blonde on broadway so she's looking foward to that. We'll keep you posted!
September 17, 2007
Hello everyone! Sophie and I have returned to school! We stayed in Connecticut for the first two days of school but we've officially returned! I'm now in 7th grade and little Sophia is in 5th grade, Homework is twice as much this year so I'm overwelmed. The good news is that yesterday I went with Mom to the Julliard orientation and rented out my new clarinet! I'm so nervous and excited at the same time.I'm looking into joining the Skiing Club and I'd love to do Gymnastics. This year I'm in Girl Scouts so far. I'm still working out getting used to new school curriculum. I would like to inform you of a special person I knew, Frankie. who was a senior at Xaverian High School, the same building I go to school in. Frankie's family knew mine and he was treated for Osteosarcoma at MSKCC with me. Frankie also lost his leg above his knee. On a sadder note, Frankie relapsed and sadly passed away on Friday night, Spetmeber 14, 2007. We miss you Fraknie, all our blessings to your family from ours!
August 21, 2007
Hello Everyone! We all got back from Pennsylvania a few days ago. We had a great time going to Dutch Wonderland for the first time, we also visited Knoebels Grove Amusement Park, and went swimming, and visited cousins and family. Tonight Daddy is taking us to an Al Stewart concert in New Jersey so we hope we'll have some fun tonight! We'll keep you posted, but check out the two new slideshows I created in the Multimedia!
August 8, 2007
Hello! The summer has been very busy lately! Phia and I have been having a lot of fun. We went to Happiness is Camping for a week and a half. We swam, cooked, sang some camp songs and made lots of new friends ( Krissy, Cassie, Helena, Melanie, Lorena) Camp was definetely worth it. Soon after, for four days I went down to Atlanta, GA for Amputee Camp. I had a great time swimming, playing tennis, wheelchair rugby, soccer, basketball, bowling and making new friends. I even hung out with kids from Michigan and San Fransisco! Amp Camp was a great experience. Now, back at home, Sophie and I have been taking some tennis lessons twice a week with one of my teachers and we're getting a good work out. We've been spending time with Grandma and Grandpa, too. Sophie and I have been enjoying the summer and playing at the park. Phia and I also were shocked last night as our own Bay Ridge experienced a tornado. All of the streets around us were closed off, trees were all over the sidewalks broken, windows of the stores and churched were broken in so it has been rough to get around the nieghborhood along with many power outages and transit limitations. For now, Sophia and I are packing for a week in PA and we're very excited for High School Musical 2 to come out 8/14! Keep you updated, the summer's going by so fast!
June 15, 2007
Hello everyone! I'm very sorry I haven't updated sooner! I've been studying for finals this week and then Monday I get out of school! I'm very excited, as I'm working on a project on World War I with a friend and making the best of the last days of 6th grade. I've had a cold all week so I may visit the doctor next week. Sophia's birthday was the 5th so we went out to eat.HAPPY 10TH BIRTHDAY SOPHIE! We also all participated in MSKCC'S Rock and Run on the River Relay. We did a 5K walk for cancer research and had a great day! We also celebrated Michael's 13th birthday! HAPPY 13TH BIRTHDAY! I will keep you updated. As you can see, I've been updating the website. Talk to you soon! P.S The guestbook is being fixed so just hold off the comments for a while...
March 16, 2007
I'm very sorry that I haven't spoken or updated in a while. I got back from ski camp and it was amazing. I got a Gold medal!! I am working on a mini history fair project in school and studying French and Latin lately. Things have been very busy. I had no school today because it was Spirit Day and last week in school I celebrated "pi" Day (the mathematical term. pi= 3.14 & it was 3/14/07) On Sunday I will be performing in the St.Patricks Day Parade with the Xaverian High School Concert Band! I am very excited!! My leg has not been fitting great or staying on lately, so my mom, dad and I all went to get it fixed today. I also had my first green bagel today! Well I will update more soon......
February 3, 2007
Sorry, everyone- I haven't updated in a while but I've been very busy. I finished all my midterms and I passed them all and did very well on my report card. As I said in January, I have a lymphnoid in my groin that everyone was worried about but the doctor said it was just an infection. Recently, my ear has been bothering me, and I've had some shortness of breath and a sore throat. I went to the doctor and he said that I have a very bad ear infection in my right ear. So, right now I have to take some pills and motrin until Tuesday.
On a happier note, I am leaving on Monday morning for ski camp at Camelback with other amputees. It shold be a lot of fun and I am looking foward to making new friends who are amputees just like me. My parets are sending me alone this year, so I'm a bit nervous but I shoudl be fine. Mom, Dad and Sophia are coming to stay on Thursday to see my skiing race and I'm really excited. I'm not looking foward to all of my homework I'll have to do but I'm hopeful that I'll manage it!I'll update soon when I get back from camp and hopefully I'll have some new sking pics!!!!
January 11, 2007
Hello!! It's 2007! We wish everyone a Happy, Healthy New Year!!! Alexandra has been studying for her upcoming Midterms and she's been playing her piano and clarinet. She recently was in a concert and she was amazing! Sophia is taking her 4th Grade State ELA's and so we're all very nervous for her!! Diane recently spotted a "rash" on Alexandra's leg and so we're going to the hospital today to check it out. We'll update soon!!
December 6, 2006
Hello! I have been very busy lately so I haven't had the chance to update. I have recently joined the school newspaper! I am so excited! I am in charge of an article called "Spotlight on a Student" and an anonymous Advice Column (oh yeah thats the best :) I have a band concert next Friday (clarinet) so I have been practicing for that. I got my report card back from school and I have a 90.5 trimester average! I am very proud of myself. I have also been asked to be the "manager" of my school's track team - that could be interesting! I will update soon but for now I've got to go!
November 24, 2006
Hello everyone! I hope you have a Happy Thanksgiving!! Enjoy the holiday!! I have been busy in school and am working on lots of school projects!! I hope to speak to everyone soon and I'll update more in the future!
October 19, 2006
Hello, everyone. I (Alexandra) have recently come down with a bad cough, and I've been getting headaches, nauseau and stomach aches. Due to this, I've been at home since Wednesday. I am starting to feel a little bit better, but I am still going to visit the doctor. Please pray that I feel better. I will try to go to school tomorrow and I will present my speech on my running for Class President. Wish me good luck! I will update soon on Halloween!!!!
October 13, 2006
Hi everyone! I'm sorry I haven't updated in such a long time!!! Sophia has recently started the violin and she is doing awesome! She loves it and I'm very proud of her! I'm in the Genesis band and I am still playing the clarinet. Since I've been playing for a long time I might be moved up to the Advanced Band Level!Isn't that wonderful! I've been doing very well in school and I have lots of new friends. I am going to be a Pink Ladie with my Mom and Sophia for Halloween. I'm so excited and anxious about trick-or-treating. Hey, you're never to old for Halloween. Please say a prayer for the Romano family as Michael's one year memory day (Oct.21) approaches. I hope everyone has a nice holiday and Happy Halloween!
September 17, 2006
Hello, everyone, this is Alexandra!! I started School in Genesis @ Xaverian on September 7th and I absolutely, LOVE it!! I am really enjoying school and i have made new friends and I like my teachers. I have been taking Latin and surprisingly I like it a lot. I also really like Science and World History. We're studying Egypt in History and I find it very fascinating. I take the school bus to school and thank God-- I get picked up at 7:45!! What a relief, I used to get picked up at 6:30 in the morning! A few days ago, Sophia sprained her ankle, so she has been having pain in her foot but the X-rays say that there is no serious damage. Also, on September 16th,my tutor and very good friend from the hospital, Marion took me out to lunch and to a theater show, Hairspray. I loved the show and was bopping in my seat to the music. The music was awesome!! Also, Haylie Duff (Hilary Duff's sister) was in the show and right in the middle of the show, she waved at me personally! I freaked out and it made my day! After, the show, Marion took me to the stage door and I got everybody's autograph!! When Haylie Duff came out the door, she went straight to me first and gave me an autograph. I told her she was amazing and she said so was I. She told me that she was so nervous up on stage- it was her first time on Broadway and she did wonderful! Afterwards, I got a picture with her and I was sooo Happy and excited!! I had met HAYLIE DUFF!!!!! (and she talked and had a converstaion with me!!! :)) Well, I will put up my pictures soon enough and my picture with Haylie Duff!
Happy and Healthy,
aLeXaNdRa!!! <33
July 2006
Hello everyone!
Its summer and I am having the time of my life. I went to sleepaway camp at Happiness Is Camping, a camp for children with cancer.Then I went to Atlanta, Georgia for a sleepaway camp for amputees.I went swimming,canoeing,and even went to a dance!!!!Talk about fun! I also went to my house in Pennsylvania. I finally got to relax, use my new digital camera and see some family.(Pictures will be posted soon.)I saw some family,played with cousins, went swimming,and even went to Knoebels Amusement Park! I am now in Connecticut with my cousins and tomorrow I am off to Maine for Camp Sunshine, a family camp for kids with cancer. It'll take six hours,with no T.V!!!! (but some lobster and steamers!!!) Keep you updated!!!
Love, Alexandra
June 23rd, 2006
Alexandra has graduated from P.S 176 and is moving on to middle school. The ceremony was very nice and Alexandra got awards for outsanding achievement in: Technology, Math, Band (clarinet), school spirit, excelsior award, best of brooklyn award, writing** and reading. Sophie and we are very proud and all Alexandra. Her grandparents came to her graduation so she was very happy about that.
May 2006
Alexandra and Sophia were in the Norwegian Day festival on the Viking ship float. Alexandra won the annual Scandinavian East Coast Museum Vking Essay contest!! She won a free Norwegian sweater and got to ride on the float in the parade! We're so proud of her achievement. Meanwhile, Sophia has been doing very well in gymnastics and is getting the hang of doing a complete cartwheel so Alexandra is very proud of her. Sophia has been very good helping around the house lately and we're very happy with her.
April 15th, 2006
Today was a rough day for the whole family. It was the day Alexandra lost her leg. She was crying most of the day but she felt good to get her tears out. We're there for you, Alexandra... always.
March 2006
March is here! Alexandra has been so happy. She found out today that she was accepted into Genesis Junior High!!!She took a big test to get in and she did!! She is so happy and excited. It was her #1 choice for a junior high. Alexandra also played her clarinet in a multi-cultural festival with her after-school We are so proud!!! Keep up the good work, Alexandra!!
February 2006
Alexandra went on an amputee skiing trip to Camelback with her Mom for five days. She had been practicing her skiing and says she's really improved. She says the mountains up at Camelback are so beautiful at night and she has made a lot of friends so far. I saw her ski as I was coming to pick her up and she was AMAZING!! Alexandra did great and she even scored a silver medal in a race. We also went sledding down a big hill in the park at home. The girls hit a big bump and went flying in the air but they claimed it was an "awesome feelling in the air - excitement and bewilderment" ???
January 2006
It is some COLD January! Alexandra saya its so cold when she wakes up in the morning for school. The girls love getting bundled up and staying "cozy" (they are really into being cozy!) Alexandra got some good scores on her class tests - a 98!!! We'll keep posting!
December 2005
Christmas! Toys! Toys! Alex and Phia had a wonderful Christmas and loved the toys they got. Alexandra and Sophie helped pick a Christmas tree and enjoyed decorating it. Santa brought walkie-talkies, clothes and a whole lot more. We went to BaBa and PaPa's house for dinner and then got over to Nana's house for more celebration. The girls got to see their cousins from Connecticut and New Jersey amd were so happy! It was a marvelous day for Alexandra!
November 2005
The girls went to grandma's house for Thanksgiving. Alexandra had a wonderful time - especially with all the food! Her cousins from New Jersey came in and she was able to play with them over the holiday. In school, Alexandra has taken her fifth grade city - wide social studies test and she thinks she did well - so we wait for the scores! Keep you updated!
October 21, 2005
Today is a very sad day for all of us. We found out early this morning that one of Alexandra's dearest friends, Michael Romano, lost his 7 year battle with cancer shortly after midnight. Michael and Alexandra met while they were both being treated at Memorial Sloan-Kettering Hospital, and they became instant friends and bosom buddies. Michael fought a long and courageous fight, and his absence will leave a void in all our hearts, especially Alexandra's. Their picture together is on the "Important People" page of this website, and he certainly was one of the most important people in Alexandra's life. He was very special. We send our deepest sympathy and support to his family. The world was a much better place with Michael in it, and we will always remember and miss him.
October 2, 2005
Today is Alexandra's birthday! Happy 10th birthday, Sweetie, and may you have many, many more! We love you - Dad, Mom, Sophia and all your family and friends.
September 2005
We finally got around to posting a few pictures from our trip to Italy. Check 'em out!
August 2005
Recently I visited Italy for my Make-A-Wish trip and I was there for 10 days. We visited Rome, Florence and Venice. I enjoyed Rome very much. I saw the Colisseum and went inside. I also saw St. Peter's Basilica, the Sistine Chapel and Pope Benedict XVI. The best part of Rome was when I received Communion at the Vatican and received a blessing from the priest. My parents were very touched by that. I also enjoyed seeing the Pope. In Florence I got to see the statue of David and some museums. My Nana met us there and finished the trip with us. Florence was full of stores for shopping. While we were in Florence, my Uncle Tom surprised me and came to Italy to finish the trip with us, too! I was very happy about that. In Venice, I got to go on a gondola ride. We passed Marco Polo's house. I really loved St. Mark's Square. It was beautiful at night. Boy, were there a lot of pigeons! Venice was so romantic. I enjpyed being there with my family. This was the ultimate trip - definitely! -Alexandra
May 2005
Alexandra recently had 3 "suspicious" moles removed from her leg and stomach. After a very tense and nerve-wracking two week wait while the biopsy was performed, we received good news: the moles were not cancerous and she is fine. This week she is taking her New York State grade 4 math test, so she's a bit nervous, but she thinks the first day of the testing went pretty well. Two more days of tests to go...
April 2005
Recently, Alexandra auditioned for a talent show at school. They were selecting 30 out of 130 kids to perform in the talent show. She auditioned with a clarinet solo and, amazingly, she made it!! Alexandra is very happy and excited and we all are proud of her. She said she tried out just for fun and being selected was the farthest thing from her mind.
Also, Alexandra was chosen to participate in a speakers' panel to talk about her experiences with Gilda's Club. She and her sister Sophia both attend Gilda's Club each week, a place where people whose lives are affected by cancer go to discuss their experiences .She was very nervous but excited. She addressed a rather large audience and discussed her medical history and how Gilda's Club has helped both her and Sophia to deal with the many issues they face. Of course, her favorite part of the experience was the delicious food after the speech!!
Since Thursday, April 28th was "Bring Your Child to Work Day", Alexandra went to work with Aunt Lisa for the day. Aunt Lisa is a trial attorney and Alexandra was very excited to go to the courthouse and spend quality time with her and to see what it's like to be in a courtroom at an actual trial.
After almost a year of planning, in June, we are leaving for Alexandra's Make-A-Wish trip to Italy. She is EXTREMELY excited about this. We plan to see the sights in Rome, Florence and Venice, an itinerary chosen by Alexandra herself.
We've been very busy and we know you are, too, but please take the time to say a prayer for Alexandra's following friends from the hospital: Nicole, Michael and Robby, who has relapsed, and, of course, for Alexandra. Thanks!
March 2005
We're finally getting around to posting some pictures from Alexandra's trip to Camelback in February. Check out the "pictures" page and take a look......
February 2005
Alexandra is currently at the Camelback Ski Resort, participating in the "adaptive skiing" program that's offered there. She is there along with her Mom and Paddy Rossbach, the President of the Amputee Coalition of America and 11 other children. They arrived yesterday and within 2 hours, Alexandra was "hitting the slopes" along with the other kids! Hopefully, she'll have some pictures to share when she returns on Friday.
December 2004
Alexandra has returned to school on a full time basis as of September 2004. She has adjusted very well to her new routine. The bus picks her up rather early each day, around 6:45am, so she has been getting up much earlier in the morning than she had in the past. She takes adaptive gym class twice a week and has 3 physical therapy sessions each week as well, all geared towards making her more proficient in the use of her prosthetic leg. In the afternoon, the bus brings her to afterschool, where she has been reunited with many of her friends and has made several new ones. She was able to keep up with her schoolwork this past year and a half and continues to do well in the Delta program. In addition to the physical therapy, Alexandra continues to see a therapist to help her deal with the traumatic loss of her leg. She is working very hard to cope with this loss and has been extremely brave.