A really awesome update

I have to keep this short because I am at work and have so much to do it's kind of insane. BUT, I had to share some great news with you!

It looks like Ylaria has responded well to the chemo. She is out of the hospital now and back at the Ronald McDonald House. The doctors still have to scan again to see what exactly is going on with the disease, but she is up and walking with the help of a walker and is no longer complaining of constant leg pain. I have to be honest, I don't really know what this means for her prognosis, but it's been an awesome (and I'll say, miraculous) change from only three weeks ago. For more info, you can visit her website. Thanks so much again for all of your support, I can't tell you how much I appreciate it and how much I love all of you. You are awesome!!

Work is going. We're in our busy season now so I am working a lot. (Can I just say that a 6 day work week is no fun?) Though, I was just told I don't need to come in this Saturday so I am completely excited. I have no idea what I am going to do just yet, but I am trying to think of something!

In one of my last emails, I mentioned Erin's Lanyard project. My mom's school student council (She is a teacher in a middle school) has gotten involved and will be selling lanyards for the rest of the school year to benefit childhood cancer research (specifically, neuroblastoma-- the cancer Erin and Christi had and that Ylaria is currently battling). How awesome is that??? There are also some plans in the works for a bigger event next September. (September is pediatric cancer awareness month). I am making lanyards at home and it is super, super fun. (Well, minus the one time I was finishing one up (ie- tying it up) and ALL of the little clear glass beads fell all over the floor. I was not deterred however, and spent a good hour picking them up and redoing the lanyard. But it's all for a good cause, right? And it taught me patience, not to mention testing my vision. All good.)

And, this is a bit short notice-- I am so sorry, I have been horrible at keeping up with email these days! If you're free tomorrow and want to go to a Happy Hour for a great cause, please see below. (I plan on going so let me know if you can join me! And, no this is not the fundraiser I mentioned in an earlier email. But, you can never have too many happy hours, am I right?) Also, if you want to volunteer or participate in the Walk on Saturday, May 8th, please let me know. I'll be there! :p

Come to Happy Hour at The Turtle Bay (52nd & 2nd Ave) on this Friday, April 30th, from 6-9 pm, to help raise money for "Kids Walk for Kids with Cancer" and support pediatric research at Memorial Sloan Kettering Cancer Center! Enjoy 1/2 priced drinks and food specials 6-9 pm with the purchase of a $10 wristband, and we'll also raffle off several great items -- 100% of wristband and raffle proceeds will be used for research to help kids with cancer. On arrival just tell the host you are there for the Kids Walk or give the name Michelle, and you'll be directed to our area. All are welcome, so please spread the word!!

PS- see www.kidswalkforkidswithcancer.org for all info about the Walk, which is on Saturday, May 8

Today's Top Five

1. I made my very first Erin lanyard. It was soooo fun. My mom and I are planning a trip to the crafts store tomorrow for more supplies. Yay!

2. I cleaned my room. Full out spring cleaning. It feels great to be so organized. And strange as it sounds, I love cleaning.

3. I relaxed. After a very busy, busy week at work, it was nice having a day where I didn't have to set an alarm and I could just do whatever I wanted.

4. I spent time with my family. While we didn't do anything out of this world, I enjoyed talking, catching up, watching "Say Yes to the Dress" and making lanyards together.

5. I woke up!

Weekend Update

My weekend went by way too quickly. (This happens most especially when I have to work on Saturday.) Saturday was a busy, busy day from the moment I woke up. (Can I add here that I wake up to my ipod-- I have one of those nifty ipod radio thingys that you can use as an alarm and I wake up to my favorite song "Bloody Nose" by Earlimart. It makes getting up more fun when your favorite tune is playing.)

For those of you who read my Facebook page, I DID get up at 4:30am (well, it was probably more like 4:45am by the time I stopped hitting snooze...) I ran on the treadmill. It was awesome. I have to say that it really changes why I do things when I put them in the right terms. Running at 4:45am for example. Anyone else would say this is insane (and it very well might be). And when the alarm goes off playing my favorite song, sometimes I just want to shut it off and sleep for another hour. But then I think to my Self, "I am running for Christi." And suddenly, it's nothing at all to get up at 4:45am. Because Christi is there with me and that makes all the difference.

After my run, I got ready for another day at work. (For those of you who may not know, I work for a small academic and social service nonprofit in NYC called the GO Project. During the school year, we run programming on Saturdays-- thus the going to work part. I put together a small bagel and coffee breakfast to thank our volunteer tutors for all of their hard work this year. And, despite the early hour it was a lot of fun getting to talk to them about fun things like Celia Rivenbark (if you have not read her work, you MUST. Her weekly humor column is the best start to my Monday), magazines, living in NYC (Shayla and Angela, we did not talk about the financial part of it, just who lives where.) Jennifer, we also talked about North Carolina because it turns out one of our volunteers is originally from there. And, OF COURSE, I had to be a complete dork and mention OTH. Duh.

After work, I went to donate platelets at MSKCC. I love donating platelets there. When they let me. See, I have this thing with my iron being horrible. (Your iron level needs to be 12.5 in order to be eligible for donation. I can't tell you how many times they've had to tell me I can't donate. If there were an award for most deferred donor, I would totally win. Every year. I am anything if not persistent.) Being a vegetarian-- or quasi as I say, since I do on very rare occasions eat meat and I still eat fish, it's been a little tricky keeping my iron and especially my B12 levels up. But, I am trying. It's a good thing I like broccoli and broccoli rabe and spinach so much! (Popeye would be proud.) Anyway, back to my platelet story. As Angela, can attest, my last donation did not go well. At. All. Basically, I moved my arm and the needle in my arm did something funky and the blood was no longer going where it needed to but pooling in my arm. Gross. Needless to say, I passed out. Embarrassing. So, given my last visit to the MSKCC donor room, I was a little (or a lot) nervous. Fortunately, my iron level just made it coming in at 12.5 and it all went rather well from there.

From the MSKCC donor room, I went up to the pediatric inpatient unit to visit Ylaria. It made my day to see her. She was up and walking with her walker for the first time in nearly a month. She was happy and chatty. She even read one of her school books to me (She is four and reading, how amazing is that?!?!). We watched some Disney movies (Aladdin and Beauty and the Beast. Beauty and the Beast is my favorite solely for the library. I adore that library.) I chatted with Belen, Ylaria's mom. I spent a great 5 hours with them. It was the best way to end my Saturday.

People have asked me why I do "this" (whatever "this" is). Why I visit Ylaria now that the prognosis is so bleak. And my answer is this: They are my family. I've known them since 2007 when they first arrived in NYC shortly after Ylaria was diagnosed. I can't leave now. I won't leave now. You don't get to pick and choose the people you fall in love with. The people that come into your lives. It just happens. They just do. God works magic and your paths cross. Our paths crossed and I've embraced the magic.

If you're reading this, I hope you had an amazing weekend. I hope you filled it with verbs and love and magic. Those are the best days. I know because I've lived them.

(Ylaria with her book. No wonder we're such great friends!)

Kids Cancer Crusade: Get Inspired

I took a Kids Cancer Crusade care package to Ylaria yesterday. After a day of tough therapy and feeling "yucky" it really brought a smile to her face. She looooved opening all of the gifts and deciding which were for her and which she would share with her sisters. It was amazing to see what a little love in a box could do to brighten her spirits. Are you looking for a way to make a sick child smile? Visit http://kidscancercrusade.org/ for more information!

I am in the process of putting together some exciting projects to support Kids Cancer Crusade. Once I have more information, I promise to share. :o)

For now, I leave you with some pictures. Jennifer, thank you so much for all that you do. You've brightened so many dark days with your love.

Lanyards (& Manyards)

So, if you've been following this blog at all lately, you know that I've been a little down (or a lot). But as with most things, what goes down must, at some point, come up. (At least that's my view and I am sticking to it.) I'm on my way up.

I can let myself feel the sadness, but at some point, I have to pick myself back up, dry the tears and DO something. As Vickie would put it, I have to verb. What brought on this need for action, you ask?

It started on Friday. I was sitting in my basement watching TV (and possibly eating chocolate) when my mom came down and said, "Olivia, can I ask you about Erin and her lanyards? I think it would be a great project for my student council." It took me a minute. A long minute. "Erin? How did you hear about her and her lanyards?" I asked. And she replied that she had been on my blog and seen the links on the side and decided to click on Erin's link. I was awed. (I had never talked to my mom about Erin.) I looked at my mom and I said, "That is so strange! Today is exactly one year since Erin passed away and you just happened to be on my blog and to click on her site and read about the Lanyard project." And we both stood there and I swear Erin was in that basement with us. And I couldn't help but smile and laugh. It seemed so very "Erin". I was down and she pushed me back up. It was her own special way of saying, "You need to VERB."

I can be mad at neuroblastoma and pediatric cancer in general. I can be sad at the little lives that are lost and the families that are left hurting. I can allow myself to feel that; it's impossible not to. But in the end, I need to verb. I need to act. Because after all, it is through actions that more awareness will be gained, more funds will be raised, and more lives will be saved.

So, this weekend I'll be making my own lanyards. Vickie, I am going to be starting my own Odd Friday Lanyard group. (Even if it is only one person strong.) If you're reading this in the NYC area and you want to join me, please let me know.

Erin and Christi and Sydney and Ylaria and oh so many, many more deserve to have the world know. It's time to act. To verb. There is no more time to wait.

Thank you.

I wanted to send a quick thank you to all of you who have contacted me lately, sent messages to Ylaria and her family, sent prayers, positive thoughts and love of all kinds. It means so much, so very much.

Some of you have kindly listened as I've cried rivers of tears. You've let me cry, let me text you at 1am, understood when I told you I can't talk about it and that I can't let you hug me because I just cry more. I am sorry I haven't responded to your emails and messages yet. It's been a really rocky two days for me. But I'm doing better today. I was finally able to get some sleep last night which has helped.

Thank you for the love, for the space, for the kind words and for all of the hope you've given me. I'd be so very lost without you.

Thank you.

I love you,
Olivia

There are no words for this.

This isn't going to be a happy post today. I can't apologize for that. My friend, Ylaria, has been given 2 months to live and I have to be honest, the news has broken me a little. Not completely, but enough.

I am not new to the cancer world. I am not naive to the statistics. I knew she wasn't doing well, but when I heard the news today, I fell apart. Completely. After a good cry, I picked myself back up, but it's been hard. I've been trying to sleep and I can't. So I'm writing. I can't promise this will make sense, but writing helps. So, here I am.

I'm not even sure what to write about.

What can I say?

There's nothing to say.

I could try to tell you what Ylaria means to me. She's my sunshine, my little best friend, my Dora band aid buddy. You can't put a person into words and do them justice. Ylaria is so many things. Words don't exist for all that she is. All that she means to me. Can you picture a world without sunshine? I can't. And today, someone told me a piece of light would be leaving soon.

So, I'm a little broken. A little lost. But, I am hanging on. Because tomorrow I'm going to visit Ylaria and even though she can no longer walk, she has life like few I know. She'll bring the giggles and I'll bring the band aids. The darkness won't be here very long. Ylaria is the sunshine, after all.

I love you,

Olivia

PS- Please leave a message of support for Ylaria and her family, if you can. They could use the love.

http://www.caringbridge.org/visit/ylaria