One More Thing

People have been asking where they can send a check if they can't come to the fundraiser and want to help. There is a bank account where you can send your donation, called We Love Lydia at Easthampton Savings Bank.

Just a Little Info

Hi
This is Lydia. I just wanted to give some general information for onlookers who have not met me and who might be wondering what the fund raiser is all about. My name is Lydia Pepi and I am 13 and I live in Williamsburg with my parents and brother and sister. I am in the 8th grade at the Hilltown Cooperative Charter Public School in Haydenville, Mass. I was diagnosed with non-hodgkins lymphoma just 4 days after school was let out this past June. I spent my summer receiving chemotherapy and trying to adjust to this diagnosis. Now I am waiting for the disease to go away. We are following a children's oncology group (COG) protocol which comes to an end in February, just in time for my 14th birthday. I know that 14 will be a very different year for me and my family. I am counting on this. We are counting on this. Hope to see you at our party at Stone Soup Concrete.

ONWARD

Thursday, 10/16/08, 7:57 AM

NEWS from Nora

Lydia had a PET scan on Monday. We were holding our breaths for a No Evidence of Disease (NED, our new best friend that we have yet to meet) result but that is not for today. However do not despair, there HAS been a decrease. I know we will get there. It is just a question of when. We all just want it gone! This result has no reflection on the ultimate outcome. We are just in a hurry. It really is a process and the result we are after could come at any time.

We met with the radiation doctor. We liked him very much. He was a sharp dresser, purple shirt and tie, and he had a comforting manner. Unlike Grewal, one of the Oncologists who carelessly/stupidly mentions something like cracking open Lydia's chest. Grewal makes Lydia think she is about to die at any moment (too Serious).Talk about bed side manner! The other Onco Docs we LOVE. There are three. Go Matt and Joanna!

So, on we go with all they can offer to get every last misplaced, misbehaving , DNA altered cell.

We start another round of chemotherapy on Monday. It includes the heavy hitter Methotrexate and a spinal tap. That should be the end of those two things!! Hurray!! They have been the worst.

We have a new WE LOVE LYDIA blog. welovelydia.blogspot.com. It is an open blog for those who don't want to bother to jump through the lotsfohelpinghands membership hoops or who have missed the GRAND invitation. It's purpose is to help inform folks that are interested in learning more about Lydia in reference to the upcoming fundraiser. It will enable us to reach a larger community. Thank you Steve Howland.

The fund raiser is set for November 22nd from 6pm-midnight at Stone Soup Concrete 221 Pine Street Florence @ the A & I building. It will include food, music, cash bar. auction and raffle items. There will be a proper invitation coming your way soon.

Thank you Nancy and Scott, Randy Zucco, Gretchen Jennings, Mike Paulsen and Jessica Lapinsky. And oh so many others of you behind the scenes. Like the 30lb lasagna carrying couple, Emily and Michael. And especially Kate Richardson who treated me to a great escape weekend. During which I got to see Adam and Carolyn Hawthorne covered from head to toe with MUD. That and Aidan's juggling brought some levity to my great and heavy heart. As did all the support from Earthspirit community. Thank you.

Kate also delivered to Lydia and to all of us...... 900 cranes. They are amazing and lovely. Don't forget to ask to see them when visiting..... home stretch for the inevitable 1000.

Thanks guys.

Love to all.

Nora edit

PET scan

Hello its Lydia!
I wanted to let everyone know that i had a PET scan done on Monday and the results come back today. There is improvement from last time but not all the Cancer cells are gone yet. I have 4 more cycles left and I'm glad to be able to count them down. Today we talked to our radiation doctor and we very much liked his purple shirt and tie. He told us a little bit of what's ahead so we can be prepared. I'm proud to say that i get to have 3 permanent tattoos for positioning reasons.
Thanks for your loverly Support!!

HELLO

This is a new site. It is an attempt at an open blog to establish a site to add to our fund raising information mailer. It will allow easier access to a larger community. Now those friends interested in attending the fund raiser can update themselves on Lydia's progress without needing an invitation. We will welcome more members on the helping hands website. So, if you are interested just ask.

Half Way

Hello from Nora

to all of you

We are half way through our chemotherapy protocol, 4 down 4 to go. We have ended up back in the hospital this time around which I expected due to the fact that Lydia went to school some this past week and even participated in a ropes course adventure field trip on Thursday. There is so much sickness passing around at this time as everyone returns to the same four walls. I went out for dinner with three others last night, one had sniffles, one had a throat problem and the other had an achy feeling!! Welcome to the change of seasons. We wanted to come to the hospital last night to play games and entertain Lydia but she was not up for the company as neutropenia leaves her feeling poorly. It is becoming somewhat routine and we know what to expect and are learning to roll with it more and more. My community has risen to the occasion beautifully. Josh and Kim took on Adam and Renata overnight and brought them to an apple cider making gathering today. Life stills goes on, fun active life still goes on and on (like art in the forest with Valerianna, thanks girl!) even while here we sit idly strapped to an IV pole in the hospital.

On the flipside, there are a couple of nurses we call family now. They call us family so we call them family right back. Their love and attachment is remarkable. Suzie. Suzie who got up three times during the night to help Lydia. Once she put her pants on, her pants! to help Lydia. All this effort was when she was actually at home in her own bed in her pajamas......supposedly sleeping in preparation for her day shift here at Baystate pedi ward. She was very tired, poor girl, when she arrived to say the least..... DEDICATION.

I am looking toward the future when this can all come to an end. Or, at the very least, I am looking to put some power into my life, our life, during very powerless circumstances. I have been turning to thoughts about how to build my girl back up from this very toxic form of cure that she has been enduring. We have been reading (thankfully Adam reads things cover to cover, has amazing retention and loves to cook) and researching immune system boosting, detoxification treatments, dietary changes and complimentary therapies. Alternative treatments are rarely covered by health insurance. We are in the process of applying for pediatric cancer relief and catastrophic illness relief as offered by D'amour Cancer Center social workers, relief which may result in $100 a month. Help from our community toward some of these restorative treatments would be a godsend.

I have been approached by several community members regarding a fund and/or fund raiser. I am writing in an effort to funnel some of this energy and interest into action. There has been some discussion of a fund raiser to be held at Art & Industry/Stone Soup Concrete. Some of the the beginning organizers are Gretchen Jennings, Chris Ciccarello and Mike Paulsen. If you are interested in helping you could contact these folks or try Mike's email mpaulsen@stonesoupconcrete.com

Again and again thanks to each and every one of you, for your thoughts, prayers and actions. I appreciate all you do and please know I do not expect that anyone or everyone give money. However, Love and Prayers are mandatory. Nora