Holiday Celebrations

I hope you all had a good thing for yourselves this season. We were together and having fun here. We had a big blow out Solstice gathering on South Street rather than the usual up in Plainfield. Ice and snow scared some of us flatlanders from the up hill climb!! The venue was swapped TWO hours before the start of the festivities thanks to crazy Kate. It was a birthday bash for Me, too. We had our usual traditions, food, drink (Mo's mead!!), friends, fire and an evergreen spiral. Many were invited and all were welcome. My girls were thrilled to have the party here. It hasn't happened here for 7 years. The timing could not have been more perfect. Thanks for that wild transition!

Christmas Day was pleasant, especially the sledding. Our traditional lengthy hike was usurped by the thrill of a rush ride. We had a group running down the nearby water tower slope. Lydia is neutropenic but feeling OK. She ran the slope many times and was happy and free spirited. It is wonderful to see her as an average, everyday, happy child, covered in snow.

Our annual Christmas dinner party in Amherst was fabulous. We were especially pleased to see our friend all the way from Scotland. We were happily able to inform him that Adam was now a Highland Piper!! For those who may not know Adam, he is 16 and quite musical, adding bagpipes to his concertina, mandolin and penny whistle repertoire. He is on to uilleann pipes as well.
Juiming is a somewhat new addition for us and the conversation of agriculture in China was exciting. Ayn (a host family member) and Juiming were married in May and they both recently visited his childhood home of Bejing a month or so ago. We always end the evening with a game of Rumicube. Something new was added, a banana?? game, which I loved. It was a crossword puzzle group activity and very good. All the while a European economic discussion ensued.

Thank you to all those who graced us with their spirit and joy and made this holiday fantastic. I could not do this without all your love.

However, the holidays continue on with Morris dancing in the streets. We are gathering with several teams. Maybe you will see us in Noho on New Years eve or at the local Pub sing.
Be well and please prosper.
Love Nora

Number 7

Lydia started her seventh round of chemotherapy yesterday. As we near the end (one more to go) it gets easier. This time she has only two days of clinic visits. No hospital stay. Instead, she has to have home infusions, an IV at home over night, humming, vibrating and generally causing sleeplessness. We miss our Baystate nurses. But, home is definitely best.
Lydia has decided to stay home during the last few months of treatment. Jumping in and out of school has been impossible. Homeschooling is not new to us. It feels right for now.
Happy Soltice and all other family traditions!
Love from all to all.

4 pages of PARTY PHOTOS

Party Down

The PARTY was fantastic. We had a BLAST.
The auction items and display were fabulous. It looked like an upscale gallery with artwork and vacation rentals we all wanted to walk off with. Thanks to all the artists, property owners, gift givers and the mead maker. There was something for everyone, a scarf woven from bamboo fibers and an inlaid table top made by Kelly of Stone Soup Concrete embellished with a beautiful base of legs and drawers by Carl Schlerman of Essence Woodworks.
The food was delicious. Thank you for the donations from home and all establishments.
The venue was unusual. Many were feeling as though we were in a New York City loft. We believed for a moment that we were the ones to rub elbows with, the ones to talk to and those you will want to talk about. The party of the year?
The music was fantastic. We danced and danced and then danced some more. Lydia and I were on top of the bar at one point........ maybe the piece de resistance of the evening........Lydia whispers to me "I thought we were unsure that we wanted to be the center of attention" too late for that! Thank you musicians! all twenty-one of you. I can't wait to follow you all to other dance venues.

Friends were everywhere. I felt as though I was hit by a truck! Mike Paulsen (owner of Stone Soup Concrete) says "Yeah, we were hit by the LOVE TRUCK!" Many said the heart of the party was tangible. People were there out of love not duty.
Our psychotherapists were there! Lydia's nurses were there! My high school friends were there!
Half of Williamsburg was there as well as half the Charter school.

It was an amazing experience and I am incredibly grateful to each and everyone of you. Our community is an amazing thing and I feel in the end we all benefit from this outpouring. We learn what we are capable of when push comes to shove.

For now this is truly a Thanks Giving message. Thank you all for giving of your hearts and yourselves..... all 300+ of you. The turnout was phenomenal!

I will post photos when available and the total earnings. It was over $10,000. AMAZING.

Please comment on your take on the scene. It has been fun to hear all the feelings.....like...."let's do this every month" (Ok, but just not in my name) except for the THE DISEASE FREE celebration. Hell, Yeah!

Love to all, Nora

bank address

Easthampton Savings Bank
PO Box 351
Easthampton, MA 01027-0351

2 left

It makes me really happy to be able to say that i only have two more rounds left! Then soon i can say one!

Chemotherapy

From Nora and family

Lydia starts chemo again tomorrow, Monday the 17th, at Baystate for the week. It is her sixth round and she has eight in total. Thankfully we are closing in on completion.

We are also getting very close to the "PARTY". It is both exciting and difficult. We are so very fortunate to have so much support but it really is the last thing anyone would really wish upon themselves. It will be both lovely and overwhelming to see all of your loving faces coming from both near and far. We must all have fun and dance up a storm. Maybe even forget about the cause for a few moments. Regardless of the emotional piece, I thank all of you for all the outpouring of love and support, over and over. Thank you, Thank you. Nora Kelleher

Want to help the Kelleher/Pepi Family but can't make it to the Big Event?

Easthampton Savings Bank has a special account for
donations for Lydia.
Make checks out to "We Love Lydia" and mail
to drop off at ESB.

WAYS YOU CAN HELP FOR THIS EVENT!

~Show up on November 22nd and bring all your friends!

~Volunteer to help with this event:
1)Donate an item for the silent auction. We are looking for rental
properties, art work, services or anything else you
think would be desirable to people Drop off is at The Meekins Library
in Williamsburg or at 16 Bright Street in Northampton.
Call Gretchen at 585-9163 or email at gertbj@yahoo.com for more information.

2)Volunteer to bring finger food , snacks or sweets to Lydia's Big
Party Event. Call Jessica at 586-3348 or jrlapinski@comcast.net.

3)Volunteer to help:
~Bartend at the event
~Set up in the afternoon
~Clean-up the next morning
~Help with the auction

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