Vampire Weekend Concert

Happy Beltane
from Nora

If you were not in attendance I believe you could not possibly imagine the intensity of the occasion. It was palpable. Several of our friends and family in attendance were saying how they were amazed yet again by our community and overwhelmed that they were witness to something they will never ever forget.
The day was a very special one. It feels like a dream.... How can life be so extreme? At my fingertips I feel gold, fairy dust or some such magic or I feel a curse. Can I have it both ways? For now.... may it only be magic! Greg the stage man who has worked the rock star scene for years was commenting to me how he felt in his mind I was something unreal to be reckoned with to have pulled something of this magnitude off. It is a testament to those around me surely not me: Joe's, the band member's DAD, thoughtful and caring heart, Anne a WHIRLWIND of a girl with as big of a heart, Jordy the stage show master MIND, ENERGETIC rock stars jumping up and down on stage, GIVING and hardworking volunteers and lots and lots of young dancing, singing, college students. This all made for quite a day, many many weeks worth of work coming to a moment, a 2 ½ hour concert.

Watching from start to finish the goings on behind the scene of a concert was exciting. Myself, Lydia, Adam and several of his friends ---- Simon Rackenberg-Loisel, Aidan Talbot and Shelby Howland participated in stage set up. It took over three hours of loading in of massive amounts of sound and light equipment. Dan Richardson was at the helm of sound! And, it was a monumental task lasting 12 hours or more. The SOUND was perfect.

Lydia had first choice of seats in an empty house for herself and all her friends. That was a hard decision. May all her decisions be so hard!

The house was full or very close to full and the crowd was highly energized. Not one person sat through that show. All were on their feet, dancing and singing. I noticed that most of the young men/boys in the crowd knew ever word to every song! It was THEIR band.
The band members are in their mid twenties and the crowd was very young, also. Most of them wanted to purchase the VW t-shirts right off our backs. Some of my volunteers just pulled off their shirts and handed them over willingly. I wish VW had t-shirts for sale that night.

The band was of course generous but incredibly gracious, too. We were able to get autographs, photos and visit with them a little. They are sweet and adorable. Any parent would be proud to be able to attest to a job well done.

The friends that came out to usher and bounce were amazing and the numbers were great. I want to thank all of you for volunteering yet again for Lydia. You all are a true testament to LOVE.
I think most of you had a fantastic time. The music really was a lot of fun an the occasion unparalleled. I know I could not stop dancing. I hope you all had a great time.

The let down too was palpable. Lydia was concerned about how all else will surely pale. We have to pick ourselves up and join in the daily grind of normalcy however pale it may certainly be. And, be oh so thankful that our world is filled with miracles and lovely people. And, not just 8th grade and MCAS and the like!!!!! Maybe we will follow VW on tour somewhere nearby!
We surely will be able to have our week long paddle THIS summer. We hope to kayak along the Maine Island Coastal Trail in July. We have been waiting too long. This summer will be the best of all summers. That is a promise.

Today she again is under the knife. I hate thinking and her experiencing anesthesia and more scars. Hopefully this will be THE last of the last. She is having her sub dermal port-a-cath surgically
removed, no more chemotherapy therefor no more catheter!!!! GET IT?

Happy Beltane
Nora

Lydia's Biopsy Proves She is Disease Free

Dear family and friends,

The word today after 30 days of consulting with Columbia Presbyterian Hospital is No Evidence of Disease (NED). Our conventional doctor, Dr Cairo, suspected this would be the result but wanted proof. (Lydia and Nora's energy healer knew she was disease free a month ago. She's the one that detected a problem in Lydia's chest prior to any hospital tests and diagnoses) Dr. Cairo says that Petscans (the basis of our "almost good" news one month ago) are not always definitive. He says that this biopsy, however, IS definitive. In the 41 cases of Primary Mediastinal B-cell lymphoma he has followed, there has yet to be a case where a negative biopsy missed some residual disease. We will monitor Lydia's condition with a CTscan in 3 months. Dr. Cairo says the chances of a relapse are about 1 in 100.

Aside from some continued and concerted efforts to rehab Lydia's organs through alternative therapies and nutrition, we can now celebrate the reality of a return to the joys of normal life. Lydia's already planning on going back to school tomorrow. And going to the summer camp she was prevented from participating in last summer.

Nora will seek full-time work rather than only part-time, per diem options. I'll go back to social change commitments and house/farm projects which have been on the back burner for a long time. Renata will finally get more time with Mom. Adam will enjoy the relief of a black cloud being lifted from his family's future and have us all more involved in his farming plans.

This is a success story that speaks certainly to the courage, love and determination of Lydia and Nora but also - very powerfully - to the faith, generosity and unselfishness of our friends, family and community. We will do our best to be there for each of you - should the need arise.

Much love and gratitude to you all - And to the great, whimsical Spirits that seem to come and go out of our lives unpredictably.

John, for the family

Stay tuned for the celebration bash!

Vampire Weekend

Loud and FUN music for all who will

Now is the time to purchase tickets to our big blow out Vampire Weekend concert if you want to join in all the fun. Tickets are going fast! Smith College has already purchased 400 of them.

The event is Wednesday, April 22 @ 8 pm

at John M Greene Hall, Smith College, Northampton

TICKET SALES: Northampton Box Office

413-586-8686

800-THE-TICK

NBOTICKETS.COM

Thanks

Nora

14

Lydia turned 14.

We said goodbye to 13.

Thirteen has gotten a bad rep throughout the years.

We just joined in deeply with that rep. Thirteen is part of the underworld. A thing of the past way back in the deep, dark, recesses.

We are on to something BIG oh so very big. Just You wait and see.

We celebrated in NYC. First, with a botched journey to Columbia Presbyterian. The appointment never materialized so we head back today!!!

But there is more.... we went to a drag show for dinner and then to Momma Mia on Broadway. We visited with friends and family while seeing the sights in NYC. It was a great start to a new year for Lydia.

Lydia is still homeschooling. We are working on the great discovery of foods and herbs. We have been making juices and learning about macrobiotics and alkaline foods. We are growing wheat grass. All the while talking to several doctors, many doctors, too many doctors.

Make-a-Wish is still in the works. She wants a retreat for healing. We hope to hear soon. We are looking at a place with HOT SPRINGS! Sounds, fun huh?

Spring and the planting of peas and spinach is oh so close we can feel it. We have large bags (Adam's) of seeds and very small packets of seeds surrounding us. And we are chomping at the bit to get out there. We saw ground yesterday only to have it disappear. We are close and it feels great, New beginnings all around.

Nora

NOW

No one could possibly imagine how I feel that has not passed this way.
I am in shock and have to try to return to the common and mundane.
It seems forever that I have been in crisis.
We all have a great transition to make.
Lydia and I have looked at each other dumbfounded, following the tears of joy. And the tears of relief from a very difficult battle we faced and from the will and strength we had to garner. She said to me "well we could go to the hospital every other week just for fun!!" That is all we have known for eight months. She of course has come to her senses and claims to never, ever be willing to enter a hospital again. But still every morning her question "What about today?"
I have made my life solely about her. She is at my side 99% of the time. When we are apart for a few hours we miss each other. It has been like a return to that bond you feel as a new mother, a nursing couple. She is always on my mind and when I am without her I feel an anxiety. I know that it will lessen over time, of course it will. But the trauma remains and I trust it will find its way to calm.

We have a book entitled Hope Begins in the Dark, 50 Lyphoma Survirors tell their life stories (Given to us soon after diagnosis by a very astute family member). One survivor reports about the aftermath. He states how everyone believes you return back to "normal." Normal has a new meaning to a cancer survivor and their family. This particular writer is angry. Angry at the world. Angry that everyone thinks there is a great lesson to be learned. That so many survivors claim that cancer is the best thing that ever happened to them. He recoils, and claims, damnit, no. It is part of the process of grieving the life we once knew and the body that has let us down. But, I pray I will, we will one day be able to say there is a highly valued lesson, no hefty residual anger. I truly do. For now, I can not say.
I adjust, we adjust in time.

The writer goes on to say " I try to do one thing every day that scares me, go out and take risks. Life is too short to play it safe you might miss something. Live in the moment and do not take it all so seriously." A Good Lesson? I think so?

Lydia will return to school? How? How has this affected this teen? How will she understand her peers and their smaller worlds. Her's has grown rapidly, more rapidly than anyone would wish.
Tears come to our eyes in relief. She was meant for a great many things. She will accomplish a great many things, things like laughing, smiling, dancing and joy. This is what we wish for Lydia.
And, for all.

Thank you for all your heart felt words and warmth. Thanks to all those who found me at the bank or market or bakery or library in tears and gave me all your love and support. You all have been truly amazing.

Mike says we need a CANCER FREE PARTY? Maybe so? for Now I am at rest.

Free, Free set us free

Pet scan negative
Lydia is cancer FREE

PINCH ME! happy??? healthy?????

Life is extreme. No middle of the road to be found here.

Make A Wish Foundation, Looming and Crushing Pet Scans and, and, and Vampire Weekend!

This has been Lydia's and my life in a nut shell.

What do you want Lydia? A rafting trip down the Colorado river? A Napa Valley Spa week? San Fransisco and the Redwood forest? I think this she gets to choose!!!

Can she choose how the pet scan turns out?

Can we bear the wait for the life altering, miracle, controlling, crushing, @#$%@# news? No! It is really, really hard. So we keep our friends close around us. I can not leave her alone.

But the real piece de resistance (this time it is not the bar top dance). We have an amazing hot band, new on the scene, coming to play for us in Northampton. We are still working out the details with Jordi Herold, the big Northampton area music promoter dude, and Vampire Weekend!!! Vampire Weekend have been heard in the soundtracks of block buster films and Gossip Girl and Grey's Anatomy to name a few. They are BIG!! Check them out on the net and get ready.

So, pinch me. Lydia needs more than a pinch as it is hard for her to believe all of this through her disillusioned eyes.

I know it will.......It will be so much fun. I can see her now in the front row with all her friends. The date is not set as we are working out the venue, etc. But there has been a lot of interest even from the Mullin Center.

Last but most certainly not least......this is of the Utmost Importance:

Pray for Lydia in what ever way that takes form for you. She has her test next Monday 2/9/09, a very, very fateful day.

We witches will gather soon in the moonlight up in the hills to bring in all the light and energy we can muster for my child.

Please help in your private way. I am so proud of my community's Wishful ways. I take not one of your thoughts or deeds lightly and not ever for granted. Thank you, again and again.

Peace and abundance to you all.

Thank you all so much for you love support and your outstretched arms in embrace. Lydia and I know we are deeply held in your love. Your gifts and actions have spoken volumes:

Penny's pies!

Rachel's turmeric leaves all the way from Peurto RIco! Yes, hand delivered within days of harvest!!

Hand written cards from family and friends from Cape Cod to Maine.

Earth Spirit's warm and generous welcoming over and over to Adam, Lydia and myself.

A new Morris team with four other 8th graders!.

Curry for all

A spontaneous four mile walk

Thanks for dragging me out kicking and screaming to ski

a spa treatment just for me

a scrabble game or two.

knitting by the fire with friends

games night

MassMoCA

an afternoon lunch with a friend

Smith Athletic department giving Lydia free membership

Massages

plant spirit medicine

Acupuncture and Yoga

Weaving lessons

Magic lessons

Tarot reading

Companionship for Lydia when unable to function with a friend who feels the very same way. What a gift disguised as horrible misfortune!

the list goes on and on

To all of you who know just what to say and do,

We have abundance. Right here right now. Take a look. edit

endings

We missed having spinal taps so much so we just had to come back to the hospital one last time just to get one in!!!!

In like a lion out like a lamb? Is that March or a cancer protocol? It should have been lamb-like as the chemotherapy protocol lessened dramatically but we got a lion, a rather ferocious lion. Lydia ended up with a high fever including hallucinations. Boy was that fun!! Really a mother's dream come true. She should be well versed in highs and lows long before her time experimenting with street drugs. She has run the gamut with the backing of the good ole' AMA. The cocktail soup they recommend could make anyone delusional.

With a fever of 103, head and neck pain of course they all jumped to meningitis. So, tests, cultures and antibiotics were ordered. They actually wanted to tap her without anesthesia in the middle of the night. I had to fight them all back. It got a little dicey here. But, I wouldn't back down. All the tests came back negative. I knew they would.

Dare I say we are done with chemo for now and out the hospital door? I never want to see another light blue wall.

So can we just get on to the happy healthy part of life we remember that it can offer?

Thank you

Lydia is now happily running on a treadmill.
Thank you all for your willing generosity.
Nora

call for help

I am asking all of you out there: Does anyone or anyone you know have a treadmill that Lydia could borrow for the next few months. We can transport it. She needs help getting reconditioned. We will go to a gym but home would be easiest. She has a goal of playing a team sport again this spring.

Also, here's another and a rather BIG ONE...Does anyone know someone living in Houston, Texas that could possibly put Lydia and I up for 2 weeks? There is a clinic there we are very interested in and may head there soon. If so, would you inquire as to whether they would tolerate guests for a time.

We have yet to determine when/if we would head to Houston but it could be in the next few weeks. It may in fact depend on another fund raiser we are cooking up. One of a very different sort. We are looking at hosting a new and very popular rock band out here in these parts. We will keep you posted. This fund raiser is not directed at my community, per se. YOU all have given so generously. This would interest the high school/college population.

Sound the drum....Next Monday starts our last chemotherapy. Welcome the return of HAIR, yes beautiful HAIR and eye brows and eye lashes.

Lydia used to complain about her very thick, unruly and unmanageable hair. She has learned a thing or two about that through all she has been through. Although, that may be the least of her lessons. And we all have learned that her hair is not in fact her best physical feature. It is definitely her smile!! It is far more visible without her massive head of hair drawing so much attention. When she had hair, everyone when first introduced would invariably comment on her beautiful hair followed by her tangible self possession. Nonetheless, her hair WAS big.

And, will one day be again.

Anyway, enough of that. Health first. Beauty is now an afterthought, 13 or not.

Love to all this very New Year. May it truly be new for Lydia. Because WE LOVE LYDIA.

Nora edit