Our Day at the Classic and Crazy Car Show Fundraiser

Last Saturday we attended our very first Classic (and Crazy) Car Show at Stony Hill Baptist Church, as a fundraiser for the Seneri family, whose son Paxton battled medullablastoma for 11 months. Our church, once again, stepped up and stood in the gap for a family deeply affected by cancer. (How well we remember the outpouring of love we felt at Standing in the Gap for Ernie Baker)

It was a beautiful Fall day and there were cars galore...every shape and size, in pristine condition, on display and hoping for our votes. How fitting that even the little ones got involved!

Car owners paid an entry fee, attendees bought ballots for voting, raffles were held, hot dogs were sold, and a silent auction took place for items from tools to floral arrangements. A live auction was held  for a handmade Hungary Catepillar quilt. Fight Like PAXTON, a non-profit created to benefit other families battling childhood cancers, was accepting donations and selling t-shirts. It was a glorious day where everyone came alongside the Seneris and celebrated the life and legacy of Paxton. From race cars to VW Bugs and Corvettes, these cars were gorgeous!

Mom's favorite, a Ford like the one she road around in as a little girl.

This Jeep was the big winner for the day!

Amidst all the NC State red, we had to love this Carolina blue!

EZ thoroughly enjoyed taking little grandson Samuel around to see all the "beep beeps".

Mom was very excited when her raffle number was called and she took home a brand new Vizio 19" HDTV!

It was such a joy to be a part of something we know, from personal experience, will benefit and bless the Seneri family. We are also very grateful to be part of a church body that loves and cares for others.

Donuts with the Dewdrops!

Last Friday, Mom treated us to Krispy Kreme donuts, a North Carolina tradition. Every once in a while you just have to splurge and have a little donut party! The Dews came over at 9:00 in their pajamas (it's so wonderful to live next door), and we all enjoyed coffee or hot chocolate, and best of all...DONUTS! They were grabbed up before I thought of snapping a quick picture of them in the box, but I think you can see that we thought they were mighty good. From Pumpkin Spice to Bavarian Creme, we love KK. Thanks Gigi!

(Don't you just love Nathan with no shirt on? His black shorts are now his pjs so he can be just like Daddy...luckily he is warm blooded!)

IMF Raleigh-Durham Regional Community Workshop at UNC

On Sunday, October 30th I was able to attend my second International Myeloma Foundation (IMF) Regional Workshop. It was held at UNC's beautiful Rizzo Conference Center at Kenan-Flagler Business School in Chapel Hill from 8:30-2:30.

Unfortunately due to his inability to sit, EZ could not join me for this VERY informative and helpful workshop. The IMF does a top notch job in choosing a venue, providing delicious snacks and meals, bringing in top professionals in the the world of Multiple Myeloma, and giving us access to new materials. I know Ernie would have loved to 'sit' under the teaching of  Dr. Robert Kyle from the Mayo Clinic and Dr. Christina Gasparetto from Duke (his oncologist!).

What a distinguished man Dr. Kyle is, with the kind of calm, clear voice you could listen to forever. He has the rare ability to teach very difficult, scientific concepts in a way that a novice can somewhat understand. As he taught "Myeloma 101" and "Options at Relapse" I found myself writing furiously so as not to miss a word he said! 

In addition to discussing transplant eligibility, classification of Active MM, survival rates, and response to treatment, here are a few facts shared by Dr. Kyle:

1. The incidence of MM is 4/100,000 in Caucasians and 8/100,000 in African-Americans. Surprising...
2. There is usually a price to pay for treatment in the form of adverse events such as neutropenia, anemia, GI problems, fatigue, pneumonia, and peripheral sensory neuropathy. One patient suffering from PN put it this way..."I'd rather be here with numb feet than not!" Very true!
3.  There are more than 100 novel agents now in clinical trials. Dr. Kyle is impressed with Pomalidomide and Carfilzomib.
4. There is no link between the polio vaccine given in the 1950's and multiple myeloma.

Dr. Gasparetto spoke next on "Options at Relapse". She explained what relapse is, what treatment options one might have, and important things to consider. Studies using Carfilzomib and Pomalidomide in relapsed MM showed a great response. Patients should seek out such clinical trials and make life as normal as possible under the circumstances. LET OTHERS HELP YOU. Participate in healthful activities - regular exercise, proper rest and a healthy diet. 

Here are some of the materials that were made available to workshop participants:

Many, many thanks to the IMF for providing this very informative, free workshop. EZ and I will be digesting much of this material for a long time to come. There is still so much to absorb and learn about the blood cancer that invaded our lives 22 months ago.

14th Annual Patient Reunion for the Duke ABMT Program

Saturday, October 29th was a day of celebration. A day to look back on difficult days, and to look ahead to better days. A day to catch up with new found friends who shared a common experience at the clinic. A day to once again thank the amazing staff at the Duke Adult Blood and Marrow Transplant Clinic. A day to share a meal and rejoice with patients and donors. A day to look around a ballroom full of survivors and find hope.

This event has been taking place for 14 years and it was a joy to be attending for the first time. I pray we will be in attendance for many years to come. It took place at the beautiful Washington Duke Inn and Golf Club on a drizzly Saturday morning.

We checked in, got our nametags, stood as a boutineer was pinned on Ernie's shirt, received a free raffle ticket, grabbed a muffin, and began to search for a few familiar faces. Here we are with Cookie and Paul, friends from Charlotte who we met at the Clinic following Paul's allogeneic transplant for a form of leukemia. He is doing wonderfully and although Cookie and I keep in touch by e-mail, it was great to see them and enjoy a delicious lunch together.

October 2011

September 2010

We also re-united with Rick and Nena, from Charlotte. Rick had an autologous transplant shortly after Ernie, for Multiple Myeloma. He is in complete remission, back to work and feeling well. We have kept up with Rick via his Caring Bridge sight. What a difference a year makes!

October 2011

September 2010

And here EZ is with his oncologist at the Clinic, Dr. Christina Gasparetto, the leading Multiple Myeloma researcher at Duke. We feel very blessed to have her as his doctor.

One cannot walk down the hallways of the ABMT Clinic without noting the photographs of survivors that line the walls. Ernie and other first year survivors proudly lined up for their individual photos, and then all survivors posed for a group shot. What a blessing to see so many smiling faces gathered in one place, dominating blood cancers!

Stephen Gray, a caregiver for his son, Kyle, who underwent a transplant for aplastic anemia as a college student, was the guest speaker. He educated and entertained us as the caregiver and parent of both a patient and a donor (Kyle's 16 year old brother, Evan, donated his stem cells). Kyle looked fantastic and praise the Lord he, and his brother, are doing well! A few things Stephen said really struck a chord with me as a caregiver:

The pay for a caregiver? The health of your loved one.

Never stop learning...keep your spirit young.

Live your new life to the best of your ability.

If you think my hands are full, you should see my heart!

Laugh more. Children laugh on average 200 times a day. Adults...30-40 times a week.

There are four kinds of people in the world:  current caregivers, those who have been caregivers, those who will be caregivers, and those who need a caregiver. (Rosalyn Carter - Helping Yourself Help Others)

A wonderful buffet awaited us, which made everyone chuckle since transplant patients are often told to steer clear of buffets! I guess this could be an exception since there were no children at the event who might be prone to touching everything. Of course I had to take some pictures of the desserts...

A special moment occured when 47 year old Linda Davis, fighting acute lymphoblastic leukemia three years ago, met her donor, 26 year old Ryan Dunham. Ryan was an Air National Guardsman who joined the registry in 2007, getting the call just one year later that he was a match. He said his family always taught him that if you have something, give it! It was said that 60 percent of patients who need a transplant can't get one and will most likely die. Willing donors are critical as 70 percent of patients do not have a tissue match in their family. Though Ernie was able to have a transplant using his own filtered stem cells, many don't have that option. If you are healthy, please take the time to register with Be The Match and perhaps you could give someone else the gift of life. 

Various baskets and items were raffled off throughout the day, and our ticket proved to be one of the lucky numbers. We received a $20 gift card to Jason's Deli (one of the sponsors for the reunion), and look forward to trying it for the first time! Any recommendations?

Many thanks to the staff from the Clinic for a wonderful reunion. We are forever connected, and indebted!