Thursday, September 18, 2008

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How I Spent My Summer Vacation

Please, tell me I’m dreaming. It just cannot possibly be mid-September. The last three months have flown by at warp speed. One year ago last week, we took Sahara to Stanford for surgery. I still remember it all so vividly: the initial call from Dr. Edwards telling me that he could indeed operate, the difficult journey to Palo Alto, the amazing people we met there, a very successful surgery, big hopes from rehab, watching Sahara actually walk again in physical therapy, the excitement of going home. She only got to enjoy being at home for 11 days, but she was so very glad to be in her own house again.

I apologize for taking such a long time to post. It has been a busy summer with a lot of things going on in many different directions. I’ll try to do a respectable job of recapping my favorite season of the year. Sahara and I both loved summer; we were constantly on the run, traveling, swimming, zipping around from place to place, enjoying the warmth and beauty of the days.

Shannon and I delivered a check for $2150 to MVTH on Sahara’s birthday. I’ve included a photo of Shannon, Sahara’s Kandy, Grayson and me on the slideshow. I am so proud of the work he did and the number of shirts he sold. We again want to thank everyone who bought a shirt or donated to the cause. It was indeed a fitting tribute to Sahara’s memory to be at the barn on that day. She spent her last birthday there. It was a perfect summer afternoon, and she got to ride Kandy outside in the pasture near the barn. I was so proud of her for having the strength and desire to ride, even though it had become increasingly difficult for her. But as always, she was a champ,
and had a great time on her special day. The volunteers at MVTH brought cupcakes to celebrate. I still have the little Hello Kitty decoration from Sahara’s cupcake in my kitchen windowsill.

Sahara’s birthday was a struggle for us in so many ways. We really didn’t know what to do with ourselves. After we delivered the check to MVTH, we literally drove around for about half an hour trying to decide where we should have dinner. We ended up having barbecue at The Branding Iron, one of Sahara’s favorite places. It was good, but somehow food just doesn’t taste right when you’re so freakin’ sad. I wonder which one of us cried the most that day; probably a tie for that honor.

The next day I left for New York. I flew to LaGuardia, where my precious friend Pamela picked me up in the Sparklecar! We had such a wonderful visit. I finally got to meet her husband, John, who is witty and a great conversationalist. She and I went to Rick’s show on Long Island, which was literally only about 20 minutes away from her home. It was so good to be at a concert again! I finally had the chance to meet Rosie, Theresa and several other wonderful gals who have followed our story for so long. (Thank you all for helping to make the trip so special for me!) Even though we were several rows apart, both Rosie and I noticed the lone butterfly fluttering around the venue before the show started. That butterfly dipped and dove for at least a couple of minutes before finally coming to rest right in the middle of the top of the rigging that held the lights. (Perhaps “she” had the best seat in the house. LOL.) Butterflies seem to float around in my world quite often, and I like to think that they’re little nudges from Sahara.

Pamela and I had long talks, great food and so much fun. I just loved the variety of restaurants on Long Island – wow! I think I had the best burger and fries of my life at a tiny little place called The Sweet Shop, in Hicksville. Thank you, Pamela, for chauffeuring me around the island and for making me feel so welcome in your home. I really needed that weekend.

I spent the next three days in the whirlwind commonly known as Manhattan. Thanks to my adopted locals who gave me such wonderful guided tours! We drove past Ground Zero on our way to the South Street Seaport; it was spitting rain, and the barricades prevented me from seeing the area, but just knowing what happened there seven years ago made me shudder. I simply cannot imagine having been in that area on 9/11. We all watched it unfold on tv, but driving past it I could not fathom how terrified everyone must have been, running in all directions, down chaotic city streets, screaming, crying, not knowing what was happening in their city. The Rick Springfield online community lost one of their own that day. Her name was Marni O’Dougherty. She was so vibrant and funny, and even though I had only spoken to her via typed words, my heart ached for such a loss. (I have a photo of Sahara standing in front of the New York New York hotel in Vegas, beside the photo of Marni and her husband that someone placed at their makeshift memorial. It’s one of the few photos in which Sahara looks genuinely sad.) Today, it’s hard to find many visible reminders of what happened on that awful day. I still remember all of the American flags flying afterward, and how this country banded together. I wish we could always have that kind of unity, no matter where you may stand politically. I can tell you this…the printed flag that Sahara taped to her bedroom door after 9/11 remains there to this day.

I walked through Times Square at night, which is the very best way to see it! The lights, the billboards, the Broadway shows…it defies sensory definition. What an amazing thing to see for myself. I spent just about every New Year’s Eve of my childhood with my grandma. We always had pizza and snacks as we celebrated with Dick Clark’s New Year’s Rockin’ Eve, and watched as the giant ball descended slowly to the ground. I never dreamed that I would actually stand beneath that ball one day. Now, THAT was cool.

Monday was insane! Up before daylight and off to Good Morning America to watch Rick and the guys perform. It was so much fun to be there and see how the show is produced. I loved seeing everyone having such a great time. After that, it was a day filled with running all over town, from one radio station to the next as Rick did interviews. We visited WPLJ, which I learned has a rich history in NYC. It was cool to see the station, and I met their star DJ, Race Taylor. He was very sweet and it was a pleasure to chat with him. We went to more places than I can remember that day! I think the last interviews were at Sirius Satellite Radio. Mark Goodman did a very good, very thorough interview for his Big 80’s show. I sat there as they talked, remembering how I used to see his face on MTV every day way back when. He showed great interest in “St. Sahara,” and when Rick introduced me as her mom, he got very emotional. (I think I made too many people cry in NY. I swear I didn’t mean to!!!) He was incredibly nice and I’m thrilled that I got to meet him. I also met Vinny Pastore from The Sopranos…how cool is that? It was such an exciting day, but I have to tell you that I literally passed out from exhaustion that evening!

Tuesday morning did not have quite as early of a start, thank goodness! We went to Live with Regis and Kelly for Rick’s performance. Honest opinion: Kelly is just as cute and sweet and funny when the cameras are not rolling. Seriously. Reege was very funny in his curmudgeonly way and seemed to have a good time working the crowd. It was great fun. After the show was finished, Rick had a lot more interviews to do. I wanted to do some sightseeing, so I took off and packed as much as I could into that day!

I still can’t believe I was able to get this photo. I was standing in line, waiting to get a ticket for the Circle Line cruise. It was very crowded, with lots of people mingling about the area. I glanced to one side and someone caught my eye. It was a man walking toward my line, obviously looking for something or someone. As he got closer, I noticed the type on the front of his shirt. The shirt was blue, and there was one word printed in block letters: SAHARA. I could not believe it…I tore my camera out of my purse and snapped a photo. He didn’t even notice. He apparently didn’t see what he was looking for, and as he came about ten feet from me, he turned around and disappeared into the masses. I would challenge anyone who would argue that Sahara was laughing, letting me know that she’s keeping an eye on me, telling me hello and giving me a wink every now and then!

The cruise out to the Statue of Liberty was both exhilarating and relaxing. It was truly awe-inspiring to approach her, imagining what the immigrants must have been thinking as they entered this country. It was a warm, sunny day, just perfect for seeing Manhattan from the water at a leisurely pace.

After the cruise, I walked…and walked…and walked. I scaled as much real estate (very, very pricy real estate, at that) as I could in one afternoon. Some of the highlights: St. Patrick’s Cathedral, Rockefeller Center, Central Park, the Plaza Hotel, FAO Schwarz and the NBC Studios. WHEW…

Following one last spectacular meal, it was time to pack my clothes, souvenirs and great memories. Wednesday morning came all too soon and I don’t think I really woke up until I got on the plane. I loved my visit to the city, but was also very glad to get back home. It was truly the trip of a lifetime and I am very grateful for the experience.

August 1st was Shannon’s birthday…it passed without much fanfare, I’m sorry to say, because I was up to my eyeballs in an office transition at work. Ask him about his Rocklahoma book, which turned out to be an excellent present, if I do say so myself!

On August 23rd, we did our very first 5K walk, sponsored by Lynwood Baptist. We walked with Jen and Dan Hecht on a really hot, muggy morning, and it was a great time. Apparently we didn’t take our stride seriously enough, because we were blown out of the water by just about everyone else in the race. LOL. No matter, it was fun and I’m glad we did it. Who knows, maybe it will become a new hobby!

A postscript to Sahara’s birthday: on the afternoon of July 24th, my nephew Darrin and his family took a bouquet of 14 balloons to Cape County Park and released them. Attached was a card that said happy 14th birthday to Sahara, gave her website address, and asked the finder to please let us know where the balloons landed. Well, a few days ago, a gentleman named Kevin from Melber, KY contacted Pamela. He found the balloons while hunting in Ballard County – then took the time to look up the blog and read Sahara’s story. He was touched and sent kind wishes. We were so excited to find out that the balloons traveled over 60 miles, and that someone took the time to let us know they were found. Thanks, Kevin, you made our day!

Last week was the annual SEMO District Fair. I cannot remember the last time I went to the fair prior to Saturday night. I know Sahara was with us, so it had been at least three years ago (wow). We went to the Styx concert and had a blast, rockin’ out to the songs from our high school years. They still put on a super show! We also saw so many friends, many of whom I hadn’t seen in a long time. That’s one of the things I love most about the fair; it almost always turns into a reunion. It was so good to see everyone.

Please keep in mind that September is Childhood Cancer Awareness Month. Here are some sobering statistics that everyone should know:

Brain Tumors in Children and Young Adults

Brain tumors are the second most common cancer of childhood, and comprise approximately 25% of all pediatric cancers. Over 3,400 children are diagnosed in the U.S. each year; of that, about 2,600 will be under the age of 15.

Brain tumors are the leading cause of solid tumor cancer death in children; they are the third leading cause of cancer death in young adults ages 20-39.

The types of brain tumors found in children are different from those in adults. Further complicating treatment is the fact that children's developing brains are more susceptible to damage from toxic treatments. Although more than 70% of children now survive their tumors, they are often left with long-term side-effects, including:
- Learning problems due to cognitive, neurological, and psychological changes.- Vision and/or hearing impairments that can contribute to problems in school.- Increased risk for second cancers due to the late-effects of treatment.

Only two new treatments for brain tumors have been approved in the past 25 years.

Childhood Cancer Facts
· Childhood cancers are the #1 disease killer of children — more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
· One in every 330 children will develop cancer before the age of 19.
· The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
· Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.
· One out of every five children diagnosed with cancer dies.
· Common cancer symptoms in children — fever, swollen glands, anemia, bruises and infection — are often suspected to be, and at the early stages are treated as, other childhood illnesses.
· Three out of every five children diagnosed with cancer suffer from long-term or late onset side effects.
· Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult.
· Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).
· Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.
· The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).
· Nationally, childhood cancer is 20 times more prevalent than pediatric AIDS, yet pediatric AIDS receives four times the funding that childhood cancer receives.
· On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.
· On the average, one in every four elementary schools has a child with cancer.
· On the average, every high school in America has two students who are a current or former cancer patient.
· In the U.S., about 46 children and adolescents are diagnosed with cancer every single school day. That's about the equivalent of two entire classrooms.
· While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.
· Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is elusive.
· Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.
Here are some things you can do this month (and ALL YEAR ROUND, for the most part!) to support Childhood Cancer Awareness.
None of these things involves any financial burden of any kind (except for eating at Chili's ... but hey, ya gotta eat, right??)
· join team unite to become part of a unified voice against childhood cancer
· join people against childhood cancer (PAC2) to learn of efforts being made around the world to find a cure, raise awareness, and lend support
· tell everyone you know (and even those you don't know) how you, or someone you love, has been touched by childhood cancer
· donate blood
· eat at Chili’s on Monday, September 29th, when Chili’s will donate 100 percent of profits from participating restaurant sales to St. Jude’s
· WEAR GOLD FOR THE KIDS (you really don't need to click that link -- I know you've got SOMETHING gold in your closet!!!!!)
· register to become a bone marrow donor
· let a family that's been touched by childhood cancer know you STILL CARE and haven't forgotten about their struggles ... let a family of an angel know their child remains in your heart
· read this article on
· offer to volunteer at a local childhood cancer center

Sign the Petition to Raise Awareness at (and ask your friends and family to sign, as well!)

Lastly, big thanks to everyone who has purchased tickets to the Rick Springfield show in Cape, benefiting MVTH!!! And thanks to our incredibly generous sponsors from our amazing community…we appreciate your support in these rough economic times. 100% of the funds raised for this event will go directly to MVTH.

In our area, you can designate MVTH as a recipient on your annual United Way pledges!

I’m sure I’ve left out some very important things (which Shannon will quickly bring to my attention). Please know that we appreciate that so many of you continue to read the blog and keep Sahara’s memory alive. We love you all!

Our best to you,
Amy and Shannon

Thursday, September 04, 2008

Sold out show

Excuse me, what happened to the last month? Whip, whirl, and there it flew, in a cloud of fresh roasted corn, juicy peaches, and sunflowers. The kids are back to school, and half the world's pretending that winter is not coming in a few short months.

Speaking of whirlwinds, Amy has been quite the dervish getting ready for the Benefit in Cape Girardeau next month. Thank you to all of you who jumped in quickly--it sold out in a heartbeat. For those who didn't get tickets, we truly wish you could join us, but every inch of the space is full. We can't cram another person in.

For those who are miffed that children cannot attend, we understand...but the law is the law...and to quote that nasty lady in the Wizard of Oz, "Ya wouldn't want to go against the law!"

The event benefits Mississippi Valley Therapeutic Horsemanship, one of the wonderful local service organizations that made Sahara's last year on the planet a little more tolerable. The volunteers and horses there gave that girl so much joy--something to get excited about, and something to hope for.

They need our help--and Sahara would undoubtedly look you in the eye and tell you the same thing. And whether you give $21 or $2100, know that you are giving southeast Missouri's sick and disabled kids a truly healing experience.

Send me an email if you want to give.