Oh! The Chafing!

At the risk of slighting those of you in the “over 21” age range, I am rarely inspired by grownups anymore.  Not that grownups don’t do amazing deeds all the time, it’s just that on average, those deeds pale in comparison to what “our kids” achieve daily.

Len on the road

                This weekend, I was inspired by a grown up.  His name is Len Forkas and he (along with many others) got on a bicycle in Oceanside, California and pedaled nearly 3,000 miles across the United States, all the way to Annapolis, Maryland in what was called the Race AcrossAmerica.  Not only that, he won his division (50-59 years old) and placed 10^th overall, edging out riders much younger than himself.

                Len had a bucket load of inspiration as he was using the event to fundraise for Hopecam.org, the non-profit organization he founded that connects homebound children undergoing treatment for cancer, and other life threatening illnesses, with their friends, families, and schools using laptops, high speed internet, and web cameras.

                Charlotte received a Hopecam notebook computer while she was undergoing treatment and we used it for Skyping, emailing, writing Caringbridge updates, and most importantly, for the Reading Vigil. We played recordings of friends/family reading books to CJ and people Skyped in from all over including our friend, Dr. Karen Massar who, while sitting in The Netherlands, read to Charlotte in Dutch.  It’s still one of the most beautiful things I’ve ever heard.

                One of the methods employed for keeping the purpose of the ride front and center (not to mention keeping Len pumped and focused), was to dedicate each day of his ride to one of the many children who have benefited from Hopecam’s endeavors.  On that day, Len would be read descriptions of the child as he rode. Charlotte got day 8 and a video dedication.

They also invited Rachel and me to Annapolis to be among the cheering crowd as Len crossed the finish line.  The wonderful people at Hopecam, including interim Executive Director Jennifer Bond, took very good care of us, paying for the room at The Doubletree Hotel and breakfast Sunday morning. When it became clear that Len was going to get in much later on Sunday then they had anticipated, they offered to pay for another night at the hotel so that we could stay and still see Len cross the “FINISH” line Sunday evening.

We didn’t mind since Annapolis is a beautiful town and was calling out to be explored by us. We figured we could leave early Monday morning in order to get Rachel to work in time.

So after a full day of walking, we settled at the courtyard into which the cyclists would be riding and waited.  There was a rather long time in between finishers which gave us time to network with people in the Hopecam crowd and with other riders’ crews.  One Canadian rider, nicknamed “The Hammer,” actually got hit by a car in Arizona yet was relatively uninjured and finished the race in ninth place overall.  One member of his crew had the torn up jersey he had been wearing at the time of the crash and waved it as he crossed the line.  There are many other stories and not nearly enough space.

Len hoisting his bike in celebration

We finally got word that Len was on his way and the large Hopecam crowd excitedly gathered around the finish line.  When he came around the corner in the dark with his various lights shining and blinking like a big rig on the highway, the crowd went nuts, us included.  When he got off that bike and immediately bent down to greet all the children who were assembled up front (and there were a LOT of them), it showed, even in his exhausted state, where his priorities lay.

Shannon

Soon, the emcee brought Len on stage to receive his medal, given to him by two time survivor and Hopecam beneficiary, Shannon Eastman.  Len wasted no time making sure everyone knew who the star of this event was.  “I just finished the toughest bike race in the world but it’s peanuts compared to what Shannon has had to do.” With Shannon standing close on the stage, he said, “I could stop at any time, Shannon couldn’t.  She had to finish.”

Throughout the evening, I found myself wondering over and over again, “How can I do something like this?”  It wouldn’t be easy.  Just thinking about the amount of time and effort it took to train Len, assemble the crew, plan who was going to do what and where, not to mention feeding everyone, is enough to make a lot of people quit before they even begin trying.

Roger, Len, and Rachel

But you know us; especially when we’re inspired.

Anyone wanna go for a bike ride?

Planning to go to MD Anderson in Houston

Not a lot of new news except that Charlotte's numbers seem to be improving rather than tanking like they were supposed to. She is just amazing!

She's been taking her icky medicine with a minimum of fuss. We've developed the technique of giving her a little bit of meds, then a little piece of chocolate, then more meds, then chocolate, and so on. Before she knows it, the icky stuff is gone and all that's left is the good (relatively) tasting medicine.

She had a pretty mellow day watching a video or two, playing with the shoelaces from my running shoes, and opening a box of birthday presants that came from Clampitville (Aunt B and Uncle Hairy). Very nice gifts folks even though we expressly said, "NO PRESANTS!" this year since she's got so much stuff already and has been getting presants almost constantly since "The Crap" began.

Speaking of Aunt B an' 'em, We got to chat with them via the Hopecam all the way from Hawaii. We (or rather "I") also chatted with the Prices for a short bit as well. CJ wasn't all that interested.

Right now, she's over at Uncle Kolbey's threading frog beads onto a string. She's getting really good at that again.

Rachel has been doing most of the work today, taking Charlotte into the clinic and then going in to Romp n' Roll for the afternoon/evening shift. I get to work hard tomorrow.

I took advantage of my free 90-minute massage today at Massage Envy. I was quite the noodle afterwards. I might get a membership because I really want that once a month! :-)

So...what the heck is on the horizon? We are almost assuredly going to MD Anderson in Houston for the proton beam radiation. We're still not 100% sure when we're going, or how we're going to get there, or where we're going to stay but there are sure a lot of resources out there of which we could take advantage. Thanks to all of you for forwarding those resources to us, especially Deb Price (Nile's mom).

There's a strong possibility we will have to postpone Charlotte's birthday party. Very disappointing but CJ's treatment comes first and we know we'll get the absolute best care at MD Anderson.

I've already contacted the Houston Ground Angels and they'll be helping out with getting us where we need to be. You want an organization that is worth a hefty donation? There you go. Here's their address:
Houston Ground Angels
P.O. Box 683127
Houston, Tx. 77268-3127

Here's the website: http://www.houstongroundangels.org/

There's a bowl of ice cream calling me.

An Update

Charlotte sat on the couch and ate bon bons most of the day.

Not really.

She got to do a story time with her Montessori class via the Hopecam. That was very nice.

I went to Romp n' Roll to teach the Babies! preview class and it was very cool. There was also a Birthday Bash which was a total hoot!

Rachel sat on the couch and ate bon bons all day.

Not really. (She's dictating these things to me as she sits next to me)

She talked to insurance people trying to decipher whether or not the proton beam radiation procedure would be covered and where. Turns out MD Anderson IS in network but certain physicians (the important ones for us) are not. Shands in Gainesville, has a proton clinic in Jacksonville

(remember last time Rachel was dictating from behind/beside and I had to remove her spleen via her ear?!?!?!?)

So anyway, the Shands clinic in Jacksonville is in network as well. There are also hospitals in Boston, Indiana, and California. That's about all of that kind of news for now.

Rachel also went to the bank and deposited over $5000 into Charlotte's account! Thanks so much to everyone. The foundation plans are evolving ever so slowly but evolving they are.

She also got to get her toes done. Nice little distraction.

Aunt Phyllis and Meredith put up the special board next Cj's new table and that is looking very good. The rest of the house looks amazing under the cleaning and organizational skills of Phyllis.

Aunt Phyllis is an exceptionally intelligent and enlightened person. Imagine my horror when I turned around and she was actually watching, "What Not To Where!" Oh, the shame! :-) Oh well, I like "Primeval" so I guess I have no room to talk.

Obviously I'm rambling so I'll sign off and go clean my surgical instruments. (remember the spleen!)

Staying Busy, Fundraising Update

Charlotte had a great day yesterday and a very good am this morning.

Yesterday consisted of CJ going out and about with Aunt Amy on her last day here. They went to lunch at (guess where?) and then Barnes & Noble's to read stories and play with the train table, then back to (guess where?) for milk shake shakes. Then they came home and hung out here until Rachel and I came home.

Rachel worked at Romp n' Roll and I went around putting up posters for the concert/blooddrive. I was getting it done pretty well until I got a call from Rachel letting me know there was something wrong with the AC. So I headed home to gather up the fans and then to the store.

One side seemed to be working properly but it's not enough for the whole store so the art room was sweltering. We called the AC company and they're supposedly sending someone out today. Sure hope so.

So I got to go back out to deliver some more posters/flyers to friendly local businesses.

Then it was back to RNR for our big staff meeting to tell everyone about the new BIG IDEA! which is a new level of Birthday Bash called an Awesome Adventure Party and the accompanying promotional offer.

I feel it was a great meeting I was pretty excited about things afterward. When we got home we just chilled the rest of the evening, talked to Aunt B on the Hopecam, watched my one television guilty pleasure (Primeval from the BBC) and went to bed at a relatively normal time.

This morning, Amy left :-( and CJ and did all kinds of stuff. We took Noah to the vet to check on the gash on his head and get his shots current, we went to the Ashland Library to vote and got to hear a little of storytime with Jamie, Larson, Alexander (but not Bob) and the Morris family, found an amazing book called, Imagine A World with some very good perspective pictures kind of ala Escher, stopped off at the Randolph-Macon College Bookstore to pick up bracelet money (almost $400! And of course they fawned all over her), and then went to Ashland Breakfast and Lunch because CJ wanted pancakes. Unfortunately for us, they don't serve breakfast past a certain hour. BUT! They pulled out the batter just for Charlotte and she got a couple of pancakes! Thanks to Renee and all there.

Now we're home waiting for Mommy to come back from the first day of camp! From what I heard, it was tremendously successful. I have to cover front desk for an hour or so and then teach a couple of our Week-Of-Free-Preview classes.

The weather for the first concert on Thursday is looking like there might be an isolated t-storm here and there so bring an umbrella just in case! Shouldn't be enough to drive us inside but we'll be ready just in case.

Well Rachel is here so I'll sign off. Just letting you all know the initial response to our Amazing Birthday Bash deal has been very strong already.

Keep cruizin' the CB sites. There are lots of amazing stories goin on!

Rog

Another busy day! I spent the morning at Romp n' Roll camp. Our staff was awesome and the kids had a great time! The summer is off and running.

We finally got the AC fixed (hooray) so all is well with the universe again. Not too much damage (physically or financially) so that is good as well.

We wished Aunt Amy farewell as she returned to her family in Ohio. Amy and I met in grad school at ASU and while we haven't stayed in very close touch since graduation, we have certainly remained in each other's hearts. I sincerely value her friendship and it was so good to see her again. (HUGS to you, girl!)

Charlotte has been rather moody the last week or so. Her independent streak has been very strong lately. She has definitely preferred more independent (rather than social) activities and even seems to shy away from some social engagements. I certainly don't blame her. Sometimes I think the attention is a bit daunting. We're just trying to read her moods and let her take things at her own pace.

We have some new information regarding our treatment direction. We will meet with Dr. Khan and Dr. Chung (the radiation oncologist) on Thursday to go over some options for radiation including the timeline. Dr. Khan also indicated that he is in communication with Dr. Wolff at MD Anderson and we should have a report from them soon.

Meanwhile, I thought I would take some time to give some thanks and offer some updates on our various fundraising efforts. Since our first "official" fundraiser with the Head Shaving Party, we have had over $14,000 raised on Charlotte's behalf. This includes money raised for:
o Prayers for Charlotte Bracelets
o the Head Shaving Party (over $5K!)
o Everything But Water and Five Below events (still waiting to receive some more money from the additional Five Below sales)
o 50/50 raffle at the Ashland Coffee and Tea concert
o Qdoba Burrito Eating Contest (final total on that event = $975!)
o Glen Allen Golf Fundraiser
o A bake sale at Trinity Church in Fredericksburg (our "old" home church) organized by the Middle School Youth
o Pancake Dinner held by the Middle School Youth of St. James the Less
o Money collected from various kid's birthday parties in Charlotte's honor (in lieu of presents)
Not to mention the various, random, and very valued donations that have come to us from friends, family, and strangers. Some, like the Head Shaving Party, are rather large. Other fundraisers have produced small sums but every little bit counts. We have paid out plus or minus $10,000 already in medical expenses and travel expenses for Houston.

We are also incredibly grateful for the gift cards for restaurants, cooked and prepared meals, small gifts, and homemade treasures that have found their way to our home. All of these things have helped make our life a little easier at this time. I'm just saying this now because I know that some of you have received personal thank you notes from us. Some of you will probably receive more down the line. And some of you will never receive an actual "card" that says THANK YOU. But please know that our "attitude of gratitude" (as my step-dad likes to say) is ever-present at this time. We are so grateful to our friends, family, customers, the community of Ashland, and all of those people around the country and the world who are supporting us at this time.

If our treatment regimen continues as we think it will, there will be more medical bills (thanks to idiotic insurance). Each round of high dose chemo and bone marrow transplant stands to cost us (out of pocket) up to $10000 so you get the picture.

Not to mention that anything that might be "left over" when all is said and done is going straight into the Foundation that Roger is developing. More on that to come but let's just say that we are already working on ways to "pay it forward" when we're done with all this mess.

Word on the street is that Make A Wish will be coming our way to interview the "Princess" in late June. We will see what she has to say. When we asked her where she would want to go if she could go ANYWHERE she wanted, she said "Carter Park" (which is the park in our neighborhood). All we tell her is to DREAM BIGGER...MUCH BIGGER!

So some big events coming up in the next few weeks:
On the treatment end, we will hopefully get some new direction on dates for radiation to start. That will likely be outpatient for about 6 weeks.

Fundraisers:
o Come on out to Rompy's Summer Concert Series this Thursday for Clay Mottley and the Taters. 5:30 PM at Virginia Center Marketplace (in the Chick-Fil-A parking lot). As Roger says, we're collecting "Food for the Food Bank, Blood for the Blood Bank and $$ for CJ's bank" We will have another concert on July 9th and ANOTHER on August 20th so if you miss the fun this time, there will be more fun to come.
o The Home-Based Business Bazaar will be June 27th at St. Ann's Church in Ashland. Come out and support some of our friends from Pampered Chef, Arbonne, Avon, Happy Gardener, and MORE. They are selling their wares and donating a portion of their proceeds back to Charlotte. A silent auction will be held as well. Start your Christmas shopping early!
Finally, some folks have asked about Charlotte's birthday (yes, it's ONLY a month away!!!). First of all, she does not need ANY presents. We have a house full of goodies so gifts are completely unnecessary. Any celebration that will be had will be a complete and total celebration of her and her LIFE. We have not made any definite plans yet and we may just gauge things based on how she is feeling and where her treatment regimen is in about a month. It is very possible that we may delay her "official" celebration by a few weeks. As usual, we will keep you updated.

Ok, so that's all I have to say for now. I have a boat-load of paperwork to siphon through and as it's already almost 9 PM I can only imagine how un-productive I will continue to be. Sigh. Where does the day go?

Signing off...
Rachel