Here In Monterey! (Seaside, Actually)

Rachel and I arrived in San Francisco, CA very late last night (in the wee hours of the morning, truth be told) and were promptly picked up and carted away by Shelley Wilkinson, our most gracious host, chauffeur, cook, and tour guide (not to mention West Coast Chairperson for TEAM CJ). We wasted no time completely collapsing into bed when we got to her and husband David’s house in Seaside but my body wouldn’t let me sleep past 6:00am Pacific Time (which is 9:00am Eastern) so it was another short night.

I’ll be napping as soon as I get done with this post!



Rachel, Shelley, and I went down to Monterey to check out Cannery Row, scope out wineries in the area, and find lunch. If you find yourself out here, I strongly recommend you stop off at the Pacific Grove Chamber Of Commerce Visitor Center across the street from the Science Museum and have them tell you stuff. They love to do that kind of thing and will give you awesome coupons to use at area establishments; like free appetizers at local restaurants, discounts for whale watching (might use that Monday), and maps. (I LOVE MAPS!!!) They also have a statue of John Steinbeck and Rachel couldn't help flirting with one of her favorite authors!

We used said coupons at a place on the bay called Fish Hopper Seafood & Steaks and had a VERY yummy lunch that included clam chowder in a sourdough bread bowl (almost can’t come out here and NOT get that at least once), calamari, and artichoke heart. Rachel had fish, the name of which I can’t remotely remember (I had never heard of it before but it was good!).

We ate outside on a deck overlooking the bay and watched the waves come in and out and various birds do the same.

Then we headed around the bay to get a look at the “beaches” and snap some pics of the water smashing against the rocks but we didn’t stay out long as it is unseasonably cool with a brisk wind that made it a bit uncomfortable to be out for too long. What was amazing was what looked like this pink creeping flox (although I think Shelley said it wasn’t flox) covering a good portion of the hills up from the water. The blanket of pink wrapped all around the southern point of the bay and was striking to say the least.

Rachel was strongly reminded of the day we were in Daytona Beach after Charlotte’s Make-A-Wish trip to Disney World and CJ was sitting in a chair on the balcony all day, just enjoying the peace of the water. We asked her if she wanted to come in several times but she was comfy and we let her sit.

I agreed with Rachel and that photo is my Facebook profile pic again for a while.

Next was the short trek to the Fitness Expo to pick up race packet, shirt, and bus pass for the marathon on Sunday. It’s a smaller race overall (if you can call 13,000 participants small!) which translated to a much faster check-in experience. Strange but I was actually wanting more of “The Gauntlet.”

On an aside, here's a video of some of what we're in for.

Tomorrow we will join up with James Staudte and family for a day of Aquarium exploring and carbo-loading later at Shelley’s house. Some of the staff of the Children’s Hospice and Palliative Care Coalition will be coming over to the pasta-party and we’ll be presenting them with a check for 25% of the funds we’ve raised so far. Donations are still coming in and we’re so grateful to everyone who has helped.

Speaking of that, time for another bit of a family story:

“Yulisabel (Yuli) is a 3 year old with Acute Lymphoblastic Leukemia (ALL). She routinely needs rides to treatment (a considerable distance) as her father works and is the main driver and supporter for the family. She has a 4 year old brother and they live with 3 other families in a house on the outskirts of town. They share one bedroom.

Yuli loves to listen to the radio. Her mother also has music on her phone and she puts it up to her ear and this young girl is mesmerized. Her mother has recordings of her son singing and Yuli making noises around the house which keeps Yuli happy during the long rides to treatment.”

Yuli’s is one of four local Monterey Bay area families who will benefit from TEAM CJ’s FUN-raising efforts this week. We always like to say that we aren’t finding a cure but we are helping to make an un-bearable situation more bearable. Please don’t forget that YOU are a big part of that “WE.” CJSTUF couldn’t do it without your help.

Wanna help some more? Demand for what we do has increased dramatically this year as word of our mission and success has gotten out. We are already on track to receive double the number of applications we received last year and we would like to fund them if possible. If you’ve donated to any of our events, that’s wonderful and we’re not asking you for more. We ARE asking that you tell your friends and families about us and see if they’ll send us just 4 bucks ($1 for every year of Charlotte’s life) or a multiple thereof: $8, $12, $16, etc… You’d be amazed how it adds up. Here's the link

As usual, Rachel and I can’t thank you enough for helping to keep Charlotte’s legacy alive so we can “take care of the living.”

Love on your little ones like there’s no tomorrow.

I’ll blog atchya later.

Love,
Rog

p.s. Finally: Good luck to all doing the ASK 5K tomorrow morning. Our thoughts are with the Parents of Lois and Abbie as they begin their own marathon

Moving on but not quite letting go

I think Roger's last post really set the tone for where we are right now. Every day is STILL a roller coaster. Time is strange too. January seems so far away. AGES ago. One of my projects this week was to pull out some of our pictures from the Make-A-Wish trip and put them in scrapbooks. We had a few wonderful donors/friends who made three scrapbooks for us with Disney themes. I printed up just a sampling of our favorite pictures and filled in some of the pages. Looking at those happy memories, it was hard to believe that less than a month after we took that trip, she would be gone. And it's so hard to believe that she's only been gone for 5 months. Sometimes it seems like years. Sometimes it seems like a dream (or a nightmare).

This is a week for projects because my Aunt Phyllis is here and we are getting some much-needed projects crossed off the to-do list. First on the agenda today was taking a carload of toys and other kid stuff to ASK. We had been given so many gifts: toys, books, dolls, coloring books, lotions and lip gloss. While we used and loved many things, there were other gifts that just sat in the packages because we were (gratefully) overwhelmed. Many things came in at Christmas time and by then, all Charlotte wanted to do was read and sleep. So we decided that we wanted these toys to be loved and I can't think of many causes better (or closer to our heart) than ASK. We also hauled some "gently used" stuff off to Goodwill and I have some more clothes to pass along to a little girl who loves the girly dress-up stuff almost as much as Charlotte. The good news is that passing along some of these things doesn't seem to hurt nearly as much as it did during the last round. We are taking our time with letting go and I know that is healthy.

Now that her room is being emptied of toys and clothes, we are going to fill it with CJSTUF materials. Her closet will now be home to many things for the foundation (which up until today were being stored in my dining room!) so it will be a used and usable space filled with memories of my girl! I will post pics when it's done.

The crazy thought that slammed me in the face this week (as my Facebook friends know) was that I actually found myself wishing for the hospital routine. I have often been thinking lately of our journey to Houston and the crazy experience of living in and out of hospitals for pretty much a full year. I never thought I would miss it but I kind of do. When I tried to figure out WHY I would miss something so draining and horrible I realized: at least she was there. She was sick and uncomfortable and subjected to procedures I couldn't even imagine but I could hug her and kiss her and talk to her and love on her. I spent the past year wishing that I could leave the hospital but I'd go back if I could see her again. I told you it was crazy.

Thank you to all our friends and family who continue to support us in so many ways. I really appreciate that so many people are looking out for us in both big ways and small.

Before I close, a few items of business:

1. The Tupperware sale will end next week so please get your orders in. You can go to this link to place your order OR come to a Tupperware party at MY HOUSE next Thursday 6/24 at 7 PM. You can sample the products and talk to a REAL, LIVE, Tupperware consultant to find what you can't live without. 40% of sales go back to CJSTUF so this is a great opportunity to get a wedding gift, housewarming gift, or just a little something for yourself! Email me if you have any questions.
   
2. LET'S ACTIVATE THE NETWORK: Please vote for our Romp n' Roll employee, Samantha Dickenson, to win a Dream Baby Shower from RichmondMom.com. You can go HERE to place your vote by June 20th (Sunday). We would love to see her win.

Roger is still training for the marathon and (literally) working his tail off. More news on that to come. More CJSTUF events in the embryonic stages so look for more coming soon this fall!

FAQ about donations:

Thank you to everyone who has inquired about donations to CJSTUF and other donations in Charlotte's honor. There have been a number of questions so I am going to address them here:

1. To Whom Should I make a donation in Charlotte's honor?

There are a number of worthy causes that have benefitted us this year. Besides CJSTUF, donations can be made to Make-A-Wish Foundation, ASK Clinic at MCV, or Noah's Children. Other worthy causes not mentioned in the obituary include ReeseStrong, Connor's Heroes, Ronald McDonald House, and Caring Bridge.

2. How can I make a donation to CJSTUF (or any of these other organizations)?

You can bring your donation to the memorial service on Saturday. There will be a lockbox at the service and reception with the logos of all the organizations that have benefitted us (as well as CJSTUF). Donations can be accepted there. All cash donations will go to CJSTUF unless otherwise specified.

A donation link will be set up on the website soon (we are working on this). This will allow for online donations via PayPal. Other donations to CJSTUF can be sent to our home address: 9 Slash Ct, Ashland, VA 23005. Checks should be made out to Charlotte or to CJSTUF.

3. Are donations to CJSTUF tax-deductible?

While we are an officially incorporated organization, we do not yet have 501(c)3 status. Donations are NOT currently tax deductible; however, our board is pursuing tax-exempt status and we expect to have this before the end of 2010. We will definitely make sure everyone knows when we have tax-exempt status.

4. I work for a company or volunteer for an organization that raises money and/or matches funds for other organizations. We would like to help CJSTUF. How do we go about this?

We would love to work with you and your company/organziation. Most companies or other organizations require that a benefitting organization be tax-exempt or have tax-exempt status in order to qualify. CJSTUF is not going anywhere and we would be happy to work with you once we reach tax-exempt status! Just keep your eyes and ears open.

Thank you, again, for the momentum and energy and giving spirit that has been put forth in Charlotte's name. We are humbled and appreciative!

Rachel and Roger

Another Busy Day & CJSTUF Kickoff Meeting!

Well, first I must update you on Thursday.  Roger and Charlotte went to the library and spent some quality time reading books.  We also had Thanksgiving dinner at RMC with the Field Hockey team.  What a wonderful, generous bunch of girls (young ladies!).  The RMC Thanksgiving meal was fabulous and Charlotte enjoyed seeing the girls, especially her buddy Walker.  We came home and watched the Wizard of Oz before Charlotte headed up to bed.

On Friday, Roger took Charlotte to MCV to get her stitches out.  In true hospital form (I think this happens every 2nd or 3rd time we have an appointment) nobody seemed to know we were coming.  I guess there was a communication mixup but her appointment was at 9:30 and Dr. Tye doesn't even get there on Fridays till 10. Anyway, Roger was a bit miffed but used the opportunity to take Charlotte to Nurse April and get her dressing changed.  She always does a wonderful job.  They got home a little after noon.  Stitches in her head are out and everything looks great.

Meanwhile, we have our flights booked to Florida.  We will leave here on December 1st (pretty early in the AM) and return home late on the 14th.  We get to fly through Charlotte (Joy!) but it shouldn't be too bad.  They are working on getting us in to a princess breakfast/lunch at Disney.  Those book pretty quickly and since we are making our trip kind of last minute, that has presented a challenge.  I know they will do what they can.  We know from others who have had the MAW experience (including Reese who is there right now) that it is just AMAZING.  Disney itself is pretty cool but the MAW folks definitely go all out for their families and word on the street is that the Disney employees keep an eye out for the MAW families and make sure to treat them with extra TLC.  I'm not opposed to that at all!!!  This is one of the few times in my life when I will take advantage of any and all special treatment Disney wants to give to our family. 

Noah's Children came to visit yesterday.  They are a palliative care and hospice program for children exclusive to the Richmond area.  We met with "the Cathys" (both named Cathy, one a social worker and the other a nurse) and they shared some information about the organization, met Charlotte, and got some info from us.  They have their own doctor (Dr. Archuleta), a pediatrician specializing in palliative care, who will now coordinate with Dr. Khan from this point forward regarding Charlotte's care.  We talked about our desire to stay at home as much as possible at this point as well as other things that may come up in the weeks to come.  Their staff (consisting of a chaplain, social worker, and a team of nurses) will be available to us 24/7 for anything we might need including emotional support, medical care, respite, etc.  They will visit weekly (at least for a while) and continually update our plan based on our needs.  They will also help, when the time comes, in planning Charlotte's final days and what will happen upon her death. 

That seems incredibly bizarre to type that last sentence.

I have said before that this whole experience is very surreal to me.  It really is.  I've never had a family member (grandparent, parent, etc.) experience dying in this way (at least not that I was old enough to remember) so this whole concept of knowing that the end is coming but not quite knowing when is very strange to me.  It is so odd to talk about the end of her life in such a matter-of-fact way.  SIGH.

We also had a visit from Katie Reynolds, one of Charlotte's old babysitters.  Her mom came along as well.  They shared some books and had some quiet visiting time. 

Yesterday evening, the Advisory Council for CJ's Thumbs Up Foundation met for the first time.  I just want to recognize the folks that were there and are now a founding part of the group.  They are:

Meredith Hayes
John Toscano
Dr. Anna Madland
Jay Campbell
Emily Starrett
Kim Thies
Lauren Coe
Pam Myers (not able to attend yesterday but she's part of the group!)

We had a great meeting and discussed moving forward on a number of initiatives, capitalizing on the positive buzz that this has generated on Facebook, Caring Bridge, and within our community.

Long story short, the website is in process and should be "live" very soon.  We are working on getting an official blog (you're reading it now!) that will eventually navigate us away from Caring Bridge and directly on to the CJSTUF website.  This is mainly because we will have a lot more functionality for social media, etc. with our own blog.  We LOVE Caring Bridge but we are moving on to bigger and better things...

The Advisory Council members are working on a business plan, bylaws, and incorporation.  They are going to meet on their own and report back to us, probably after the Disney trip.  I am so excited!

I think that is the main stuff to report for now.  I must get ready as we have another busy day today.  We are going to the Coliseum with one of Charlotte's boyfriends (Wyatt).  She has a date to see Disney Live!  Then we will be off to Fredericksburg for the prayer service at Trinity Episcopal Church.  This will be a very informal prayer service (Compline) in Charlotte's honor at 5 PM with a small, informal reception to follow in the fellowship hall.  All in the Fredericksburg area are welcome to attend.  The church is on College Avenue, across from Mary Washington. 

Hope everyone has a wonderful weekend. 

Rachel

Make-A-Wish for Charlotte

YAY!!!!!

Just got off the phone with the Exec. Director of Richmond Make-A-Wish and they are going to make our wish happen (the way we want it to). 

We will be flying to Orlando/Disney on December 1st.  We will stay at Give Kids the World (at Disney) and tour the parks until about the 7th.  Then we will head over to the Daytona Beach area and will stay with my family until about the 14th/15th.  Make a Wish will get back to me soon with final details on flight times, etc. 

Our current plan is to spend the first week at the parks.  Many of you have asked: if you are a Floridian and have Disney passes or want to join us somehow, you are welcome.  We will try to solidify our itinerary (which parks on which days, etc.) closer to the time.  All subject to change, of course, depending on the Princess's wishes.  The second week will mainly be in Daytona.  Itinerary to follow...

We have also had many volunteers for "paparazzi" to follow us and document the trip with photos.  Beth (our Mary Poppins photog) is planning to come for the first part of the trip and we should know soon when she will need to leave.  I may call on a few of you other volunteers to help us fill out the experience. 

Our airfare, rental car, lodging, and much of our food, etc. is COVERED.  Between individual donations and the Make A Wish funding, we should be set.  I am so excited! 

Disney, here we come!

-Rachel (Charlotte's Mom)

Charlotte made her "Wish"

The last couple of days in the Nelson Clinic have been much smoother. We've been calling in ahead to give them "warning." Dr. Kahn wasn't there today so we didn't get to ask our latest questions but nurse April promised to corner him this afternoon and make sure he addresses them.

Saw Nile and his mother today. He was furiously playing video games in the waiting room. He looked pretty good.

Also saw Reese's Mom. She was back and forth taking loads to the car in hopes of going home. Hope it happens soon.

There were others we passed here and there who we knew or at least knew CJ. Drs., nurses, parents, staff. I actually am starting to really hate the fact that we know so many people there. As I like to say to those we meet, "Not that I don't want to see you but I sure wish it was at Ukrop's or something."

Charlotte is resting comfortably and watching Big, Big, World. I'm starting to notice "the look" creep back in. She's smiling a little less and looking more tired. Fortunately, the nausea and other problems haven't materalized yet. I'm sure they will be by soon. She's still eating so that's good. No poop for a couple days now. Can't be long as the topo-stuff is supposed to make her stool very, very loose.

Can't beat the weather the last couple of days. Tomorrow should be more like normal - Hot, humid, and icky.

Make-a-Wish is coming by soon so we'll be one step closer to that.

Phyllis is upstairs ripping carpet out of the closet. I didn't know there was anything left to do! We've got an electrical project for Grandpa next time he comes up. Our hall light looked like it needed a bulb so we tried to get the cover off to change it. I don't think we had done anything to that fixture in a very long time and it sort of fell apart when we finally got it loose. It's salvagable but I don't do electricity so Dad get's to! :-)

Got to chop a little wood yesterday. Might run out and grab some wood from a neighbour who just cut down a tree.

The business front is looking a bit better. We hit our overall membership goal, which earned the staff an ice cream party, and our Awesome Adventure Party promo is cooking along with great vigor. We've booked a large number of parties as far forward as mid-late 2010! There are some other great things coming up that will amaze and mystify you! :-) Stay tuned.

The Home-Based Business Bazaar is Saturday at St. Anne's Catholic Church from 10am-2pm.

Update:

So Charlotte made her official "wish" today. The Make-A-Wish ladies (Toni and Emily) came by to visit. Emily helped us fill out the "grownup" paperwork (releases and such) while Charlotte and Toni chatted it up. She told her that she wanted to go "Where Annette and her kids went". When probed for more clarification, Charlotte said "Minnie-Land" or "The place where the princesses are". AKA: Disney World! It was definitely her wish and her decision. Roger and I are both excited as well. We are tentatively looking at a winter date (Dec/Jan/Feb) to be solidified once radiation is over and we have a better idea of how her treatment plan will play out. We will get to stay at Disney for about a week and we will stay at the Give Kids the World hotel. It is a resort on the Disney property that was started by a man who wanted to make sure that kids with medical needs could have a great Disney vacation. They have a doctor and nurse on staff and (word has it) you can get ice cream sundaes 24/7. My kind of place. I think they also have characters who visit the hotel from time to time. Did I mention I'm excited? We are basically not getting a vacation this year (surprise) so this will be something special to look forward to. Once we have dates, anyone who is in the immediate area (or anyone who wants to travel to join us) is most welcome. I know we have a pretty big Florida fan club.

In other news, our nurse at the clinic called back with the answers we had about her protocol so that was cleared up. She will start a new medication next week (temozolamide) and will only be on the accutane till Sunday. Dr. Khan assured her that he is working on the insurance "stuff" and will update us when he has more news.

Charlotte is playing it pretty low key right now but managing to keep herself busy. She needs to poop but otherwise seems fine. She's gnawing on a HUGE apple as we speak. As Roger mentioned, we are getting ready to be pretty germophobic as her counts will soon plummet so be aware that playdates will be kept to a minimum.

Granny and Gramps will arrive tomorrow (hooray) and we will be on the official countdown to her birthday. Can you believe it's two weeks away?

Remember: two upcoming events for her birthday

1. The Summer Concert Series on July 9th (her actual birthday) in the Chick-Fil-A parking lot. Come out for the concert, donate blood, and bring food for the food bank.
2. Her birthday party at Romp n' Roll, Friday July 10th, 6 PM. All are welcome! We will have cake and some assorted food goodies, we'll put up the moonbounce and let the kids (and grownups) P-L-A-Y. No presents, please. We just want to celebrate HER! OH and the theme will be Tinkerbell. Charlotte wants everyone to wear pink and/or purple to the event so come decked out.

That's all I have to report for now. Some very good news.

Rachel

We are Here in Houston

Well, here we are in Houston, TX.

The morning began at 4:30 AM (!!!!) Charlotte unexpectedly woke up before we even had to rouse her. We made it through all the airport rigamarole and all of the flights went very smoothly. Charlotte, in true adorable form, had the flight attendants fawning all over her and got tons of free cookies and her very own airplane wings. She was very well behaved on all of the flights and the DVD player lasted just the right amount...battery dying upon our descent into Houston!

Our "Houston Ground Angel" met us at baggage claim and we were off towards the hospital/downtown area. With all the excitement, Charlotte fell asleep on the way to the hotel. We hadn't eaten any "real" breakfast (just snacks) since the day had started, so around noon, I left Roger and Charlotte to rest in the hotel and set off in search of food.

I found a grocery store about a mile from the hotel and took a good walk there and back. We have a kitchenette in our room so we got some handy stuff for sandwiches and snacks.

When I got back, Charlotte was STILL sleeping! We ate some lunch and when she finally roused and ate as well, we set off for the zoo. The hotel's shuttle will take us to various places in about a 3 mile radius so they dropped us off and picked us up. Handy!

We had fun seeing all the animals at the zoo and got at least one ReeseStrong picture. The weather here is warm and humid but not terribly uncomfortable.

Now we are back at the hotel for some rest before dinner. Between the time shift and the mid-day nap, I think our timing is a little off.

So while this has all been good news and smooth sailing, let's move on to talk about our real purpose for this visit:

I had not heard back from Dr. Khan regarding the exact time and location of our appointment (the medical center here is HUGE!!! It makes MCV look tiny by comparison). First I called MCV to try to touch base with Dr. Khan and see if he had any news. Left a message (of course). Then, on a whim, I thought, "Why don't I just call MD Anderson Clinic and see what time they have our appointment". SOOOO....

I got through to the clinic and the person I spoke with transferred me to another person who seemed awfully confused and said that she hadn't received the needed information including insurance info from MCV so they hadn't made our appointment yet. (WHAT?????)

So I told her that we were here in Houston and expecting an appointment tomorrow. She got some more information from me about insurance, etc. and promised to call me back.

When she did call back, she said that the insurance would NOT be covered as in-network and they were still trying to work out our clinic time. So then I got on the phone and had Dr. Khan paged. When he called back, he seemed just as confused, especially regarding the in/out of network thing. I know that in the past, Roger and I have had some of our regular doctor visits "mis-billed" and they have ended up out of network rather than in network and then we've gotten it fixed. This may be what is happening here. Unfortunately, it sounds like MD Anderson's policies will require us to pay up front (rather than being billed for non covered/out of network services). This is unusual but maybe it's because we're from out of state...I don't know. All I have to say is thank GOD for the recent fundraisers because that's why I brought Charlotte's checkbook! Actually it seems like the latest update is that things are a-ok but we will see tomorrow. Appointment is for 9:30....let's see how long we stay at the hospital tomorrow.

I am sure this will all get straightened out but it's another one of those added stressors that we just don't need.

In the meantime, we actually got a call from the Make-a-Wish foundation today. They had received our application and approval letter from the doctor and are beginning our wish process. In a few weeks, two volunteers will visit Charlotte and try to determine what her "greatest wish" would be. For those who don't know, Make-a-Wish is for kids from 3-18 who have terminal OR long-standing, chronic illnesses that require treatment of 6 months or more. Obviously, Charlotte qualifies. We shall see what the "princess" will ask for (Disney????)

ALSO, we got a call from someone in Andrew Stanton (yes, Pixar fans, THE Andrew Stanton!) regarding Roger's recent email. She just wanted me to know that they had received our request and she couldn't give me an answer yet because they had to check with Disney since (as she put it) "they own us" (meaning Pixar). We shall see. We have also since Roger's email found out about some local Pixar connections and they are working on something on Charlotte's behalf. Perhaps a signed poster, t-shirt or something.

I think that's all we have to report for now.

Rachel