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

Sgt. Mommy, reporting for duty

Sgt. Mommy, reporting for duty. I got in Saturday after working some fabulously fun classes at Romp n' Roll in the morning. The flights went smoothly and my Ground Angel was right there to pick me up as I came out of the terminal. I arrived at RMH and while Roger had noticed me, Charlotte didn't. She was sitting on one of the couches in her adorable pink sundress and new cowgirl hat. I sidled right up and sat down without saying anything. It still took her a minute to realize who was sitting next to her. When she did, she smiled at me and handed me the sugar cookie she had been eating, saying, "You can have this, Mommy!" SWEET! Soon after that, Merrilee arrived to babysit and Roger and I went out. We didn't do much of anything. We just went down to one of the shopping areas near the medical center, sat at a diner with some tea and drank and talked. Even though we get to talk on the phone almost every night while we're apart, I have found that this time together on our Saturday "layovers" has been a good way for us to decompress and process our emotions and events during the time apart. I have said it before but I will say it again: I feel so lucky that Roger and I have a very strong marriage because I don't think we would have gotten this far without each other (and our love for each other). It also helps that I think we have approached this crisis in our lives in relatively the same way. We're not always in the same place at the same time, but I think most of the time we can really see and understand where the other person is coming from. That helps a lot.After our chat, we went over to the Chocolate Bar again (that place is DIVINE). I had a chocolate covered graham cracker and Roger had a chocolate covered Nutter Butter. They also have chocolate covered twinkies, chocolate covered cereals (like cheerios and golden grahams) and chocolate covered fruit of all kinds. It's paradise!! We relieved our sitter (thanks again, Beasley family!) and put Charlotte to bed. That didn't really happen till after midnight. In fact, I think I was asleep before she was (just one more book, Daddy!!!) but we all slept in this morning. I made breakfast downstairs and then we headed out on our adventure. Today we decided to experiment with the metrorail. We walked to our closest station (about a mile from RMH) and then rode the line towards downtown. It's just one line (north and south) but it intersects with bus stops and other public transportation to create this pretty complex and efficient system. We were able to see many aspects of the downtown area on our ride to the end. Then we exited the train and went exploring. Thanks to the iphone (and a really cool app called Around Me) we found a park near Minute Maid Stadium (where the Astros play) called Discovery Green. According to Wikipedia, the park was built last year and has a water feature (fountains the kids can play in) a playground, a small pond with radio controlled sailboats, and a cafe. It was very hot so the fountains seemed nice but, of course, Charlotte couldn't get soaked because of her central line. She and daddy waded in just a little bit (enough to get their feet wet) and then we went to the cafe for lunch. The lunch was on the pricey side but very yummy. They had a Kobe Beef Hot Dog which, if you know anything about Kobe Beef is (as Roger says) kind of like making a Lobster Hot Dog. Seems kinda weird to put meat that good into a hot dog...but whatever...We were excited to see that the restaurant used compostable and biodegradable plastic containers to serve the food. Very environmentally conscious of them!I had a salad, Charlotte had a milkshake, and we shared some sweet potato fries. Then it was about time to head back to the metrorail. We exited around the zoo and took a different route back to RMH. Then Roger showered, packed, and we got ready to say our goodbyes. Overall, Charlotte is doing great. I really can't expect too much better. She is very pale and it is obvious that she will need the transfusion we have scheduled for tomorrow. But she is eating, pooping, and she is the most social around other kids and adults that I have seen her in weeks. We met a girl named Rachel on the playground today and she thought it was the funniest thing. She said, "Mommy, she has YOUR name!" She's the second "Rachel" we've met (besides me) since we've been at RMH so it kind of rocks her world.I don't remember if we've given this "shout-out" yet, but a HUGE thank you to Good Shepherd Lutheran Church in Morristown, TN. This is Roger's dad's home church (The "Bonitas" to those of you who follow this blog regularly) and they held a pancake breakfast in Charlotte's honor that has raised what should be almost $3000 once all funds have been matched by Thrivent, etc. Much thanks and many blessings!It is very nice to think that we are in the home stretch of radiation. I am optimistic that we will work out all our insurance troubles this week and that we can weather these next few weeks with minimal trouble. Then it will be home to hopefully a less stressful regimen. I know we won't be done with treatment, but I am very hopeful that the worst will be behind us. Let's start getting that Disney trip planned, eh?

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