Home Again...almost...

Our whirlwind tour of Colorado was fantastic. We loved celebrating Cerisa and Patrick's nuptials. The wedding ceremony itself was Thursday but the celebration lasted all week long. There was an out-of-town family dinner at the Metropolitan (formerly JeffCo) airport on Wednesday night. Then the actual ceremony and reception on Thursday. THEN a hog roast picnic for friends and family on Friday and FINALLY a wind-down at Cerisa's parent's house (Roger's brother) with opening of wedding gifts and good ol' hanging out.

Here are some links to pics of the WEDDING the HOG ROAST and other miscellaneous pictures from the weekend. Roger took most of them but he even let me play with the camera a few times. The weather for all the events was perfect and any rain, storms, or other glitches were few and far between (see the pics of the HAIL STORM that we experienced yesterday).

In between the wedding events, we did some driving up in the mountains to Estes Park and Georgetown. In Georgetown, we met our friends the Goerolds. We had first met them in Houston and little Allie passed away earlier this year. We had a very nice visit with Lynne, Tom, and their other adorable (and VERY smart) daughter Sarah. It was good to not only visit but commiserate a little and do some emotional "checking-in" with one another. Turns out we're all kind of dealing with the grief in our own way but the similarities sure seem to outweigh the differences.

The emotions were up and down the entire trip (at least for me) but overall it was a very relaxing time and it was very good to see friends and family...especially for such a wonderful celebration. Roger and I had some good bonding time where we could focus on one another and our relationship (rather than work) for a change. That's always good because as much time as we spend with one another on a daily basis, we often need that opportunity to reconnect.

So this morning we said our final goodbyes to family and headed to the airport. The flight into Atlanta was kind bumpy due to the weather. We had a good 3 hour layover until our Richmond flight. Then as they were preparing to pre-board, they asked for volunteers to bump to the next morning's flight in exchange for compensation. Roger and I have done this before so given that we didn't NEED to be back for anything on Monday, we kind of jumped at the chance. They put us on the list and told us they would let us know. The boarding process began and the time ticked away. They didn't call our names to board. Then, just as we were sure we would be staying over in Atlanta, they called us to board the flight. We ran down the jetway, settled into our seats, put on our seatbelts and...wait....what was that? The gate agent came back and said they needed us to voluntarily bump after all. Sooooo we disembarked and headed BACK up the jetway. PSYCH! There were four of us in total that were bumped from the flight. We all made small talk as we received our hotel and meal vouchers plus (wait for it) TWO round trip tickets EACH to anywhere Air Tran flies good for the next year. So who wants to be my best friend and take a trip to the Bahamas with me?

We are currently in an Executive Suite at the Westin hotel for a few hours, hopefully getting some rest before we head back to the airport for the early morning Richmond flight. The room is very nice, at least, so that's a plus!

Now some business to attend to:

Our next official CJSTUF fundraiser is in progress. Dot Heffron and Jody Harmon, local Tupperware representatives, are our Home Based Business for June. Supporting CJSTUF is easy. Go to our website for a link to the online fundraising page. You can order from anywhere in the country. Sales must be in by June 23rd. Please share the link with friends and family. I think Dot and Jody may be organizing some local parties as well. If you are interested in hosting a local party to benefit CJSTUF during the month of June, email me and I will forward your information to them.

With that, I will sign off from Atlanta. Our next post should be from Richmond....

Long and Busy Days

Did you miss us?

It's hard to believe that our last post was on Sunday. These days have been long and full of action (and tiring...what else is new?).

Trip to the clinic yesterday was L-O-N-G and frustrating for daddy. Her numbers are low but not horrible so she was able to get both medicines. Unfortunately, she refused to take the temozolamide in any type of food no matter how much we tried to convince her that it wouldn't taste bad (and it shouldn't). She's way too smart for us now and knows that when we bring her food or drink that is unopened, it is already "tainted" with something.

Anyway, Roger took the prescription to the compounding pharmacy and they made a concoction. Fortunately, we only have to do this medicine once a day until Friday (for now). The topotecan infusion also seems to be going well.

Oh, and she's still having problems with no poop. I think it might be the Zofran that's stopping her up so we're back on the mag citrate regimen.

She's been very quiet and mellow lately. She definitely gets tired quickly. I took her to OT today and she worked hard. Then we had to go back to the orthotic place to get her brace readjusted. The PT wants her to go back to wearing the brace again just to help support her muscles. They are still carrying a lot of tension and it should help with the overcompensation.

In other news:

We found out that BOTH MD Anderson AND Shands Jacksonville are in our insurance network AND they should be able to find us radiation oncologists in-network at both places as well AND the insurance will cover the proton beam radiation (yay). This opens up a whole host of possibilities and I think MD Anderson is back on the table for options. While we know we would have great family/friend support in Jacksonville, MD Anderson is already going to be fully supportive of her protocol (since they created it) and we wouldn't have to get to know a whole host of new physicians. Plus, we know they will accept her in TX. Not so sure about FL yet.

SOOOO...Roger and I have been doing some talking and we will talk some more tonight. Look for a big announcement tomorrow I guess.

The other potentially bad news is that wherever they go, they may want her there as early as the end of next week. That's right. We may have to reschedule her birthday party. Stay tuned and we will let you know. Kind of a bummer but we're learning how to go with the flow....

Meanwhile we have also been looking at the transportation logistics. Odds are, one of us (probably Roger) would fly out to (wherever) initially with Charlotte and we would switch places about every two weeks. Whoever is in VA would cover RNR and hold down the fort. The other person would handle Charlotte and all the medical stuff. Oh joy. It really doesn't make me happy as I know that part of why and how we have survived all of this so far is because Roger and I make a great team. This goes for parenting as well as all the business stuff. Potentially, Roger and I may go over 6 weeks without some quality time together and we haven't done that since before we got married (let alone had our lives in crisis). Yes, we know we will need lots of support and we will plan to seek it out!!!

Fortunately we have some airline credits saved up on AirTran that will probably help with tickets and the fundraising efforts will definitely help with travel expenses. We will be investigating lodging options (apartments, Ronald McDonald House, etc.) once we make a final decision.

So that's my update for now. More to come. I'm hungry and dinner (cooked by the 'rents) is calling...

Rachel

What a Good Day!

What a good day! While I'm still not over feeling exhausted all the time, at least I'm not a bundle of nerves and anxiety over the unknown. that helps a lot.

Charlotte had a great day with visits from Wyatt and Heather, walks around the neighborhood, lots of exercising, and lots of eating.

We have a plan and an itinerary. We will be flying on Air Tran out to Houston on May 21st and returning on May 23rd. Our meeting at the clinic is on May 22nd. Thanks to our wonderful network of resources, we have learned about shuttles from the airport to the hotels/hospital area (hence no need for a rental car) as well as some good hotel accomodations for our stay.

Also, thanks to our wonderful staff at Romp n' Roll (as well as help from a few of the other Romp n' Rollers in the Richmond area), I think we've just about got coverage at the store covered while we are away.

We are still planning on surgery on the 27th. My mom leaves tomorrow to go back to Florida (bye Granny!). Roger's dad (Grandpa) and Juanita Bonita will be back her on the 26th in preparation for her surgery and we're getting some other "ducks in a row" for the weeks to come.

It's nice when the stars seem to align.

On a not so good note, it looks like the insurance appeals are not going to go as hoped. After our second appeal letter, Humana continues to maintain that we are well within our rights to choose MCV and they are well within THEIR rights to charge us an out-of-network rate for choosing MCV. End of story. The short answer is that I will follow up with our rep from the insurance commission and possibly make one final appeal through our delegate representative who has been following the case to see if he has any "pull" but I think the 8-ball is telling us "all signs point to NO".

Thank goodness to those of you who have led the charge on those fundraisers because we are gonna need them!!

Speaking of which, it looks like the Glen Allen Golf event has been rescheduled for next Wednesday (May 20th) from 7-10 PM. Mini-golf, batting cages, and driving range. Pray for sunshine and come out to see us off to Houston!

We also have the shopping events this weekend. Saturday 5/16: Five-Below (at VCC). You need to bring a flyer. We have LOTS of flyers at Romp n' Roll. 10% goes to Charlotte so stock up on your summer pool noodles, bouncy balls, and other un-necessary junk....

THEN Sunday 5/17 at Everything But Water (bathing suits, etc.) in the Short Pump Mall. I don't know if you need a flyer of some kind for this but 10-15% should go to Charlotte and I understand that there will be a chick-fil-a wheel with prizes and opportunities to help there as well (with food???). Thanks to Torrie for arranging this.

It looks like we will be getting back into town after the Brain Tumor Awareness concert at Ashland Coffee and Tea (featuring Susan Greenbaum and Cheryl Fare). I am SO sorry that we will miss this because I know it will be great. Please come out and support the event for us! There will be a 50/50 raffle for Charlotte and a chance to hear some great music.

That is all I have to say for now. Rumor has it Charlotte will be making an appearance at a Princess class tomorrow. And I get to watch the season finale of LOST tomorrow night. And did I mention that I get my new iphone tomorrow? Should be a good day....Signing off...

Rachel