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

We're back...

We have had essentially three days of no email, no phone, no internet. Man, was it weird!! It didn't take us very long to relax, though.

Saturday evening (before our retreat officially began) Roger and I went out on a "real" date. Our first date since Charlotte had passed. We went out to dinner and then went to see Avatar in Imax 3-D. Since the 7 PM show we intended to see was sold out, we hung around Barnes and Noble and Target until we made our way to the movie. The movie was wonderful! We had a really good evening out.

Since we didn't make it home from the movie till almost 2 AM, we took our time getting things going on Sunday. We left the house at about noon and set out towards Nelson County. We meandered and stopped at a few wineries along the way, arriving at Bryan's Oasis at about 5 PM.

Don't know if we've posted about this yet, but Bryan's Oasis is a 2 bedroom cottage in the middle of the George Washington National Forest. The Graeser family started this retreat a few years ago in honor of their 21-year old son Bryan who died from cancer. They work in partnership with Noah's Children to make this possible for grieving parents.

We were free to do as we pleased while we were there while having meals cooked for us and a roaring fire kept going in the wood stove. It was peaceful and relaxing. On Monday, we took a scenic drive around the area and Roger actually "got his line wet", doing a little fishing. I did a lot of reading and relaxing.

This afternoon, it was back to reality. Once we got to I-64 we finally had our email and phone access back. Fortunately, there were no emergencies and only a few emails to attend to. Now the real work begins. I think we are both ready to begin jumping back into work and "real life". We're going to try to keep our control and go in baby steps!

Seems like plans are coming together for the Memorial Service. The first of the family will start to arrive tomorrow and more will be coming in over the next few days.

Ch-ch-ch-ch-changes...

No, that's not my teeth chattering, although it is QUITE cold. It is definitely winter here in Virginia as I can see it is rather chilly throughout most of the country. These are days when I am grateful for my fireplace and a fairly well insulated home. We were blessed with a delivery of wood from Noah's Children! I can't stop talking about what a wonderful organization they are! They have gifted us with not only their medical and counseling expertise but bring frequent gifts of fresh bread, restaurant gift certificates for very important dates, the occasional hazelnut latte, and now a whole truckload of firewood! Amazing! We'll say it again: if you need a worthy cause to give your time, energy, or money too (besides CJSTUF), consider Noah's Children.

Charlotte is still here. Dr. Archuleta came to see her today and his latest assessment is that she is slowly changing. There is definite progression in her breathing, color, skin tone, etc. It's just a slow process and she keeps hanging on. He is hypothesizing that it should be anywhere in the next 24-48 hours. That would fit in with the 7-10 day window since her last bit of "substantial" nutrition. We did tell him that if he was wrong, after the 48 hour window passed, we are going on a trip to Aruba and HE can stay here with her till she finally decides to get those butterfly wings out.

We have tried every possible permutation in this vigil. We have sat at her bedside and held her, we have sung to her, we have given her quiet, we have left the room (and even the house), we have told her repeatedly that WE are ready for her to fly. She will go when she goes and there's no changing that. I feel that our life is at an odd standstill. I find it hard to do so many things, not out of grief but just because I feel like I can't move on in many ways until she finally passes.

Roger and I did go out briefly (together) yesterday and it was refreshing. Kathy L. and Kolbey stayed with her while we went out to lunch and ran a few errands. It was so nice to be out of the house and it really energized me. We had planned a date for earlier last week and it got delayed when her condition seemed to change and we thought we were on the verge. I'm glad we didn't procrastinate much longer as I was going a bit stir crazy.

I apologize to anyone who had hoped to read to Charlotte and did not get their chance. We decided to put the reading vigil on indefinite hold and I think that at this point it is probably finished. While I loved having the energy in the house, the contrasting quiet and relative lack of visitors has been refreshing in its own right. I think that the tone set in the house has been perfect in each case. Now is a time for more quiet. Thank you to everyone who was able to come (or Skype) in and thanks to those who continue to leave us notes of encouragement on Facebook or via email. We appreciate the constant "vigil" that has been created in support of us as well.

Plans are coming together for her memorial service and I will share some of that information with you now (especially for those of you that are planners). The service is scheduled for Saturday January 16th at noon at Blackwell Auditorium on the Randolph-Macon College Campus in Ashland. Rev. Ed Tracy (from St. James the Less) and Rev. Kent Rahm (from Trinity Episcopal in Fredericksburg) will be officiating. There will be a reception to follow at Duncan Memorial church (next door). Kim Thies and Meredith Hayes are heading up the organization of the reception. If you would like to help in any way, please contact me and I will give you their contact information. (I don't want to publish their phone numbers on our blog directly). They have spoken with us and know what our wishes are in terms of the reception, etc. and we are letting them run with it.

As a reminder, the service and reception will be as kid friendly as possible. We will have children's activities and space for the kids (art activities, etc.) as well as a few people who have already volunteered to watch kids during the service if needed. The service will hopefully have a very celebratory tone to it so please feel free to bring children if you are comfortable with that. Also, the dress code is PINK and/or PURPLE (no somber black allowed).

For anyone who is out of town or cannot make it, we are hoping to have the service videotaped so we will make DVD copies available as soon as possible. We hope that anyone who wants to can attend but we also understand that not everyone will be able to make it. Some of you have already said your goodbyes to dear Charlotte and your efforts have been recognized.

I think that is all the news I have to report. Thank you, dear friends and family, for your constant vigil. We love you!

The Best Christmas

It was a really wonderful Christmas, full of traditions and joy. On Christmas Eve, we all got ready for church and made our way to the service. Charlotte was dressed in her most adorable outfit (as usual). We even opened a few presents before church. Roger and I are horrible about waiting. After church, we came home to what has become our "traditional meal" of pizza and wine. A nice, low-key, easy (and yummy) way to celebrate the day. Once we had all eaten, it was time to open presents. The family presents were opened one after another and we marveled at ALL the stuff for Charlotte. There were, as usual, about twice as many presents for Charlotte as there were for Roger and myself combined. Tis the reason for the season, eh? It's all about the kids.

Once all the family presents were opened, it was time to settle into bed. Charlotte got to sleep easily so Santa could do his job. When the morning dawned bright and early, we took Charlotte into the living room to see what Santa had left. We were excited to share in her glee as she opened the "pony phone" that she had been requesting for the last four months!

Yes, it was a wonderful Christmas.

Last year. 2008.

So much has changed since then. At that time, we were oblivious to all of this. Unaware of the year that lay ahead. Unaware of the monstrous tumor that was already a substantial size and growing in her brain. Charlotte was a "normal" kid. Singing, dancing, working on being potty-trained, playing with friends, already beginning to read. She was doing all the things that preschoolers do. For us, cancer was something that happened to other people. Other families. Cancer was the thing that we fought through walk-a-thons and annual donations to St. Judes. We didn't know we would very soon have to go nine rounds in the ring with Cancer...only to be knocked down over and over throughout the year.

This Christmas, on the other hand, has been pretty sucky. (To put it bluntly.) Despite everything that our network and friends have done for us (and there have been wonderful things coming our way for which we are MOST appreciative), it is still just a difficult holiday.

It's challenging to be joyful.

We did not engage in many of our regular traditions: the annual Christmas letter did not go out (but you do get daily blog posts...how GREEN of us!); we did not participate in the regular gift exchange to family and friends (although we have been the recipient of some very healthy and very yummy food and wine); we did not attend Christmas Eve service although we did Skype into the service at my home church in Daytona Beach where Aunt Jamie was singing (beautifully, as usual).

I realized something last night as I was finishing Charlotte's late evening medications and preparing to fall asleep on the trundle bed next to her: in many ways, she is already gone. She may be breathing and eating and even responsive to our stories and queries, but the Charlotte that we knew and loved...her personality and her spirit and her voice are all but gone. She cannot walk. She can barely talk. She cannot interact with us as she could even two weeks ago.

Even the most innocuous things will make me sad. I was watching a Rice Krispies commercial where the mom and two kids are decorating rice krispy treats for the holidays. The girl in the commercial is around four. She is talking and decorating and participating in the activity. And I think: Charlotte will NEVER do that again. She couldn't do it now if she tried. These are the things that make me sad.

I went to work yesterday and it was a mixed experience. It was nice to see some of our regular customers and I was able to use the time to get caught up on some very important RNR work. It also gave me an opportunity to get out of the house. All good things. Then, you get the random person who comes in who knows about Charlotte's situation but has not kept up with the blog posts and perhaps has not seen us in a few weeks or months. They say things like, "So is Charlotte excited about Santa?" or "So how's that pretty little girl of yours doing?". They obviously don't know. And how do you tell them? Do you ruin their Christmas? Do you say, "Well, she's in the final stages of her life right now and we don't really know how many days we have left with her. She is completely bedridden and hooked up to medications constantly and she's going to die. Other than that, we can't complain."

Yeah, there's no right answer to those questions. You just kind of smile, nod your head, say something obscure like, "She's ok" and move on. But it's comments like that which will smack you back into reality and make your heart ache.

I am ready for this year to end. More importantly, I am ready for Charlotte's life to end. I will miss her when she is gone. She will leave a huge hole in our lives and in my heart. But her life as we knew it is already over and this has been the most difficult year of MY life. I hope this post doesn't ruin everyone else's Christmas. As usual, I am seizing the opportunity to be brutally honest.

Before I close, I will just piggyback on Roger's previous post about the Butterflyaway event on December 27th (and probably again on January 2nd). I think this will be a great opportunity for parents to help their kids understand what is happening (and what will happen) to Charlotte. We hope that as many people who want to attend can make it. If you cannot make it and still have questions about how to handle this with your kids, please let us know individually. We have a lot of resources through Noah's Children and ASK that can be of service. Also, if you as a parent want to attend without your kids just so you can ask your own questions or figure out how to share this information on your own, that is ok too.

A Blessed Christmas and a Peaceful New Year to one and all.

Butterflyaway

To all our local network:

Kathy Lesher, the social worker from Noah's Children, suggested we have an event for children before Charlotte's passing as a way for them to prepare for it and to say goodbye. There will probably be more than one and the first will be this Sunday, December 27th at 2pm. For want of a better title, I'm calling it, "Butterflyaway" and it will be short and simple. We'll read the Very Hungry Caterpillar, do some butterfly arts and crafts in the art room, and then the kids can play in the gym for a while.

Charlotte will not be there which means either Rachel or I will not be there but the other one of us will be.

Kathy will also be available to answer anyone's questions. She might also enlist the aid of an organization called Full Circle Grief Center.

This event is free and open to absolutely everyone. Please email me if you plan to attend. We will open the 4:00pm slot as well if there is signifigant interest. A third possible event could be Sat, Jan 2 at 5:00pm.

This is extremely short notice, I know, so I'm hoping I could talk everyone into spreading the word.

CJ is resting comfortably. There have been many, many wonderful readers through the house and she has been awake about half the time. We've moved her Dexamethosone back up to 3ml from 2ml to see if that will help her swallowing difficulties.

There is an accupressurist/accupuncturist coming over tomorrow who has been recommended by Dr. Anna. Her name is Elizabeth and she told me that she has worked with a patient with swallowing troubles before and has had significant but temporary success improving the patient's ability to get food down. Temporary is all we need.

As I type this, I realize this is the anniversary of my Grandpa Homer's death (Dec 23-This will probably post after midnight). This kind of stuff puts quite the surreal tint to the holidays, doesn't it Gramses?

Mama's Perspective

Roger did a really great job of capturing the events of the day but, of course, I have to add my two cents. It helps that it's after 2 AM and I'm just not ready to sleep. I'm kinda sleepy but I just have a bundle of nervous energy.

Fortunately, Charlotte and Roger are sleeping for me. As Roger mentioned, the latest IV doses of the meds (at 8:30) really relaxed her and put her "out". In fact, she was so relaxed at 12:30, I didn't give her another dose of the morphine or atavan. She's still snoozing and I go in to check on her every once in a while. I actually just changed a very wet diaper which is a good thing, I guess. The child hasn't eaten anything in over 30 hours!

I can't get over the perfect timing of everything. Our trip to Florida was so perfectly orchestrated. She was active, engaged, and enjoying herself up until the end! If our trip had been extended by even a few days, we would be in a totally different situation. Who knows...maybe she just was ready to let this happen to her now that the trip was over. The change in her since last Saturday is unbelievable. The old cocoon analogy is very apt. Her body is closing in on her and she is shutting down. I have never experienced this before (with a family member or a friend) and it is bizarre and fascinating.

I want to express how fabulous the Noah's Children staff have been. They are so matter of fact about the process but at the same time they are full of compassion and caring. I appreciate both. It must be an incredibly difficult job to deal with this on a daily basis and they handle it with such empathy, ease, and kindness. We are extremely grateful.

Seriously planning her memorial service today felt both good (that's the organizer and planner in me) and incredibly surreal (I am planning my daughter's memorial service!!!). At the same time, it was not nearly as SAD as I had anticipated. Further proof that I am ready in many ways for this next step. There is an emotional part of me that keeps losing it at every turn but there is a strong part of me that is ready to let her fly away. When the time comes, we will celebrate her life.

I have no idea how the reading vigil will proceed at this point. There is a very good chance that if you come to read or sing, CJ will be asleep. Remember that is OK. As Roger mentioned, the steady stream of visitors is a good thing. Looks like Richmond will be getting some winter weather in the next 48 hours so if you have signed up to read and find that you can't leave your house, please know that we will understand.

Finally, I want to send out another request from our Denver Network for a point person to help a very special family in the Denver area. I need a liaison who can work with this family (mom, dad, and twins who are 5). The one girl has recurrent Leukemia and the family is in need of fundraising help/donations, meals, and assistance with childcare (among other things). In the spirit of CJSTUF, let's find a way to get all those Denver folks who went to high school with Roger (or other friends/family in the area) to help a family in need that is just like us! If you can help, please email me at rachel@cjstuf.org You will not need to do all of the work but I want to have one person who can work with the family, determine their greatest needs, and then contact others in the Denver area (via this blog or other means) to help them the best way possible.

Thanks for your love and support.
Rachel

Settling In

Our return trip was easy and relatively uneventful. At least the traveling part.

The day before, Charlotte slept a lot and seemed to be getting more and more uncomfortable. She didn't seem to be in any acute distress but she just seemed to have a lot of discomfort. Her breathing rate has increased and we have noticed more difficulty with her ability to chew and/or swallow her food. She also seems to have more difficulty verbalizing her needs or responding to choices. All in all, Roger and I were noticing changes in her behavior and physical abilities. She can't really walk without trunk support anymore either.

We ended up spending the night at my mom's house instead of the condo. Roger and I got a little bit of sleep but I think it's still more sleep than my mom got. She stayed by her side all night. Knowing my mother, she probably slept little but I know that was time well spent as far as my mom was concerned. The morning dawned rather darkly (emotionally). It was difficult to say goodbye to my mom at the airport and I know it was very difficult for her as well.

As mentioned, the trip through the airports was pretty easy. Charlotte was a good traveler and slept/rested on most of the flights. She did grace us with a MASSIVE poop during the trip from Charlotte to Richmond. Fortunately it was a short flight and Roger took on the challenge of changing her in the tiny airplane bathroom. Kudos to him!

We were met by our limo driver in Richmond. It was funny because when he picked us up, he said that he had NEVER picked up folks at the airport before. Apparently he is an "event" limo driver (for proms, weddings, etc.). It was pretty clear that he'd never done this before since Roger had to actually ask him to help us with our bags. While I navigated CJ in her stroller with a backpack and two bags, the driver carried two small duffel bags, and Roger carried: the car seat, two bags, AND rolled the huge suitcase. So much for customer service. Anyway, it wasn't a big deal and we did enjoy our ride home. CJ conked out again as soon as we got in the car and stayed asleep till about 5:30 this morning.

This morning, I went to Target and Ukrops to get some groceries. Roger and I are on a serious "healthy eating" tear. We have indulged and imbibed way too heavily, not just in the last two weeks but in the last YEAR. I am done with feeling overweight and sluggish. So I filled the pantry and fridge with healthy foods. Hopefully it will last. We will encourage anyone that wants to make us meals to err on the side of healthy rather than comfort. Our mid-sections are in serious need.

Thankfully, we came home to a beautifully clean AND decorated house. Our friend Jan recruited some of her friends and they seriously reorganized our house in our absence. It was needed and we were grateful. Now I'm afraid I'm going to mess it up but it was nice to come home to a clean house. Plus there have been additional Christmas decorations added to create something of a festive atmosphere. I am very grateful for these angels.

Our afternoon consisted of a meeting with our team with Noah's Children. We were finally able to meet Dr. Archuleta, CJ's new primary care physician. Nurse Cathy and "the other Kathy" (our social worker) were also there. We shared our observations over the past few days as well as Charlotte's current medications and Dr. Archuleta had a chance to talk and interact with Charlotte a bit. By the end of the visit, we had discussed numerous options and ideas. While it is possible that some of her fatigue and symptoms could stem from "travel exhaustion", there was general consensus from all of us on the team that she has changed in the past two weeks (and most definitely in the last few days). Most likely, this is due to progression of the disease.

Dr. Archuleta wants to alter her steroid dose for a few days to see if it changes anything. In addition, he has given us a prescription for morphine (a very low dose) to hopefully regulate any pain she is experiencing as well as some of her breathing difficulties. We are discussing more and more what our options and plans will be when the time comes. Man, this sucks.

The team is returning on Thursday to reassess our needs and Roger and I will actually spend a good deal of time with Kathy to talk about some of our wishes for Charlotte once she passes. It is so surreal to have these kind of discussions. I can't even explain it. It's like an out of body experience.

After the team left, Charlotte watched some TV and hung out with Uncle Kolbey for a bit. I tried to get a few things done (catching up on emails, unpacking a few things, etc.) before he had to leave for his concert at the HAAC.

Aunt B (Roger's sister) arrived at about 5 this evening and Charlotte got to spend a little time with her before she fell asleep. Those of you following us on Facebook know that Roger was trying to find out if Santa came through on the firetrucks already (those of you who live in Hanover County know what I'm talking about). Well, apparently Santa's visit to our neighborhood was last night, while we were flying over Georgia. Not to be deterred, our network jumped to the task and Meredith contacted the fire station about making an extra stop for Charlotte tonight. They agreed to stop by our house before the rest of their run at about 6:30 tonight. Of course, Charlotte fell asleep about 15 minutes before they arrived!! I tried to rouse her a bit to say hi to Santa but I think she was a little bit out of it. I am still grateful to the Ashland Fire Dept. for coming by! Thanks to Meredith for her help!

Roger actually went to work tonight. There was a FACES event and Roger and our RNR standby Anna went in to entertain the troops! He's on his way back as I type this. I think he is definitely ready to get back into the RNR groove.

Regarding the Reading Vigil AKA Reading to CJ: A few of you have contacted me via the website and/or email about reading to CJ. I just want to clarify. I am going to work on the "official" schedule. There will be probably be times blocked out when we are NOT available for reading. Otherwise, pretty much any time is open. When you email me, please do so through the website and please let me know the best times for YOU and whether you expect to stay one hour, two hours, etc. I have not updated the calendar and/or website yet but will do so by tomorrow. If you have contacted me, I will try to get back with you by tomorrow as well. For now, I think we will keep the reading to between 6 AM and 10 PM but eventually, it could be a 24 hour thing. It may fluctuate based on her schedule. If you are from out of town and want to SKYPE in via webcam, that is a definite possibility. Also, CJ does NOT need to be awake. Please be ready to read to her even if she is asleep. That's part of the plan. It also does not need to be strictly reading. We welcome music, songs, or anything kind of "mellow". It could also be visiting time. Please do not bring any gifts for CJ when you come to read. Your visit is a gift beyond measure. You may bring a special story to SHARE but not to leave. We also have many books here at your disposal.

Before I close, I want to share something specifically for our Denver network: a family that we met in Houston lives in the Denver area. They just returned from a four month stay in Houston and they are in need of pretty significant assistance. I know that we have a great network of friends and family in the Denver area who would like to help us. Well, I would like to make this family the first "unofficial" recipients of the CJSTUF goodwill network. I need one person from the Denver area who would be willing to act as point person and liaison for this family. I think right now, aside from the moral support, they need meals, financial assistance (fundraisers?), and some help caring for their other daughter while they deal with their sick daughter's (probably terminal) illness. This point person would contact the family (with my help), find out their needs, and then network with the rest of our Denver network to assist in any way necessary. We may use this blog and our website as a vehicle to assist them as well. If you live in the Denver area and think this might be the job for you, please email me personally at rachel@cjstuf.org This family has no family in Denver to help them. Knowing how much we have benefitted from our local network, I can only imagine what having local assistance will do for them as well.

I think that's it for now. I will sign off and wish you good evening. It's good to be home.

More of the Same?

There isn't a whole lot of news to report but I suppose an update of some type is in order.

Charlotte spends her days eating, reading, watching tv/movies, and sleeping. Roger and I have been puttering around getting things ready for our upcoming trip, doing Foundation "stuff", staying on top of activities at RNR....sometimes I wonder where the time goes. It's very nice to just snuggle up with her and watch movies sometimes.

On Monday, we journeyed out in the rain for story time at the Ashland Library. We saw a few friends and it was good to get out of the house. Later, I met with our social worker from Noah's Children and then went to RNR to catch up on some work. Charlotte's Devon came by to spend the day and she had a great visit. They read books, Charlotte ate, and they watched a few shows together. Good bonding time.

Tuesday we had a nurse visit from Noah's Children and then ran some more errands to get out of the house. One ominous errand was to go by the doctor's office and get Charlotte's DNR (do not resusciatate) order signed by the physician. It seems very strange to have something like that in our posession. I just look at it and it makes everything very REAL.

Lunch was at Chick-fil-A (of COURSE!) and Charlotte ate well. She eats slowly but well. Sometimes it's very difficult to be in a place with so many other children because you immediately see the differences between her abilities and those of typical children. It's still a shock to me to see kids much younger than her who are able to manipulate stairs, climb the playground equipment, and feed themselves. It kind of slaps me back into reality. Yesterday it made me really sad. After our day out, we returned to the house and Charlotte and I watched the Tinkerbell movie (the new sequel, actually) to rest.

Last night, Roger and I had a much-needed date night. We went out with some friends to Emilios Tapas out in the Short Pump area. It was a small group and Roger was the only guy. (poor thing!) We had a good time eating, drinking Sangria, talking, and generally enjoying one another's company. It was a great escape and much thanks to Jan Light and her friend Anne for coming over to hang out with Charlotte. I think they had a great time with our girl as well.

This morning we are off to Children's Hospital to get a new stroller and (hopefully) a walker that may help Charlotte get around a little more independently. Her balance is WAY off right now and she can't walk well without holding one of our hands. We don't have huge plans for Thanksgiving but we've got a LOT coming up in the next week so it will give us some time to get ready.

Gotta go take a shower and face the day.

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

We Are HOME!

Charlotte had a great day yesterday. She was moved off the PICU to the regular peds unit (7 East) and spent most of the day entertaining herself and everyone else. By the time I got there in the mid afternoon, she was singing and just looking her adorable little self.

She has had two good sized poops in 24 hours (yay) so we are all pretty happy with the way things are moving (so to speak). She is also eating and drinking pretty well. We took her for a few walks and she was very motivated to go. In fact, we had to almost run to keep up with the IV pull coming behind her! She visited one of the playrooms to do some watercolor painting and we also had some visits from the hospital preschool teacher.

If all goes well, she should have a CT scan again sometime today (just to be sure everything is fine) and then she will go HOME. Hooray.

We still don't have official word from Dr. Khan yet about the next steps but I spoke with our nurse practitioner yesterday and she is in communication with him about where we go from here. Hopefully we should have some answers soon. I am guessing radiation will be the next step so it's just a matter of picking a date and starting talks with the radiation oncologist.

Gotta run and get ready for a busy day!

Rachel


Update: We are HOME!

She had a good night and we FINALLY got a CT scan at about 3 PM. Dr. Tye had basically given the clearance to go home before then but they had to do the CT just to be sure.

In the meantime, she had a productive afternoon that included a visit from Ms. Nodra, the Pre-K teacher on the unit. Ms. Nodra has had a chance to really get to know Charotte over the past few months so she brought some great activities. In about 45 minutes, Charlotte worked on letter sounds, letter names, puzzles, counting, writing (numbers and letters) and a few other great skills. It was good exercise for her brain.

We came home to a welcome home dinner over at Granny Dot's and now it's storming like crazy (yay for rain). Oh, she also called Gramps in Florida to wish him a Happy Birthday!

Grandpa and Grandma Bonita leave tomorrow to go back to TN. MUCH MUCH MUCH thanks to them for all the help this past week. We couldn't have done everything we've done without them.

We will go by Qdoba tomorrow to pick up our fundraising check from Lisa. No word on the final total but we are excited. Speaking of which, they are doing ANOTHER fundraiser at the Willow Lawn store tomorrow for an organization called Noah's Children. There is no burrito contest but it is another "portion of the proceeds for every meal goes to the organization" deal. If you are in the Willow Lawn area tomorrow, please come out to support them. They are a great restaurant with good food and they do a lot of good work for the community. I think the fundraiser is basically all day.

My good friend (make that GREAT friend) Amy will be flying in from Ohio on Friday to help us for a few days. Then Aunt Phyllis will come for a turn. It will be a busy few days with the Strawberry Faire on Saturday and a Southern Horizon gig for Roger. Not to mention our normal busy stuff. Hoping to make it to the church picnic Sunday too. We shall see!!

It will be nice to be home for a bit. I hope we hear from Oncology in the next few days with some answers.

Signing off...
Rachel