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

Granny's episode, Kolbey's Birthday

Charlotte has been doing very well. Still eating like a horse and increasing her energy slowly but surely. The tremors continue but that's to be expected.The problem child now is Rachel's Mother. She had what everyone thought was an asthma attack at about 9pm last night and got to ride in an ambulance to the hospital. The real fun began when none of her treatments were effective including inhalers, prednesone, albuterol (all spellings are subject to change), deep massage, boots to the head, nothing worked. Then when the ambulance arrived, they put the mask on her and carted her out the door.I guess they tried to intebate her (put a breathing tube down her throat) in the ambulance before they left but were unsuccessful.When they got to the hospital, they did labs and an EKG and saw something they didn't like so they decided to keep her overnight (much to Granny's chagrin). They ran more tests and decided to do a heart catheterization but found no blockages. Rachel said Granny was having a spasm that should resolve over time but they were going to keep her one more night just in case.
On top of that, yesterday was Uncle Kolbey’s Birthday. At least it was memorable.
Rachel stayed at the hospital for most of the night and I taught her Saturday morning classes (great classes by the way!). We’re still on for all the Halloween festivities this afternoon but I don’t think we’ll make it to the R-MC Field Hockey playoff game at 1pm. Sorry ladies.
More updates as they come.
Rog

The Richmond Mommies hosted a Bake Sale over at the West End Ukrops yesterday.

AMAZING!!!Just to recap the events of the last few days:The Richmond Mommies hosted a Bake Sale over at the West End Ukrops yesterday. There were many wonderful women who baked tons of goodies and/or sold baked goods in the chilly rain for over three hours. They raised over $1000 (I think early estimate is about $1500). Thank you to everyone who helped with extra special thanks to Judy Read and Diane Murphy who were the main organizers. I also understand that the fundraiser at Ebenezer Lutheran in Florida (a church my parents are involved with) raised over $3500 yesterday for Charlotte. That is also amazing! This is on top of the yard sale my friend Amy held a few weeks ago in Ohio that raised about $2100 and the church bazaar at Lakeside Baptist that raised another $1500. I continue to be amazed by the generosity of people. It is so reassuring to know that at least as far as medical expenses go, we are doing ok and will not have to worry. At this point, our biggest medical expense is Charlotte's outpatient therapy bills and I am sure that the recent money raised will help cover this. In addition, once the new year comes, we will have a new (rather large) deductible to pay before insurance starts to cover her medical expenses again. In other news, Charlotte continues to sleep a LOT. She tried to go to the RMC Field Hockey game yesterday. She made an appearance right before the game started but was immediately tired so Roger took her home to sleep again. She did wake up later and they trekked down to RNR for our friend Matthew's birthday party. At the party, she ate at least 7 chicken nuggets (yay!) and ate a few cookies when we got home. I feel like her appetite is picking up a little bit. She was in bed early again last night. Then she woke up around 6 this morning and is now (at 8:30) back in bed. She just can't stay awake for very long. In other news, I am getting slightly more paranoid and just a little concerned about the H1N1 stuff. As I am sure many of you have heard, the flu outbreaks have reached epidemic levels. I heard yesterday on the news that there have already been twice as many child deaths from the flu as they normally have all year (and it's only October). I would normally not be a worrier over things like this but having a child with compromised immunity definitely makes me more concerned. PLEASE vaccinate yourself and your children. I got my first flu shot EVER this year (and have rarely had the flu). I don't think this is a year to take chances. PLEASE do everything you can to keep yourself healthy including eating well, getting plenty of rest, and supplementing your diet with vitamin C and zinc (it really does work!)PLEASE wash your hands rigorously and avoid touching your nose and mouthPLEASE stay home if you feel sick. Do not go to work or send your kids to school if they are sick. It's better to miss a day or two and play it safe than to go out in public and infect others. That is my health-wise PSA of the day...Rumor has it that Roger and I may get a date this afternoon/evening. We will see how the day goes

CJSTUF is born!

It's October!!! Can you believe that it is October???I am very happy about the weather lately. We have been enjoying it as much as possible. Today we are headed over to RMC for the women's Field Hockey game (go Jackets!). Charlotte continues to be a DREAM. We are finally (we've only been home for a month, can you believe it?) getting into something of a routine. Next week we start Velcade again and a new drug. So far so good. The physical stuff seems to be improving slowly too. Her energy is pretty low but she manages to make it through each day. She eats well and she sleeps VERY well at night. I can't ask for much more right now. A few notes of thanks: Thanks to the many families at Three Oaks Montessori who have sent us meals this week. We have eaten many of them already and our freezer is well stocked again. My mom leaves on Monday (boo!) so we will have a nice stash to tide us over. Fortunately, mom will be back in a few weeks (with Gramps in tow!). I think we are going to try to get the Hopecam going on a regular basis too with getting Charlotte to participate in circle time and other school activities. Fingers crossed.Roger attended Charlotte's first IEP meeting last week. What irony! I was supposed to attend but had my makeover session. It was a short meeting and they did initiate an evaluation so we are officially involved in the Special Education process. I'm glad I understand the system. I am hoping that this will enable us to receive some extra support with PT/OT services as well as ease our transition into Kindergarten next year. I haven't received any official numbers yet, but I know that over 211 people had been registered already for the ReeseStrong 5K and Sherry mentioned that about 100 registrations poured in between 9/30 and 10/1. Hooray! I know this will be a fun event!Of course, we are barely approaching Halloween but I'm sure many out there are already thinking about the Thanksgiving and Christmas holidays. I just wanted to go ahead and put out there that we do NOT need anything for Charlotte. Please resist your urge to buy us/her lots of presents. We have been so blessed by everyone's generosity and support throughout what has been a very difficult year. She has plenty of fall/winter clothes, thanks in part to hand-me-downs and gifts from the family. She also has plenty of hats to get us through the winter season and a beautiful coat (purple, of course!!). She also has more than enough toys, art supplies, stuffed animals, books, and blankets. If you truly feel the need to give, please give to one of the many organizations that have helped make this year bearable for us. These include: Connor's Heroes, ASK, Starlight Foundation, Friends of Jaclyn, HopeCam, National Children's Cancer Society, Caring Bridge, and Ronald McDonald House. St Judes is also always a deserving organization. I have a few items on my to-do list with which I could use some help. We are trying to push forward with the creation of Charlotte's Foundation (The CJ's Thumbs Up Foundation) as well as the accompanying website. If you have experience and/or knowledge in the area of the creation of non-profit foundations or if you would like to be a part of the formation of this organization, please contact me ASAP. We definitely need some resources and knowledge to help with the legal formation as well as determining what the scope and focus of our "way to give back" will entail. That's all for now. Hope everyone is out there enjoying this fabulous weekend!!!Rachel

No new growth

Good News!!!!I just got off the phone with Dr. Khan. He (finally) got the scans from MD Anderson. He and Dr. Tye looked at them and he also spoke with Dr. Wolff. They all concurred that there does NOT seem to be any new growth. Any abnormalities, swelling, or growth that appear in the MRI were either there before or may be a result of things settling after the radiation. Furthermore, they believe that with the addition of the new drug (Velcade) to her protocol, we should just continue with things "as-is" and do another MRI in about 2 months (around the first of November) to assess progress. Yay!Can I say it again? YAY!! Huge weight lifted off our shoulders.We have had a VERY busy week between long days at Romp n' Roll, shuttling Charlotte to her many appointments, and the day-to-day business of life. Charlotte and I made it to the second half of the RMC Field Hockey game and then we went with them to Estes (the dining hall) for dinner. Charlotte wore her team jersey and hat and all the girls were excited to see her. It was a very fast-paced, intense game that went into overtime. Their opponent (Christopher Newport University) is outside their conference and pretty highly ranked so the fact that they lost in overtime, while kinda sad, was VERY GOOD for them as it means they are improving and ready to take on some of their conference opponents. Good luck, Macon girls!!! We will miss their next few games as they are all "away" but looking forward to their next home game in October.Even with the hectic schedule, it feels really good to be settling back in to the closest thing I can consider a "normal" life these days. Charlotte has been hanging out at Romp n' Roll more and that has been a blessing. It's great to see her participating in classes, playing with kids, and being a "kid" again. I think that's it for now. Granny (my mom) is on her way to Virginia right now. In fact, her plane may have already landed as we speak. Uncle Kolbey picking her up from the airport. It will be great to have her visit for a few weeks. Got to get back to work but I'm sure we'll have more updates soon. Rachel

There's a massive one coming (fair warning)

Very quick update. There's a massive one coming (fair warning) but it's taking too long to get finished so we thought we'd at least let you know the events of the past couple days.The Randolph-Macon College Ladies Field Hockey team officially adopted Charlotte yesterday after their game with Washington College. They read an official welcome complete with background of her situation, gave her a bag full of gifts (I understand there is at least on more on the way), had a big hand-painted banner reading “RMC FH (heart) CHARLOTTE!”, and even had a cake with Charlotte’s name along with the Yellowjacket and all that. There are pics on my Facebook site.Today, we traded off entertaining/working with Charlotte and organizing the house. Rachel has been under the weather with a nasty ear infection but a dynamo in the house. She also worked with CJ a while making her identify aspects of the puzzles that have gotten too easy for her.I taught her the phrase, “Don’t give up!”We then went to Cracker Barrel for dinner which was nice. We’re spoiled in that CB is usually beyond reproach for service and food. Tonight they weren’t on their “A” game but it was still pretty good. We even had dessert.Tomorrow is Labor Day so nothing medical going on. I have rehearsal for Southern Horizon and the U. of Miami/FSU game is on (I’ll keep track on the phone). GO CANES!!!Tuesday and Thursday are PT/OT days and Wednesday and Friday are clinic days to start the new drug,Stay tuned for the epic.