Caringbridge charlotte reynolds

This has already been a problem as a friend of ours clicked on the link and sent a donation to Caringbridge thinking it was going to Charlotte. He is not happy and several of our fellow Caringbridge users aren't either. We've heard that other users have complained and have also been refused by you. Not the way to garner loyalty. I will make my request only once more, please take Charlotte's name off of the thermometer ad. Paying or not paying a fee for the service is not an issue for us.

Having our name associated with an organization with questionable ethics is. The thermometer idea is great. Just take the names off of it and make it clear that it's for Caringbridge and not the user. It's especially confusing when the users like us are frequently in the middle of fundraising themselves.

In case you didn't notice, we have over 90, hits from about independent viewers. How many more people are following other patients as well?

I would say it's very bad business to piss off that many people at once. I've been shouting the praises of CB all over the place. I even told someone about it this morning so I have not given up on you yet.

Do right by us and it could be very good for you. Refuse us, and our friends, again and we're gone. Your choice. Personally, I really like CB and don't want to leave but I have discussed it with my family and we will.

Instead of forcing this on us, why not enlist our help? Obvoiusly, there is a great deal of organizational experience here. Sincerely, Roger Reynolds Don't hate them yet. We'll give them a chance to work with us. CJ update later! Alright, here it is now, your moment of Zen I will warn you that I have had a very long day and two margaritas so I apologize in advance for any typos or "crazy talk".

The shuttle got us to the hospital without much ado and with the help of some handy greeters, we found our way to the children's clinic. It's quite an operation. While we were there, the music therapist stopped in for a session with the kids. It was well attended and Charlotte joined in the fun after some encouragement. She even got in a request for Frosty the Snowman. The receptionists and all the staff just LOVED her bald chicks rock shirt that she wore proudly today.

She made fast friends with everyone and charmed the pants off of just about everyone in breathing distance. That's our girl. I filled out oodles of paperwork, summarizing for the umpteenth time Charlotte's birth history, health history, developmental milestones, etc.

Thanks to the fundraisers Our appointment for paperwork was at and our appointment for Dr. Wolff was We made it in to see the doc about 11 am not bad for getting squeezed in at the last minute.

Wolff came in, met us, greeted Charlotte, and got the "low down" on her history and scans. He explained the procedure with the evaluation of her tumor and how the process works and then decided to send us immediately over to see Dr. Brown in the research area of the medical school. He told us to wait and that he would get us directions and then he promptly left the building We were kind of left in limbo land for a while but eventually got a medical data specialist to walk us over to the medical school herself it was about a four block walk.

Meanwhile, we got to hear her interesting story: she was living in New Orleans during Katrina and ended up needing to evacuate. Interestingly still.. She ended up in Houston and hasn't been back since. So we met with Dr. He is also a graduate of MCV go figure! He shared a few journal articles which he has published on this process.

The official term is morphoproteomics for any of you interested in googling it. The science behind it is pretty much beyond my capability but basically this is a VERY new and VERY experimental process used for cancers and other diseases for which typical therapy is not successful.

According to Dr. Wolff, only about a dozen people have been through this process before Charlotte and maybe only one her age. The doctor will look at the tumor markers under a microscope and analyze the life cycle of the tumor. By this process, they will recommend directions for therapy which may include drugs that are off-label i.

All the drugs are FDA approved but they may not have been through clinical trials with kids. Brown that we wanted to move forward with things. He gave us things to ask for more tumor slides after Charlotte's next surgery and we headed back towards MD Anderson for lunch. We ended up at one of the many eating establishments available on this campus where there was surprise a Chick-Fil-A! After lunch, we went back up to the clinic. We weren't exactly sure when Dr.

Wolff would see us again but we knew that he was expected back from a lecture about 2 PM. Charlotte resumed her playing in the playroom and we met volunteers and child life folks who helped give her and us some extra TLC. The highlight of the day was getting to see this girl named Bailey ring the bell for the end of her treatment. Not sure of the diagnosis but I'm guessing Leukemia or Lymphoma. She was another cool bald chick and looked to be in her mid to late teens.

There was a big announcement made as Bailey came out to ring the big bell for the end of her treatment. Charlotte walked right up to see the events and even ran up to Bailey and gave her a big hug. There wasn't a dry eye in the house. Ok, well, I was bawling!! Then we waited Finally about 4 or so we got back into the clinic again and we met with one of the other oncologists on staff.

Wolff again. He helped talk us through the next steps as we discussed possible options. We learned that there are certain chemotherapy drugs that she may be able to take very soon after surgery depending, of course, on how the surgery plays out. We also discussed radiation options whole head and spine vs.

MD Anderson is one. No decisions made today, of course. All of this depends on how the surgery plays out, how the initial rounds of chemo go, and what the morphogenesis results tell us.

But here is what was made very clear to Roger and to me: Charlotte has a very dangerous, very aggressive tumor that is frustratingly not responding to many of the typical therapies. We are embarking on pretty much unexplored territory when it comes to therapy options but this is pretty much all we have. There is much danger of the cancer metastisizing into her spinal fluid or other areas of the brain and there is much danger of the cancer continuing to grow.

Slight segueway In his attempt to gain weight, he goes on a super fat diet and takes the family along with him. In a scene where Homer tries to get the kids to eat fat-upon-fat, Bart responds "Dad, my heart hurts!

And not from the buttering of the bacon. Over the last few weeks, we keep digging deeper into this process and I continue to realize how grave her conditino is. The fact that her tumor is not dying despite the poison we put in her body.

The very fact that we are having to resort to experimental, aggressive, and potentially dangerous medicines to keep her alive. That makes my heart hurt.

I feel this weight in my chest that won't go away and I am genuinely sad. I fought back many tears today and a few slipped out anyway. I know that there is still hope. I know we are not at the end of the line. But I am not nearly the picture of optimism that I felt about 3 months ago. This is hard stuff and it will take me a while to process this. Ladies and gentlemen, the eye of the hurricane is getting ready to pass. Get ready for the rest of that oncoming storm. Her chemo treatment will be determined by how well she responds to the surgery.

And radiation will be determined by the success of the surgery and the results of the analysis. And all of the experimental stuff will hinge on how everything else plays out. Not a bad walk and thank goodness for Google maps on our phones. Just so we don't end on a downer, we did have a lovely evening with Roger's Uncle Tom. Charlotte was a doll and was serenaded by the mariachi band.

She really loved it when they played Old McDonald!! We will leave tomorrow and journey back to Virginia. More to update later. Thursday, May 21, We are Here in Houston. Well, here we are in Houston, TX. The morning began at 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 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.

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. 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. Khan and see if he had any news. Left a message of course. 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.

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. 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. 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. This is unusual but maybe it's because we're from out of state I don't know. Actually it seems like the latest update is that things are a-ok but we will see tomorrow.

Appointment is for 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 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???? 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. Labels: Charlotte Reynolds , Disney , Dr. Wednesday, May 20, Announcements. Some announcements for the week: 0. If it belongs to you, please come by or call to claim it.

Get your flyers at Romp n' Roll and take them in to buy all your summer tchotchkes sp? Much thanks to Susan and Cheryl for letting us piggyback on this. We are sorry that we will miss it. On that note: another date change. The home based business bazaar will be June 27th at St. Ann's Catholic Church. More details to follow but there will be lots of vendors Pampered Chef, Arbonne, Longaberger Baskets, etc.

Start your Christmas shopping early! Also, I think a Silent Auction is in the works. With all of these fundraisers in the works, we are very grateful. We just found out that the insurance IS going to cover our visit to TX as a "second opinion" they will cover the visit but not the tumor evaluation since that is considered experimental. We did receive a second denial of our appeal for considering the stem cell transplant services as "in-network" at MCV. The insurance ombudsman feels we made a great case and that the insurance did thoroughly review our cause but they continue to maintain that they are not denying us coverage and that we can go to an in-network hospital or pay the out-of-network rates.

We will definitely be talking with MCV about negotiating cost but there isn't much point until we know the direction where MD Anderson will point us That is all I have to report.

I hope to see some of you tonight. Then I must pack and we leave for the airport about 5 AM tomorrow! It makes it look like Charlotte will somehow get donations if you click there. I've asked them to remove Charlotte's name from it. Seem a little sneaky to me. I've already sent them a donation when we first started the site and I know several of you have as well.

First off, I woke up, completely alert, at 4AM this morning. No idea why. Charlotte and I went down to Children's Hospital to get the fabled slides of the tumor which we will take with us to Houston "Houston, Texas?!?

Go do that now Hmmm dee dum dummm Great, eh? I was actually getting a little nervous because the final count was edging up into the low 40s which is a handful under primo conditions and I knew this wasn't going to have those conditions. I got to the resort and realized they weren't going to have the two separate rooms for the kids or the other, OTHER separate room for the older kids to play board games. Couldn't have done this without them.

Thanks, ladies! After teaching my classes at Romp n' Roll, I zoomed over and found the place in chaos already. We got the kids a little focused with a song or two and an idea of what an obsticle course should be and they took it from there. They really seemed to love the springboard! There were a few "breaks" and lots of redirection but a pretty fun time was had by all. I also think it got us a bit of new business. If you've never plopped your head into the pensieve that is the world of foster parenting and adoption, it's had to imagine what a tough job it is.

Foster and adoptive parents need and deserve access to every little bit of resources under the sun! That's what they do. If you don't get suckered in by the little thermometer over there and have given as much as you want to CJ's fund, I can think of few other places as deserving of your support. Boss woman, Cate Neubanks is even going to yoga with us on June 6th. I had a ton of help tearing down and schlepping out to the car so it was next to no time before I was on to the Glen Allen Golf Fun-raiser!

I sort of came in on the tail end of things but it seemed like it was a very successful evening there as well. We'll get final numbers out as soon as we can. We still don't have final numbers from the burrito eating contest at Qdoba.

Still working on it. Now I'm home, trying to stay awake to finish this before I go pack for tomorrow. Rachel has most everything ready and lined up, I just need to make it all fit in the suitcase. Thanks for all your well wishes for the safe trip. See you in Houston. Rog p. We got the ReeseStrong doll and will be taking it to Houston.

Monday, May 18, Cancer is a Hurricane. So here is your analogy of the week: Cancer is a hurricane. It comes on strong and weaves a path of destruction. You can fight it. You can batten down the hatches. You can even move away from areas more likely to be hit by hurricanes like Florida to somewhere like But then, of course, you have to worry about tornadoes and dust storms.

Heck, they've even had hurricanes in Canada. And England. It's always something With some hurricanes, you have a lot of warning. You can see it coming and have plenty of time to try to minimize the effects by boarding up the windows, trimming the trees, or evacuating altogether. With other hurricanes, it seems to develop so suddenly, you barely have time to grab your raincoat and duck for cover. And yet, you live where hurricanes happen so you know that they can strike.

Category one. Tropical storms, even. They are still dangerous. They're a pain in the ass. Localized damage. A tree down here or there, the power goes out for a little while, school is closed. There is preparation and clean up and all of the standard procedures. But they are far less to fear than the Category Five. Those are definitely going to cause some serious destruction. Those are the ones you want to avoid. The power will be out for days weeks at a time.

Your home may be destroyed or severely damaged. You could lose everything. Including your life. And sometimes when the hurricane strikes, you're still not sure until it's passed whether you were in a category three or a four.

It doesn't really matter. When you're in the middle of the hurricane, it's scary whether the wind is blowing at or mph. And in the middle of that hurricane is an eye. The eye is deceptive. In the eye, there is no wind. No rain. No tornadoes. Everything is calm and clear. You may even hear the birds come out. In the days before satellites and radar, people would step out of their homes during the eye of the hurricane only to be taken by surprise by the rest of the oncoming storm.

Because eventually, the eye passes. Not only are you left with the rest of the storm, but sometimes the most severe, most damaging, most dangerous part of thes storm is the part that follows the eye. Ironically, the most dangerous storms usually have the largest, best defined eye wall. So here we are. In the eye of the hurricane. This storm has been brewing and raging in our little family for almost four months.

We didn't have a lot of warning but we called out the National Guard and they're doing the best that they can. We have been braving this storm and doing everything we can to fight it. Some days we did better than others. But for the last week, things have been calm. We have a direction. We have a task. We haven't spent the night in a hospital in almost three weeks hooray. We haven't had to visit the doctor's office or therapy appointments in over a week hooray.

We've actually resumed a schedule that most closely resembles our old "normal" schedule, doing things that we haven't done in almost four months. Charlotte is happy and eating and growing and smiling and making us smile.

And yet that storm is looming on the horizon. The other side of that hurricane is getting ready to hit us and I'm not sure how long it's going to last. I am fearful of the damage that will be caused. I am fearful of the unknown. I can't stop thinking that the process will start all over again when she has surgery again next week. There will be danger. There will be risk. There will be trauma. It just comes with the territory.

And then there will be the long clean up. We will need to assess the damage, look towards rehab, get a new direction for cancer treatment I guess this sounds very morbid and sad. I should be enjoying the "good parts". I should cherish these moments where we get to have a life again, however brief that may be. And I do. But it is difficult to look at that precious little girl and realize that while she laughs and tickles you and sings nursery rhymes and reads books to herself and talks about going to "Houston, Texas???

This insidious thing that refuses to be stopped by the traditional avenues is testing modern science I will continue to hope and believe. I will strive to look on the bright side. I will breathe while I'm still in the eye of this big hurricane. But I also stand ready because the storm clouds are building again.

So those are my thoughts for this evening. Take them or leave them. I must get some sleep for the busy day ahead. I continue to take deep breaths and live one day at a time. I think I see a Hurricane Party in my future yeah, you Floridians out there know what I'm talkin' about!!!

Who's making the Sangria? Labels: Cancer , Charlotte Reynolds , Houston , hurricane. Sunday, May 17, Kudos Time. Another lazy rainy morning. Rachel went to "Movies and Mimosas" with some mommy friends and Charlotte and I just hung around the house snacking, reading, watching Wonderpets.

Rachel is home now and pestering me needlessly. Rachel wanted me to let you all know how needlessly I'm suffering. So anyway, kudos time!!! Chris from Hill Electric came in and volunteered his time to change the very high florescent lights in the gym since we don't have a ladder high enough. There's so much more light in the gym, we don't even need the big buzzy round lights. Big thanks to him. Today, we told Charlotte that we are going on a trip this week to go see some doctors in Houston.

She asked, "Houston, Texas? Probably get to see Uncle Tom. I did something impulsive and left a message on Andrew Stanton's yes, THE Andrew Stanton from Pixar voicemail explaining her situation and asking if there was any way Charlotte could see the new movie "Up! Roger is going to stab Rachel in the head for editing without an invitation!

Besides spelling corrections, she has nothing to add. You may go now. Saturday, May 16, Continuing to be Very Busy!

It's been very busy! Hence the lack of update. Charlotte and I spent the morning at Romp n' Roll. She was my "little helper" during classes and seemed to have such a good time seeing everyone! I don't know about her but I'm ready for a nap! Speaking of Five Below, don't forget to stop by there today or tomorrow and stock up on your bouncy balls, pool noodles, stickers, etc. If you've never been, it's like an "upscale" dollar store with lots of discount stuff. Now we are just counting down and gearing up for our trip to Houston next week.

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Donate to CaringBridge. Dedicated to Your Health Journey Your personal CaringBridge website is your place to share health updates, photos and videos with the people who care about you. Charlotte seemed to like it too as she gave me a big smile when I came back from the haircut. I even brought home some hair "for the birds" from the hairdresser's. So a quick shout-out to Karin at Diva's for always helping me look as beautiful as I can possibly look!

She's been cutting my hair for over 5 years and she's great! For those of you that know us, that sentence just doesn't seem bizarre, does it? Charlotte had a fabulous day with a playdate with her friend Abby from church that included lunch and lots of kid time. I understand from my mom that she has had a wonderful appetite all day and stayed VERY busy. She finally conked out around First of all, it's very difficult for them to try to get us "in" as Children's stays very busy with their clinic but I also feel like she has just been doing so well.

We tried to get her back into therapy the week we ended up back in the hospital and it was oh-so-frustrating to have that setback. As many of you know, my parents are now here and oh is life so much easier again!

It just allows Roger and I to focus our efforts on work and not have to worry quite as much about Charlotte As evidenced by what will be almost 20 hrs of work at Romp n' Roll on my part over this weekend alone! This is the first opportunity they have had to see Charlotte since her diagnosis she had seen them in Florida just prior to her first hospitalization so I think the Mutual Admiration Society is very much in effect on Slash Ct.