CJSTUF Spotlight: Rachel Reynolds

Position: Executive Director, Co-Founder, CJ’s Mommy

Rachel Reynolds is originally from Daytona Beach, Florida where her mother, Gayellen, and stepfather, John, currently live.  She grew up listening to the roar emanating from Daytona International Speedway and working at her godmother’s hotel on the beach.

An exceptional student, Rachel participated in the International Baccalaureate program at Spruce Creek HighSchool in Port Orange and graduated second in her class.  She entered the University of Miami in Coral Gables as a Music Therapy Major and graduated with her Bachelor’s Degree in 1997.

While at “The U,” Rachel met a long-haired, wild dressing, authority bucking jazz vocal graduate student named Roger who eventually, somehow, talked her into marrying him and running away to Richmond, Virginia.  It just so happens that she conveniently had an internship waiting for her at the Virginia Treatment Center For Children so it worked out ok.

After two years in Richmond, they picked up stakes and moved to Boone, NC where Rachel started graduate studies in Speech Language Pathology at Appalachian State University.  After earning her Master’s, Virginia called again and they moved back; first to Fredericksburg and then finally to Ashland where they bought their first home and where they still reside.

Rachel began working at Commonwealth Autism Services in 2004, left in 2007 to run a small business, and returned to CAS in 2011.  She specializes in ABA Therapy and recently began her run as principal of The Dominion School For Autism.

Right in the middle of all that (2004 to be precise), Rachel found out she was pregnant and on July 9, 2005, gave birth to Charlotte Jennie Reynolds who became the center of Rachel’s life.  Charlotte was a beautiful, sweet (mostly), curly-haired little girl who learned quickly that “being adorable gets you stuff.” She had an amazing little voice that melted hearts and made everyone fall in love with her.  She was, indeed, very special.

In 2009, an ultimate burden was placed upon Rachel and Roger when CJ was diagnosed with a primitive neuroectodermal tumor (PNET) in her brain.  Rachel was pushed to the limit of what a parent should endure and was pushed past it when Charlotte lost her battle on January 7, 2005.

Despite the nightmare, Rachel has been able to continue her life, co-founding CJ’s Thumbs Up Foundation with Roger, acting as executive director.  And through the pain, she has retained her ability to laugh even so far as joining an improve comedy troupe in her tiny amount of spare time.  Because she knows, first hand, the healing power of laughter.

And so, through the sadness and tears, she can also smile as she answers “4-1/2 Questions.”

Four And A Half Questions:

1)      Q: What is your favorite food that you’ve never eaten?

A: Lobster

2)      Q: What is your day job?
A: Principal of The Dominion School For Autism/CAS

3)      Q: What is one of your favorite things about Charlotte?
A: Her laugh and her voice (which is technically 2 things but we’ll let it slide).

4)      Q: What is your top goal for CJSTUF.org?

A: Be recognized nationwide.

            ½)   Q: Wouldn’t it be cool if…
                        A: a celebrity played for CJSTUF on Jeopardy?

For more information on her journey through the world of pediatric cancer, check out her book: Four Seasons For Charlotte on Palari Books or follow her personal blog, I See What You Meme.

A very good day

First off...very good day yesterday. Don't think I got irritated once that wasn't my fault. :-)Charlotte kind of slept in (9am) and I got some laundry done in the morning.We walked to the main hospital and caught the shuttle to the proton center. Walter Johnson the shuttle driver was on duty and I passed on what I had learned about his namesake. On the way back, I got to meet the famous Imelda the shuttle driver. She already knew CJ and knew about me from Rachel. It's a little disturbing when you're getting to know the drivers by first name.Everything was totally smooth at the proton center and we saw some of the regular crowd, Alex, Talia, and another new friend of Charlotte's named Halle. Halle is a kick! I understand she has had a very rough go of it post-surgery (she had a similar kind of PNET as Charlotte) and has been feeling very sick for quite some time. Well, just recently, like, this week, they finally found a drug that keeps her stomach settled and, according to her mom, she's a completely different kid (Where have I heard THAT before?). When I met her yesterday, she was vibrant, energetic and handing out food to people in the recovery area (that's OK) even though she was still NPO and must have been hungry, herself.
The treatment started at 10:30 and only lasted 30 minutes or so since they are done with whole head and spine and now will concentrate on spots in the brain. I didn’t go anywhere and read a little out of my newest acquisition, Inkhart by Cornelia Funk, a moderately OK movie was made of it but the concept is kind of cool so I had to make Aunt B buy it for me when I saw it in Costco! I didn’t realize there were three books in the series. Probably should have picked them all up.
Another nice thing about the proton crew is that they made these calendars for all the patients to cross off days until the last treatment and yesterday, I noticed they had hung up all the current calendars on the wall low enough so that kids could cross off their own days if they wanted. 12 treatments to go!
When Charlotte woke up, Halle came over to talk to her and Nurse Tye (I've since realized, SHE was the one who was handing out chocolates in the lobby THAT DAY!!!) had Halle bring Charlotte a huge chocolate muffin piled high with chocolate frosting and sprinkles. (I think Nurse Tye has Italian grandmother in her in that she doesn't seem to feel right unless people are eating something. She really seems taken with CJ)Charlotte usually only munches lightly on pretzels or crackers or other little snacks when she first wakes up but when she saw that frosting, she woke up pretty quickly! It was piled up on top and I'll bet there was nearly a quarter of a container's worth on there, no exaggeration. She pretty much polished off all of it and “helped” me eat the actual muffin. I'll admit. It was pretty darned good.Halle's mom was very much amused at her "reinvigoration" and let her run amok which nobody seemed to mind. I'm sure it's a very welcome change. I clearly remember the first couple days of feeling better after being whomped by the flu. It’s nice.Back to the main hospital on Imelda's shuttle and we (CJ) had lunch at Chick-fil-a. Yes, after eating that huge muffin, she was still ready to eat more and she did. It was so nice to have a "normal" lunch with my daughter. She even took off her hat and put it on the table. That's pretty big as my PSYCH 101 tells me she's feeling more confident.This has been slowly happening and I've seen her come out of her shell more and more, play with ("tolerate," more accurately) other kids, and do stuff like the art projects in the lobby. She even posed for, not one, but TWO pictures yesterday. One made its way into a frame colored by Mikayla.It was still pretty early and Charlotte was feeling tired so we headed up to the room. She didn't nap but chilled with nearly every book in the room and then a Sid The Science Kid video. (LOVE those!) I was feeling pretty toasted too so I tried to nap. CJ must have a problem with that because she constantly wakes me up to tell me that she finished another book or that the latest episode has ended and here's what happened...At least I got a little nap.Oh yeah, and she pooped! It had been 4 days and I was going to slip her a gastronomical mickey but before I could, she gifted me with a regal defecation!Another uncomfortable realization: It's bad enough to talk about CJ's bowel movements with everyone, but what does it say when one finds oneself discussing another person's "troubles" with that person, right alongside that person's family; and it doesn't seem weird to anyone there? Such is the surreal world in which we exist. People, kids mostly, routinely and unconsciously show each other their scars, compare central line ports and Hickmans, and talk about poop (grownups do it plenty, too). Back to PSYCH 101, it's probably a way to make things feel normal.
On a whim, we (me, Charlotte, Mikayla, and Halle) decided to have a Tinkerbell fest in the big TV room upstairs. The girls got pillows, blankets, and permission from their parents, I got the Tinkerbell movie (graciously lent to us by the wonderful Beasleys), and we headed up. But before, we did, I checked our mail and what should happen to be there but a package from the Schools family: a Costco gift card, some very nice cards and drawings, and a super cool (and timely) Tinkerbell “art portfolio” shaped like wings chock full of pencils, pens, markers, etc…It was a big hit and all the girls played with it while I flailed away trying to get the DVD player working (turns out I had the wrong remote).
I think there’s something of a power struggle brewing between friends of Charlotte. EVERYONE wants her to pay attention to them and that’s not a skill she’s developed yet. Rachel and I might have to run interference or set up individual playdates or something. I guess it’s a good problem to have.
We have proton at 10:30am again and then we’ll head over to the Children’s Center to start topotecan.
Updates as they happen (or at least in a day or so!)
p.s. I’m looking for singers for a song I’m doing at Rompy’s Summer Concert Series on Thursday, Aug 20. It’s one, moderately easy song and I need all parts. The rehearsal is Monday evening at 7:30 at Romp n’ Roll VA Center if you can make it. Part are already written out and it won’t take long to learn. Feel free to recruit! I wouldn’t mind a cast of thousands! :-)

MRI Results

I apologize in advance for our lack of update. It's been a busy 24 hours (or so).

VERY excited to see that there are at least 12 contestants in the burrito eating contest! Hooray! Come on out and support these crazy eaters! That's wonderful!

Yesterday was a busy day all around. Charlotte was active and feeling pretty good most of the day. Her methotrexate level was about 2.1 which is good (it has to be .01 before they can start the next part of chemo but usually after "day 1" it was around 3.). That means her body is flushing the "stuff" out of her at a good rate. They were monitoring her blood pressure for a little while as it seemed to be high...BUT then she pooped and the pressure seemed to drop back to normal. Again, hooray. Her appetite was good yesterday and she ate lots of fruit so I am sure that helped.

Auntie Retta visited in the morning and brought mom coffee and yogurt for breakfast. YUM. She and Charlotte played some Candy Land and we all had some good visiting time. Granny arrived at the hospital around noon. We took a few walks, went to the playroom, and she was in a very "artsy" mood, drawing and doing collages with stickers. I understand that the rest of her day was very active as well.

I left after signing the consent for her MRI today and headed over to Romp n' Roll where things were hoppin'. It was a very busy afternoon and evening with our registration event. Lots of fun and we didn't stop until after 8 PM!! It was good to see many of our regular customers and a few new faces as well. Lots of people asking about Charlotte.

Roger and I got to spend another night together. That is a rarity these days so we try to appreciate it. Now it's off for another busy day and a weekend ahead.

Many of you have commented to us about hoping that the MRI will show shrinkage of the tumor. Interestingly enough, my understanding from Dr. Khan is that we really don't expect a lot of shrinkage during the first stages of chemo. They just hope not to see any additional or new growth. Today they will be looking specifically at her spine to make sure that none of the remaining tumor has spread to other areas of the central nervous system. Until she starts the high dose chemo, they do not expect the tumor to die and/or shrink. Kind of depressing when you think about all that she has been through and how this really doesn't do much (visually) to solve the problem but I know and trust that this will be the right thing for her.

Gotta go get ready for a busy weekend. Can you believe it is May already? When we started this process, it was cold, wintry, and January. Now there is green everywhere and flowers in bloom. And we're starting to think about summer. Crazy!

OH an update about the cruise: I think we are pursuing options for a 5-day Disney cruise that will leave out of Port Canaveral (Florida) sometime in Mid-June 2010. There are more details to come but start to think about whether you and your family would be interested. We know that not everyone will be able to go but Charlotte would love to celebrate her recovery with you on a Disney Cruise! I've already got an idea brewing in my head for t-shirts...

I'm sure there would be some kind of initial deposit but the balance would not be due until April of next year so you have a year to save for the big event. We are working with our travel agent on this and will distribute more information when it is available.

Happy Friday!

Rachel

Charlotte went in for her MRI at about 12:30. I got to the hospital just in time to see her off into the capable hands of the radiologists. She was really funny when they gave her the "sleepy juice". As we may have mentioned before, it has about the same effect as a fast acting cocktail. So true to form with most of the women on my side of the family, she's a "fun drunk" (Roger can elaborate on that) :-) Anyway, she was very giggly and talkative and cracking up me and Granny.

Granny and I went upstairs to wait. She had a pretty good night from what I understand and slept well. Much thanks to Granny for staying with her and giving me and Roger a break.

She came back from the MRI still loopy but has since had some juice, most of an apple, and most of a hot dog. Now she's in Backyardigans Land (at least she's branching out from Dora).

No report from Radiology or Neurology yet about the MRI results but I did talk to Dr. Massey for a bit about her current levels. It looks like Potassium is good again but her Vitamin D is low. Not surprising because the chemo tends to deplete this nutrient a lot. Combine that with the fact that she isn't getting her normal daily dose of "outside" and we have low Vitamin D. Apparently we need to watch this pretty closely as long-term studies of kids with these kind of treatments sometimes result in low bone density down the road. So she'll probably get started on a Vitamin D supplement in addition to her multivitamin regimen.

The subject of radiation was once again broached as well. Looks like this will be even more of an inevitability. As she gets older and we see how the chemo progresses, they will tighten the plans for her protocol but since we weren't able to get 100% of the tumor out and the PNETs tend to be very aggressive, I think they are already looking forward to what type of radiation protocol we will need to consider. I don't have any more info on that yet but I'll find out and you (our loving fans) will be some of the first to know :-)

That's all I have to report for now.
Rachel

Big PS: (and the whole reason I signed on in the first place)...

The Fundraiser at Everything But Water (Short Pump Town Center) has been postponed until May 17th. More info to come soon.

Ok, folks...not so good news:

We got the MRI results back. The long and short of it is: the tumor is growing. It seems that the chemo has not done anything to stave off the growth of these cancer cells. PNET tumors are, as Dr. Khan says, "Notoriously Ill-behaved". And this one is no exception.
SOOOO...what does this mean, you may ask?
We are stopping chemo for now (no sense in putting her through more of this if it's not working). She will go home tomorrow. We may still see her counts drop a bit but hopefully not as much since she didn't get the full round of chemo this time. We will be back in the clinic next week to check levels. We will also have a consult with Dr. Tye next week. He is out of town at a conference this week but has spoken with Dr. Khan and while he has not seen the scans, they are already talking about the possibility of another surgery to debulk as much of the tumor as they can. This would be probably two weeks from now (we have to wait for the chemo to completely get out of her system and for her levels to come up). They have to weigh the pros and cons of a third surgery that will remove as many cancer cells as possible vs the risks of surgery, etc.
Whether or not surgery is an option, the next step will be RADIATION (yes, indeedy, we are there). It will probably be pretty localized (not full head or spine) at this point but probably about 30 days worth. This could start as early as four weeks from now (if no surgery) or later if she has to have surgery. This should be outpatient but just about every day.
And then we reassess and probably jump at that point to the high dose chemo. Hey, at least we're not in a time crunch to get the insurance company to agree with us now (see, I can see the bright side of things....)
Needless to say, this has been very disappointing to me. Roger knows the "scoop" but did not have the advantage of seeing the scans. We will get to meet with Dr. Khan again on Monday to go over questions, etc.

In good news, Charlotte has been in great spirits all day. Thanks to Granny's conversations with the nutritionist, we got some extra strawberries ordered for her and she ate them ALL (not to mention all the berries granny brought yesterday). She also had a visit from Lisa Branner (the Marketing Director at Qdoba who is organizing this great burrito eating EVENT on Sunday). She brought Charlotte chocolate ice cream (YUM!) dinner for me (YUM YUM!) and stayed and talked for a while. She actually got here while I was meeting with Dr. Khan so it was good to have someone to talk to immediately after taking in all this bad news.

Charlotte is deep into her sticker collage creations and made pictures for Lisa AND Dr. Khan. Now it's Dora Time. Anything for this Princess, that's for sure!!!

HUGS and Deep Breaths to everyone. May the prayers for healing continue.

Rachel

There's Good News and Bad News (deep breath...)

Good news is that the tumor is what they call a PNET (Primative neuroectodermal tumor) which means it's operable. Malignant but operable. The "level" designation we were talking about earlier doesn't really apply to these types of masses.

The bad news is that it's in a really bad place due to what it is pushing up against. They have to go in again on Thursday and try to get as much of the rest as possible. Dr. Tye said that since the pathology report has shown him that she has a fighting chance, he wants to be much more aggressive this time (even though he's still fairly sure that he can't get it all) which means that CJ might possibly have much more serious physical deficits than with the first surgery. Fortunately, she's very young and can recover very well if not completely.

She will also probably need a shunt installed to help with drainage from the brain and a "port" of some kind implanted for the chemotherapy that is almost assuredly in her future. The shunt is completely under the skin and permanent and who knows how long the chemo port would be in. Dr. Tye wants to get another MRI done Thursday morning before the operation which will minimize the anesthesia she'll have to have. They'll put in all the hardware during surgery as well.

Then another period of recovery where she'll be evaluated and all that stuff. They may want her to go through a period of rehab before we start chemo/radiation but it kinda depends on how she is post-surgery and what type of treatment Dr. Khan wants to pursue.

While this is certainly not "good" news, it is pretty realistic with what we have been expecting. We have been warned that the process will be long from here on out. Probably year's worth of treatment and rehab. (probably at St. Jude's) We are preparing ourselves for that.

Thanks to everyone who continues to step up to the plate for us: our romp n' roll staff, the folks at the other area stores, our customers, friends, and family who have offered help wherever needed.
Charlotte continues to sleep peacefully and we will keep you updated.

Thanks to Emily Starrett for lunch today and to all the visits from our friends and family. I think cousin Jeff is bringing lunch tomorrow. His daughter, Savannah is another absolute beauty.

The big card from St. James The Less was delivered and sits nicely under the T.V.

Uncle Vance got off fine yesterday. Dad and Juanita Bonita will be coming in soon.

Babz, looks we need RNR2Go covered again Thursday if possible.

Rachel & Roger

PS She did get a sip or two of chocolate milk today! Didn't want much more than that but it's a start!

Our Story (from the very beginning...)

Charlotte had been complaining of headaches for about 2 weeks. We decided to take her to the pediatrician and they immediately sent us to St. Mary's hospital for a CT Scan. The scan revealed a large (orange-to-grapefruit-sized) mass and Charlotte was admitted on 1/20/09 to MCV hospital in Richmond. She was diagnosed with a PNET tumor (Primitive Neuroectodermal Tumor) with its origin in the thalamus. PNETs are similar in structure (on the cellular level) to medullablastoma. Medullablastoma is the most common malignant brain tumor in children. On the other hand, PNETs are more rare and can sometimes behave differently. From what we understand from her doctors, her pathology revealed a very aggressive tumor that tends to regrow quickly without treatment.

She had 2 craniotomies in 2 weeks. Surgery was able to remove about 90% of the tumor and after a 3 week hospital stay, we came home for outpatient therapy. She emerged from the surgeries with some left side weakness but quickly regained the ability to walk and use her left hand with support.

Charlotte finished her first round of inpatient chemotherapy on March 13th and finished her second round on April 10th. We started a third round of induction chemotherapy on April 28th; however, a new MRI revealed that her tumor was growing in spite of the chemo.

At this point, we scrapped her current protocol and had a consultation with the clinic at MD Anderson in Houston, TX to get guidance on future treatment of her tumor.

Her third surgery occurred on May 27th and was very successful. Dr. Tye removed nearly all of the remaining tumor with just a few very small bits left over in places he wasn't comfortable going, including some on her brainstem.

Her new chemo protocol developed by the folks at MD Anderson began soon after her 3rd surgery. On July 11, 2009, two days after her fourth birthday, we packed up and headed back to Houston, TX for 30 days (7 weeks) of proton radiation therapy. She also received some chemotherapy during this time. Charlotte tolerated the radiation/chemo combo well and we returned from Texas on September 1, 2009.

Charlotte continued on a revised chemo protocol that included accutane, valproic acid, topotecan (all oral) and velcade (IV 2x/week every 2 weeks).

Charlotte's latest MRI (November 6, 2009) revealed that the tumor continues to grow despite radiation, chemo, and all other treatments. The tumor growth is once again placing pressure on the spinal fluid in her ventricles, causing enlargement of her brain cavity.

On November 8, 2009, Dr. Tye placed a shunt in her head. The shunt drains to her stomach and allows pressure to be relieved.

We are pretty much out of treatment options at this point and our time left with Charlotte is probably limited. We are going to enjoy whatever time we have left, including a trip to Disney World sponsored by the Make-A-Wish Foundation.

We are extremely grateful for the tangible, monetary, and spiritual support that Charlotte's community continues to provide in our time of crisis. In the near future, we will formally establish the CJ's Thumbs Up Foundation (CJSTUF) in her name as a mechanism to "pay it forward".