Busy Couple of Days

It's been a busy couple of days. The rest of Thursday went off without a hitch (so to speak) and she actually got in to Proton Therapy only 15 minutes later than her appointment time. A new record, I think. After that, we went over to the Galleria Mall again so Charlotte could watch the ice skaters. She really enjoys this. Plus it's nice and cool by the ice rink. We also found a Sanrio store (home of Hello Kitty!!) and had dinner at Rainforest Cafe. It was good food and Charlotte liked watching the animatronic "wild" animals putting on a show with their noises and antics.

After that, we went back to the camping truck because Juanita's son Phillip was going to appear on the Speed Channel on the show Pinks All Out. It's a drag racing show and this episode was in Texas (he lives in Lubbock). He raced his green pickup truck (most of these cars are classic, souped up dragsters) and actually made it into the top 8.

Went back "home" and Charlotte wound down with an evening of books, videos, and playing with her horses. That has become a favorite diversion. She puts them in the green drawstring bag. Then she takes them out and puts them in the "barn" (the wooden shadow box they came in). Then she takes them out and moves them around the room. Then she puts them back in the bag. It's like the shoelaces but a new obsession.

We got some great packages in the mail including a set of about 30 craft projects with all the materials (conveniently placed in individual ziploc bags) from my Aunt Shelley. Just have to get her interested in those. She did like that they came in a plastic container with a pink and purple lid!!

She refused to take her accutane last night (I didn't do a very good job of hiding it). Oh well. This morning I had to wake her up and she started the day kind of grumpy. Again, I couldn't get her to take the medicine (this time in applesauce) and about the time Grandpa showed up, she had gone into a full-blown crying jag. Just very emotional. She screamed, "I MISS MY DADDY!!" and just sobbed. Poor thing. She has been so much more emotional lately. Some of that is actually a side effect of treatment (especially the accutane) but I think it is more a side effect of just STRESS. Her life is so out of control and I think that a lot of it catches up with her at odd moments so that the least little thing sets her off. It's become kind of a pattern. She usually calms down after a little while but I've learned not to push her to do something unless it's really vital.

We decided to head off to the Science Museum anyway and see how the day went. She definitely calmed after getting in the car and once we were to the museum, she was fine. Thanks to our Houston connections, we pretty much had free tickets to the exhibits we wanted to see. We spent the morning checking out the main exhibits (dinosaurs, other animals, a great Native American exhibit, a fantastic seashell collection, and a gem and mineral collection that was beautiful). We also went to see the butterflies. Very impressive as well and I think this was her favorite part. Charlotte was tolerant of most of the events but if I stopped at any one exhibit for too long she would say (from the stroller) "Keep pushing, mom!".

We left the museum after a huge rainstorm (that we thankfully missed) and headed over to the PTC. One of the patients (an older gentleman) who was having his last treatment was treating the other patients and their guests to a concert. He and his wife are musicians. She played piano and he played saxophone and fiddle and sang with a drum track behind them. It was pretty good and the crowd was lively. Charlotte even bopped to the music a bit. She went in kinda late again today (not too bad) and we did our "old routine": Go get some lunch, run a few errands at Target, etc. and head back to the PTC. She woke about 4 and we went back to the camping truck for dinner. I did manage to get BOTH doses of accutane into her by the day's end so that was good. Now she's reading her books and settling in for the night. I think we're going to head to Galveston tomorrow while we have family and a car available.

Good night all!! One week down, one more to go (for me) and 4 more to go (for all of us).

PS: Charlotte Says, "HAPPY BIRTHDAY AUNT B!!!!"

Rachel

We're in Houston!

Well, the flights were good, the weather is hot and humid, and the family putting us up for the time being is amazing. Thanks Meredith for this connection.

Charlotte was a dream and we couldn't have asked for a more well behaved girl.

We're currently staying in an area northwest of Houston called Jersey Village. Nice little neighbourhood, but oh, is Texas flat!

After we dropped off our bags at the house, we went to get some Italian food nearby. Then back to the house and some crashing.

I hate to admit it but I'm feeling a scratchyness in my throat that usually means a cold coming on. Great. There's also a gauntlet of pioson ivy just outside. Why are some of the coolest plants so dangerous?

As I said, our hosts have been wonderful, not letting us pay for any food or the Italian lunch. They also informed us that an "anonymous donor" heard our story and arranged a $1000 donation to the cause. WOW!

We had a great dinner of rotisserie (sp?) chicken (YUM!), fruit, and angelfood cake. Charlotte finally got to see the Tinkerbell Movie. Twice. It's actually moderately funny in places with some adult humor and good "bad" puns. CJ was glued to the TV for both viewings. Then she came into the bedroom, read several books we brought along and then zonked for the night.

Tomorrow looks like a Houston Astros-Washington Nationals game is in the works for us. Whether or not I cover it officially, we'll be there.

Thanks for everyone who came to the party last night. "Successful" is an understatement.

More positive vibes and supportive energy need to go out to another of the families I follow on CB. Zac Talley passed this week. Those DIPG tumors are wreaking havoc among the CB community. His site is www.caringbridge.org/visit/zactalley
Time for bed for me. Need my strength.

Rog

A Big Day

Big day followed by big day.

Charlotte did very well yesterday considering her anti-social tendencies these days. The football player visit at the clinic ended up being very cool and video of the crew singing "Frosty" was on CBS 6 yesterday. She was singing right along.

Then we headed back to RNR to get things set up for the concert. We cut things a bit close but it all worked out. Even the weather cooperated!

When I couldn't be at the concert last night, CJ hung out with Uncle Kolbey or Mommy. She was very excited to see "Mr. John" John Robison who heads up Southern Horizon (my Civil War era band). When Rompy showed up, Rachel had to tell her it was Daddy before she would come close.

Rachel already gave you the numbers but it doesn't really tell the story of how cool the vibe was last night. Everyone was having a good time and I think we surprised the Chick-fil-a folks with how successful the evening turned out.

Thanks to everyone involved. Definitely a group effort. And today will be just as nuts!

Now for get well wishes to someone else: our wonderful utility infielder and ebullient front desk staffer, Margie Madrigal has been quite under the weather and is recovering at Henrico Doctor's Hospital. Please put her on the lists.

I'm including a photo of the 501st Legion of Vader's Fist, Rompy, Mommy, and the princess in front of the VA Blood Services bus. The storm troopers kept aiming their weapons at Rompy for some reason and Obi Wan tried to "fix" Rompy with his light saber!

A very good time and more will be had tonight. Hope to see you all there.

Update:

What a great party! I don't think Charlotte's birthday party could have been much better. Thanks to everyone who was able to come out and give the princess her send-off to TX. We had a GREAT crowd and I think even Charlotte had fun for a bit. She certainly ate a lot of cake!

There are many people to thank. First, thanks to Jeni for making the beautiful (and yummy!) Tinkerbell cake and to our NM/CO family for ordering the yummy DQ ice cream cakes. There is some (but not a lot) left over. That goes to show you what a crowd we had!

Next, a HUGE thank you to our staff, many of whom were there tonight and worked hard to make this party a success while being "off the clock". Roger and I appreciate the time and effort you all put into your work and especially the time you put in "unpaid" on Charlotte's behalf. The party would not have been quite the success it was without you. BIG thanks to Annette for guarding the desk, Anna and Lindsey for guarding the moonbounce, Anthony for doing a lot of cleanup and blowing up balloons, Kolbey and Annette (and Michael and Babz too!!!) for assisting big-time with cleanup, and I'm probably forgetting specific things but THANK YOU to all the Romp n' Roll VCM staff who were able to be there tonight. This warrants a further shout-out to Margie who is still very under-the-weather. We missed you this week and wish you a speedy recovery!!

Another big thank you to the family and friends who just helped with every little thing tonight (putting out napkins, blowing up balloons, taking out the trash...you name it!). Many of you have future careers leading romp n' roll parties...

Thanks for the cards and (yes there were a few) gifts. Some of you even got sneaky and brought presents "for Roger and Rachel because you only said no presents for Charlotte." Nice. Some of the cards that were handmade by the kids are really great! I got an extra SPECIAL present this evening. A bunch of you (and you know who you are) all chipped in and got me a FULL SPA DAY at Divas which I plan to use sometime after I come back from these first few days in Texas. What a very special and much needed gift. You bet I will use it!!! I understand Meredith was the Queen Bee organizing this effort but thanks to all who contributed as well.

So we are home. Charlotte is asleep. We are (mostly) packed. Just down to the final few items and then it's time to get a few hours' sleep before a big trip to the airport EARLY in the AM.

Our next post should be from TX.

Rachel

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".