Showing posts with label Ukrops. Show all posts
Showing posts with label Ukrops. Show all posts

Wednesday, June 24, 2009

Charlotte made her "Wish"

The last couple of days in the Nelson Clinic have been much smoother. We've been calling in ahead to give them "warning." Dr. Kahn wasn't there today so we didn't get to ask our latest questions but nurse April promised to corner him this afternoon and make sure he addresses them.

Saw Nile and his mother today. He was furiously playing video games in the waiting room. He looked pretty good.

Also saw Reese's Mom. She was back and forth taking loads to the car in hopes of going home. Hope it happens soon.

There were others we passed here and there who we knew or at least knew CJ. Drs., nurses, parents, staff. I actually am starting to really hate the fact that we know so many people there. As I like to say to those we meet, "Not that I don't want to see you but I sure wish it was at Ukrop's or something."

Charlotte is resting comfortably and watching Big, Big, World. I'm starting to notice "the look" creep back in. She's smiling a little less and looking more tired. Fortunately, the nausea and other problems haven't materalized yet. I'm sure they will be by soon. She's still eating so that's good. No poop for a couple days now. Can't be long as the topo-stuff is supposed to make her stool very, very loose.

Can't beat the weather the last couple of days. Tomorrow should be more like normal - Hot, humid, and icky.

Make-a-Wish is coming by soon so we'll be one step closer to that.

Phyllis is upstairs ripping carpet out of the closet. I didn't know there was anything left to do! We've got an electrical project for Grandpa next time he comes up. Our hall light looked like it needed a bulb so we tried to get the cover off to change it. I don't think we had done anything to that fixture in a very long time and it sort of fell apart when we finally got it loose. It's salvagable but I don't do electricity so Dad get's to! :-)

Got to chop a little wood yesterday. Might run out and grab some wood from a neighbour who just cut down a tree.

The business front is looking a bit better. We hit our overall membership goal, which earned the staff an ice cream party, and our Awesome Adventure Party promo is cooking along with great vigor. We've booked a large number of parties as far forward as mid-late 2010! There are some other great things coming up that will amaze and mystify you! :-) Stay tuned.

The Home-Based Business Bazaar is Saturday at St. Anne's Catholic Church from 10am-2pm.

Update:

So Charlotte made her official "wish" today. The Make-A-Wish ladies (Toni and Emily) came by to visit. Emily helped us fill out the "grownup" paperwork (releases and such) while Charlotte and Toni chatted it up. She told her that she wanted to go "Where Annette and her kids went". When probed for more clarification, Charlotte said "Minnie-Land" or "The place where the princesses are". AKA: Disney World! It was definitely her wish and her decision. Roger and I are both excited as well. We are tentatively looking at a winter date (Dec/Jan/Feb) to be solidified once radiation is over and we have a better idea of how her treatment plan will play out. We will get to stay at Disney for about a week and we will stay at the Give Kids the World hotel. It is a resort on the Disney property that was started by a man who wanted to make sure that kids with medical needs could have a great Disney vacation. They have a doctor and nurse on staff and (word has it) you can get ice cream sundaes 24/7. My kind of place. I think they also have characters who visit the hotel from time to time. Did I mention I'm excited? We are basically not getting a vacation this year (surprise) so this will be something special to look forward to. Once we have dates, anyone who is in the immediate area (or anyone who wants to travel to join us) is most welcome. I know we have a pretty big Florida fan club.

In other news, our nurse at the clinic called back with the answers we had about her protocol so that was cleared up. She will start a new medication next week (temozolamide) and will only be on the accutane till Sunday. Dr. Khan assured her that he is working on the insurance "stuff" and will update us when he has more news.

Charlotte is playing it pretty low key right now but managing to keep herself busy. She needs to poop but otherwise seems fine. She's gnawing on a HUGE apple as we speak. As Roger mentioned, we are getting ready to be pretty germophobic as her counts will soon plummet so be aware that playdates will be kept to a minimum.

Granny and Gramps will arrive tomorrow (hooray) and we will be on the official countdown to her birthday. Can you believe it's two weeks away?

Remember: two upcoming events for her birthday

1. The Summer Concert Series on July 9th (her actual birthday) in the Chick-Fil-A parking lot. Come out for the concert, donate blood, and bring food for the food bank.
2. Her birthday party at Romp n' Roll, Friday July 10th, 6 PM. All are welcome! We will have cake and some assorted food goodies, we'll put up the moonbounce and let the kids (and grownups) P-L-A-Y. No presents, please. We just want to celebrate HER! OH and the theme will be Tinkerbell. Charlotte wants everyone to wear pink and/or purple to the event so come decked out.

That's all I have to report for now. Some very good news.

Rachel

Monday, May 4, 2009

An Update

First of all:

For our good friends the Klauers: This Tuesday (tomorrow) is ReeseStrong Day at the Riverbound Cafe in Mechanicsville! A percentage of all proceeds for the day (breakfast, lunch and dinner) will go to the ReeseStrong fund! Come out and eat!

Also: Next Fundraiser at Glen Allen Golf (on US1) from 7 PM-10 PM on Wednesday 5/6. Mini-golf, batting cages, and driving range! Come out for the fun and a portion of the proceeds will go to Charlotte.

Today was a nice day "off" from Romp n' Roll for me. Roger and I did go back to the clinic today to meet with Dr. Khan. We reviewed the scans again and got to talk more about possibilities for the next step(s). We still don't have any solid directions, but we will meet with Dr. Tye (neurosurgery) and Dr. Chung (radiologic oncology) on Friday along with Dr. Khan to discuss options and possible side effects of these different paths.

Meanwhile, Charlotte has had a GREAT day, complete with a much needed POOP (yes, you needed to know that).

Then we had a wonderful surprise visitor! (Pictures to follow). Our good friend Carolyn Peart has an "in" with a certain character named Mary Poppins. Charlotte wrote a letter to Mary Poppins a few weeks ago and sent it up the chimney (watch the movie). In the letter, she asked Mary Poppins to visit her. Well, Mary came for a visit today complete with her magic bag and a full tea set with scones and "tea". We had a lovely time visiting with her. Mom, Granny, and Charlotte all enjoyed her company and it was so much fun. Charlotte was a delight. The best party was putting the jelly on the scone. Then she forgot about the scone entirely and just decided to eat the jelly straight from the bowl with her fingers! Emily Post may have had something to say about it but Mary Poppins thought it was just fine. We sang songs from Mary Poppins' movie ("Let's Go Fly a Kite") as well as some of Charlotte's other favorites (Frosty the Snowman). Charlotte also loved showing Mary Poppins her "new" room and talking about her pets.

After this lovely visit, we ran a few errands with Granny and now she is at home working on a sticker picture.

It seems strange to think about our new directions and timeline. It is very difficult for me to wrap my brain around it until I have some more answers. Until then, we will enjoy our rest at home with no doctor's appointments or therapy appointments till Friday (oh, goodness, what will we do with ourselves????).

I promise to upload the Mary Poppins pictures as soon as Roger brings the camera back!

An Update from Roger
A very good day for Charlotte.

We all slept in and got up around 8. Mommy did some cleaning, daddy, tried to catch up on emails and did a little laundry. Paster Ed from St. James The Less came over for a visit and CJ seem genuinely excited to see him. She actually ran up to him and threw her arms around him. He returned the favor by giving her a squeeky duck.

Rachel eventually went to Romp n' Roll for a Birthday Bash and camp training and I went to Qdoba for the big burrito eating contest but not before stopping off at RNR to get the amazingly beautiful message board made for us by Sarah and Wendy. Thanks ladies!

I got to Qdoba about 3:30 and helped with a few of the last minute finishing touches. There were'nt too many people there and I was kind of expecting a moderately small crowd since there was no one signed up for the burrito eating contest until pretty late in the game. Boy! Was I wrong!

Slowly but surely the place started filling up with friends, RNR customers, and people I didn't know. A group of guys came in asking about the burrito eating contest and I went over to chat. They heard about it via email. Another group of VCU students heard about it at the other Broad St Qdoba, and yet another group of VCU students said they had heard about it on a website that gives dates and locations of eating contests all over.

We ended up with 42 contestants and they had to move them all outside to give them directions becuse it was too loud and crowded inside!

The contest had to be conducted in waves and I was slated to go in the last round. I knew I was sunk after the first round when one guy ate 4 burritos. I did my best but had to steal water from the little girl across the table from me to get everything down smoothly. I only finished 2 burritos but they sure were good!

There was also a table with a spinnig wheel and prizes. $1 a spin. We collected almost $600 from donations and contest entry fees. That doesn't include the 20% of sales we got. I'll report a total amount when we get the final check.

Major thanks to everyone at Qdoba including Lisa and Ibo (sp?) for having us. It was a great event and I am once again amazed by the support you've shown us.

More news:

First of all, a brief Charlotte update...she ate a great dinner and then proceeded to have ANOTHER poop. Then after a little bit of TV watching, she ended up vomiting all over me and herself. We were looking at pictures (of Mary Poppins) on the computer and fortunately we missed the laptop (by inches). Thankfully, granny came over and helped clean up the mess.

She's now cleaned up and resting in bed. She seemed ok so maybe she just overdid it at dinner tonight.

ALSO, for those of you who live in the Richmond area: Many of you have asked how you can help us, especially with the business. HERE is your opportunity: Every year, Richmond Magazine names their Best/Worst of Richmond as voted by their readers. Two years ago, Romp n' Roll was voted best Kid's Gym (last year it wasn't a category) and for the last two years we got 2nd place for Best Place to Hold a Kid's Birthday Party and Best Website. We just learned (as we were sitting in the clinic today and spied a Richmond Magazine) that the contest is going on NOW and entries are due by May 8th!!!

Ballot entries cannot be filled out online. You must buy a Richmond Magazine or go by the Richmond Magazine office to get a ballot. They must be POSTMARKED by May 8th. You also must vote for at least 20 categories for your ballot to be valid. The categories in which Romp n' Roll would be eligible this year are: Best Kid's Gym, Best Parties and Best Kid's Art Classes

Richmond Magazines are sold at Ukrops, Barnes and Noble, and other fine local retailers. Thanks for your help with this! I know we have a fabulous network so this will help us get the word out!!!

Thanks in advance for your help with this.

Rachel

Sunday, April 5, 2009

It has Been an Up and Down Day

It has been an up and down day. She slept fairly well and we spent most of the morning watching DVDs, reading books, and making our "rounds" both inside the hospital and out on the play deck. Taking the morning meds (oral) was still a battle. No pooping yet but I have heard a few toots.
Our best part of the day came around 3 PM when Charlotte got a special visitor: ELMO! One of our Romp n' Roll families (the Murphys) have an Elmo costume leftover from their daughter's birthday party and they stopped by to visit with an Elmo balloon as well (pics to follow). Charlotte seemed to enjoy Elmo's antics although she was a little reticent about hugs. She did talk to Elmo a lot about all his Sesame Street friends as well as her friend Dora. Then Elmo even got to visit with a few other kids on the unit. Thanks so much to the Murphy family! You really brightened her day...
Then we went to "Sunday School" and Charlotte made a butterfly, got a puzzle, and heard a few stories. The event was enjoyable enough but I just had to laugh at the concept of trying to share heaven/hell theology with a bunch of preschoolers. We were treated to a good ol' Bible tract and the concept that "There are only two places to go when you die: Heaven or to live in the fiery pit". [This is LITERALLY what the woman said to these kids]. I don't think Charlotte or any of the other kids (all but one were under the age of 5) really got that... The person sharing the experience was nice enough but as she was telling Bible stories, she kept saying things like, "Remember the time that Jesus was crucified and all the priests in the temple were against him?" Her "verbage" was not really for the pre-K set and I found it amusing that she would even consider the fact that these kids would "remember' theses stories, let alone have heard them before.
Anyway, I digress. Charlotte had a good enough time and that's all that matters...
At the moment I am trying to wipe "sauce" off of the cheese and bread that makes up the pizza. Apparently the cheese and bread are good; just not the sauce in between. And then when I wipe off the sauce it's "too soggy". We really need a grilled cheese option on the culinary menu (sadly there is none).
So here is the really bad news of the day: we were returning from Sunday School and had just stopped at the nurses station since her line was beeping and she needed a new flush of Leucovorin. Her nurse checked the line and sent us on our way. I got us back to the room, proceeded to lift her out of the stroller, and her line went in the other direction. Yes, Ladies and Gentlemen, her Central Line literally fell OUT of her chest!
Fortunately, I didn't panic and Charlotte hardly reacted at all. I asked her if her chest hurt and she said "not anymore". I called the nurses and they all came in and looked at it...shocked, to say the least. Also on a good note, it didn't bleed as some central lines do when they are "unplugged". My personal theory is that her body has rejected the line (rather than accepting it and forming scar tissue on the inside to hold it in) and it just kinda pushed itself out. That would explain the lack of blood.
So the ped on call said that we probably can't get surgery done to repair the line until tomorrow (apparently surgeons ascribe to the don't-work-on-Sunday motto that Chick-Fil-A and Ukrops ascribes to as well...except in cases of extreme emergency...which this isn't). BUT we have to keep fluids pumping through her to flush the methotrexate AND she still has to get some of the Leucovorin SOOOOO....the nurses had the extreme pleasure of putting an IV in her left arm. Plus we will need to get blood draws at 3 AM to check all her levels. More fun. It was not a pleasant experience but the nurses were (of course) awesome and got her IV in on the first stick. Hallelujah.
Just another bump in the road. But it still sucks.
I feel like lately, all the "little" bumps in the road are magnified. When you're driving down the road in a 2009 Cadillac Escalade (Hybrid, of course), it's smooth sailing and even if you hit a pothole, you can keep cruising along OK. But we're riding in a beat-up 1978 Chevy Nova with a rebuilt transmission, 200K miles, and we're barely passing inspection. We feel EVERY little bump in the road and we're on a cross country trip. So lately even the littlest thing (something that in the grand scheme of things is probably not that important and certainly not high priority) can upset me and ruin my day/week/month/life.
Charlotte has developed a few "odd" behaviors and sayings in the last few days. One is that she now LOVES the lemon cleaning wipe that comes with the silverware on every food tray. She has to clean her hands and face after every meal with it. The other is that she has said a few things like, "Kittens don't die" when looking at a picture of kittens. When I ask her about it she expands, "Kittens don't die because they're babies." Not sure where this stream of logic comes from or why she's suddenly obsessed with it butI find it fascinating. She really has such an interesting perspective on the world.
So daddy is on his way here and I'm very happy to give up the reins for the evening. Please pray for a quick fix to this central line mess as well as a quick flushing of this methotrexate from her system so we can get on with the rest of the chemo.
Rachel

Update from Roger:
Please join me in wishing strength to the Porterfield family as they mourn the passing of their little girl, Leah. We met them the second time we came to the hospital. Leah was admitted after they were involved in a car accident.
I'm not sure if you can view their website but here's a link...
http://www.carepages.com/carepages/leahaveryporterfield/updates/2072395?client_code=vcuhealth&ipc=mur
Love to all,
Rog