Monday, July 13, 2009

Interesting Day Yesterday

I never heard from the media folks at the Houston Astros so we decided to just go and buy tickets. They have a cool deal for the summer that children get in free. We drove down to Minute Maid Park and found a tremendous parking spot right across from the Left Field entrance. Cancer really, really sucks but some of the percs are very nice, like handicapped parking!

We got in an got settled in our very nice seats. The weather is extremely hot and humid and we were "angsting" about where we would sit so the sun wouldn't be shining right on Charlotte and where we could retreat from the heat if it got too overwhelming. We held up the line at the box office trying to get just the right seat. Turns out we didn't need to worry; the roof was closed and the weather inside was fine.

All morning long, CJ had been kind of lethargic and I was starting to get worried that maybe she was getting sick or something. The "or something" part was actually really worrying me. It's been a brutal couple of weeks within the Caringbridge community and several of the children whose stories I've been following have passed away. Whenever I hear of a child passing, I go back in the journals and read several of the posts leading up to the passing annpouncement to see what happened and how things progressed. Yesterday that practice kind of haunted me as Charlotte's energy level kept going down and I got more and more worried about what might be happening to make it happen.

At the Astros game, we went into the store to get her a hat or jersey (pink, of course) but she would have none of it. She just wanted to be held and bury her head in my shoulder.

She had no fever, she wasn't feeling sick, she wasn't in pain, and she was eating (certainly helped make a dent in a bag of popcorn and some ice cream). She even wanted to walk after a bit (bored I guess) and we walked about 3/4 of the way around the stadium before she petered out and made me carry her.

So I was at a loss to figure out what was wrong and the fear was threatening to take over.

We lasted until the 7th inning stretch and then headed home. Charlotte conked out on the way back to the house (the only other warning sign) and I took a nap too. When we got up we headed over to our hosts, the Beasley's, home for dinner. Charlotte was STILL lethargic and I was wondering if we were going to have to take her to the emergency room. The thing was, other than the low energy and the nap, nothing else stood out.

So my habit of checking out the lead-up posts on all those other Caringbridge sites was backfiring on me because I was starting to go through worst-case scenarios.

Then, all of a sudden, she seemed to brighten up remarkably and told me, "Daddy, I pooped!"

That was it. Rachel remembered her mother saying something about that kind of pattern before and we also realized that it had been multiple days since her last BM. It all made sense.

So it all comes back to poop. The theme of our lives.

After that, Charlotte was like a different kid. She was sitting on the couch, entertaining herself like usual, singing to Mickey, rading stories to herself, watching the occasional video...

We headed back to the other house (where their daughter lives) and tried to get to bed at a decent time because we had early Monday appointments. Of course CJ was now wired and we had to set her up with books and videos while we rested. Fortunately, she took my word for it that we needed to go to sleep so she let me clear things off the bed and pull up the covers.

This morning we headed out early and got the MD Anderson in plenty of time for our whirlwind day of waiting.

I keep trying to put my "day of fear" into some kind of perspective and I just can't right now. It was mostly irrational fear fed by looking at other kids' sites, most of whom had conditions not related to the PNET in Charlotte's head. I need to digest it a while longer. I also don't think I'm describing it adequately. I don't even think Rachel has a clear idea of how I was feeling. Guess she will now, sort of.

The best news of the day is that we called Ronald McDonald House and they have room for us!!! We'll be heading over tonight to get settled in. SO that means we need to contact the Hoston Ground Angels to see if they can give Rachel a ride to the airport tomorrow on very short notice.

I'm on it!


Welcome to our new home away from home. We have been admitted to the Ronald McDonald House and can be here for the next 45 days if needed. At only $25 a day, you can't beat the accommodations! It is fabulous with a play area, lots of space for cooking, we have our own room with 2 beds and a bathroom, and even the "house dog"...a labradoodle named Mogie.

We can receive mail while we are here. The address is:
1907 Holcombe Blvd
Room 27
Houston, TX 77030

The morning was pretty much spent with paperwork and an anethesia assessment and now we are just resting before our trip over to the proton center at 3 PM. Charlotte had to be NPO at 5 this morning because of the anesthesia they will use and, of course, she did not get up at 5 AM to eat so we are all trying not to eat in front of her. But mommy and daddy have to keep their strength up so we are sneaking bits of cracker and granola bar here and there. She is holding up pretty well. We will have to FEAST tonight.

I'm very glad that we have the housing settled before I have to leave tomorrow morning. I am not looking forward to leaving the 2 most important people in my life for almost 2 weeks but we do what we gotta do!

I think we're off to play and explore so we'll talk to everyone soon.



What a long day. A good day. A productive day. But a L-O-N-G day.

As mentioned earlier, we have found our lodgings here at the Ronald McDonald House. It's such a great place for families in our situation. We are about a mile from the main MD Anderson campus and the shuttle can take us pretty much anywhere we need to go. It even goes to the grocery store once a day. They have full kitchen facilities for us to use and lots of community items like seasonings, eggs, condiments, etc. so that cooking is pretty easy and doesn't always have to be ramen noodles!

Plus, almost every night, a community group comes in to provide dinner and sometimes even additional activities. Southwest Airlines is bringing a group tomorrow and rumor has it that their events are not to be missed. Some of their volunteers are already here starting to roast the brisket for tomorrow night (can you tell we're in Texas?).

After we left RMH (as we will probably refer to it in future posts), we took the shuttle over to the proton center which is pretty much on the other side of the hospital area. It's about a 20-30 minute ride by shuttle. Charlotte was pretty quiet and mellow most of the day. She hadn't had anything to eat since last night and they'd only allowed her about 4 oz of juice after 10:30. Amazingly, she only told daddy one time that she was hungry. When he told her she couldn't eat until after she saw the doctor, she never asked again. What a trooper. I, on the other hand, was famished!! But didn't want to eat in front of my NPO child.

We got to the proton center and had very little wait. We immediately met a string of professionals including our Nurse Practitioner, the oncology fellow, and then Dr. Mahajan who is her radiation oncologist. We discussed the treatment plan, they went over all the possible side effects, and then we discussed the fact that she would be having whole brain and spine radiation after all. Roger and I were confused for a little while, mainly because Dr. Wolff and Dr. Khan had maintained that proton therapy was not necessary for whole head and spine radiation and that we were going to focus on the tumor area. Turns out that's not exactly the case and in fact, she stands to benefit more from whole head/spine radiation due to the location of her tumor and should receive less effects from the radiation on areas such as her thyroid gland and other vital organs by receiving the proton therapy.

After we met with the radiation oncologist, the anesthesiology crew came in. Dr. Porche is her primary anesthesiologist and she is such a sweetheart. She just swooped Charlotte up in her arms and began to sing to her and ooh and ahh over her. So nice! The nurse anesthetist (sp?) also informed us that while she was receiving proton therapy, they would change her dressing twice a week, do all the line flushes, and basically take care of anything else that needs to be done with her lines. Hooray.

Finally it was off to the simulation. Charlotte got to actually "administer" her own juice by starting the pump and pushing the syringe to flush the line. As tired as she was, she was out in no time. Then we got to meet with the research nurse to go over permissions for them to study Charlotte's blood and DNA as well as participate in a longitudinal data study for basically the rest of Charlotte's life to help them study long-term outcomes of proton therapy. This means that data such as hormone levels, cognitive tests, etc. will all be collected at regular intervals on her. Anything that will help kids down the road, that's what I say!

We also met the Child Life Specialist who told us about some upcoming kid's events and offered some ways that their services could be helpful.

Did I miss anyone? There were a lot of people to meet. Soon enough, Charlotte's procedure was finished and we went to meet her in recovery. It took her FOREVER to wake up but she finally roused (with some assistance from us) and we shuttled her back to RMH with some dinner. Roger took Merrilee's car (she had left it for us at the proton center) back to their home in Jersey Village and collected all of our belongings and made his way back to RMH all in one piece.

We must make yet another (although I'm sure it will not be final) note of thanks to the Beazley family for their most gracious hosptiality and help with this process. they have gone above and beyond and we are grateful to them as well as to Mitch and Meredith Hayes for making the connection.

So we are basically "moved in" and settled. Clothes are unpacked and put in dresser drawers. We have a moderate supply of groceries and snacks that will last until the next grocery trip. I have given Roger many final instructions and reminders on her appointments, etc. (I tend to be the "manager" of all that information. Surprised?). I am leaving early tomorrow morning and only taking my big purse/tote bag with me. No clothes (they can stay here for my return trip), no diaper bag (whoopee), no stroller. Just me, myself and I.

See many of y'all back in Richmond. I've got a lot of work ahead of me and Charlotte and Roger have quite the adventure ahead of them.


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