Thursday, February 26, 2009

New Photos of Charlotte and news from Dr. Khan

By special request: we finally posted a few new photos in the photo section. Check out Charlotte working so hard in therapy!
We're off to see Dr. Khan this afternoon and will hopefully have more news about chemo timeline later today.
We said goodbye to Grandpa and Grandma Bonita this morning. They're headed to Florida (so jealous...even with the slightly warmer weather, I'm sick of winter).
So, anybody else see LOST last night? Dude! What an awesome show! It is definitely the only show I keep up with anymore on a regular basis and they only one that I HAVE to see "live" each week. I'm totally amazed by the acting and the amazing storytelling. True genius.
Gotta go love my daughter.
Rachel


Our visit with Dr. Khan is finished. Lots of news...
First of all, the parking gods were with us today because finding a spot in the garage was totally hassle free. I think Roger is my good luck parking guru. He has the best karma for stuff like that.
Of course, getting in to see the doctor was not nearly as lucky. It wasn't horrible, but we were definitely on "hospital time". Charlotte was sufficiently entertained by volunteers and the wonderful music therapist at MCV (who could that be? Thanks, Melissa!).
The Hem/Onc clinic is like a super-charged doctor's office. We loved the animal-themed rooms (especially for a kid like Charlotte who loves wildlife) and the in-room entertainment is super deluxe (DVD players and VCRs in every room). So even though we had to wait, we had a lot to entertain us.
Dr. Khan took some history and got an update. Our current plan is to begin chemotherapy a week from today (why does everything seem to happen on Thursdays for us?).
Some not so good news is that because she's not back to being "potty trained", they will need to put in a catheter on Wednesday to collect an accurate urine sample for about 24 hours. She will also get a hearing test to get a baseline as some of the chemo drugs can cause temporary and/or permanent hearing loss in kids.
Thursday will start at about 9 AM in the clinic with IV fluids and getting everything "ready". Then we will be admitted into the hospital until probably Monday. She will have a course of 4 different chemotherapy drugs as well as other medications that combat some of the effects of the chemo. everything will be administered via IV. We will be back on the 7th floor of the main hospital but do not need to be in the PICU or the Intermediate Unit.
Roger and I are currently figuring out our schedule for the weekend and we will let you know if we need any assistance. The good news is that Aunt B will arrive on Friday so that will help a lot!
She will have PT/OT at Children's until this starts and may even be able to continue therapy at the hospital as long as her energy level stays up.
For those wondering, visitors will be welcome as long as the "normal" precautions are observed. Please don't visit if you are fighting a cold or recently got over being sick. We don't know at first how she will react to all of the medications so don't be surprised if you do choose to visit and she is not up for "social" time.
I guess that's all for now. I'm sure Roger will add his two-cents this evening.
Rachel

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