Day 1

We are home after visit #1.  It is one of 6 that we'll take between now and May 27th, assuming the kids are accepted into the study.  The car travel time is the hardest part.  The kids are restless and they argue, they are thirsty, have to pee, have to poop, are hungry, "can I hear a different song"?  This is not unique to our children, of course; but it makes it no less annoying.  I have to practice breathing peacefully.  I need to start yoga classes again.

It takes 10 minutes from hotel (where we all slept like babies) to clinic.  There is currently a building under construction for Stanford's "Clinical and Translational Research" department.  Until then studies such as the "RP103 Delayed Release Cystagon Trial" take place in a rather small medical office building about 100 yards from Lucille Packard Children's Hospital.  It is a beautiful campus and the kids will have fun riding bikes around it on future visits. We walked from clinic to the main children's hospital during our visit so the kids could have EKG's done.  The EKG, as you might imagine with all those wires and what-not; was a very scary thing that ended up being quite fun...mostly it tickled. 

At tuck-in tonight I learned that Patrick's top three experiences of the trip were: 1.  The pool and hot tub (and bathtub!) at the hotel. 2.  Our lunch at California Pizza Kitchen today. 3.  The EKG! 

Jenna's were 1.)  Meeting Xiao Xiao Gao, (pronounced "shao shao gao", he is the drug study coordinator; an efficient and very accommodating young host who aspires to be a surgeon).  2.) The hotel pool and hot tub. 3.)  The DUMBarton Bridge.  Seriously.  Yesterday, upon entering our hotel room, she asked: "well where is my little welcome basket?".



Jenna weighed in at 41.2 lbs.  Xiao Xiao can't tell us much about our chances; but it seems likely that both kids will be accepted.  The data from today's and next week's visit will be given to the Pharma. company, who will make the decision based on their own and the FDA's guidelines.  Dr. Minnie Sarwal, the pediatric nephrologist who saw the kids today is going to recommend that Jenna is a good candidate for the study in her professional opinion   I will be able to share the official answer next Wednesday afternoon.

The bummers were a change in medication schedule to 9am/3pm/9pm/3am which will be hard to get used to and will have us waking the kids up twice a night.  And Dr. Sarwal was concerned about the kids' cholesterol levels and that they are on statins at such a young age.  She is ordering special blood work for next week; to evaluate further. These are good things to learn as we go.  To see some of the best doctors in the field for so many visits will surely be enlightening.

Love, TJ

Homework on the way to Stanford lasted about 10 minutes.

The kids with Xiao Xiao and Daddy

They made a little pal while waiting at the Cardiology Clinic

Jenna's EKG (required for ANY type of drug study)

He was terrified, but it wasn't so bad!

Lunch. The binoculars were a big part of the trip. Jenna wore them everywhere; like a little birdwatcher.

We had a little lemonade stand in the sunshine when we got home!

 

 

 

 

 

 

 

Drug Study Trip #1

We arrived in Palo Alto this afternoon and are settled into our hotel.  The kids are sound asleep at 7:30pm after a hearty dinner at Max's Opera Cafe at the (really fun) Stanford Shopping Center.

The drive took 2.25 hours and was relatively easy; but only because I had Kevin's help.  We had to stop 2 times for bathroom and food breaks.  My friend Sydney gave us wonderful directions through Stockton, Pleasanton and over the Dumbarton Bridge (the kids loved that name--repeated it 20 times each).  The weather was cloudy all day, clearing just before sunset.  It is supposed to be sunny tomorrow and we are all ready for that! 

We are staying at the Marriott Courtyard Hotel in Los Altos.  We are about 10 minutes from the clinic.  We are to arrive there at  8:30 am tomorrow and I have no idea what the day will be like.  How long?  What will we do?  Who will we see?  Will the kids have bloodwork tomorrow?  Will they give us a better idea if Jenna has any chance at all, considering she is still a slight 42 lbs.?

After tomorrow's appointment we will head back home for a normal school week.  Grandma Juanita arrives to Sacramento on Saturday and will travel back here with us next Sunday for our second, and much longer, visit.  We will be here through Wednesday of next week.  At the end of that visit the "screening period" will be over and we will know for certain if Jenna and Patrick have been accepted into the study.

I am grateful that Kev is here with me for this first trip.  There are so many logistics to learn.  Once I have the lay of the land I will feel better about coming back.  We have two rooms that adjoin and the hotel has a sundry shop, laundry room, pool, hot tub and bar.  What more could one need...besides maybe a kitchenette?  We're going to be dining out an awful lot. 

Tucker the dog is having a sleepover at our (dear) neighbor's house.  Here's hoping he's a good boy.  Jenna had a really tough time leaving her dog.  I wish he could come on these visits with us; but the hotel won't have animals...

I will post tomorrow after our inital visit.

Love, Teresa