A few family and friends who are interested in visiting have requested our schedule...I thought I'd note it here.
April
Thurs 14-Wed 20
May
Sunday 1-Wed 11th (we may come home for Friday and Saturday night--TBD)
Sunday 22-Friday 27th
May 5 and May 26 are the longest days and will require the greatest amount of effort for all involved. Bloodwork will be required every hour from 9am to 9pm those days...so we'll need to stick close to the clinic, and will have to be rather quiet as the kids will have an "IV Saline Lock" in their blood draw site. (Yuck)
Monday, April 11, 2011
Thursday, April 7, 2011
Home!
Yesterday's appointment was much better. Jenna, instead of being terrified to go back, worked hard to prepare herself for a successful experience. She woke and drank a lot of water without even being reminded, ate a big breakfast and had a great attitude. I heard her chanting to herself in the bathroom: "I know I can do it, I know I can do it, I know I can do it...". No tears yesterday--just celebrations of success. After their appointments we found a pretty place on the Stanford campus to get their bikes out of the car.
We still have to wait until mid week next week to be certain the kids can be in the study. The purpose of the last three days was to get consistent blood work that will be evaluated to determine their average cystine levels. They must have levels below 1.0 to participate. Since they began taking Cystagon in 2006 they have never had levels above 1.0 (Jenna's was 2.5 at diagnosis, Patrick's 3.8). The blood samples take a lot of time to prepare and evaluate after they are mailed to Scripps...so we will wait to hear.
Tuesday, April 5, 2011
Hard Day
We slept in a bit more, got ready a bit later and didn't take as much time for food and water; and it was a rough one. No blood was acquired from Jenna, as two attempts to draw, by two different nurses, resulted in nothing but a meltdown by our little lady. The poor girl is so darn brave (hasn't cried at a blood draw for over two years), and she was caught off guard today for one reason or another. I blame it on a lack of water this morning, and will get her up bright and early tomorrow to get her on the right track. I pray all goes well tomorrow; that she doesn't hurt, and that she is able to overcome the trauma of today. Our new friend (and trial coordinator) Xiao xiao, was very supportive and kind today--and made the decision to forego the bloodwork after two failed attempts; claiming that patient comfort is the most important thing of all. He didn't like to see her upset; nor did Patrick, who fights with his sister constantly, but asked to leave the room and became rather frightened when she started to cry. I am sure my headache right now is related to the stress of the morning. We all react...just in different ways.
Jenna, Patrick and I bellied up to the counter at a place called "Slider Cafe" after their appointment and had breakfast sandwiches. Our wonderful server (Mieka was her name), created a beautiful plate of strawberries and whipped cream for Jenna, who loved it enough to order seconds. It was nice for Jenna to be so indulged after her rough go this morning. We also met Bob, a young MBA graduate who sold us his 2nd generation iPad as we ate breakfast...it was a wonderful adventure!
We planned to go to the beach and introduce Tucker to sand and surf; but I hit the wall. We had a quiet afternoon, the kids did schoolwork with Grandma, and Jenna and I had an outing to the dollar store. She spent $4 on a picture frame and lipstick for Grandma, crazy straws for Patrick, and a chew toy for Tucker. Jenna was emotional all day today, and we were ALL exhausted. Retail therapy did Jenna and me wonders--it was well worth the four dollars!
The kids and I miss Kevin and look forward to getting home tomorrow. I realize after our first extended visit here that this will surely be a challenging couple of months; but will be well worth it in the end if our kiddos may feel better!
Love, T
Jenna, Patrick and I bellied up to the counter at a place called "Slider Cafe" after their appointment and had breakfast sandwiches. Our wonderful server (Mieka was her name), created a beautiful plate of strawberries and whipped cream for Jenna, who loved it enough to order seconds. It was nice for Jenna to be so indulged after her rough go this morning. We also met Bob, a young MBA graduate who sold us his 2nd generation iPad as we ate breakfast...it was a wonderful adventure!
We planned to go to the beach and introduce Tucker to sand and surf; but I hit the wall. We had a quiet afternoon, the kids did schoolwork with Grandma, and Jenna and I had an outing to the dollar store. She spent $4 on a picture frame and lipstick for Grandma, crazy straws for Patrick, and a chew toy for Tucker. Jenna was emotional all day today, and we were ALL exhausted. Retail therapy did Jenna and me wonders--it was well worth the four dollars!
The kids and I miss Kevin and look forward to getting home tomorrow. I realize after our first extended visit here that this will surely be a challenging couple of months; but will be well worth it in the end if our kiddos may feel better!
Love, T
Monday, April 4, 2011
Feeling Settled
While we still have to wait until Wednesday of this week to know if the kids are accepted into the study, I did learn from Xiao xiao that the powers that be at the Pharma company have made an exception to the weight requirement and Jenna will be allowed to participate if all other benchmarks are met! This is great news!
Thanks to family and friends for checking in and for the well wishes. We are all getting the hang of it!
Love TJ
We are at a Residence Inn in Newark, because every hotel in Palo Alto is filled with fans and teams at the NCAA Women's BBall Finals. It's a quick jaunt over Dumbarton Bridge (the kids still get a kick out of it); and with traffic it takes 30 minutes to get to the clinic. We got there on time today (we were lost and late and flustered last time) and we were out of there in an hour! The visits this week are quick ones; with blood draws and a check of vitals and off we go. Both kids were ultra brave today for their "arm pinches"...not a tear to be seen. Patrick hid himself under the chairs in the waiting room of the clinic; making me wonder if I'd have to create a scene prying him out. The promise of a trip to McDonalds after his blood work was enough to set him free.
 |
| Poolside with Grandma Juanita and Tucker-the-Dog |
Grandma Juanita is here with us and she is so helpful. She stayed at the hotel this morning with Tucker (we brought the dog with us to this pet-friendly hotel), and she finished all the laundry before we made it back from our appointment! Before heading to the pool for fun, Grandma spent time with each of her grandchildren (separately) doing homework. I must admit that it is very convenient, when the kids are going to miss 22 days of school, to have a woman who taught Kindergarten for 30 years tutoring them! She is so patient and creative with Jenna and Patrick! I am so grateful for her help.
 |
| Brave days call for big treats. Lunchables? They were over the moon! |
We had a picnic by the pool today for lunch. I typically don't go for Oscar Mayer Lunchables, but as you can see today I made an exception. Late this afternoon we headed into beautiful Palo Alto to walk along University Avenue and peek into a few shops before dinner. We discovered a quiet, expansive Business Park on the way home where the kids were able to ride their bikes and blow off some steam before bed. Tucker got to play fetch, too--so all creatures were happy.
Thanks to family and friends for checking in and for the well wishes. We are all getting the hang of it!
Love TJ
Monday, March 28, 2011
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
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!
Sunday, March 27, 2011
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
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
Saturday, December 4, 2010
We had a lovely day today celebrating the kids' 6th Birthday. Many kids from kindergarten and few other very special friends joined in the fun! The Art Beast Studio here in Sacramento did a wonderful job! They are a non-profit organization benefiting the Tubman House wakingthevillage.org/tubman.html Click this link to see the photo album!
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