Adrienne won't see the doctor until June 11 so there isn't much to report medically. She has a CT on June 7 before seeing the doctor. I guess they want it done on their equipment, as most places do, but I worry about all the xrays she gets.
New York is going great and Adrienne is interested in almost everything she sees, including watching a guy get arrested in a sushi restaurant on Saturday night because he tried to leave without paying. That's NY for you. She likes the people watching, the food and activities, just about everything. The internship is going well and she's learning a lot, including that she doesn't want to be a stock analyst for a living. Oh well, it's a great experience.
The apartment/dorm is coming along. She now has the all important shower curtain and has figured out how to toast bread on a gas stove. I know, it made me worry too, but she promised that she was careful.
Wednesday, May 30, 2007
Wednesday, May 23, 2007
New York Update
Wow, it has been a whirlwind few days. Adrienne is settling in nicely in her NY apartment. We thought it was more of a dorm but it really is an apartment with a full kitchen and shared bathroom. She isn't fully moved in and needs lots of things (most importantly a shower curtain) but she seems to be enjoying life thoroughly. She started her internship yesterday and she's excited to have her own cubicle, e-mail address, and phone extension, as well as a drawer with her name on it in the company frig! And they seem to be letting her do a bit of everything, including calling England to do some research.
We saw the doctor on Monday and, for now, things are a bit up in the air. The doctor doesn't think the valproic acid is helping and wants to get Adrienne on something new as soon as possible. The two clinical trials that he wants to put her on do not accept patients who have had allo transplants. He is trying to get an exception for her since she is so well engrafted. If he can't do that, she'll go on a very low dose oral chemo and he promises there are no side effects. She'll stay on that until the fall when another (more promising) clinical trial opens up. The trial is being written to allow patients with allo transplants who are well engrafted and is awaiting FDA approval. We are supposed to have a firm plan in two weeks.
Adrienne is enjoying everything that is New York. She's becoming a pro at getting around on the subway and is really enjoying the people watching, my personal favorite passtime. She also saw her first celebrity in NY, an actor from Prison Break riding his bike with his family. We are all very grateful that she has this opportunity.
We saw the doctor on Monday and, for now, things are a bit up in the air. The doctor doesn't think the valproic acid is helping and wants to get Adrienne on something new as soon as possible. The two clinical trials that he wants to put her on do not accept patients who have had allo transplants. He is trying to get an exception for her since she is so well engrafted. If he can't do that, she'll go on a very low dose oral chemo and he promises there are no side effects. She'll stay on that until the fall when another (more promising) clinical trial opens up. The trial is being written to allow patients with allo transplants who are well engrafted and is awaiting FDA approval. We are supposed to have a firm plan in two weeks.
Adrienne is enjoying everything that is New York. She's becoming a pro at getting around on the subway and is really enjoying the people watching, my personal favorite passtime. She also saw her first celebrity in NY, an actor from Prison Break riding his bike with his family. We are all very grateful that she has this opportunity.
Tuesday, May 15, 2007
Quick Visit
Adrienne is home for just a few days before leaving for New York on Friday. We have a lot of things to take care of in a few short days, with the most important being getting her "deported." Tomorrow, the port that's been there for almost 2-1/2 years will be removed. Today we met the surgeon and really liked her. She usually doesn't work on people over 18 but she made an exception because my friend's husband (a PICU doc) asked her to make an exception for Adrienne. She knows almost every surgeon Adrienne ever had at LPCH so it was nice catching up. Small world.
Sometimes, I try to express my thoughts and feelings about Adrienne's disease but can't find the words. I was looking at Alese's web site and read what her mom wrote, and she said it very well. Here's a link if you're interested: http://www.alesecoco.org/Parents.html#mom. Also take some time to read Alese's journal. Her parents want to start a foundation to research cures for Hodgkin's Disease for people like Adrienne, Alese, Erika, and many others.
These are nervous days for us and we're trying not to think about Adrienne's disease all the time. The doctor says it could take 6-10 months before Adrienne has a response to the valproic acid. It's hard but as long as Adrienne is feeling well, we're going to wait for a response. We don't think intensive chemo is the answer for her and we'd rather she enjoy her life for the next few years than spend it in doctor's offices and in the hospital, or worse.
Sometimes, I try to express my thoughts and feelings about Adrienne's disease but can't find the words. I was looking at Alese's web site and read what her mom wrote, and she said it very well. Here's a link if you're interested: http://www.alesecoco.org/Parents.html#mom. Also take some time to read Alese's journal. Her parents want to start a foundation to research cures for Hodgkin's Disease for people like Adrienne, Alese, Erika, and many others.
These are nervous days for us and we're trying not to think about Adrienne's disease all the time. The doctor says it could take 6-10 months before Adrienne has a response to the valproic acid. It's hard but as long as Adrienne is feeling well, we're going to wait for a response. We don't think intensive chemo is the answer for her and we'd rather she enjoy her life for the next few years than spend it in doctor's offices and in the hospital, or worse.
Wednesday, May 09, 2007
Emotional Week
On Monday, our friend Alese passed away due to respiratory complications resulting from her Hodgkin's Disease treatment. Alese was diagnosed in 2002 and since then had a story similar to Adrienne's. In the past months, her disease became very aggressive and she tried very difficult chemos to get it under control. Those chemos suppressed her immune system so much that she got a fungal infection that ultimately took her life. Our prayers go out to Alese and her family.
Adrienne had her CT scan yesterday and we got the results last night, not exactly what we hoped to hear. The tumors in her abdomen and spleen are stable but the one in her lung showed a fair amount of progression. It is now nearly 3 cm. We've asked the doctors at City of Hope and in NY to come up with a new plan to start when she goes to NY. There are a number of options on the table but we probably won't know which one she'll do for a couple of weeks.
Adrienne is feeling well except for being tired, but that's probably because she doesn't get enough sleep as a busy college student. Emotionally, it's very hard for all of us living from scan to scan. With Erika and Alese's deaths under very similar circumstances, we are staying particularly vigilant and wary of treatments that are just too risky. We definitely don't want to go with "big guns" chemo and are looking for something that will keep her disease under control with a minimum of side effects.
Adrienne had her CT scan yesterday and we got the results last night, not exactly what we hoped to hear. The tumors in her abdomen and spleen are stable but the one in her lung showed a fair amount of progression. It is now nearly 3 cm. We've asked the doctors at City of Hope and in NY to come up with a new plan to start when she goes to NY. There are a number of options on the table but we probably won't know which one she'll do for a couple of weeks.
Adrienne is feeling well except for being tired, but that's probably because she doesn't get enough sleep as a busy college student. Emotionally, it's very hard for all of us living from scan to scan. With Erika and Alese's deaths under very similar circumstances, we are staying particularly vigilant and wary of treatments that are just too risky. We definitely don't want to go with "big guns" chemo and are looking for something that will keep her disease under control with a minimum of side effects.
Friday, May 04, 2007
Plans for NY
Adrienne had one exam this week and she has two more next week. I'm flying to California on Friday to help pack her up and drive her back here to Las Vegas. She's putting most of her stuff into storage and just bringing what she needs for New York so the packing shouldn't be too bad.
The plan for the summer and fall is becoming clearer. We'll fly to New York on May 18 and move Adrienne into the dorms at NYU on May 20. She sees the doctor on May 21 and starts her internship on May 22. She'll stay in NY until August 5 and then will come to visit us here in Las Vegas as well as her dad in Southern California. She has to be back in NY on August 27 for orientation and classes begin just after Labor Day. We're planning to fly out for Thanksgiving. We were there the same time of year in 2002 for Adrienne's wish with the Make a Wish Foundation and it was really, really cold, but a lot of fun. I think we'll skip the Macy's Thanksgiving Day Parade this time.
Adrienne has a CT next Tuesday. It feels like they come faster and faster. She's now on a 6-week schedule for CTs, with PETs every second or third time. These continual scans are mentally taxing but we need watch her closely to make sure her disease doesn't get out of control.
The plan for the summer and fall is becoming clearer. We'll fly to New York on May 18 and move Adrienne into the dorms at NYU on May 20. She sees the doctor on May 21 and starts her internship on May 22. She'll stay in NY until August 5 and then will come to visit us here in Las Vegas as well as her dad in Southern California. She has to be back in NY on August 27 for orientation and classes begin just after Labor Day. We're planning to fly out for Thanksgiving. We were there the same time of year in 2002 for Adrienne's wish with the Make a Wish Foundation and it was really, really cold, but a lot of fun. I think we'll skip the Macy's Thanksgiving Day Parade this time.
Adrienne has a CT next Tuesday. It feels like they come faster and faster. She's now on a 6-week schedule for CTs, with PETs every second or third time. These continual scans are mentally taxing but we need watch her closely to make sure her disease doesn't get out of control.
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