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.
Tuesday, May 15, 2007
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.
Friday, April 27, 2007
Lots of News
I flew to California yesterday to spend some time with Adrienne and accompany her to her doctor's appointments today. Adrienne picked me up at the airport, and after a nice dinner in the village of Claremont, we went back to the hotel and watched Grey's Anatomy in bed. She was quite tired after a few late nights but otherwise, she looks good.
We got up early this morning and checked e-mail. Hmmm, there was a message from DHL saying that Columbia is sending her a package. A turn down usually comes in a regular letter through the USPS, an acceptance comes in a package, but we didn't want to get too confident so we put it out of our minds for the day.
We arrived at City of Hope very early on Friday morning. Adrienne was scheduled for a pelvic ultrasound and was supposed to have a full bladder but, despite drinking 50+ ounces of water, her bladder wasn't full enough. So, we went off to the clinic to draw labs and wait for the water to go to the right place. Once again, Adrienne's port wouldn't draw and she made the decision pretty much right there to get the port out as soon as possible. After a needle poke, we went back to radiology for the ultrasound. Hmmm, the problem, an enlarged uterus on the last two CTs, looked normal on the ultrasound. Her oncologist compared the ultrasound and the last two CTs with her gynecologist, and he thinks the valproic acid caused some positive changes in the endometrium though he's not sure why. Just an interesting and positive development. There has never been a case where Hodgkin's Disease appeared in the endometrium but, as Adrienne's doctors have said, she doesn't follow the rules.
Adrienne had an echo and saw the cardiologist. Good news: her cardiac function is stable and near normal since she's taking the two cardiac meds. The doctor increased the Coreg dosage once again and wished her well in New York. The plan is to return in December and not see a cardiologist in NY unless she has a problem. That's very good news after the last few years of constant cardiology appointments and tests.
After we returned to CMC late in the afternoon, there was an e-mail from Columbia welcoming Adrienne as a visiting student. This was very exciting news. So, the plan is for her to go to NY for the summer and do her internship while living in the dorms at NYU. She'll come home for a couple of weeks in August and then she'll move into the dorms at Columbia. Luckily, they guaranteed her housing so that's one less thing to worry about.
It turns out City of Hope can't get Adrienne in to remove the port next week so we're going to see if we can arrange to have it removed here in Las Vegas. If not, it'll have to wait until she goes to NY. Adrienne will have another CT in about 10 days and we hope to see stable disease then. Her oncologist is very excited about the responses to valproic acid in other patients and hopes that Adrienne is responding well also.
We got up early this morning and checked e-mail. Hmmm, there was a message from DHL saying that Columbia is sending her a package. A turn down usually comes in a regular letter through the USPS, an acceptance comes in a package, but we didn't want to get too confident so we put it out of our minds for the day.
We arrived at City of Hope very early on Friday morning. Adrienne was scheduled for a pelvic ultrasound and was supposed to have a full bladder but, despite drinking 50+ ounces of water, her bladder wasn't full enough. So, we went off to the clinic to draw labs and wait for the water to go to the right place. Once again, Adrienne's port wouldn't draw and she made the decision pretty much right there to get the port out as soon as possible. After a needle poke, we went back to radiology for the ultrasound. Hmmm, the problem, an enlarged uterus on the last two CTs, looked normal on the ultrasound. Her oncologist compared the ultrasound and the last two CTs with her gynecologist, and he thinks the valproic acid caused some positive changes in the endometrium though he's not sure why. Just an interesting and positive development. There has never been a case where Hodgkin's Disease appeared in the endometrium but, as Adrienne's doctors have said, she doesn't follow the rules.
Adrienne had an echo and saw the cardiologist. Good news: her cardiac function is stable and near normal since she's taking the two cardiac meds. The doctor increased the Coreg dosage once again and wished her well in New York. The plan is to return in December and not see a cardiologist in NY unless she has a problem. That's very good news after the last few years of constant cardiology appointments and tests.
After we returned to CMC late in the afternoon, there was an e-mail from Columbia welcoming Adrienne as a visiting student. This was very exciting news. So, the plan is for her to go to NY for the summer and do her internship while living in the dorms at NYU. She'll come home for a couple of weeks in August and then she'll move into the dorms at Columbia. Luckily, they guaranteed her housing so that's one less thing to worry about.
It turns out City of Hope can't get Adrienne in to remove the port next week so we're going to see if we can arrange to have it removed here in Las Vegas. If not, it'll have to wait until she goes to NY. Adrienne will have another CT in about 10 days and we hope to see stable disease then. Her oncologist is very excited about the responses to valproic acid in other patients and hopes that Adrienne is responding well also.
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