We had a very busy weekend. On Saturday, we did our TNT buddy walk. Adrienne is having pain in her feet and hip, and she was only able to complete six miles in under two hours. She is working on her speed but that seems to hurt more. The aches and pains in her feet and hip are most likely a result of the chemo. After the buddy walk, we went to breakfast and then shopping for easter baskets for Adrienne and Daniel (yes, Adrienne picked her own things).
On Sunday, I got up very early and did another very fast 10 miles. Last year, I incorporated running intervals into my walking to increase my overall speed. However, my walk pace didn't really improve during that time so I'm working on that by walking with people who have a much faster pace than I do. Later, Adrienne, Daniel, and I joined my sister's family and her inlaws at their lovely country club for brunch. Besides great company and food, they have easter egg hunts for the little ones and bunnies, chicks, and ducks to hold. At 16 and 17, Adrienne and Daniel still enjoy the little animals. One of the bunnies scratched Adrienne's chest pretty badly so we're keeping an eye on that. On Saturday, Daniel helped a friend work in his backyard and Daniel has bug bites all over one leg. Life is never boring around here.
On Saturday, Adrienne received a notice that she is a recipient of a $2,500 scholarship from the National Merit Scholarship Corporation for the college of her choice. She has only until April 6 to tell them where to send the money. Although colleges don't require a commitment until May 1, this will force Adrienne to decide well before then.
Curt is definitely coming home from Vietnam after just over two months. He'll be home for a few weeks and then back there for a few weeks. This might just become the routine of our lives.
Monday, March 28, 2005
Friday, March 25, 2005
Another Quiet Week
It's been four days since Adrienne's chemo with no sign of hives. Either the allergy medications are working really well or her body has gotten used to the chemo, both of which are good. Except for being extremely tired and going to bed around 9:30 each night, Adrienne is feeling well. She goes to school everyday and often stays late to help in the office.
I'm becoming increasingly frustrated with the medical system as I look for new treatment options for Adrienne. The government's clinical trial databases are far out of date (surprise, surprise) and the information on each institution's web site is similarly lacking. Last week, I called both Memorial Sloan Kettering and UCSF about trials listed on their web sites, only to find that they had been discontinued without explanation. The only positive news I've had is that Stanford will be doing a trial with Velcade. I've requested that Adrienne get the drug without being on the trial since the trials attempt to isolate the effect of the drug and I understand this drug is more effective for Hodgkin's Disease when given with chemo.
We're all looking forward to the weekend. On Saturday, we have our usual buddy walk with TNT. On Sunday, we'll see the whole family for brunch. We're hoping this sunshine stays with us for just a few more days. Have a Happy Easter.
I'm becoming increasingly frustrated with the medical system as I look for new treatment options for Adrienne. The government's clinical trial databases are far out of date (surprise, surprise) and the information on each institution's web site is similarly lacking. Last week, I called both Memorial Sloan Kettering and UCSF about trials listed on their web sites, only to find that they had been discontinued without explanation. The only positive news I've had is that Stanford will be doing a trial with Velcade. I've requested that Adrienne get the drug without being on the trial since the trials attempt to isolate the effect of the drug and I understand this drug is more effective for Hodgkin's Disease when given with chemo.
We're all looking forward to the weekend. On Saturday, we have our usual buddy walk with TNT. On Sunday, we'll see the whole family for brunch. We're hoping this sunshine stays with us for just a few more days. Have a Happy Easter.
Tuesday, March 22, 2005
Fourth Chemo
Adrienne's fourth chemo yesterday was uneventful. She gets 50 mg of Benadryl as a premed to avoid the hives so now she sleeps through the whole thing. Her many visitors (Erika, Mary, Debora, Rich) got to talk and watch her sleep. Still, she enjoys the company.
Before chemo, we met with the BMT doctor. Erika came along to see if she could learn anything new about DLIs and her own disease. The BMT doctor is not convinced that DLIs will help Adrienne's disease, and they could make her quite sick with a flare of graft-vs-host disease (GVHD). She wants to talk with the BMT doctors at Stanford and the doctor up in Seattle before committing. Our feeling is that it's worth trying, provided it doesn't make her too sick. The doctor I spoke to in Seattle felt that a small dose of DLI would mean little side effects and might extend her remission up to two years. Stay tuned.
Adrienne has a PET/CT scan next week, and we believe that it will show that she's in remission again. We're looking into a host of possible treatments from staying on the current chemo for an extended period of time, getting radiation to the area of recurrence, and participating in some clinical trials. The trial that we are most interested in uses a drug called Velcade given with her chemo. That trial will be available at Stanford in the next few weeks.
We found out over the weekend that Adrienne was admitted to UC San Diego. We won't know anything else until March 31 when UC Berkeley, Tufts, and Brown post their acceptances. Claremont McKenna, Adrienne's first choice, sends acceptances the old fashioned way on April 1.
Before chemo, we met with the BMT doctor. Erika came along to see if she could learn anything new about DLIs and her own disease. The BMT doctor is not convinced that DLIs will help Adrienne's disease, and they could make her quite sick with a flare of graft-vs-host disease (GVHD). She wants to talk with the BMT doctors at Stanford and the doctor up in Seattle before committing. Our feeling is that it's worth trying, provided it doesn't make her too sick. The doctor I spoke to in Seattle felt that a small dose of DLI would mean little side effects and might extend her remission up to two years. Stay tuned.
Adrienne has a PET/CT scan next week, and we believe that it will show that she's in remission again. We're looking into a host of possible treatments from staying on the current chemo for an extended period of time, getting radiation to the area of recurrence, and participating in some clinical trials. The trial that we are most interested in uses a drug called Velcade given with her chemo. That trial will be available at Stanford in the next few weeks.
We found out over the weekend that Adrienne was admitted to UC San Diego. We won't know anything else until March 31 when UC Berkeley, Tufts, and Brown post their acceptances. Claremont McKenna, Adrienne's first choice, sends acceptances the old fashioned way on April 1.
Thursday, March 17, 2005
Quiet Week
We don't have a lot of news this week...this is a good thing at our house. Adrienne has been feeling overall quite well since her chemo. Some days she is very tired and other days she's completely normal. She went off her hormones for a few days and is experiencing hot flashes but she has a good humor about it all. She also got a yeast infection so we've added another pill to the mix. This is all par for the course during treatment.
We don't have any news on the college front. Some of the UCs have been posting acceptances but neither of the UCs that Adrienne is waiting on (UC San Diego and UC Berkeley) have posted yet. We probably won't know anything else until March 31 when all of the UCs and private colleges post. Adrienne says there's a lot of tension and discussion at school about what colleges people are or are not getting into. She feels good that she has at least two choices: Claremont McKenna and UC Irvine. We know she'll have many more choices than that.
We don't have any news on the college front. Some of the UCs have been posting acceptances but neither of the UCs that Adrienne is waiting on (UC San Diego and UC Berkeley) have posted yet. We probably won't know anything else until March 31 when all of the UCs and private colleges post. Adrienne says there's a lot of tension and discussion at school about what colleges people are or are not getting into. She feels good that she has at least two choices: Claremont McKenna and UC Irvine. We know she'll have many more choices than that.
Friday, March 11, 2005
Follow Up to Third Chemo
Touch wood...Adrienne has not gotten any hives from her chemo earlier this week. The last two times, she had them by now. Earlier in the week, she felt "achy" and "icky" (her words) but is feeling back to normal now. The next chemo is scheduled for March 21 with a PET/CT scan on March 30. We have a consultation with the BMT doctor on March 21 before her chemo to discuss donor lymphocyte infusions (DLIs).
There is no new college news as yet. We probably won't know anything else until March 31, when many schools post acceptances on the web. Isn't the Internet great? No more need to wait for (hopefully big) envelopes in the mail from colleges.
Daniel had his first track meet yesterday. Adrienne and I went to cheer for him and the other participants. Having never been to a track meet before, we were thoroughly confused about what was going on where. The hurdles made us nervous to watch and one person was hurt pretty badly. Daniel didn't place in any of his events (shotput and discus) but this was his first meet ever and he's sure to improve. He is really enjoying track so far and the coach is very nice and supportive.
There is no new college news as yet. We probably won't know anything else until March 31, when many schools post acceptances on the web. Isn't the Internet great? No more need to wait for (hopefully big) envelopes in the mail from colleges.
Daniel had his first track meet yesterday. Adrienne and I went to cheer for him and the other participants. Having never been to a track meet before, we were thoroughly confused about what was going on where. The hurdles made us nervous to watch and one person was hurt pretty badly. Daniel didn't place in any of his events (shotput and discus) but this was his first meet ever and he's sure to improve. He is really enjoying track so far and the coach is very nice and supportive.
Tuesday, March 08, 2005
Third Chemo
Adrienne had her third chemo yesterday without incident. Her blood counts and chemistries were good so everything proceeded on schedule. She was a bit nervous to have her port accessed for the first time but she did great. We're going to try a few different techniques next time to make the access less painful. Adrienne has been feeling a bit crummy since the infusion but was able to go to school today. We also decided to start her on penicillin twice a day because it appears that she is hyposplenic due to radiation to the spleen, making her susceptible to overwhelming infections.
Over the weekend, Adrienne visited Claremont McKenna College, one of the Claremont schools, in southern California. The college flew her down to interview for a merit scholarship and to learn more about the school. She had a great time and feels that CMC would be an ideal fit for her. Later this month, we will hear from other colleges but CMC seems like the best choice right now. Adrienne has already been accepted to the UC Irvine Honors Program and was awarded a Regent's Scholarship. It's great to see all of her hard work paying off and she is enjoying the recognition.
Daniel drove down to see his father in Santa Barbara. This was his first long drive on his own since getting his license last August. I was a bit nervous, especially with Friday's rain, but he was just fine. He had a great visit with his dad and they enjoyed lots of "car talk." Adrienne and Daniel will probably drive down together in April during their spring break.
Curt is still in Vietnam, hoping to come home later this month. He says he's lost a lot of weight and is tired of eating noodle soup, but the business is proceeding well.
Over the weekend, Adrienne visited Claremont McKenna College, one of the Claremont schools, in southern California. The college flew her down to interview for a merit scholarship and to learn more about the school. She had a great time and feels that CMC would be an ideal fit for her. Later this month, we will hear from other colleges but CMC seems like the best choice right now. Adrienne has already been accepted to the UC Irvine Honors Program and was awarded a Regent's Scholarship. It's great to see all of her hard work paying off and she is enjoying the recognition.
Daniel drove down to see his father in Santa Barbara. This was his first long drive on his own since getting his license last August. I was a bit nervous, especially with Friday's rain, but he was just fine. He had a great visit with his dad and they enjoyed lots of "car talk." Adrienne and Daniel will probably drive down together in April during their spring break.
Curt is still in Vietnam, hoping to come home later this month. He says he's lost a lot of weight and is tired of eating noodle soup, but the business is proceeding well.
Thursday, March 03, 2005
Cardiology Appointment
Adrienne saw her cardiologist today as a routine follow up for her cardiomyopathy. It seems so odd that someone who is 17 years old has an oncologist and a cardiologist. We got mostly good news: Adrienne's heart function is unchanged from six months ago so we will not start meds (Enalapril) right now. Her only symptoms, some edema in her lower extremities and blue fingers and toes, are due to her heart but are not affecting her ability to function. We discussed the possibility of diuretics to help the edema, but given her relatively low blood pressure, we will wait for now.
We did learn some new things. 1) Adrienne should have a cardiology anesthesiologist for future surgeries. 2) Any chemo or treatments that could be done in- or outpatient should be done inpatient only so she is monitored more carefully. 3) The cardiologist will review any potential treatments or clinical trials to verify that her heart function is adequate for them.
We also saw Adrienne's oncologist today since cardiology and oncology are temporarily operating out of the same clinic. He was happy that most of her lumps have disappeared but seemed slightly concerned that the two smallest ones are still there, although they did not show up as positive on her PET/CT scan. We were very happy to see some old friends and to know that they're doing so well.
Daniel is doing great with his track training. He is working especially hard on shotput and discuss and is happy that he is one of the strongest boys on the team, although his shins are bothering him from the running. Now he knows how we feel when doing interval training.
We'd love to see comments when you visit this site to let us know you're there. Since you probably don't have a login on the system, you need to post as anonymous (see the radio button under the message). Thank you for your nice e-mails of support. We appreciate them very much.
We did learn some new things. 1) Adrienne should have a cardiology anesthesiologist for future surgeries. 2) Any chemo or treatments that could be done in- or outpatient should be done inpatient only so she is monitored more carefully. 3) The cardiologist will review any potential treatments or clinical trials to verify that her heart function is adequate for them.
We also saw Adrienne's oncologist today since cardiology and oncology are temporarily operating out of the same clinic. He was happy that most of her lumps have disappeared but seemed slightly concerned that the two smallest ones are still there, although they did not show up as positive on her PET/CT scan. We were very happy to see some old friends and to know that they're doing so well.
Daniel is doing great with his track training. He is working especially hard on shotput and discuss and is happy that he is one of the strongest boys on the team, although his shins are bothering him from the running. Now he knows how we feel when doing interval training.
We'd love to see comments when you visit this site to let us know you're there. Since you probably don't have a login on the system, you need to post as anonymous (see the radio button under the message). Thank you for your nice e-mails of support. We appreciate them very much.
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