Last Friday, finally, MSK received most of Adrienne's records so they confirmed her appointment for January 2. I'm still waiting for a CD of the last CT scan plus MSK is still waiting for Adrienne's chemo records from Stanford, but they have enough to move ahead. We've been through this before with Adrienne's treatment in Seattle and the move to City of Hope and it's always a big hassle. Adrienne and I have been talking about possible treatments and she's been deciding what she's willing to do. The big priority now is to keep her in school while controlling her disease.
We had a nice but quiet Christmas and Chanukah. We're still working on the house so we decided to forego presents. I've been buying Adrienne some things she needs, like a new cell phone and boots, and we'll do a bit of shopping in New York at the after Christmas sales.
Today, Adrienne is off to see her dad, aunt and uncle, and cousin in southern California. The last time she saw her cousin, he was 5 and it was right after her second transplant. She had very little hair and was on high dose prednisone. She wants to see everyone since she is looking like herself and very healthy.
Tuesday, December 26, 2006
Friday, December 15, 2006
Good News, Bad News
UPDATE on 12/20: Adrienne's doctors have agreed that we should wait for the visit to MSK before starting treatment. Everyone wants to start something as soon as possible but we want to pick the best option. Adrienne is feeling well with no pain or other Hodgkin's Disease symptoms but she started a higher dose of the Coreg and that is making her quite tired.
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As our friend Erika says, it usually means bad news but they say something good so the bad news doesn't seem quite so bad. So for the good news, the largest tumor is only 1.5 cm. For the bad news, there's four separate locations: one in the lung (1.3 cm), one just above the liver (1.2 cm), one in the spleen (1.3 cm), and one in the bone near the shoulder (1.5 cm). I haven't spoken to the doctor and we don't have a treatment plan yet. Adrienne's appointment at Memorial Sloan Kettering is on January 2 with us flying out on New Years Day. We may want to start her on chemo to at least try to get this under control before then but I don't know yet.
Sorry this has taken so long to post. Adrienne got a CD after the PET scan on Tuesday and overnighted it to her doctor. But, it was the wrong format and it took another two days to get the right CD and the report to him. I only have the report.
I'm sure Adrienne would like some positive thoughts so please leave a comment for her.
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As our friend Erika says, it usually means bad news but they say something good so the bad news doesn't seem quite so bad. So for the good news, the largest tumor is only 1.5 cm. For the bad news, there's four separate locations: one in the lung (1.3 cm), one just above the liver (1.2 cm), one in the spleen (1.3 cm), and one in the bone near the shoulder (1.5 cm). I haven't spoken to the doctor and we don't have a treatment plan yet. Adrienne's appointment at Memorial Sloan Kettering is on January 2 with us flying out on New Years Day. We may want to start her on chemo to at least try to get this under control before then but I don't know yet.
Sorry this has taken so long to post. Adrienne got a CD after the PET scan on Tuesday and overnighted it to her doctor. But, it was the wrong format and it took another two days to get the right CD and the report to him. I only have the report.
I'm sure Adrienne would like some positive thoughts so please leave a comment for her.
Monday, December 11, 2006
Not Much to Report
Adrienne has her PET scan tomorrow morning but we aren't expecting it will show anything that isn't on the CT scan. She had disease in her spleen when she was originally diagnosed and with several relapses so this is nothing new. The spleen is sort of like a really big lymph node and HD likes to hang out there. Up until the early 90s, they routinely removed the spleen but with improved imaging, they stopped that very difficult surgery.
We have an appointment at Memorial Sloan Kettering on January 2. Dr. Owen O'Conner is seeing Adrienne on his "off clinic" day, which we really appreciate, and we hear he's very nice (not a requirement but still nice to have). I've been busy getting all of Adrienne's records to them as well as some biopsy slides. This is not an easy task since Adrienne's been treated at three different centers and has had four node biopsies. This week is the big annual American Society of Clinical Oncology conference so none of the doctors are around but the rest of the staff has been very helpful.
Adrienne is busy finishing up the semester and she seems able to put her health issues aside for a few days. She always amazes me. She's concerned about not starting treatment right away but we want to know all our options and do the right thing.
We have an appointment at Memorial Sloan Kettering on January 2. Dr. Owen O'Conner is seeing Adrienne on his "off clinic" day, which we really appreciate, and we hear he's very nice (not a requirement but still nice to have). I've been busy getting all of Adrienne's records to them as well as some biopsy slides. This is not an easy task since Adrienne's been treated at three different centers and has had four node biopsies. This week is the big annual American Society of Clinical Oncology conference so none of the doctors are around but the rest of the staff has been very helpful.
Adrienne is busy finishing up the semester and she seems able to put her health issues aside for a few days. She always amazes me. She's concerned about not starting treatment right away but we want to know all our options and do the right thing.
Thursday, December 07, 2006
Here we go again...
Adrienne had her CT yesterday and, unfortunately, the news is not what we had hoped for. She has a 1.4 cm x 1.9 cm node in her right lung, as well as a questionable area in her spleen. Yes, this is the same place that showed on the August PET scan that appeared to be resolved on the CT scan in September. The next step is another PET scan. City of Hope doesn't have an opening until December 18, after Adrienne is supposed to finish the semester, but they found an outside imaging service to do it on Tuesday, December 12. We'll probably have to wait a couple of days for the complete results but that's okay since she won't start treatment until the new year.
There are some treatment options that her doctor at COH has suggested including SAHA and tomotherapy radiation. We've heard that SAHA is very difficult and the trial may not be open again yet. Tomotherapy is only an option if there is one spot and we are concerned about radiation to the lung since Adrienne has some fibrosis resulting from the pneumonitis she got during her first transplant.
So, we are looking into some other clinical trials. Memorial Sloan Kettering has a doctor conducting a number of trials for recurrent Hodgkin's Disease so we are going to New York for another opinion in January. MSK wasn't high on our list because they don't participate in Children's Oncology Group and they conduct clinical studies on their own, but we need to find out what is best for Adrienne and we hear wonderful things about this doctor. Our goal is to find a treatment that will allow her to stay in school while keeping her disease under control.
Adrienne has exams next week so she is trying to stay focused on that. It seems like she never gets a break during her vacations, but she's looking forward to a few days in New York in the snow. Yes, I promised her a nice dinner and a show when we're there.
There are some treatment options that her doctor at COH has suggested including SAHA and tomotherapy radiation. We've heard that SAHA is very difficult and the trial may not be open again yet. Tomotherapy is only an option if there is one spot and we are concerned about radiation to the lung since Adrienne has some fibrosis resulting from the pneumonitis she got during her first transplant.
So, we are looking into some other clinical trials. Memorial Sloan Kettering has a doctor conducting a number of trials for recurrent Hodgkin's Disease so we are going to New York for another opinion in January. MSK wasn't high on our list because they don't participate in Children's Oncology Group and they conduct clinical studies on their own, but we need to find out what is best for Adrienne and we hear wonderful things about this doctor. Our goal is to find a treatment that will allow her to stay in school while keeping her disease under control.
Adrienne has exams next week so she is trying to stay focused on that. It seems like she never gets a break during her vacations, but she's looking forward to a few days in New York in the snow. Yes, I promised her a nice dinner and a show when we're there.
Sunday, December 03, 2006
December 3, 1996
Ten years ago today, we got the awful news that Adrienne had Hodgkin's Disease. Two weeks prior, Adrienne showed me some lumps on her shoulder and, after some tests and ruling out tuberculosis and cat scratch fever, we got the confirmation. I'll never forget the doctor coming in with tears in his eyes to tell us, "I have good news and bad news. The bad news is that Adrienne has Hodgkin's Disease. The good news is that in a year, this will all be over." Little did anyone know that wouldn't be the case. Adrienne was one of a handful of girls in the US who are diagnosed with HD before the age of 10 and today, she is one of a handful who have survived ten years with multiple relapses. We are so thankful that she continues to beat the odds.
Last Wednesday, Adrienne called and asked me to go with her to her doctors' appointments last Friday. She's under a lot of stress at school as the end of the semester approaches and she really didn't want to go alone after all. I flew to Ontario on Friday and we went together. All of her checkups were great and her blood counts continue to be good. She looks wonderful, very healthy and happy. The last hurdle for awhile is her CT scan this Wednesday. The doctor will be out of town so we can get results from the nurse. We are counting on good results, but if not, Adrienne will go ahead with the SAHA trial. We've heard about a few people who've had very bad fatigue on the drug but the results are very promising. I'll post when I learn more later in the week. Keep your fingers crossed for more good news.
Last Wednesday, Adrienne called and asked me to go with her to her doctors' appointments last Friday. She's under a lot of stress at school as the end of the semester approaches and she really didn't want to go alone after all. I flew to Ontario on Friday and we went together. All of her checkups were great and her blood counts continue to be good. She looks wonderful, very healthy and happy. The last hurdle for awhile is her CT scan this Wednesday. The doctor will be out of town so we can get results from the nurse. We are counting on good results, but if not, Adrienne will go ahead with the SAHA trial. We've heard about a few people who've had very bad fatigue on the drug but the results are very promising. I'll post when I learn more later in the week. Keep your fingers crossed for more good news.
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