I'm sorry it's been awhile since I posted. I've been putting off some surgery for myself and had it this week. I'm doing fine but am quite tired. It'll be about 10 days until I can drive and probably a couple of months before I have my old energy back. Adrienne has been calling me twice a day to make sure I'm okay since she's used to being the patient and wants to help.
Adrienne is doing well at school, getting into the swing of things again. She's met people in her new dorm and so far, her classes don't seem too difficult, even second semester of college Calculus. Spanish is going well too even though it's been awhile since she took it. She seems to enjoy her dance class learning the Cha Cha first. There are students from all of the Claremont colleges and they switch partners frequently so it's a good opportunity to meet people.
We've decided to get another opinion on her cardiac function. I wrote to a doctor in Miami who is one of the foremost experts on treatment-related cardiac damage in children and he even questions the diagnosis of dilated cardiomyopathy and suggests Adrienne might have restrictive cardiomyopathy. These are two very different diseases. The new consult is on February 17, when we'll be down south for Parent's Weekend at CMC, but it will probably take a few weeks of testing to figure this all out.
Saturday, January 28, 2006
Tuesday, January 17, 2006
Back to College
Adrienne is back at Claremont McKenna College with today being the first day of classes. She had to move dorms due to her hip surgery so she would have an elevator rather than stairs. It may take a bit of getting used to but she has a nice big single room on the 4th floor. We spent the last couple of days driving around to get the things she needed and to help her get set up.
The next few days will be quite busy. Adrienne got two classes she wanted and is trying to change the other two. That means she has to go to the old classes and the new classes with a hope of getting in. She's already on the waiting lists so we're keeping our fingers crossed that she has what she wants in a few days. If she can't switch, her classes are fine but she will have very long days on Mondays and Wednesdays and she'd like to spread things out a bit more.
Adrienne is free of doctors for a little while. She will see the oncologist a City of Hope in a few weeks, as well as a cardiologist. We aren't feeling really confident about the advice we are getting from the cardiologist at the children's hospital and have asked for a second opinion. The other item of note is Adrienne's thyroid, which is already showing signs of failing following her radiation. She will probably wind up starting a supplement in the next few months. As you can imagine, she hates taking pills but is down to just a few now, so adding another small one shouldn't be too difficult.
The next few days will be quite busy. Adrienne got two classes she wanted and is trying to change the other two. That means she has to go to the old classes and the new classes with a hope of getting in. She's already on the waiting lists so we're keeping our fingers crossed that she has what she wants in a few days. If she can't switch, her classes are fine but she will have very long days on Mondays and Wednesdays and she'd like to spread things out a bit more.
Adrienne is free of doctors for a little while. She will see the oncologist a City of Hope in a few weeks, as well as a cardiologist. We aren't feeling really confident about the advice we are getting from the cardiologist at the children's hospital and have asked for a second opinion. The other item of note is Adrienne's thyroid, which is already showing signs of failing following her radiation. She will probably wind up starting a supplement in the next few months. As you can imagine, she hates taking pills but is down to just a few now, so adding another small one shouldn't be too difficult.
Friday, January 13, 2006
Cardiology, Oncology, and Ortho Checkups
After a quiet couple of weeks, Adrienne fainted on Wednesday. The cause seems to be low blood pressure, especially on standing, which is called orthostatic blood pressure. There is no specific cause for this but it's something she's suffered from in the past. The solution: drink something before getting out of bed, sit up slowly, stand for a moment, and then walk. Thankfully, Adrienne didn't hit her head or hurt her hips in any way.
We arrived at the hospital at 9 am yesterday and left at 6 pm. First, Adrienne had labs drawn, which look great. Her blood counts have completely recovered from the radiation. The only concerning item is her thyroid function. She is almost guaranteed to have hypothyroidism from all the radiation she received so this is no surprise. We just need to find out if she needs to start taking a pill (synthetic thyroid hormone) now for this or if we wait until she has symptoms.
Next, Adrienne had an echo of her heart and saw the cardiologist. Her shortening fraction (SF) took another big dive (23% in October, 17% yesterday, over 30% is normal) but her ejection fraction (EF) remains steady. The doctor says that the EF is a much more accurate measurement of her cardiac function and that her heart looks essentially unchanged on the echo. He continues to think that the edema and blue tint in her toes and ankles is due to the chemos she's received that affect the peripheral nervous system and not to her cardiac function. She finds the edema very annoying but the blueness doesn't bother her.
In the afternoon, Adrienne had a pulmonary function test. We don't have results of that yet but we don't expect any significant changes since she hasn't had any treatment the last few years that would affect the lungs. The only risk is for graft-vs-host disease but that would be very unlikely this far out from transplant and she has no symptoms.
Finally, at 4 pm, Adrienne saw her oncologist. Oh, that was after waiting nearly an hour for a chest xray. The chest xray was clear and her exam was perfect.
After that, Adrienne saw the orthopedist at the adult's hospital. She had been scheduled for hip xrays but we never got there. The orthopedist is very happy with her progress and even said she didn't need to use the crutches anymore (not that she's been using them much anyways). Even the fainting from a standing position didn't harm the hips. She is supposed to take it easy for a month and then see him again for one final xray in May. Since she can do more activity than we were originally told, she might take a ballroom dancing class this semester. I wish I could take it with her but she promised to teach me a few steps.
Adrienne goes back to CMC on Sunday. She's enjoyed some time off from the pressures of college but is looking forward to being on her own again and seeing her friends.
We arrived at the hospital at 9 am yesterday and left at 6 pm. First, Adrienne had labs drawn, which look great. Her blood counts have completely recovered from the radiation. The only concerning item is her thyroid function. She is almost guaranteed to have hypothyroidism from all the radiation she received so this is no surprise. We just need to find out if she needs to start taking a pill (synthetic thyroid hormone) now for this or if we wait until she has symptoms.
Next, Adrienne had an echo of her heart and saw the cardiologist. Her shortening fraction (SF) took another big dive (23% in October, 17% yesterday, over 30% is normal) but her ejection fraction (EF) remains steady. The doctor says that the EF is a much more accurate measurement of her cardiac function and that her heart looks essentially unchanged on the echo. He continues to think that the edema and blue tint in her toes and ankles is due to the chemos she's received that affect the peripheral nervous system and not to her cardiac function. She finds the edema very annoying but the blueness doesn't bother her.
In the afternoon, Adrienne had a pulmonary function test. We don't have results of that yet but we don't expect any significant changes since she hasn't had any treatment the last few years that would affect the lungs. The only risk is for graft-vs-host disease but that would be very unlikely this far out from transplant and she has no symptoms.
Finally, at 4 pm, Adrienne saw her oncologist. Oh, that was after waiting nearly an hour for a chest xray. The chest xray was clear and her exam was perfect.
After that, Adrienne saw the orthopedist at the adult's hospital. She had been scheduled for hip xrays but we never got there. The orthopedist is very happy with her progress and even said she didn't need to use the crutches anymore (not that she's been using them much anyways). Even the fainting from a standing position didn't harm the hips. She is supposed to take it easy for a month and then see him again for one final xray in May. Since she can do more activity than we were originally told, she might take a ballroom dancing class this semester. I wish I could take it with her but she promised to teach me a few steps.
Adrienne goes back to CMC on Sunday. She's enjoyed some time off from the pressures of college but is looking forward to being on her own again and seeing her friends.
Monday, January 02, 2006
Happy New Year
We are happy and relieved to say goodbye to 2005 and move on to 2006. While there have been some really good times this year (Adrienne starting college and winning a national merit scholarship), it has mostly been a very difficult year with relapses, chemo, radiation, and surgeries. Each recurrence gets more difficult, though you wouldn't think that was possible. This year was the first time that Adrienne failed to respond to chemo. We knew it would happen eventually but still weren't prepared. It seems so odd that Adrienne has now had cancer five times, yet she still looks so healthy and is able to live a relatively normal life. As long as she's here, we can hope that someday they'll come up with a cure for her. Each year, we know many children and adults who lose their battle, sometimes because of treatment and sometimes due to disease progression and we know we are the lucky ones.
Adrienne is doing incredibly well after her hip surgery. You'd hardly know that she has holes the width of your pinky from the side of her leg all the way into the large femoral bone in her hip. She isn't even using crutches around the house, saving those for trips out. We won't know if the surgery is successful in generating new bone for several months, but so far, so good. Adrienne's next checkup is on January 12 when she sees her oncologist, cardiologist, BMT doctor, and orthopedist, plus a pulmonary function test and echocardiogram. I'm sure it will prove to be one of those very long, boring days at the hospital but it will be worth it assuming she gets a clear bill of health.
We will leave to take Adrienne back to college on either January 14th or 15th. She feels like her vacation has been much too fast. In the next day or two, she is going back to her high school to visit with her old teachers. It's heartwarming to see how far she's come.
Adrienne is doing incredibly well after her hip surgery. You'd hardly know that she has holes the width of your pinky from the side of her leg all the way into the large femoral bone in her hip. She isn't even using crutches around the house, saving those for trips out. We won't know if the surgery is successful in generating new bone for several months, but so far, so good. Adrienne's next checkup is on January 12 when she sees her oncologist, cardiologist, BMT doctor, and orthopedist, plus a pulmonary function test and echocardiogram. I'm sure it will prove to be one of those very long, boring days at the hospital but it will be worth it assuming she gets a clear bill of health.
We will leave to take Adrienne back to college on either January 14th or 15th. She feels like her vacation has been much too fast. In the next day or two, she is going back to her high school to visit with her old teachers. It's heartwarming to see how far she's come.
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