The trip to Miami was successful any way you look at it. Adrienne went through an extensive battery of tests with the cardiologist and we got only good news. Her heart and lungs have some deficits, but these are small and completely expected for someone treated at age 9 for Hodgkin's. She should continue with the Enalapril to make sure her heart is good for the long term and can start a regular exercise regimen. Her symptoms are likely due to other chemo and radiation side effects so we'll continue to keep an eye on them.
We had some nice R&R in Miami despite lots of rainy weather, and had a great time with Bekah. Add to that, Chris from the Hodgkin's forum came to visit us and we had a lovely time at dinner. He is only a few months out from transplant but he looks fantastic, as does Bekah, of course.
Sunday, May 31, 2009
Monday, May 25, 2009
Off to Miami
We are finally off bright and early Tuesday morning to Miami to see Dr. Lipshultz. We get a little bit of R&R before and after and get to meet up with our friend Bekah, finally! I'll post when we know more. In the meantime, City of Hope is still trying to come up with a plan. We've decided to hold tight for the right thing since Adrienne is feeling well, and except for a few noises coming from her lungs, she has no disease symptoms. We know that this can change quickly so we need to have a plan in place very soon.
If you have a chance, please stop by and leave a note for Pat and Carrie (http://www.caringbridge.org/visit/jamesparr). Pat, another Hodge warrior, is on a ventilator and fighting for his life.
If you have a chance, please stop by and leave a note for Pat and Carrie (http://www.caringbridge.org/visit/jamesparr). Pat, another Hodge warrior, is on a ventilator and fighting for his life.
Tuesday, May 19, 2009
She did it!
Adrienne graduated with her Bachelor of Arts degree cum laude (with latin honors) from Claremont McKenna College on Saturday, May 16. I don't think there was a dry eye in our family, including Adrienne's. We were all so proud and this was a huge milestone for her, being in treatment for her entire four years. There were many wonderful accomplishments to celebrate for everyone but I think her's was quite a bit more than the average.
Now for the not so good news. Adrienne saw the doc yesterday to check out her lungs again and there's more progression. We aren't panicked yet but we definitely need to get her on another treatment quickly. We hope to have a plan by the end of the week, and if City of Hope can't help, we'll be spending some time in New York. Once again, we wait.
Now for the not so good news. Adrienne saw the doc yesterday to check out her lungs again and there's more progression. We aren't panicked yet but we definitely need to get her on another treatment quickly. We hope to have a plan by the end of the week, and if City of Hope can't help, we'll be spending some time in New York. Once again, we wait.
Friday, May 08, 2009
Aren't we a funny bunch?
I often wonder who else wishes for pneumonia except for cancer patients and their families? Don't get me wrong, pneumonia is scary and can get out of control very quickly, but it's always better than the alternative. Adrienne is actually feeling really good right now except for being a bit sleep deprived. I flew to Claremont on Wednesday and drove her home but she still had one paper to finish yesterday so I expect she'll be sleeping most of today. We'll go back for graduation next weekend and then a visit to City of Hope to make sure the pneumonia is gone and to figure out the next steps.
Daniel and Curt are in Santa Barbara right now. Yes, the home of the fires, the third one in 9 months. Thank goodness Curt was there and can help look out for Daniel so I don't worry too much. He lives in a rented house at the base of the hills, not too far from the mission, which has been at risk and it would be a tragedy to lose any of those buildings. I don't understand but apparently it's considered a brush fire until a house or structure burns down and then they can call in outside help, after it's already out of control. Curt sent me a picture from his cell phone yesterday and you can see the flames and smoke in the hills above the house. Right now, the fire is moving away from Daniel's but these things are very unpredictable. There are planes and helicopters flying overhead, dropping water and chemicals on the fire. Curt says it feels like a war zone. Add to that, Daniel hurt his elbow and is getting over the flu from last week so he's at the doctor getting checked out (Update: Daniel is fine). Curt now is hoping to drive back Saturday morning but we agreed that he won't leave until the fire is totally under control.
Daniel and Curt are in Santa Barbara right now. Yes, the home of the fires, the third one in 9 months. Thank goodness Curt was there and can help look out for Daniel so I don't worry too much. He lives in a rented house at the base of the hills, not too far from the mission, which has been at risk and it would be a tragedy to lose any of those buildings. I don't understand but apparently it's considered a brush fire until a house or structure burns down and then they can call in outside help, after it's already out of control. Curt sent me a picture from his cell phone yesterday and you can see the flames and smoke in the hills above the house. Right now, the fire is moving away from Daniel's but these things are very unpredictable. There are planes and helicopters flying overhead, dropping water and chemicals on the fire. Curt says it feels like a war zone. Add to that, Daniel hurt his elbow and is getting over the flu from last week so he's at the doctor getting checked out (Update: Daniel is fine). Curt now is hoping to drive back Saturday morning but we agreed that he won't leave until the fire is totally under control.
Monday, May 04, 2009
This is sounding better...
So far, Adrienne's bronch shows nothing unusual, no cancer cells and no infection. I got a little bit more detail (again) on her scans and they think that the known tumor grew a bit and there is one new tumor, and they suspect the rest is/was infection. These bronchoscopy results confirm that there isn't anything aggressive, which is very, very good news. The plan now is to put Adrienne on another two week course of antibiotics and then do a CT scan again. In the meantime, we know that things aren't too aggressive and we have some time to figure out what to do next.
Adrienne has her last exam on Wednesday, and Curt and I will move her out and drive her back. She'll have a little bit of time off before graduation, and then we'll be going to Miami at the end of the month to see the cardiologist (and Bekah finally in person!). It's amazingly wonderful to have some time off and to not be panicked about the next steps.
Adrienne has her last exam on Wednesday, and Curt and I will move her out and drive her back. She'll have a little bit of time off before graduation, and then we'll be going to Miami at the end of the month to see the cardiologist (and Bekah finally in person!). It's amazingly wonderful to have some time off and to not be panicked about the next steps.
Friday, May 01, 2009
Bronch is done
After a bit of scrambling and a bunch of phone calls, Adrienne had the bronchoscopy around 5 pm this afternoon. She is tired tonight and has a sore throat but everything went fine. We should have results (pathology and cultures) no later than mid-week. I also spoke with Adrienne's doc at City of Hope and Dr. O'Connor in New York. Depending on what the bronc shows, they have a few options so we'll just have to see what next week brings. Have a great weekend.
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