Wednesday, May 31, 2006

Biopsy Results

We've had a few roller coaster days. Yesterday, Adrienne's oncologist called to say that the bone biopsy showed no Hodgkin's Disease and that they weren't sure what was going on. They were going to have additional pathologists look at it. We were hopeful that this was something fairly benign. He called today to say that it is Hodgkin's Disease. Apparently, the guru of lymphoma pathology looked at it this morning and confirmed the diagnosis. Obviously, this is not what we wanted to hear. Everyone was sure this was not Hodgkin's Disease because no one has seen it isolated in the bone without widespread disease in the lymph nodes, but Adrienne's case is obviously quite different than most. We keep treating this insidious disease and it seems to find a new place to grow.

We aren't sure what the next step is. The doctor is checking into radiation, which seems to be a good option. Adrienne has never had radiation to this particular area and there are no critical structures except for the hip joint itself, which they can shield. It means daily trips to the hospital again for a few weeks but at least she isn't in school having to juggle so many things. Once again, we need to look into clinical trials.

Adding to all this, Adrienne has bronchitis and pink eye, so she feels pretty miserable. The hip pain from the surgery is mostly gone, replaced by the old hip pain. As usual, she's a trooper and we are still planning to go to Spain in July. We've rearranged our lives so many times and we just don't want to do it unless it is absolutely necessary.

UPDATE: It turns out that this week is the American Society of Clinical Oncology meeting in Atlanta where 20,000 oncologists are gathering. Therefore, getting ahold of anyone is a challenge. Adrienne's radiation oncologist is supposed to be back on Friday so I will call today to see if we can get an appointment.

Despite everyone's shock that Adrienne has Hodgkin's in the pelvis bone, the diagnosis is confirmed. They'll probably publish an article about it since this is so unusual. I had a long talk with Adrienne's oncologist last night and he told me that there are quite a few people who live with Hodgkin's Disease for many, many years. We have been lucky (if you can call multiply recurrent disease lucky) that Adrienne's latest relapses have been in isolated locations and not throughout the chest or in the lungs as would be the usual situation. We'll take what we can get.

We are hoping Adrienne can begin radiation next week. She is feeling much better this morning so we plan to see the new X Men movie as soon as we can. We're having a garage sale this weekend (Sat and Sun, 10 am to 3 pm) so come keep us company or maybe even find something you need for your home.

Friday, May 26, 2006

Biopsy Done, Great Echo

First, the good news. In preparation for Adrienne to have her biopsy under general anesthesia, the doctor insisted that she have an echo of her heart. We saw the results yesterday and her cardiac function is greatly improved since she started the Enalapril a few months ago. Her heart function is almost normal now. She has another medication called Coreg to start but we've been waiting until all the medical procedures are complete before introducing something new. Hopefully she can start next week. It is likely to drop her blood pressure quite a bit so the doctor suggested we have lots of canned soup on hand because it has tons of sodium, great for raising the blood pressure.

Adrienne's biopsy went fine yesterday though she's in quite a lot of pain right now. They took five samples of bone and marrow from the abnormal area, just above the hip joint in the pelvis. They used a CT scanner to make sure they were hitting the right area, which is actually fairly large (3cm x 3 cm x 5cm). Visually, the bone and marrow looked normal so we know there's no sarcoma (bone cancer) but that would have been very unlikely. It could be Hodgkin's Disease, though this is not a place where you normally see it. There are a number of other possibilities including simple necrosis from radiation. We should have the results on Tuesday.

Friday, May 19, 2006

Strange MRI, Biopsy to Come

Adrienne finally had the MRI of her hips on Monday evening at Lucille Packard Children's Hospital. On Thursday, she saw the orthopedist who did her surgery last December. The avascular necrosis is healing nicely, is not causing her pain, and she does not need additional surgery. The MRI results were strange, showing an area of abnormal activity in the bone marrow of the pelvic bone. However, no one is quite sure what this abnormality is except that it needs further exploration. So, after seeing a surgeon today (yes, another doctor), it was decided that Adrienne would have a biopsy of the abnormal area this coming Thursday. Under general anesthesia, they will take 4 or 5 samples of the affected area. We won't know any more until early the following week. Hopefully there will be an explanation (and solution) for Adrienne's pain. Since she won't be having surgery, she is going to visit her friend from college in St. Louis later this summer.

In the meantime, we are starting to clean closets and drawers in preparation for the move. Curt's company will pack for us (phew) so we just need to get rid of the things we won't be taking. We had hoped for a garage sale this weekend but the rain is putting a damper on that. Oh well, we still have 5 weeks until our move.

Saturday, May 13, 2006

Lots Going On

Adrienne arrived back home on Thursday with lots of stuff. Her room is overflowing but hopefully we'll figure out what's what in the next few days. We really don't have a place for things that were used only for her dorm but I'm sure we'll figure something out. She looks wonderful and her hair is really cute. We are all amazed that she's already completed her freshman year of college.

The MRI scheduled for last Thursday at City of Hope got cancelled at the last minute because the machine broke down. Stanford had found an outside place to do the test on Monday but her oncologist would like it done at LPCH so the radiologist there who is familiar with her history can review it. So we are scrambling once again to get it scheduled. Chances are great that the hip problem is more advanced avascular necrosis, but according to the PET report, "Early recurrent Hodgkin's disease involving the bone cannot be ruled out." This is the reason for the rush in getting this test done. We aren't too worried because, for once, it is unlikely that this is Hodgkin's disease but we would like to rule it out sooner rather than later.

Our big news: we're moving! We sold our house a couple of weeks ago and have purchased a new home in Las Vegas. As many of you know, Curt has been working there for almost a year and the commuting is getting to both of us. After much searching, we were fortunate to find a beautiful home in a newer neighborhood in Henderson, Nevada with views of the surrounding mountains and Las Vegas strip. We will move out of here the last week in June and then into the new house around July 20 after the trip to Spain. We are really hoping to have lots of visitors from the Bay Area. We have PLENTY of extra beds and bathrooms, and we even know where the cheaper casinos are located.

Monday, May 08, 2006

MRI and Coming Home

Adrienne saw her oncologist at City of Hope last week. While he had told me that the MRI of her hip could be done any time, he indicated to Adrienne that they would like it done as soon as possible due to "intense uptake" on the PET scan. It turned out to be quite a hassle to schedule the test but it is now this Thursday at City of Hope. After that, Adrienne and I will drive back to Northern California with an MRI CD in hand. Hopefully this will turn out to be simply an inflammatory process.

Adrienne has her classes set for next semester (Spanish Lit, Statistics, Government, and Modern Chinese History) as well as her dorm assignment. Now all she has to do is finish her exams this week and then enjoy herself until our trip to Spain. We expect she'll visit her friend Sara and then have hip surgery right after that, not exactly fun but hopefully the next surgery will leave her pain free.

Curt won't be home for Mother's Day this weekend (as he says, I'm not his mother) but I'm looking forward to some springtime weather, finally, and some time with Adrienne and Daniel.