Loooong Week for Adrienne

Adrienne never ceases to amaze me with her toughness and determination. This week she had exams at school and a paper to write. Believe it or not, this is already the fifth week of a 14 week semester, though it seems like she just left. As if that wouldn't be enough for any new college student, she had daily radiation at City of Hope. Her treatment was cancelled on Monday because the tomotherapy machine was down but the other days included at least 2-1/2 hours of treatment and travel time. She is thoroughly exhausted but feels pretty good about what she accomplished this week.

Wednesday was a particularly long day with labs and a visit to the BMT doctor. So far, she has no sign of graft-vs-host disease. We found out that all of the lymphocytes, both the third and fourth doses, were sent to City of Hope so Adrienne won't have the DLI at Stanford on October 17 as originally planned. We are seriously considering not continuing with the DLIs after finding out that Adrienne won't qualify for the cytokine-induced killer cell trial if she has any GVHD, or probably any other trial for that matter. The DLI was supposed to be for "consolidation", to hopefully sustain a remission, but since Adrienne isn't in remission, it doesn't seem worth the risk.

Adrienne's mouth is bothering her from the radiation. She has a white film on her tongue and her mouth is quite dry. Eating spicy foods is painful. Despite her efforts to stay away from spicy food, it seems that so many things have something in it like pepper or mustard. If she were home, we could watch the cooking ingredients but it's tough when you eat at the dining hall.

Daniel will be driving down to visit Adrienne later today. She decided to forego Disneyland tomorrow because she wants to take it easy and so she can spend some more time with her brother. He is bringing a few "supplies" including her favorite magazine and some gum that helps make saliva.

Second Week of Radiation

Adrienne is getting ready to start her second week of radiation. Thankfully, she has no side effects so far. Last week, she was itching, a symptom of her disease, but that has subsided and the lumps on her neck are already smaller. She's been suffering a cold the last few days but was a bit better yesterday, except for some sinus pain. Hopefully this will pass soon. She was very tired on Friday and Saturday, probably from the cold, but is keeping up with her school work.

We continue to look into clinical trials that Adrienne might benefit from. There is one at Stanford involving cytokine-induced killer cells, where they reproduce the cells that kill cancer in the lab, and then infuse them into the patient. Daniel would need to donate yet again for that one. There are a couple of other trials that use haplo bone marrow or stem cell transplants, usually from one of the parents, to induce the killer cells. The world of clinical trials moves very slowly so it will probably be another month or so before we know if Adrienne qualifies for these and which one might be best.

Daniel is going to drive down to visit Adrienne on Friday night, and then to his dad's house on Saturday. Adrienne is going to Disneyland on Saturday with Straight But Not Narrow. It will be a nice break for everyone.

1 Down, 23 to Go

Adrienne had her first radiation treatment yesterday. She has a custom-made mask to hold her head in position to make sure nothing moves since the radiation is quite close to her brain and spinal cord. So imagine this, they put her on the table, put the mask on and bolt it down, line her up using her many tatoos, and then they do a quick CT scan. Off the goes therapist to talk to the doctor and verify her positioning based on the CT, leaving Adrienne alone with her eyes closed. (I don't think people who are claustrophobic could do this.) Several minutes later, the technician comes back and begins the actual radiation. The treatment only takes about 7 minutes but the whole process takes about a half hour. The only thing Adrienne felt was a bit warmth around her neck where she is receiving treatment.

The big issue seems to be transportation. The radiation therapist called yesterday to change the time of Adrienne's appointment and her ride called at the time they were supposed to be there to say it would be another hour. She called a taxi and ultimately arrived on time ($52 later). The ride back home was fine. I'm going to work on a new solution over the next few days. We had considered taking Adrienne's car to her but everyone is concerned about her driving (in LA traffic) if she isn't feeling well or is tired. She will probably feel fine for the first 2-3 weeks, but may feel lousy after that.

Speaking of which, the doctors at City of Hope talked generally about the types of problems Adrienne might have from the radiation to the neck. I did some reading on my own (thanks to the Internet) and found that she is likely to get mucositis and dry mouth, which causes cavities. The problems typically begin after a total dose of 2000 cGy. At 150 cGy per day, I estimate that she'll begin to have problems around day 12 or 13 and it could get fairly serious. We're taking some precautionary measures that Adrienne is used to from having GVHD in her mouth, as well as mucositis through transplant. She has special toothpaste to protect her teeth and some mouth rinse for pain. I've learned it's best to have everything on hand rather than to wait until there's a problem and then wait even longer for a prescription.

Adrienne's school is going well. She has a lot of work to do and especially enjoys her Psychology and Civilization classes. Claremont McKenna has a unique facility called The Marion Miner Cook Athenaeum (they call it The Ath) where they bring in speakers four nights a week and serve a nice dinner. Adrienne has been several times and has enjoyed it very much. She won't be able to go while she is getting the treatment but is looking forward to hearing Mark Geragos speak in November. I can only imagine the audience questions at that one.

DLI and Radiation

Adrienne had her third of four DLIs on Friday and spent the weekend with her dad in Palm Springs. She's been changing her cell phone so we haven't spoken in a few days, but today she was doing fine. The antibiotic she gets after the DLI was prescribed differently at City of Hope but we trust that everything was done correctly. We've learned through experience that each hospital has their own protocols.

Adrienne's PET scan last week was positive with three nodes on the right side of her neck. The left side was clear as well as the chest. This is about as good as we could hope for. She was originally scheduled to start radiation on Monday but that was postponed. City of Hope didn't receive the radiation films from Stanford until Friday and they need a a few days to do the treatment planning. Adrienne should begin sometime this week, though we're still struggling to figure out rides. We understand that the short term side effects should be minimal. In general, she's found radiation to be much easier than chemotherapy but the travel to and from the hospital is very time consuming.

This weekend, we went to Seattle for Curt's mom's 75th birthday party. She's had two hips replaced in the last year and has lost a lot of weight, but we were delighted to see her looking so healthy and happy. She was incredibly happy to have all three of her children together. Everyone was amazed to see Daniel so grown up and handsome.

UPDATE: Radiation to Begin

Adrienne will begin radiation therapy on Wednesday, September 21, for 24 total treatments (3600 cGy total dose).

Two Steps Backward, One Step Forward

Late last week, Adrienne told me that she had new lymph nodes in the same location as last January when her relapse was confirmed. As you might recall, her last PET scan in June showed some active disease in that area but nothing was palpable or even growing at that time so we decided to continue with the treatment plan. After several sleepless nights and a few tears, I decided to fly down a day early to spend some time with Adrienne and then visit with the docs at City of Hope.

We met with a radiation oncologist who actually took a class from Adrienne's doctor while in school. Small world. He felt sure that Adrienne could receive more radiation to the sites where she has disease and that she can get a large enough dosage to potentially be curative. Plus, this doctor believes that Adrienne's relapse is in areas that received little or no radiation previously. They were able to squeeze Adrienne in for the setup, and she begins her treatments next Monday. They need radiation films from Stanford and the results of a PET scan scheduled on Thursday in order to confirm the treatment. We all feel better knowing that we're being proactive and have a promising option. Adrienne can have the radiation while continuing the donor lymphocyte infusions. Her next one is on Friday.

Adrienne will need to have radiation daily for 3-5 weeks, depending on the dosage they decide to give her. The local American Cancer Society provides free rides for treatment, and they will be able to take her to and from her appointments. We were thinking of taking her car to her but the stress of driving in LA traffic might be a bit much.

Adrienne is very excited: she got the research institute job she wanted. She is now officially a research assistant at the Kravis Leadership Institute, which studies and sponsors leadership programs at Claremont McKenna as well as other colleges. She can work as little or as much as she likes, which is perfect. She always tells me what she's doing but doesn't say a lot about how she feels about it. When I asked her how she likes CMC, she said, "I love it" with a big smile.

Can't Float?

Adrienne and I communicate a lot through e-mail. She often sends messages that tell what she's been doing but without a lot of detail. Last night, we talked on the phone and I learned some interesting tidbits.

Because of Adrienne's hip problems, swimming and biking are the only exercises she can really do so she decided to take an aqua fitness class, which combines swimming with water aerobics. Adrienne was mildly concerned when she discovered that the teacher is the men's water polo coach. She's never been a particularly strong swimmer but more importantly, Adrienne can't float. This isn't new. She's never been able to float, even when she was a small child. Thankfully, her coach decided to get her a belt to help her stay afloat so she can do the exercises in the water. Now she's floating so much that the exercises are too easy. Add to that, another student jokingly asked for his own floating belt. Luckily, Adrienne has a good sense of humor about the situation.

Adrienne has joined a club called "Straight But Not Narrow." It was originally formed by straight kids to support gay rights but now they get involved with activities to support other minority rights too. Plus, they have parties. Next week, she plans to attend some meetings for other political groups to see what they're all about.

CMC is a very small college that is known for their small class sizes. Adrienne's largest class has 19 students and the others are a bit smaller. After years in public school classes of 30-35 kids, she is enjoying all the personal attention.

New Roommate?

Adrienne is getting used to the routine and her teachers. She's taking four classes: Economics, Psychology, Civilization, and Calculus. She's also taking Aqua Fitness, which is a pass/fail class. So far, she isn't finding the work particularly difficult or time consuming. She continues to look for jobs and hopes to have something she wants by next week. She's already had a couple of offers but is waiting for the research institutes to select their research assistants before committing. She'll probably be working about 4 hours each week.

Adrienne's roommate decided to move out today, thankfully. It's not that they weren't getting along; it's just that they weren't talking. I think the girl really wanted a single room, which I'm sure her parents will fund (a single room costs about $1,000 a year extra). Adrienne will probably have another roommate in a few days. It's just a shame that her first experience hasn't been real positive.

I will fly down on Monday for Adrienne's checkup and to see the new radiation oncologist. I've been communicating with the radiation oncologist at Stanford who thinks it's a good idea to get another opinion, particularly with the introduction of the new technologies. That evening, Adrienne will be going to a dinner with the president of the college for the McKenna Scholars. Believe it or not, she's worried that she's eating too much.