Wednesday, August 31, 2005

Settling In at College

Adrienne is doing really well after her second day of classes. I was surprised to hear that she was "trembling with nerves" before her first class but has discovered that it isn't as scary as she thought. So far, her workload is manageable and she's even getting out for events each evening, including a comedy night last evening. She is hoping to have a small job (4-6 hours a week) by the end of next week. She was offered one job tutoring at the Harvey Mudd Upward Bound program but decided to wait a few days to hear if she gets a job as a research assistant, which would be her preference. This afternoon, she sent an e-mail saying "I realize I haven't thought about having cancer for a few days." Cool!

Speaking of which, Adrienne's next checkup is on September 12 at City of Hope. On that day, she will see her new transplant doctor as well as a radiation oncologist to explore the possibility of radiation to the nodes where she relapsed last January. There are some new radiation technologies that are more targeted, allowing larger doses. I will probably fly down for the day so I can meet the new doctor and ask lots of questions. Then, Adrienne will have her third DLI on Friday, September 16 at City of Hope. Her dad will take her and then she'll spend the weekend with him. Unfortunately, she doesn't smell too good for a day or two after the infusion because of the DMSO they use to preserve the cells so she really doesn't want to go back to school.

We are having a bit of car trouble this week. My car was having transmission trouble while we were in southern California and it needs a new transmission. Luckily, I have an extended warranty that covers the parts and labor. Daniel's car also broke down on Monday. We're managing despite the inconvenience.

Saturday, August 27, 2005

Adrienne's at College!!!

It's been a whirlwind week for Adrienne. On Tuesday, we loaded the car to the brim with Adrienne's things and drove down to Claremont, California, a beautiful little college town that looks much like Los Altos or Menlo Park. The downtown area is about 8 blocks by 5 blocks and is easily reached from the college campuses. The surrounding communities of Ontario and Pomona aren't nearly as nice but I expect Adrienne will be on campus most of the time.

On Wednesday, we met a doctor and the staff at City of Hope. The place is enormous and a bit overwhelming compared to the relatively small size of Stanford. They have volunteer guides who take you from one building to another and one clinic to another. It will take some getting used to but the care is excellent. I had spoken to COH before we made the decision to go to Seattle for Adrienne's second transplant, and now I'm glad we made the choice we did as it was obviously the best place for her at that time. Because Hodgkin's Disease has such high cure rates, especially in young people, there are no institutions that have any experience with her situation. COH has two patients now that failed autologous transplants and they are trying to figure out the next steps.

Thursday was Adrienne's first day of orientation with a corresponding parents' orientation so we saw each other for brief times throughout the day. Adrienne's dad and stepmom came for several hours and I stayed into the evening to help her unpack and get set up. The college is amazing and obviously very dedicated to the students. Adrienne seemed a bit worried about being on her own when I left on Thursday night but she sounded much more excited when I got e-mail from her yesterday. The big issue appears to be her roommate, who is a bit of a snob. We'll just have to see how that goes. If worse comes to worse, I suppose Adrienne can get a new roommate but I'm sure she wants to stay in her room, which overlooks a Japanese garden. Her room is very big with two large closets so she doesn't seem to need some of the space-saving items we purchased before she went. This afternoon, the school is taking the kids in vans to Target and Best Buy so she can get the few items she still needs, like a desk lamp.

Daniel took the opportunity in southern California to visit with some friends he made at Supercamp. On the way home, we stopped at Magic Mountain so he could ride the roller coasters. Despite his earnest attempt to get me on one, I managed to keep my feet firmly planted on the ground.

Monday, August 22, 2005

Second DLI

Adrienne had her second DLI today, followed by the vancomycin. This dose of lymphocytes was five times the amount of the previous infusion though the volume was the same. So far, she has no side effects and is feeling fine. Her hemoglobin dropped a bit since her last counts so that probably accounts for her increased fatigue the last few days, but it's not serious. Overall, she is feeling very well.

We leave tomorrow for CMC. Adrienne starts orientation on Thursday and classes begin Monday. She is very excited about the next few days, except for the packing part, which we all find a bit stressful.

Please send me an e-mail ( if you would like Adrienne's address and phone number at school. We are still waiting for the e-mail address.

Thursday, August 18, 2005

18th Birthday!!!

Today is Adrienne's 18th birthday (and tomorrow is Daniel's 17th). All parents probably think of 18 as a small miracle. We think of it as a big miracle and are thankful for it. Adrienne is feeling well with lots of energy and excitement for college, and has already registered to vote.

Yesterday, we saw Wicked in San Francisco to celebrate. If you haven't gone, we highly suggest you try to get tickets. It was a wonderful show and funny too. It's a "prequel" to The Wizard of Oz and will change the way you see that movie.

Adrienne has her second DLI on Monday and then we're off to Claremont McKenna on Tuesday. She can hardly wait.

Wednesday, August 17, 2005

Jaclyn Rene Masieczek

When Adrienne had her most relapse last January, I was doing some research on the Internet about an experimental procedure called a “donor lymphocyte infusion.” I went to Yahoo and just typed “Hodgkin’s donor lymphocyte infusion” and a web site came up titled: “” This was a site about a young woman named Jaclyn Maciaszek who was diagnosed with Hodgkin’s Disease in 1995 when she was 17.

The web site wasn’t very up to date but I figured that Jaclyn had had about ten relapses in the 10 years since she was diagnosed and, thankfully, she was still alive. I was very excited. So, I sent her an e-mail asking how she was doing and specifically about her donor lymphocyte infusions. A few weeks went by with no reply and then one evening, out of the blue, I received a 3 page e-mail from Jaclyn. She’d been in the hospital getting chemo but she couldn’t wait to talk with us. She’s from a remote area of Florida with what she calls the “snowbirds” (older people who come from the northeast in the winter and go home in the summer) and she hadn’t really known anyone with Hodgkin’s Disease or someone with many relapses like her. After a number of e-mails, pictures back and forth, life stories, and so on, we finally talked on the phone. Not once, but several times a week, and sometimes every day. Jaclyn’s husband travels a lot for his job. She says he hates it but the medical insurance is great and she sure needs that. Adrienne and I were happy to have someone to share with, who actually knew what it is was like to have so many relapses and many of the therapies. We talked about treatments, side effects, clinical trials, things most people would be bored with, but not us.

It turns out that our paths had crossed several times though we had never met. In 2003, we were all at the Seattle Cancer Care Alliance while Adrienne had her second transplant and Jaclyn had her first donor lymphocyte infusion. Then last year, Jaclyn traveled to the Nike Women’s marathon with her husband, sister, and brother-in-law. And while she wasn’t able to train for the race, she and her family raised $25,000 for the Society, while Adrienne was a mentor and honoree right here for the walk team.

Jaclyn once said that she thinks God put her here for a reason…to see how much chemotherapy and treatment one human being could take. When we met, she had just had chemo and was waiting for her blood counts to come up so she could get her next round, but time went on and her counts never came up. We’d talk about clinical trials like Velcade, and monoclonal antibodies, and even donor lymphocyte infusions, and either the trials weren’t generating the results we wanted or the treatments were too dangerous. Her disease was still there but it seemed stable and sometimes that’s all you can hope for. She wasn’t about to let things get her down. She and her husband were looking to buy land and build a house. As a substitute teacher, she spent weekends in classes to keep up her certification. We talked about Adrienne’s senior prom and her husband Darin offered to fly out and escort her because he wanted her to have that night. (She got a date after all and had a great time.) One night Jaclyn called and said that her wig had caught on fire and the three of us laughed, though you could tell she was upset.

The last few months have been very hard for Jaclyn. Her blood counts have been so low that she’s needed platelet and red cell transfusions twice a week. Her spleen has been so enlarged from her disease that she couldn’t wear a pair of shorts or pants, despite losing about 25 pounds. Between low blood counts and disease in her lungs, she could barely catch a breath. Despite my almost daily calls for three weeks, we haven’t been able to talk. Last week, Darin called to say that Jaclyn had just died.

So why tell you this story? Because as you go through the daily routine of your life, I hope you will think of Jaclyn, 27 years old, spending the last 10 years of her life fighting a disease that many people say is curable, a disease that sapped her of her strength and her tremendous will to live. Jaclyn would have endured any treatment just for a chance at a normal life, just as Adrienne would.

Tuesday, August 16, 2005

Holding Steady

Adrienne is pretty much back to normal. We are lucky that the chemo she got didn't affect her blood counts too much so they came up really well. Her platelets are quite high (550,000) but that is due to extensive radiation to her spleen and is normal in that situation. Adrienne takes penicillin daily to prevent infection that could result when you don't have a functioning spleen. So far, she has no side effects from the DLI and she is scheduled to get the second one on Monday.

Tentatively, Adrienne's hip surgery is scheduled for December 19, with preop checkups on December 12. The surgery will take place at Stanford, not at the children's hospital. Adrienne has had scans and radiation there but never surgery. Due to her cardiomyopathy, there will be a bit more coordination than usual but we're sure it will all work out. We went to Las Vegas last weekend and did a lot of walking, leaving Adrienne in quite a bit of hip pain. In Las Vegas, we saw the new Cirque du Soleil show, Ka, at the MGM Grand. Wow, you should definitely go to see it the next time you are in Las Vegas.

At the last minute, we decided to send Daniel to Supercamp at Stanford. He's been twice before, before 9th grade and before 10th grade, and he loved it. Now he is doing the leadership forum to build his academic and leadership skills. He comes home on Saturday.

Adrienne's 18th birthday is this Thursday and Daniel's 17th birthday is this Friday. We're planning a bit of a celebration here with the family on Saturday. Tomorrow, Adrienne and I will go to San Francisco to see Wicked as her birthday present. We're really looking forward to it.

Wednesday, August 10, 2005

Good Counts, Bad Hip

Adrienne saw the BMT doctor today. Her blood counts are better than ever and she is feeling great. There is no sign of graft-vs-host-disease. Being off chemo for three weeks does wonders. She isn't needing naps or falling asleep early in the evening like she has for the last few months. She looks wonderful and healthy. Thankfully, the doctor is unable to feel any nodes in her neck.

Adrienne also saw an orthopedist today who specializes in hips. He was able to explain her scans and pain to us in detail. When he pointed out the problem on the MRI, it was obvious. Adrienne does indeed have avascular necrosis, also known as osteonecrosis. From Adrienne's standpoint, they are the same thing: she has dead bone in the femoral head, the top of the large leg bone. Her AVN is between stage 1 and 2, a good time to catch it. The solution is a procedure called a "core decompression." Essentially, they drill an 8 mm hole from the side into the femoral head in order to relieve the pressure. The procedure is effective about 75% of the time to prevent further degeneration and reheal the bone. It sounds awful but isn't so bad compared to other things Adrienne has been through. The toughest part is 6 weeks on crutches following the procedure. Since the AVN appears to be progressing slowly, Adrienne will have the surgery in December after her first semester at college.

Speaking of which...we finally finished buying all the bits and pieces Adrienne needs for her dorm. She often mentions another item she would like to have but, since there isn't any more room in the car, it will have to wait until we get there. There are less than two weeks until we leave for CMC on August 23rd, after her DLI on the 22nd. Talk about cutting it close.

Our good friend Jaclyn Masieczek passed away on Tuesday at the age of 27 after a 10 year battle with Hodgkin's Disease. We met Jaclyn through the Internet last January, after Adrienne relapsed, and became fast friends. We'll miss her greatly. We miss her already.

Thursday, August 04, 2005

Good Reports

Adrienne had an echo and saw her cardiologist this morning. Her heart is basically the same as last time she saw the doctor in March. This is good news and means that she doesn't have to start meds. No one seems to be able to explain her blue toes and sometimes blue lips, but it doesn't bother her much so we aren't going to worry for now.

Adrienne also had follow up labs and a chest xray, which were all good. So far, there are no side effects from the DLI. I thought it was funny that we received a letter from the insurance company in today's mail saying that they approved the DLI, well over a week after she had it. I don't worry about these things since the hospital won't do anything until and unless the insurance company has approved it, and sometimes the paperwork is lagging.

It's been a bit of a hassle but an adult orthopedist has agreed to see Adrienne to look at her hip. It is unclear if she has osteonecrosis or avascular necrosis, the former being less severe and slower to progress, although both conditions are degenerative. Adrienne is planning to take a swimming class at Claremont McKenna, which won't hurt anything.

I think we finally finished shopping for the things Adrienne needs for her dorm. She's been in touch with her new roommate and they've split up some of the essential items. I doubt there would be room in the car for any more "stuff" so anything else will have to wait until she gets there. Luckily, there's a Target right near CMC.