Tuesday, May 31, 2005

Senior Ball

Saturday was Adrienne's Senior Ball at The Palace Hotel in San Francisco. After a day of primping, Adrienne's date, Kevin, came over with his mom around 4:30 in the afternoon so we could both take pictures. Adrienne looked beautiful in her long satin dress and Kevin was very handsome in his tuxedo. Then, they were off to school for pictures and on the buses to San Francisco. While I don't know all the details, Adrienne had a really good time, saying Kevin was very nice, funny, and a good dancer. What more could you ask for in a prom date? Update: I figured out how to get the pictures off the camera and Chris M. was kind enough to post them for me.

Adrienne has quite a busy week getting ready for graduation. Last week, she got her cap and gown. Today is "senior ditch day" where most parents call to say their senior is sick but Adrienne wanted to go to school. Thursday evening is an awards ceremony and Friday is beach day. Except for a big Stats project and some Trig work, most of the work is complete. I wish I could say the same about Daniel, who has lots of work and studying to complete before the school year is out.

Wednesday, May 25, 2005

8th Chemo, 4 More To Go

Adrienne had her eighth chemo on Monday, uneventfully. She felt crummy that day but was back normal by the following afternoon. That's the quickest recovery she's made yet. She is scheduled for another PET/CT scan at the end of June and then just two more chemos, assuming her response remains good.

We had a visit from a case nurse assigned to Adrienne by our insurance company. She is going to talk with some doctors that consult with the insurance company about possible treatment options and clinical trials. We are continually looking for any information out there that might be helpful. It feels good to have someone on our side. She is also going to see if Adrienne can get home nursing for the first month she's at college so she doesn't need to go to the hospital weekly for blood draws.

Saturday is the Senior Ball. We plan to pick up Adrienne's dress this afternoon. Hopefully, I can figure out how to get some pictures on this blog so everyone can see.

Sunday, May 22, 2005

What is a DLI?

Many people have asked what a donor lymphocyte infusion (aka donor leukocyte infusion) is. Here is some good information on the procedure.


Over the past 25 years, bone marrow transplantation has increased cure and long-term survival rates for patients diagnosed with leukemia and other blood disorders. Nonetheless, many patients who successfully weather the risks and complications of a bone marrow transplant (BMT) later relapse.

Formerly, the only treatment option that offered relapsed BMT patients hope of a cure was another bone marrow transplant. However, the risk of serious, life-threatening complications after a second BMT is great.

One strategy of managing relapse, called donor leukocyte infusion, may eliminate the need for a second BMT in some patients.

What is donor leukocyte infusion?
Donor leukocyte infusion is the infusion of your donor's lymphocytes (white blood cells), obtained from blood donated by your original bone marrow donor. These donated white blood cells contain cells of the immune system that can recognize and destroy cancer cells.

The goal of this therapy is to induce a remission of your cancer by a process called the graft-versus-tumor effect (GVT). The donor T-cells can attack and control the growth of residual cancer cells providing the GVT effect. It is hoped that the donor leukocyte infusion will cause GVT and lead to a remission of your cancer.

Who can benefit from a donor leukocyte infusion?
The majority of donor leukocyte infusions have been given to patients with relapsed chronic myelogenous leukemia (CML), although patients with relapsed acute leukemia, chronic lymphocytic leukemia (CLL), myelodysplasia (MDS), non-Hodgkin's lymphoma, Hodgkin's disease, and multiple myeloma have also been treated successfully with a donor leukocyte infusion.

What are the possible side effects of this procedure?
Unfortunately, graft-versus-host disease (GvHD) often accompanies graft-versus-leukemia effect. In GvHD, the donated bone marrow or stem cells view the recipient's body as foreign, and the donated cells/bone marrow attack the body.

GvHD can affect the skin, liver and intestinal tract. GvHD is occasionally life-threatening and often requires admission to the hospital for treatment. GvHD treatment is usually steroids which suppress the immune system and sometimes can lead to infections. GvHD, and its treatment, can be fatal.

Friday, May 20, 2005

Donor Lymphoctye Infusion Scheduled

Adrienne's bone marrow transplant doctor at the children's hospital, Dr. Agarwal, called yesterday to talk about Adrienne's upcoming DLI. Based on the recommendations of Dr. Negrin, head of BMT at Stanford, and Dr. Flowers, head of long term followup at Seattle Cancer Care Alliance, she has agreed to move ahead. Dr. Agarwal expressed her continued concern about GVHD with DLIs but her experience is in the leukemia setting when the patient does not have 100% donor cells. In that case, the risk of GVHD is very high. Both Dr. Negrin and Dr. Flowers have more experience in the setting of Hodgkin's Disease when the patient has 100% donor cells and feel that the risk of GVHD is minimal and, if it happens, it is likely to be not severe and of a chronic, easily controlled nature. At the cell dose Adrienne will receive, Dr. Negrin has not seen any GVHD and Dr. Flowers has seen some but it required treatment in only one instance.

Adrienne will have five more chemos before the DLI, which will happen the last week in July. She will be followed closely for the first 60 days during the period of risk for GVHD. Obviously, she'll be going to college at the end of August so she will be followed at City of Hope. Her oncologist wanted her to go to Children's Hospital of LA but that would be a 50 minute drive each way, with no traffic, so it is not really feasible.

Adrienne is definitely asserting her independence in making her own medical decisions. She keeps saying that she'll be 18 soon and can do what she wants. I was worried that she might decide she doesn't want more treatment but actually, it's the opposite. When I wanted to wait before the start of chemo until we had our vacation in Mexico, she wanted to start the next day. When I was unsure about the DLI, she said she wanted to take the risk and have it. We all know how smart she is and she isn't afraid to ask questions or to state her opinion. Sometimes the doctors looked shocked, but also mildly amused, at her comments and questions.

Adrienne is looking forward to her prom. We have all of the accessories (shoes, purse, sweater) now so she's ready to go. The dress will be hemmed and ready by Monday next week. We'll be sure to take lots of pictures.

Monday, May 16, 2005

Dress for Prom

On Friday, after several frustrating days of shopping, we found a gorgeous dress for Adrienne's prom. It's a satin material in a fuschia color, very dramatic. Adrienne had a group over yesterday to work on a school project. The girls all talked about their dresses, and it was nice to see Adrienne join in. We have a few accessories to get including shoes and a clutch purse, but are pretty much ready to go. We'll be sure to get lots of pictures before the big event on Memorial Day weekend.

Medically, things have been fairly uneventful. Adrienne had a few hives on Saturday morning and nothing since. She has been feeling better than usual after her chemo. We never know how she'll feel from one treatment to the next. Sometimes she feels crummy for days and other times she feels normal after just a day or two. It makes it hard to plan.

I am putting together a "memory board" for Adrienne's graduation and was going through her school papers last night looking for cute and interesting things. I ran across a letter she wrote in 1st grade that's just precious, but also a little sad. Here's the text of it (spelling errors and all):

Dear Santa (or mommy),

For Christmas I would like a baby tumbles saprise and kitty kitty kitten. Those are the basic things I would like. Love, Adrienne

P.S. I know there is no Santa Claus.

Friday, May 13, 2005

Senior Ball

Exciting news...Adrienne is going to her senior ball with a friend of our family, Kevin. This week, she decided she would ask him and he called last night to say he would be delighted to take her. We went shopping for a dress yesterday in San Francisco without much luck. For the most part, the dresses that Adrienne liked were too big (that happens when you wear a size 0 or 2). We'll try again this weekend. We are all very excited for her.

After several uneventful chemos, the hives and itching were back yesterday. We think it might be a result of three weeks between treatments, which we rescheduled due to AP exams. Sometimes side effects go away as your body gets more used to a treatment. The three weeks probably provided some time for her to build up some immunity.

Adrienne will be getting chemo regularly every other week, on schedule, until the end of July. We don't want any more postponements to make sure she can go to college. That means she'll get chemo the Monday before her finals. I've asked her school to give her whatever accommodations they can and am waiting to hear back.

Besides the hives and quite a bit of nausea the first two days, Adrienne actually feels better than usual at this point. She is quite tired but she looks great.

Monday, May 09, 2005

Seventh Chemo

Adrienne had her 7th chemo today, which was pretty much uneventful. Her chest xray was clear of lymph nodes, thank goodness, and her blood counts remain strong. Adrienne skipped chemo last week so she could take her AP exams while feeling well, but we are going to try to stay on schedule for the remaining treatments.

Adrienne's oncologist, Dr. Link, came to talk with us toward the end of the infusion. Adrienne made him promise that she would only have five more treatments, which he gladly did given her good response to this chemo. We also discussed the timing of donor lymphocyte infusions at the end of July. This would mean that Adrienne has a risk of developing graft-vs-host disease during the first month at college, but we are willing to take the risk. We are hopeful that she won't have this complication since she has 100% donor chimerism with her brother's stem cells.

Since our meeting with Dr. Negrin last week, Adrienne has been very upset. Dr. Negrin frequently pointed out that her treatment options are limited. We've spent the last week trying to come to terms with the lack of options, but we're happy that she is responding well to treatment now and are looking forward to sending her to college in August.

Daniel has been sick with a bad cold for a few days but is eating well tonight. He stayed home from school today and we'll just have to wait and see how he feels tomorrow.

Monday, May 02, 2005

Stanford BMT Visit

Today was a very long but productive day. We awoke early to drive back from Humboldt County so we could make Adrienne's appointment with Dr. Rob Negrin, head of BMT at Stanford. We met for over an hour and discussed all possible treatments, some of which are available today and some of which are in clinical trial. Until Adrienne turns 18 in August, most trials are not available, as we thought. Dr. Negrin thinks we should go ahead with donor lymphocyte infusions (DLI) at a low dose and escalate to a higher dose if Adrienne's disease progresses. At the low dose he proposed, he has not seen any graft-vs-host disease, though other institutions have reported some. He proposed that Adrienne complete the current course of chemotherapy and then go ahead with the DLI. We need to talk with Adrienne's oncologist to figure out what the exact timing will be.

We had a great time at the Avenue of the Giants 1/2 marathon this weekend. I had my best time ever (2:54.34), though I'm quite tired and sore today. My goal is to do a six hour marathon in Anchorage in June. Adrienne worked at the TNT checkout table for the day. We were shocked that people came to her and complained about other TNT people on the course. One man said that a TNT person was too loud! The victory party was really fun...great food, great music, and lots of dancing. I enjoyed watching Adrienne dance and just have a good time.