Saturday, December 24, 2005

Happy Holidays Everyone

Adrienne is doing great after her surgery. She spent just one night in the hospital and has even stopped taking the pain meds because they were making her too dizzy. She is slow getting around on crutches but otherwise feels well. We even got out last night to see Memoirs of a Geisha. We both read and loved the book and so we were excited to see the movie. While a movie can never capture a great book, we thought they did a good job and enjoyed seeing our own Hakone Gardens in quite a few scenes.

2005 has definitely been a difficult year for our family but we are hopeful for better things in 2006. Happy Hanukkah, Merry Christmas, and Happy New Year to everyone. When you're feeling rushed or having trouble setting priorities, think about this little story.

A professor stood before his philosophy class and had some items in front of him. When the class began, wordlessly, he picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was.

The professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was.

The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous "yes."

The professor then produced two cups of coffee from under the table and poured the entire contents into the jar, effectively filling the empty space between the sand. The students laughed.

"Now," said the professor, as the laughter subsided, "I want you to recognize that this jar represents your life. The golf balls are the important things - God, family, children, health, friends, and favorite passions -- things that if everything else was lost and only they remained, your life would still be full.

The pebbles are the other things that matter like your job, house, and car.

The sand is everything else -- the small stuff.

"If you put the sand into the jar first," he continued, "there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff, you will never have room for the things that are important to you. So pay attention to the things that are critical to your happiness. Play with your children. Take time to get medical checkups. Take your partner out to dinner. Play another 18. There will always be time to clean the house and fix the disposal. Take care of the golf balls first -- the things that really matter. Set your priorities. The rest is just sand."

One of the students raised her hand and inquired what the coffee represented. The professor smiled. "I'm glad you asked. It just goes to show you that no matter how full your life may seem, there's always room for a couple of cups of coffee with a friend."

Monday, December 19, 2005

Surgery is Done!

Today was an incredibly long day but Adrienne's surgery went smoothly. She was scheduled for 12:20, with arrival at 10:20 am. They didn't take her in until 5:30 pm, no food, no drink, no nothing. Needless to say, none of us were happy campers.

Tonight, Adrienne isn't feeling as bad as she expected and was able to get up and around with a walker. The doctor said the outside of the bone was soft, as normal, while the inside was hard as rock, indicative of necrosis. Hopefully this surgery will do the trick and Adrienne will be able to get back to her normal activity and exercise after 6 weeks.

Adrienne is supposed to be in the hospital overnight and home tomorrow, assuming no problems. I'm sure she's the youngest one on the unit! She has tight stockings on her legs and a funny machine that fills with air and then deflates, all to make sure she doesn't get any blood clots. All in all, she is handling things very well. Her doctor said she's delightful.

Tuesday, December 13, 2005

Not Much News

Adrienne is doing well finishing up her exams. She'll be home on Thursday and back to the doctors' for her preop on Friday, with surgery on Monday. Naturally, she's getting pretty nervous about the whole thing. She's moving to a dorm with an elevator because she won't be able to manage a lot of steps on crutches when she goes back in January. If all goes as planned, she'll be back to normal in 6 weeks.

A GI doc finally looked at Adrienne's CT and said that nothing needs to be done now. Her liver function tests have been normal indicating good blood flow through her liver. If that changes, then they'll do a biopsy. It's possible that all the drugs she's received have done some damage or that one of her current medications is causing a problem. In any case, we can forget it about for now.

Adrienne will be pretty much homebound for a month recuperating. If you have time, she'd love to have a visitor or two.

Tuesday, December 06, 2005

L is for "Lil" Miracles

We met a family earlier this year who are now at St. Judes Children's Hospital in Memphis while their 6 year son undergoes his third bone marrow transplant for acute myelogenous leukemia. In the hallway outside of the cafeteria is the "alphabet of cancer" written by children affected by cancer. The family has been posting images of each letter. Today is the letter L for "Lil" Miracles, and it is very true for our family. We are very fortunate and thankful that Adrienne is in remission. We live each day fearful that her cancer will return once again but we appreciate each day that she is healthy and able to live out her dreams. Enjoy!

"Lil" Miracles by CH

Small things that happen everyday when you live with cancer. Something to look forward to. The smallest or BIGGEST thing that happened this week.

"Lil" miracles are things like...a friend finishing chemo. Finding out your scan was clear! Getting out of ICU.

Or they can be the tiniest thing like...a friend from school calling to say "Hey, I miss you!" A nurse remembering you love chocolate and bringing you 2 candy bars.

Or they can be so BIG you want to tell the whole world. Miracles like a tumor disappearing without chemotherapy or radiation. Those are the best kind of miracles. The ones the world knows about. So watch for "lil" miracles and big ones too!

Update: The GI doc looked at Adrienne's scans and said we don't need to do anything right now. As long as her liver function tests are normal, which they are, they'll just keep an eye on things.

Saturday, December 03, 2005

Quiet Week

A quiet week is good for us. We've been basking in the glow of the good news of Adrienne's remission after so much bad news this year. No word on the liver issue since I asked for a GI doctor to look at the scans. We should know more early next week. We're always amazed at how long some things seem to take.

Adrienne has had a very busy week at school with tests and presentations. After an exam in her Psychology class on Thursday, her prof told her about another student who relapsed and wondered if she could give the person Adrienne's name. Adrienne naturally agreed. She doesn't know who it is yet but we know all too well how devastating a relapse is, and hopefully Adrienne can provide some support.

Adrienne wants everyone to know that she really appreciates the comments, as well as the support and love she gets from so many of you. Thank you from mom too.

Monday, November 28, 2005


For once, we got some excellent news. Adrienne's PET scan is normal! Words can't describe how happy and relieved we are. We thought she was in remission but after all the bad news of the last few years, we didn't want to get our hopes up too much. Now we'll all sleep soundly tonight.

There may be an issue with Adrienne's liver, however. She had an ultrasound last year to investigate a possible clot but the problem seemed to resolve on its own. Now the problem is noted again. The doctor couldn't access the CT portion of the scan so we need to wait until tomorrow to figure out if further action is warranted. This seems minor compared to everything else and we'll deal with whatever comes our way.

We had a really nice Thanksgiving, though Curt wasn't able to be here. That means we'll have a second Thanksgiving this weekend, not that I need any more food! Adrienne had a really good visit, sleeping much of the time as college students do, but getting in some shopping too. She has a couple of really busy weeks coming up with exams and final projects, and will be back on either December 14 or 15 for her winter break.

Thank you for checking in with us. Adrienne reads the blog from school and would love to see comments from people who visit this site. Please leave your name with the comment because we can't always tell who they're from.

Monday, November 21, 2005

Happy Thanksgiving

Things are as normal as they could be for Adrienne. She is busy with her school work, her work at the Kravis Leadership Institute, and socializing with friends. After all the medical stresses of the last few months, she is now stressed out about her school work but is enjoying herself as well. All of us who went to college remember those days well.

Adrienne saw the new Harry Potter movie last weekend during a special midnight showing for CMC students. She had a lot of fun being out with her friends but didn't like the movie as well as the previous three. She and Daniel have been huge Harry Potter fans since the first book came out. Curt loves the books too so I'm the lone man out. We have several copies of each book because everyone wants to read at the same time.

Adrienne is excited to come home for Thanksgiving. She can taste almost everything again, just in time. She's especially looking forward to tasting sweets since that's been the last sense to come back. Except for the PET/CT on Friday, the weekend is pretty much open. We're hoping to get to see Rent this weekend.

Wednesday, November 16, 2005

Hip Surgery is On

After much going back and forth, the anesthesiologist at Stanford has agreed to clear Adrienne for surgery on December 19 and do her preop the Friday before. He seemed quite anxious about taking on an oncology and cardiac patient from the children's hospital but both her doctors there agreed that she is perfectly healthy for the procedure and the long anesthesia, 3.5 hours. Adrienne will probably spend two days in the hospital and will be discharged with a walker, after her pain is under control and she learns how to move properly to avoid fractures.

The surgery is called a core decompression. The top of Adrienne's femoral bone, which is the large bone in the upper part of the leg going into the pocket in the pelvis, is necrotic, dead. The doctor will drill at 4.5 mm hole from the outer part of the leg up into the necrotic area to relieve the pressure and hopefully cause new blood vessels to grow. The surgery is effective 80 to 90% of the time in regenerating new bone and avoiding total hip replacement surgery.

The PA over in surgery had asked for a copy of Adrienne's last echo, essentially an ultrasound of the heart, done in October. You may recall that she has mild cardiomyopathy resulting from one of her chemos, specifically adriamycin, in 1997. This was diagnosed in 2004 and she sees a cardiologist twice a year to moniter her condition. Her most recent echos have been very similar actually showing quite good numbers. I asked that a copy of the echo report be faxed here when they sent it over to surgery. I was quite surprised to see quite a significant drop in Adrienne's shortening fraction. Her ejection fraction, the more important measurement, is essentially unchanged. I understand that a drop in the shortening fraction precedes a drop in the ejection fraction. Up until now, she's been able to avoid medications for the problem, but it may be necessary in the next year. Adrienne isn't worried however since she had a new technician and she's sure she did something wrong. Adrienne's next cardiology checkup is in March.

Sunday, November 13, 2005

Doing Much Better

Adrienne is feeling much better overall. Her voice is back to normal and she's been able to resume her regular activities. She still has numbness at the tops of her legs but it doesn't appear to be getting worse. Next up is a PET/CT scan on November 25, the day after Thanksgiving, to make sure she is in remission, as we hope.

Adrienne before Monte Carlo, a themed homecoming dance:

Thursday, November 10, 2005

She Can Talk!

After nearly two weeks with no voice, Adrienne is sounding almost back to normal. She saw her radiation oncologist yesterday who said he's had four patients with similar radiation (remember this is brand new). Two have had this problem and two didn't. The two who had the problem began radiation with a cold. Aha! Her sense of smell is almost back to normal and she can taste many things. The doctor felt that she would have her full sense of taste back by Thanksgiving, making her very happy.

Adrienne also saw her BMT doctor and a neurologist about the numbness on the front of her legs. As we half expected, they weren't able to figure out what the problem is. Adrienne says it feels like neuropathy but that's generally in the feet and hands. She knows what neuropathy feels like, having had much trouble with it in the past, but they don't think that's what this is. She is supposed to call immediately if it gets worse, though it has seemed stable for a few days.

I didn't know colleges had homecoming but apparently CMC does. Adrienne asked me to send a dress down to her for Saturday night's festivities, the only dress in her closet that she didn't take with her. There have been special activities all week, culminating with a big football game (of course) and a Monte Carlo night and dance on Saturday night. Adrienne is looking forward to everything.

Monday, November 07, 2005

New Look, Some Decisions

I thought it was time to change the look of Adrienne's blog. I hope you like it. I'll try to find a good picture of Adrienne to post here too.

After much going back and forth, we found that it will be impossible to schedule the CIK trial during Adrienne's month off of school in December and January. I had thought that Stanford was being difficult when I asked for certain dates but it turns out that the cells have to go to a lab in Philadelphia for processing, and they are unable to accommodate us. We hope that Adrienne can hold a remission until May when she has plenty of time to do the trial. The radiation seems to have worked and we hope her disease will stay under control during the next 7 months until she can do the trial. She is scheduled for PET/CT the day after Thanksgiving and we are hoping for great results.

Adrienne will have the hip surgery as originally planned on December 19. We hope to do the preop after her PET/CT so she'll be ready to go as soon as she gets back from college on December 15. I'm not sure if she will spend a night or two in the hospital yet, but she would be staying at the adult's hospital this time. I want to make sure her pain is under control with oral meds before she comes home. After that, she will spend 6 weeks on crutches.

As a result of the radiation and apparent damage to the vocal cords, Adrienne cannot talk at all. This is quite worrisome as it has been over a week now without any improvement, so she will see a doctor this week. She also has some new numbness in both hips and down the front of her legs that needs to be evaluated.

Wednesday, November 02, 2005

Change in CIK Trial

Yesterday, while trying to schedule the CIK trial and follow-up labs, I discovered that the follow-up really can't happen at City of Hope as we had planned. The main issue is that Adrienne needs to have toxicity/safety checks at Stanford every three to seven days for the first 30 days following the infusion. Since this is a Phase I clinical trial, these checks are required by law and with the license through the National Cancer Institute. NCI is funding the study and they have very strict rules for how Phase I trials are conducted. This makes a lot of sense in terms of protecting patients but certainly messes up our plans. Adrienne will also need frequent labs, which we had hoped to do at City of Hope, but some of these can only be done at Stanford.

I have a call into the orthopedist to find out the risk of delaying Adrienne's hip surgery. Last summer, her AVN was between stages 1 and 2 (of 4 stages). AVN is a degenerative disease but the rate of progression varies in each person, typically between one and three years. The core decompression surgery she is supposed to have in December is only effective in stages 1 and 2. If you don't stop it then, you have to wait until stage 4, which means a total hip replacement. We really want to avoid that because it is a major surgery with lots of rehab and hips only last 15 to 20 years. Plus, it has been a major project to coordinate the docs at the children's hospital and those at the main hospital at Stanford.

So, stay tuned. Right now, we're thinking of moving the CIK trial up to December and delaying the hip surgery until March or May. It means Daniel would under apherisis right around Thanksgiving and Adrienne would get the infusion as soon as she finishes her final exams. That would give us the 30 day window needed for her follow-up. We hope that the final labs on day 56 can be collected at City of Hope and sent back to Stanford.

Monday, October 31, 2005

Happy Halloween

We don't get a lot of kids at our house for Halloween but we have plenty of candy, just in case. Adrienne's dorm did a community service project last night handing out candy for children. She wasn't sure of the details since it was a surprise.

Adrienne saw her BMT doctor at City of Hope on Friday. He is quite excited about the killer cell trial and asked her how it feels to be on the forefront of medical research. Adrienne is taking it all in stride. She still can't taste or smell anything and it could be several weeks before her senses come back. She's had trouble talking and, as of yesterday, can only whisper. Hopefully she'll be getting back to normal quickly so she can enjoy eating at Thanksgiving.

Thursday, October 27, 2005

Okay, now it's done

Really, it is. Adrienne had her last radiation treatment yesterday afternoon and promptly washed off the markings they used to align her. They were bright blue, looking oddly like Indian war paint. Adrienne was wearing high-collared shirts to hide the markings and now she doesn't have to. She says it looks like she has a tan on the radiated areas and it hurts like a sunburn, but there are no other obvious reminders of the treatment right now. Hopefully, her sense of taste and smell will return soon. She has a check up with the BMT doctor tomorrow and then should have at least a couple of weeks off with no hospital appointments.

Adrienne will have PET and CT scans in about a month to verify that she is in remission once again. Since the lymph nodes in her neck are completely gone and her chest xray is clear, we have every reason to believe that she is in remission. With today's treatments, it is unlikely that Adrienne is cured, though we can always continue to hope. We are very fortunate that her disease has been slow growing and that her chest is clear, neither of which has occurred the case in the past.

Monday, October 24, 2005

Almost Done

Adrienne has just three more radiation treatments to go, and none too soon. She seems to go from one annoying, painful side effect to another. Last week, her throat was very sore and she had a cough. Now her skin feels like it's sunburnt though nothing is visible. Long term, she will probably lose her thyroid function, but that is easily replaced by a daily supplement. She really can't wait for this to all be over so she can get back to a somewhat normal schedule.

Yesterday, I did the Nike Women's Marathon (the 1/2) in San Francisco with perfect marathon weather. I took this season off of TNT because of Adrienne's treatments and I've been trying to spend more time with Daniel. I enjoyed seeing lots of familiar faces and old friends. There were so many TNTers from across the country. I was a bit sad that Adrienne wasn't there since we did the event together last year, and I'm always sad to see so many people still suffering from these awful diseases. It's inspiring, though, to see all the fundraising, hard work, and dedication from so many.

Almost Done

Adrienne has just three more radiation treatments to go, and none too soon. She seems to go from one discomfort to another. Last week, her throat was bothering her a lot and she had a dry cough to go along with it. Now her skin feels like it's sunburnt although there's no visible burn. The short term side effects from the radiation may take several weeks to go away after she finishes treatment. In the long term, she will probably lose her thyroid but it is easy to take a daily thyroid replacement. She really can't wait for this to all be over so she can get back to a somewhat normal schedule.

This weekend, I did the Nike Women's Marathon (the half) and it was a lot of fun. It was a bit sad not having Adrienne there since we all did it last year, but lots of people asked about her and are thinking of her, which is really nice. It's always nice to see so many TNTers from across the country working to raise money for blood-related cancers, but also sad to see that so many people are still suffering.

Tuesday, October 18, 2005

Killer Cell Trial

Yesterday we saw the BMT doctor at the adult's hospital to discuss the killer cell trial. This is a phase I dose escalation study with a procedure very similar to the DLIs that Adrienne has already had. In fact, they describe it as a targeted DLI where the natural killer (NK) cells are given cytokines to make them reproduce up to 400 times. The biggest issue appears to be scheduling. They only treat one patient a month and Adrienne has her hip surgery at the next available date in December. We're going to propose a week in January after Adrienne has a chance to heal and before she returns to school, and a date in March when she's home from school for a break.

Adrienne's chest xray was clear of disease and her labs were great except that her lymphocyte count was quite low. I was curious about it because she's been getting lymphocyte infusions. It turns out that radiation destroys lymphocytes so Adrienne still needs to be careful about being around sick people. Otherwise, everything is perfect. Adrienne had an echo yesterday also that turned out to be quite a production. First, it started nearly 90 minutes late. Then, Adrienne had a student who had a hard time completing the test, and finally the power went out. After over an hour (this usually takes 20 minutes), they let Adrienne go without all the pictures they needed. Hopefully it will be enough for her surgery in December.

Rachel asked about Adrienne's major. Hmmm, that's sort of a fluid question. Right now she's interested in Psychology with a sequence (like a minor) in Leadership Studies, a unique program at CMC. Adrienne works at the Kravis Leadership Institute and has become very interested in the sequence, which has quite a bit of overlap with psychology. She can do a summer internship at the Kravis Institute as part of the sequence, which would be a great experience. This summer, we are considering a study abroad program in Spain that focuses on intensive Spanish language studies and Spanish culture. Most students spend their junior year abroad but, with Adrienne's health issues, that would be impossible.

Rachel: Can you send me your e-mail address and Darin's at

Friday, October 14, 2005

7 More To Go

Does it sound like we're counting down? I know I am and Adrienne is too. She's been amazing over the last four weeks, getting herself to and from daily treatments, and dealing with the side effects on her own. She has four treatments next week and three the week after, and then she's done. Let's hope that this gets rid of the beast once and for all.

I got a call today from a physician's assistant in the orthopedist's office. Finally, someone is offering to help with the clearance for Adrienne's surgery in December. The PA will contact the oncologist and cardiologist and obtain all of the necessary records and clearances. Any last minute tests will be scheduled, though she didn't think any would be necessary. At her visit on Monday, Adrienne will get some additional labs as well as an echo just to verify that her cardiac function is unchanged. We aren't expecting any surprises there.

Adrienne is very happy to be coming home this weekend, even though it's just for a few days. She's looking forward to some home-cooked food, fish, and sushi this weekend. Her requests certainly run the gamut. The food at school is fine; she's just ready for a change after seven weeks.

Tuesday, October 11, 2005

Glass Half Full

Adrienne's radiation treatments are going well. She saw the doctor yesterday and she's only lost about two pounds. Her mouth doesn't seem to be getting worse, although it isn't getting better either. She constantly has a bad taste in her mouth, somewhat salty, caused by dry mouth. She has lost hair around the nape of her neck, higher on the right than the left. She's a trooper though, not complaining much about the discomfort and happy that the lumps are gone.

Adrienne is really looking forward to coming home this weekend for a well-deserved rest in the middle of the semester. Can you believe that she's been gone 7 weeks already and the semester is half over? She is enjoying all of her classes, except for Economics, which she finds incredibly boring, and is ready for some home cooked food and good sushi. She also wants to see "March of the Penguins" on Saturday. Any one want to come along?

Friday, October 07, 2005

Half Way There

After tonight's radiation, Adrienne will have completed half of the prescribed treatments. This week has been a bit smoother in terms of transportation and school work. Just one day the radiation tech was running behind and she got back late. Adrienne hasn't had any big exams or papers to complete this week either, making her much less stressed. She thinks the nodes are now gone as she can't feel anything so the goal of the remaining treatments is to kill any microscopic disease that might remain.

Unfortunately, the side effects are getting worse each day. Adrienne has always said that radiation is easier than chemo. Now she is changing that opinion. Eating is becoming increasingly difficult. Bananas seem to go down well so she is focusing on those, as well as a few fresh fruits and vegetables that aren't acidic. She was able to eat a corn dog the other day too. While she had been worried about gaining the "freshman 15," that no longer is an issue. The doctors are keeping a good eye on her weight and she has a nutritionist available to help too. She got a special mix (radiomix) that she can swish and swallow just before meals to deaden her mouth and throat to help with eating. Mostly, she is uncomfortable and says her mouth tastes bad all the time.

After several phone calls back and forth, it looks like Adrienne's hip surgery is scheduled for December 19 with preop on December 16. Stanford requires a preop 7 days before surgery so they are waiving the rules for Adrienne. We are still waiting for the chief of surgery to approve the waiver but are tentatively planning the date. While most people wouldn't want to have surgery just before the holidays, Adrienne wants to complete as much of her recovery as she can before returning to school in mid-January. She'll still be on crutches for a couple of weeks but any pain should have subsided by then.

Adrienne will be back home the weekend of October 14-18, as she has a couple of days off of school. We've rearranged her radiation schedule to accommodate the trip. She's already given me a list of things to cook and bake while she's home though I'm not sure how much she'll be able to eat. Please send her e-mail if you'd like to see her that weekend. She'll also be home for Thanksgiving.

Monday, October 03, 2005

Mucositis But Not Bad

After Adrienne's radiation treatment today, she saw the radiation oncologist. He confirmed that she has mucositis in her mouth and was a bit surprised that she got it so soon. No one knows the precise cause but Adrienne's previous treatment, either radiation or chemo or a combination, must be at fault. He admitted that the TomoTherapy is relatively new and they don't yet know all the side effects. Luckily, it's not nearly as bad as the mucositis she had with her transplants or the GVHD in her mouth after her second transplant. The major problem is with spicy foods that burn and some dry mouth. She has special gum for the dry mouth and special toothpaste to protect her teeth. But, the good news is that two of the three lumps are gone and the third is much smaller and will hopefully be gone after a few more treatments.

We decided to postpone the last DLI after all. The risk of GVHD is high, and that would preclude Adrienne from the clinical trials we are discussing. The BMT doctor at Stanford thinks the other options have a higher likelihood of success. So, instead of the DLI on October 17, Adrienne gets to see her oncologist at LPCH who has cared for her since she was diagnosed nearly 9 years ago. It's hard to imagine that this has been part of our lives for so long.

Curt's birthday was yesterday, so we got away to Carmel overnight. Daniel was down south with Adrienne so we packed up the dogs and off we went. It's been such a long time since we went away by ourselves and we had a great, relaxing time.

Friday, September 30, 2005

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.

Monday, September 26, 2005

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.

Thursday, September 22, 2005

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.

Sunday, September 18, 2005

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).

Tuesday, September 13, 2005

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.

Friday, September 09, 2005

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.

Tuesday, September 06, 2005

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.

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.

Sunday, July 31, 2005

Quiet Week

Since the excitement of the DLI and antibiotics, it's been a quieter week medically. We went to the clinic on Thursday to learn how to deaccess Adrienne's port so I can do it at home next time. After that, we went to the dermatologist to look at a mole on Adrienne's shoulder that looks odd. The dermatologist didn't think it looked cancerous but decided to shave that mole and another one that Adrienne doesn't like for cosmetic reasons. Her skin is a bit painful but she's happy to be rid of these moles, as are we. Otherwise, she's feeling fine and working on getting her energy back from chemo.

On Saturday, Adrienne went to a party for new Claremont McKenna students that live in Northern California. She enjoyed the event and meeting other new students, as well as some current students and alumni. We've been busy shopping all week to get her dorm supplies together. Tonight we are going to a storage place that is holding a special evening (with discounts) for college freshmen. It should be fun, but hopefully not too expensive, since we received the tuition bill for Adrienne's first semester of college this week!!!

Tuesday, July 26, 2005

DLI #1 is Done

Adrienne had her first DLI today. After she got her exam and premeds (and fell asleep), we found out that Daniel's blood culture from the lymphocyte collection grew a bacteria that is very hard to treat. It responds to only one antibiotic, called vancomycin. They ran additional cultures that were negative, but just to be safe, Adrienne has to get two days of IV antibiotics at home. In the past, she had a reaction to the drug called red man's syndrome where you basically turn all red. So, she has to get the drug over two hours rather than one. She got the first dose today at the hospital and will get it every 12 hours at home for the next two days. Otherwise, the donor lymphocyte infusion took place without incident.

Adrienne smells a bit from the DMSO they use to preserve the cells but is feeling fine otherwise. Now we just watch and wait. Assuming that she doesn't get any GVHD, the next DLI is scheduled for August 22.

Monday, July 25, 2005

MRI Results

We got the results of Adrienne's hip MRI late last week. It's taken a bit of research to figure out just what is going on. It turns out that Adrienne has osteonecrosis in her hip caused by radiation. This is very similar to avascular necrosis, caused by steroids, but it progresses at a much slower rate, thankfully. We're not sure what the next steps are but hope to learn more in the next few days. Adrienne will probably require surgery at some point but it seems that we have plenty of time to make a decision on that. If she had avascular necrosis, she would likely require surgery right away.

Adrienne gets her first DLI tomorrow. We are counting on this being an uneventful day. As I mentioned last week, they collected more cells from Daniel than needed. Each DLI has a specific dose so there will be cells left over. We're hoping we can freeze those and use the leftovers for a clinical trial using something called "cytokine-induced killer cells," which Adrienne will qualify for when she's 18.

Wednesday, July 20, 2005

Last Chemo + DLI Collection

Yesterday was one of the longest days in recent memory. We had to be at the hospital for Daniel's apheresis (lymphocyte collection) at 7:30 a.m. With Krispy Kreme donuts in hand, we arrived and Daniel was "hooked up" without incident. We were surprised at the very large bore metal needle that stayed in his left arm during the entire procedure to take the blood out, making it so he couldn't move the arm for four hours. The return side had a regular IV, which was plastic, so Daniel could move that arm and hand. He actually seemed to enjoy himself watching old movies (Cheech and Chong's "Up in Smoke" and "Ferris Bueller's Day Off") while Adrienne and I hung out keeping him company. We got a call last night that they collected nearly 3x as many cells as needed so we are pretty happy. We are hoping that there are enough cells available to do another clinical trial using cytokine-induced killer cells in a few months.

After the apheresis, we came home for a few hours and ate lunch, and Adrienne went to work for a couple of hours. Then we were back to the hospital for an MRI of Adrienne's hips to assess her avascular necrosis, followed by chemo. I had understood that they would do the MRI on her shoulders and knees too, but they said that would take several hours and would have to be done during separate visits. No results on the MRI yet.

Next, Adrienne got her chemo uneventfully. It was the shortest chemo yet. She felt pretty crummy last night and isn't feeling well this morning either. Hopefully she'll feel better by dinner time like she did last time. She's very happy to be done with this chemo, at least.

Adrienne will begin receiving Daniel's lymphocytes next Tuesday, and every three to four weeks after that, assuming she doesn't develop GVHD. She will get at least one treatment while at Claremont McKenna, but we haven't worked out those details yet. She'll either have to fly home for a day or they will need to ship the cells to City of Hope. We would prefer the latter.

Saturday, July 16, 2005

Back from Vacation

Adrienne and I got back from our visit to Montreal and Quebec last night. We had a great time sightseeing and eating at fabulous restaurants. It poured our first full day there but was sunny (and really hot) after that. Adrienne couldn't get over all the French-speaking Canadians and how nice they were. In Montreal, we spent a lot of time in Old Montreal and at the Olympic Park at the Biodome and Botanical Gardens. In Quebec, we mostly walked the streets and took in the sights. Adrienne isn't big on history or scenery but she humored me by visiting many churches, gazing at beautiful historical buildings, and taking in the sights. I think she really preferred the shopping and eating parts. The exchange rate wasn't great and the prices high so we didn't buy too many things. Today, we're just catching up on sleep after the long trip, putting the house back in order, and going grocery shopping.

It helped both of us to take our minds off the previous week's test results. Neither of us like the "watch and wait" approach, but Adrienne is really looking forward to some time off chemo. One option, if her cancer is growing again, is to put her on a maintenance dose of vinblastine every two weeks...indefinitely. There are people who have done this for many years without progression of their Hodgkin's Disease. Adrienne hates this option, of course, but it's there if we need it.

Daniel had two hospital visits this week. On Tuesday, he got his physical and blood tests required to donate lymphocytes to Adrienne. One of the test results came back "equivocal," not positive or negative, so he had to go in again on Friday to get more tests. We should have final results on Monday. Assuming the tests are okay, he'll donate on Tuesday while Adrienne gets her chemo. It should be a "fun" day running back and forth between the cancer center where Daniel will donate and the children's day hospital where Adrienne will get her chemo. She also has an MRI on her joints to assess the extent of her avascular necrosis.

Curt returns from Vietnam on Sunday. He spent two days in the hospital with food poisoning from some bad crab. I don't know all the details yet but it sure doesn't sound like fun.

Wednesday, July 06, 2005

Not Great News

Yesterday, we got the actual PET and CT reports and it looks like Adrienne's disease is actually growing again in her neck. While the node is quite small (6 mm), this is concerning because it means that Adrienne is no longer responding to the chemo. In the past, she always responded and even had long periods of remission. Adrienne's doctor is out of town so we spoke with another doctor and decided to go ahead with yesterday's chemo as originally planned, hoping that it would at least keep things under control. We probably won't know more until tomorrow.

We met with the BMT team yesterday and signed the consents for the DLI but it seems unlikely now that we will go in that direction. DLIs have not been effective in people whose disease is unresponsive to chemo. In that case, the risk outweighs the benefits.

We are still planning to go on vacation on Friday. We really need the break, especially now, and are looking forward to getting away.

UPDATE: I spoke with Adrienne's doctor this morning. He would like to take a "watch and wait" approach to Adrienne's PET. If the node gets bigger, they will biopsy it (and remove it at the same time). Otherwise, she'll have another PET scan in 4 to 6 weeks time.

Adrienne will have her last chemo on July 19 and the first DLI on July 26, hoping that the DLI eradicates any residual disease. The doctor thinks that the node is small enough that the DLIs could help. She will get four DLIs, starting at a very low dose and working up to a higher dose, hoping she doesn't get any graft vs. host disease.

Sunday, July 03, 2005

Very Preliminary Scan Results

Adrienne had two scans this week: a PET/CT and CT with contrast. The PET scan shows metabolic activity in cancer cells while the CT scan shows enlarged lymph nodes. The CT with contrast is more detailed, showing more about lymph nodes as well as the other organs.

I got preliminary results over the phone on Friday afternoon. At first, it sounded like there was increase activity on the PET and a new enlarged lymph node on the esophogus. However, I went back and read the previous scan report from March and it sounded very similar. So, rather than spending the weekend in a panic, we're trying to have a good time and wait for an explanation on Tuesday. Adrienne's doctor was out of town this week and doesn't return until Wednesday so another attending will talk with the radiologists on Tuesday. We wanted to do the scans the previous week while the doctor was here but he wanted them last week when Adrienne didn't have chemo.

Some good news: Adrienne's liver is better after the scare last year. It is actually a bit smaller and the congestion in the lower lobe is gone.

Some bad news: Adrienne has avascular necrosis (AVN) in her hip. AVN is a disease resulting from loss of blood supply to the bones, causing the death of bone and tissue, and eventually collapse of the bone. She had hip pain several months ago while training for TNT but an xray was normal. She was advised to stay off her feet and take Naproxen (Aleve) on a regular basis, which made things feel better. Apparently, an MRI is needed to correctly diagnosis AVN. The problem is caused by all those steroids she took with chemo, and for pneumonitis and graft vs. host disease, and will probably require surgery.

Daniel drove to Santa Barbara with a friend this weekend to visit his dad so it's quiet here with just Adrienne and I. His senior picture proofs came in Saturday's mail and they're great. I can't wait to have matching pictures of the kids. Curt is still in Vietnam and will be back around the middle of July.

Tuesday, June 28, 2005


Adrienne is doing well after her last chemo. Tomorrow is her PET scan and Thursday is her CT. Luckily both scans are in the morning because she can't eat before either one. The tests aren't too unpleasant either (easy for me to say). Adrienne always looks so tiny in those big scanning machines.

Here's some pictures from her graduation:

And here's Adrienne with Giada di Laurentiis from the Food Network at her book signing in Los Gatos:

Tuesday, June 21, 2005

10th Chemo

Adrienne had her 10th chemo yesterday, just two more to go. She felt pretty awful yesterday afterwards and ran a low grade fever last night. This morning, she has no fever but is feeling pretty "yucky." The side effects get worse with each chemo so she's happy to be almost finished.

Adrienne had one of her favorite nurses yesterday. Jessica has been studying for her masters degree in nursing and working only on Fridays. She just finished school so she's working other days now too until September, when she has a baby. She's a tiny little girl, a full five inches shorter than Adrienne, and she's always been so nice to Adrienne. We were happy to see her back.

We've had a bit of trouble scheduling the next few weeks but things seem to be working out now. Adrienne's doctor will be on vacation when she has her scans and her next chemo wasn't scheduled until we get the results. Yesterday, he agreed that we should go ahead and schedule the last two chemos and we'll talk when he gets back. Generally, I don't like to wait for test results and he's really good about calling me as soon as the results are ready.

After a small amount of hassle, Adrienne is now set with a doctor at City of Hope when she goes to college. I had spoken with them in 2002 before we decided to go to Seattle so they already had most of her records and history. When I spoke with the nurse practioner there and mentioned that Adrienne was going to CMC, she said "congratulations" enthusiastically. Adrienne's doc talked with the doc there, who said "wow, she must be really smart to be going to CMC." We all knew that. Just to give you an idea, CMC received nearly 4,000 applications for 270 freshman openings and gives just 30 of the McKenna Achievement Awards, which Adrienne won.

Thursday, June 16, 2005

Feeling Better

Adrienne is finally feeling better after her chemo and then being sick with a virus. She had some small fevers after the ER visit on Saturday but none for several days. She's still suffering some cold symptoms but nothing severe. Scans (CT with contrast and PET/CT) are scheduled for the last week in June. Please think positive thoughts.

Adrienne is all scheduled for her donor lymphocyte infusion on or around July 26. On July 5, she and Daniel will have their workup including extensive blood tests. Daniel will donate the cells on July 25. He is quite nervous about the donation since he had a difficult time giving stem cells, but they promise that this is much easier. The biggest obstacle is that he has tiny veins so he required a catheter last time. We hope to avoid that this time.

On July 8, Adrienne and I are going to take a visit to French Canada, Montreal and Quebec. Daniel has work and school during that time, and Curt is busy with his new business so they can't join us. Adrienne will need to stay around here between the DLI and going off to college, so that is the last time we can get away. Luckily, we have lots of frequent flyer miles and hotel points, making the airfare and hotel free for this trip.

Sunday, June 12, 2005

Graduation and Sick!

Adrienne's graduation went off without a hitch. Thank you to everyone who came to share this special event with her, both at the commencement and at the party afterwards. This was such an important day for Adrienne and our family because we are thankful for each day she is with us.

Adrienne was sick from her chemo all week but was feeling better on Friday just in time for graduation. However, Friday night she started a fever. By Saturday afternoon, it was up to 101.7 so we were off to the emergency room at Stanford. When we arrived, her temp had spiked to 103.2. After three hours (the shortest time we ever spent there), we found that Adrienne's counts were good so we got to come back home. When you get chemo, your white count can drop dramatically, making you at risk for overwhelming infection. Since Adrienne's white count was good, she's not at risk so she doesn't need to be in the hospital. Before we went, we packed an overnight bag, our insurance that she wouldn't need to stay. It seems that if we don't plan to stay and don't pack a bag, that's when she's admitted. It might sound silly but so far it hasn't done us wrong.

We are looking forward to a quiet day at home today. Adrienne still isn't feeling well but her fevers are under control. Daniel is at football camp until tomorrow night. Now we just need to relax from all the excitement.

Tuesday, June 07, 2005

Tougher Chemo

Adrienne had her 9th chemo yesterday. About a half hour after the infusion of the first drug (gemcitabine) started, I noticed that it was running really slowly so I asked the nurse. Apparently, Adrienne's nurse practioner wrote the orders wrong so the chemo ran over one hour rather than the usual half hour. The day hospital nurse called the attending on call who said it was okay to run the chemo over one hour but after that, the drug loses its effectiveness. I sent a message last night to Adrienne's doc to let him know that I'm really unhappy with what happened. This is not the first time we've had problems with this nurse practioner, who often writes orders incorrectly, doesn't return phone calls, and so on. Over the years, Adrienne has had many nurse practioners and other professionals care for her, and we've never had a problem until this particular person, and now it seems to be one thing after another.

Adrienne is feeling particularly bad from yesterday's infusion, maybe because it ran over a longer time. She was very nauseated last night, needing Zofran, Benadryl, and Ativan to get the nausea under control. She feels pretty bad this morning too. Luckily, we rescheduled her finals so she has no exams today or tomorrow.

On Sunday, I did the San Diego Rock 'n Roll marathon. I'm tired but luckily my feet held up really well, with only a couple of small blisters. As I was getting ready to fly home yesterday morning, Daniel called on my cell phone with extreme stomach pain. He'd been to the doctor the previous Friday for continuing stomach pain and fatigue. His blood work this weekend was normal. He is having a few upper GI tests this week, but the doctor thinks this is stress related, real pain brought on by stress. Daniel is drinking Pepto like it's going out of style so hopefully this will resolve soon. He is supposed to go to football camp on Saturday and he is really looking forward to it.

Adrienne's graduation is this Friday. We are SOOOO excited.

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.

Thursday, April 28, 2005

A Different Referral

Early yesterday morning, I received an e-mail from Dr. Negrin, the head of bone marrow transplant at Stanford, saying that he would be seeing Adrienne. The previous day, I had been told that another doctor would see her. We now have an appointment Monday afternoon after we return from the Avenue of the Giants 1/2 marathon.

While we're not sure why there was a sudden change of plans, we can only assume that Adrienne's case is complex enough that they want the most experienced transplanter to work with her. Adrienne said she doesn't think she's had all that much treatment and doesn't understand what all the fuss is about. I wonder what she would consider to be a lot of treatment since she's maxed out the doses for virtually everything out there.

We found out that another girl that Adrienne has known since elementary school, Ashley, will be going to CMC, and she lives just about three blocks from here. They will be the only two from her high school to go to CMC and both are very excited. We received confirmation that Adrienne is enrolled and will begin orientation in late August. Adrienne is even considering a wilderness outdoor adventure (WOA) that the college sponsors for incoming freshmen. Of course, not being an outdoorsy person, she's considering the least dirty option, which is at Yosemite.

Daniel is very excited about his prom on Saturday. Last night, he put on his new shirt and tie (with his jeans) and put on a suit jacket of Curt's that's the same color as his suit, which is currently at the cleaners. The new shirt and tie look very smart. On Tuesday, we filled out all the papers and wrote a bunch of checks so Daniel can go to football camp this summer at UC Berkeley and play in the fall.

Tuesday, April 26, 2005

Frustrating Day

After a very long and frustrating series of phone calls, we finally got a referral to the Stanford Hospital bone marrow transplant service. Tomorrow, Wednesday, we should know when Adrienne's appointment is, hopefully next week. Our goal is to proceed with further treatment (either donor lymphocyte infusions or cytokine-induced killer cells) as soon as possible so any side effects can be treated before Adrienne goes away to college at the end of August. We want to ensure that nothing stands in the way of Adrienne going away.

This weekend, we are off to Humbolt for the Avenue of the Giants 1/2 marathon. Adrienne won't be doing the race but will greet all of the runners and walkers when they finish their event at the Team In Training table. She loves doing that kind of thing. We'll return home Monday afternoon.

Daniel has his junior prom this weekend. He decided just a few days ago to go "stag" so we've been running around getting his suit dry cleaned, a new shirt and tie, and so on. Since Adrienne and I won't be here Saturday night, he's going to dress up for us on Friday night so we can take pictures. He looks very handsome in his suit, as he does in whatever he wears.

Curt's nose looks amazingly good after having the skin cancer removed and skin grafts in its place. He needs to be extra careful in the sun from now on.

Saturday, April 23, 2005

New "Do"

Adrienne got a cute new haircut on Friday. This is the first time she's really had a cut since her hair started coming back in almost two years ago. Before that, she just got her bangs trimmed. It looks really good.

This has been a fairly uneventful week since Monday's chemo. Adrienne felt "yucky" until Thursday but now says she feels back to normal. She even went for a one hour walk this morning with minimal pain in her hip. She won't do the half marathon in Humbolt next weekend but she will come along to cheer the team on and help the coaches with whatever they need.

I've asked Dr. Negrin, the head of BMT at Stanford, to take Adrienne as a patient. No word back yet on whether that will work, as I've heard he isn't taking new patients but Adrienne is hardly new to transplant. Apparently the transplant doc at the children's hospital finally talked with him (after promising to do so a month ago) but never got back to me with a plan. We would like a doctor that is responsive and offers Adrienne some more alternatives.

Daniel had a "fun" day at traffic school today for making an illegal U-turn. He thinks he was the only one in the class that didn't have a speeding ticket. Two other kids from his high school were there.

Tonight is Passover at our house. It should be fun.

Tuesday, April 19, 2005

Chemo, Pain, and Some New Info

Adrienne got her chemo yesterday, which went fine. We finished quite late because the nurses became engaged trying to get an NG tube into a boy who struggled and was stronger than they were. We had to wait for labs and then for chemo. Adrienne's blood counts remain good so we've been able to stay on schedule. We rescheduled the next chemo for May 9 since Adrienne has AP exams the week of May 2 and wants to feel good for those.

The pain in Adrienne's hip isn't neuropathy and is probably something more structural. She's going to try a therapeutic dose of Naprosen for two weeks to see if that helps the problem. It probably won't help the pain in her feet but we'll deal with one thing at a time.

After Adrienne's chemo, we went to a Team In Training event where the speaker was the head of bone marrow transplant at Stanford, Dr. Robert Negrin. He is also a participant on the cycle team. Go Team! We got there late and missed his presentation, but were able to pull him aside and talk afterwards. We got some very interesting and useful information. He thinks Adrienne should have DLIs, explaining that the potential benefits outweigh the risks. Since she has full donor chimerism and it has been two years since her transplant, the risks of GVHD are very low and likely to be chronic in nature and easily treated. There is also a clinical trial of "cytokine-induced killer cells" at Stanford that Adrienne would likely qualify for. I've asked Adrienne's transplant doctor to talk with this doctor. She hasn't been very helpful in this regard and if we don't hear back by Friday, we'll make an appointment to see Dr. Negrin at Stanford.

Sunday, April 17, 2005

Hip Pain

I asked Adrienne to really think about the type and intensity of the pain in her hip. After walking on Wednesday night, she says the pain feels like that in her feet, which we've assumed is peripheral neuropathy. Adrienne's problems with peripheral neuropathy began after her second transplant while in Seattle. The pain and weakness were so severe then that she was unable to walk. Physical therapy and medications helped resolve the problem, but the pain in her feet has continued when she does any sustained walking (like for marathons and half marathons).

One of Adrienne's chemos, Vinorelbine, causes peripheral neuropathy. That drug, combined with the damage from previous chemos, seems to be causing the current problem. Adrienne took Neurontin for this problem a couple of years ago and it was very effective, so she's going to try it again. We'll get the prescription on Monday when she goes in for her chemo.

Adrienne and Daniel had a very good visit to Santa Barbara to see their dad this week. They said the weather was perfect. Next time, I think Daniel will take his friend Brian because they really like to pal around together.

We sent the initial enrollment paperwork into Claremont McKenna this week. Now Adrienne needs to complete the forms to turn down the other schools. She is looking forward to her senior prom and graduation in the next couple of months.

Wednesday, April 13, 2005

Another Quiet Week

Actually, a really, really quiet week. Adrienne and Daniel are at their dad's house in Santa Barbara but they will be home around dinner time on Thursday. They are having a good time but there isn't a whole lot to do down there. Adrienne says she has a lot of homework, mostly reading, that she hasn't gotten to but hopes to work the next few days.

Adrienne has been training with the Santa Barbara TNT team. Her dad walked with her for 2.25 hours on Saturday and she's off to their track training tonight. She says she'll miss the pilates since they don't do them there. We're very lucky to have such a great group of coaches up here that focus on core strengthening. Adrienne's hips continue to hurt even though her xray last week didn't show any problem. She might need an MRI afterall, but we'd prefer to wait for awhile.

Curt had his skin cancer removed from his nose and looks like he was in a bad car accident. His mom is having her other hip replaced in a couple of weeks. I will sure be glad when everyone is healthy again.

Thursday, April 07, 2005

No Hives!

I hope I'm not celebrating too soon, but Adrienne hasn't gotten any hives from her chemo on Monday. She took half the premeds before the infusion and no meds since, and all is well. Except for being tired, she's doing great. She has no hospital appointments next week so she and Daniel will visit their dad while they are off school for spring break. The next chemo is scheduled for April 18.

Curt went to the dermatologist today over some odd looking "things" on his nose. Turns out he has skin cancer in two locations and a number of precancerous growths, which will all be removed next week. He also has inguinal hernias but we'll wait to see if the hernias repair themselves since he has no pain. That's what happens when you marry an old guy.

Monday, April 04, 2005

Good Report from the Doc

Thankfully, Adrienne's scans from last week look really good. The PET was negative. The CT shows some very tiny lymph nodes (less than 5 mm) with no uptake. Uptake indicates active disease, and she shows none. The plan right now is to continue chemo for another two months and then watch and wait. If Adrienne relapses more than a year out, we can even try this chemo again. There are several promising treatments on the horizon but we will wait until they are more proven and the side effects are known, particularly in young people.

Claremont McKenna College it is!!! After all the hard work and nervous waiting, Adrienne has decided that CMC is her choice. With the McKenna Achievement Scholarship and her National Merit Scholarship, they've made the offer hard to refuse. Adrienne loved it during her visit there and felt that she would be happy there. We're all so excited for her.

Daniel has been sick with a cold but is feeling better this afternoon. Curt seems to be over his jetlag, enjoying the baking I did while he was away. Adrienne and Daniel are off to visit their dad in Santa Barbara on Friday, leaving a quiet house. Hmmm.

Sunday, April 03, 2005

Claremont McKenna

Sometimes, all the signs point in one direction and it seems to be Claremont McKenna. Adrienne received her acceptance on Friday along with notification that she has been awarded the McKenna Achievement Scholarship. Even with that scholarship and the National Merit scholarship, a private school education is very expensive so we are scrambling to find the funds. Adrienne has worked so hard and has been through so much to achieve this and we all want her to have the best. We are keeping our fingers crossed that her scans last week show that she is in remission so she can go away to school. We'll know tomorrow.

I thought you might like to read Adrienne's main college essay written to the prompt: "Evaluate a significant experience, achievement, risk you have taken, or ethical dilemma you have faced and its impact on you."

“We wanted you to get some exercise. We didn’t mean you should train for a marathon!” So said my nurse practitioner when I told her I had signed up with Team In Training to walk the Honolulu marathon. I’ve always been motivated to do the best I can at everything I take on, and Team In Training gave me the perfect opportunity to stay active while supporting a cause about which I’m passionate. I’ve had two bone marrow transplants for Hodgkin’s Disease during high school. My experience has made me think about my life in a way I never thought about before, and I’m trying to improve other patients’ lives.

My involvement with The Leukemia & Lymphoma Society, especially the research I help fund, has a direct impact on people’s lives. The fundraising is critical because people are still dying from blood-related cancers. My own grandfather suffered a painful death at the age of sixty-six to Non-Hodgkin’s Lymphoma, and some of my young friends died because the treatments currently in use didn’t stop their diseases from growing. The treatments that exist today often cure the cancer but kill people later. I must endure long-term effects from my own cancer treatment, and I know that the funds I raise and resulting research will help others avoid what I’ve been through.

I know what it’s like to need help and not get it. After lunch at school recently, a mentally disabled girl was stranded on some stairs in the stampede of students rushing to their classes. Instead of ignoring her like the others did, I stopped and helped her up. A friend who was with me said she admired me and confessed that she would not have stopped if I hadn’t. I’ve been in that situation, and I appreciated it when someone helped me.

I understand how it feels to have people stare because you look different, or to shy away because they think they might catch something. My mom often tells the story, “Days after Adrienne’s first transplant, we were looking at the new babies through a window to the nursery. Adrienne was wearing her mask to protect her from infection. A young mother looked at her in horror and rushed away, covering her baby because she thought he might catch something when the actual purpose of the mask was to protect Adrienne.” Because of instances like this one, I always stop to think about other people’s feelings. I now understand and have compassion for people and the challenges they face.

Cancer doesn’t define me as a person but it has certainly affected my view of the world, the role I’ve chosen to help others, and the way I interact with others. I’m grateful that I’m healthy and don’t need help anymore. Now I can help others in a way I could not have foreseen.