Holding Tight

Last Friday, finally, MSK received most of Adrienne's records so they confirmed her appointment for January 2. I'm still waiting for a CD of the last CT scan plus MSK is still waiting for Adrienne's chemo records from Stanford, but they have enough to move ahead. We've been through this before with Adrienne's treatment in Seattle and the move to City of Hope and it's always a big hassle. Adrienne and I have been talking about possible treatments and she's been deciding what she's willing to do. The big priority now is to keep her in school while controlling her disease.

We had a nice but quiet Christmas and Chanukah. We're still working on the house so we decided to forego presents. I've been buying Adrienne some things she needs, like a new cell phone and boots, and we'll do a bit of shopping in New York at the after Christmas sales.

Today, Adrienne is off to see her dad, aunt and uncle, and cousin in southern California. The last time she saw her cousin, he was 5 and it was right after her second transplant. She had very little hair and was on high dose prednisone. She wants to see everyone since she is looking like herself and very healthy.

Good News, Bad News

UPDATE on 12/20: Adrienne's doctors have agreed that we should wait for the visit to MSK before starting treatment. Everyone wants to start something as soon as possible but we want to pick the best option. Adrienne is feeling well with no pain or other Hodgkin's Disease symptoms but she started a higher dose of the Coreg and that is making her quite tired.

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As our friend Erika says, it usually means bad news but they say something good so the bad news doesn't seem quite so bad. So for the good news, the largest tumor is only 1.5 cm. For the bad news, there's four separate locations: one in the lung (1.3 cm), one just above the liver (1.2 cm), one in the spleen (1.3 cm), and one in the bone near the shoulder (1.5 cm). I haven't spoken to the doctor and we don't have a treatment plan yet. Adrienne's appointment at Memorial Sloan Kettering is on January 2 with us flying out on New Years Day. We may want to start her on chemo to at least try to get this under control before then but I don't know yet.

Sorry this has taken so long to post. Adrienne got a CD after the PET scan on Tuesday and overnighted it to her doctor. But, it was the wrong format and it took another two days to get the right CD and the report to him. I only have the report.

I'm sure Adrienne would like some positive thoughts so please leave a comment for her.

Not Much to Report

Adrienne has her PET scan tomorrow morning but we aren't expecting it will show anything that isn't on the CT scan. She had disease in her spleen when she was originally diagnosed and with several relapses so this is nothing new. The spleen is sort of like a really big lymph node and HD likes to hang out there. Up until the early 90s, they routinely removed the spleen but with improved imaging, they stopped that very difficult surgery.

We have an appointment at Memorial Sloan Kettering on January 2. Dr. Owen O'Conner is seeing Adrienne on his "off clinic" day, which we really appreciate, and we hear he's very nice (not a requirement but still nice to have). I've been busy getting all of Adrienne's records to them as well as some biopsy slides. This is not an easy task since Adrienne's been treated at three different centers and has had four node biopsies. This week is the big annual American Society of Clinical Oncology conference so none of the doctors are around but the rest of the staff has been very helpful.

Adrienne is busy finishing up the semester and she seems able to put her health issues aside for a few days. She always amazes me. She's concerned about not starting treatment right away but we want to know all our options and do the right thing.

Here we go again...

Adrienne had her CT yesterday and, unfortunately, the news is not what we had hoped for. She has a 1.4 cm x 1.9 cm node in her right lung, as well as a questionable area in her spleen. Yes, this is the same place that showed on the August PET scan that appeared to be resolved on the CT scan in September. The next step is another PET scan. City of Hope doesn't have an opening until December 18, after Adrienne is supposed to finish the semester, but they found an outside imaging service to do it on Tuesday, December 12. We'll probably have to wait a couple of days for the complete results but that's okay since she won't start treatment until the new year.

There are some treatment options that her doctor at COH has suggested including SAHA and tomotherapy radiation. We've heard that SAHA is very difficult and the trial may not be open again yet. Tomotherapy is only an option if there is one spot and we are concerned about radiation to the lung since Adrienne has some fibrosis resulting from the pneumonitis she got during her first transplant.

So, we are looking into some other clinical trials. Memorial Sloan Kettering has a doctor conducting a number of trials for recurrent Hodgkin's Disease so we are going to New York for another opinion in January. MSK wasn't high on our list because they don't participate in Children's Oncology Group and they conduct clinical studies on their own, but we need to find out what is best for Adrienne and we hear wonderful things about this doctor. Our goal is to find a treatment that will allow her to stay in school while keeping her disease under control.

Adrienne has exams next week so she is trying to stay focused on that. It seems like she never gets a break during her vacations, but she's looking forward to a few days in New York in the snow. Yes, I promised her a nice dinner and a show when we're there.

December 3, 1996

Ten years ago today, we got the awful news that Adrienne had Hodgkin's Disease. Two weeks prior, Adrienne showed me some lumps on her shoulder and, after some tests and ruling out tuberculosis and cat scratch fever, we got the confirmation. I'll never forget the doctor coming in with tears in his eyes to tell us, "I have good news and bad news. The bad news is that Adrienne has Hodgkin's Disease. The good news is that in a year, this will all be over." Little did anyone know that wouldn't be the case. Adrienne was one of a handful of girls in the US who are diagnosed with HD before the age of 10 and today, she is one of a handful who have survived ten years with multiple relapses. We are so thankful that she continues to beat the odds.

Last Wednesday, Adrienne called and asked me to go with her to her doctors' appointments last Friday. She's under a lot of stress at school as the end of the semester approaches and she really didn't want to go alone after all. I flew to Ontario on Friday and we went together. All of her checkups were great and her blood counts continue to be good. She looks wonderful, very healthy and happy. The last hurdle for awhile is her CT scan this Wednesday. The doctor will be out of town so we can get results from the nurse. We are counting on good results, but if not, Adrienne will go ahead with the SAHA trial. We've heard about a few people who've had very bad fatigue on the drug but the results are very promising. I'll post when I learn more later in the week. Keep your fingers crossed for more good news.

CT on Friday (oops, Wednesday(

As Adrienne nears the end of the semester and final exams, she is very busy. She's had an appointment to see her oncologist on Friday for some time but she heard from him yesterday that he wants a CT before he sees her. We knew she needed to have one soon but she didn't expect to squeeze it in such a short time. The only time Adrienne has available is Friday before her appointment. We appreciate that he, like her doc at Stanford, reviews her scans quickly and lets us know what's going on. I think it's awful how many doctors make their patients wait, agonizing over what might or might not be. (NEW: Right after I posted this, the hospital called to schedule Adrienne's appointment and they don't have a convenient time for her until next Wednesday.)

I worry about Adrienne going to some of these appointments on her own but she wants to so I'll respect her wishes. She says she's up to anything and I trust her judgement.

Adrienne will also see the cardiologist and endocrinologist on Friday. She is feeling much better on the thyroid medication but she has to cut the pill, so she's going to see if she can bump the dose up a bit to get to a whole pill (she takes 62.5 mcg now and there's a 75 mcg pill). She isn't having any side effects like nervousness so hopefully that will work.

Happy Thanksgiving

There isn't much news to report this week. Adrienne is feeling well, though she still has some days when she's very tired, probably because she burns the candle at both ends. She decided to skip Wednesday classes and head to her dad's a day early for Thanksgiving. I'm happy that she'll miss much of the traffic and get an extra day to sleep in. He only lives about an hour from CMC and some old friends will be there.

We have a lot to be thankful for this year. Adrienne and Daniel are both doing well. Our move to Nevada has gone well and we love our new home. Even the dogs are happy and love their daily three mile walk around our neighborhood. We hope this continues for awhile.

Doing Well

A LITTLE UPDATE: The costs of Adrienne's treatments for the last ten years are bindbogglng. Her first year of chemo and radiation cost $150,000. The first transplant cost $200,000 and the second one almost $500,000. Radiation costs $8,000 a week and she's had 20 weeks of radiation. The tomotherapy she had last year cost more than twice that. Five days of chemo costs $25,000. This doesn't count the many surgeries, doctor's visits, procedures, blood tests, drugs, and so on. I've spent countless hours on the phone with insurance companies and billing departments over the years and we've been very lucky to have great insurance. So today, I got a call from Stanford saying that they were getting ready to turn Adrienne's account over to a collection agency. I haven't received a bill but they obviously had our new address and phone number. I was pretty upset about the phone call and returned it right away. Guess how much we owe? $48. They're sending me a bill.

Adrienne is like a new woman. :o) Not only is she less fatigued and more energetic, but she is also much happier. I can hear it in her voice when we talk on the phone. It makes us so happy to know she's feeling better and more able to do the many activities in her schedule. She takes a full load of classes, works at the Kravis Leadership Institute, and is Vice President of Straight But Not Narrow. In high school, she wasn't really able to participate in activities so now she is getting involved in whatever interests her. Sometimes my head spins when I hear about everything she's doing, but she sounds so happy lately.

Adrienne's next checkups are on December 1. I'm sure scans will follow soon after that. She wants to go to the doctor on her own now. I'm always concerned that she'll get some bad news without someone being with her but she really wants to do this without a parent. She usually calls me right after her appointment or in between to let me know how things went. I often wonder what we did before cell phones.

Started Thyroid Medication

Adrienne started the thyroid medication last week and she says she feels like a new person. She no longer feels like she wants to go right back to bed after waking up and she doesn't need a nap every day. I don't think we all realized how much this was affecting her until now.

Since the fatigue problem seems to be resolved, Adrienne should be able to increase the dose of the Coreg. When she was diagnosed almost three years ago with cardiomyopathy, the talk was mostly about when she might need a heart transplant. Now it seems like they can manage her indefinitely with medication. This is certainly good news. Our hope is that stem cell therapies will come to fruition in the next few years so Adrienne's heart can actually replace the cells that the chemo destroyed.

As usual, Adrienne is busy planning her classes for next semester, her summer, and the following semester abroad. She definitely wants to go to Prague and her doctor thinks we can make this work.

And now, the third (and final) way to prepare for your first mammogram:

Freeze two metal bookends overnight. Strip to the waist. Invite a stranger into the room. Press the bookends against one of your breasts. Smash the bookends together as hard as you can. Set an appointment with the stranger to meet next week and do it again!!

Cardiology and Thyroid

Adrienne finally had the repeat thyroid test on Friday and, yesterday, the endocrinologist told her to start the thyroid medication. I don't know what her numbers were yet but I know that she's been incredibly tired and we hope this will help. She frequently takes a nap in the afternoon and drags much of the rest of the day.

Adrienne saw the cardiologist on Friday and he really wants her to stay on the Coreg. He says the Coreg is much more important long term than the Enalapril and he hopes she can tolerate it. The plan was to start the thyroid supplement to ease the tiredness and then increase the Coreg dose. Adrienne is supposed to call him on Wednesday or Thursday after she starts the thyroid medication to decide what to do next.

Adrienne now has a whole five weeks off from doctor and clinic visits. Yyyeeeaaahhh. Her next appointments are December 1.

This Friday, Adrienne will be giving the honoree speech at the Team In Training pasta dinner for the Santa Barbara 1/2 Marathon. She is excited and nervous at the same time, and we're very proud that she's going to do this. She's going to talk about how new treatments have been there every time she needed them and how important cancer research is to keep those advances coming.

I got quite a few messages about the mammogram joke (glad you enjoyed it), so here's another way to prepare:

Open your refrigerator door and insert one breast between the door and the main box. Have one of your strongest friends slam the door shut and lean on the door for good measure. Hold that position for five seconds (while you hold your breath). Repeat again, in case the first time wasn’t effective enough.

Feeling Better

I wrote last week about Adrienne fighting a cough. She saw her oncologist for a regular visit last Friday after some headaches and vertigo the previous days. The doctor prescribed antibiotics to prevent bronchitis or a sinus infection, a relatively common occurence with a cold for her. The doctor also mentioned that he couldn't rule out Hodgkin's Diseaes in the brain. Huh? When Adrienne called to tell me, I wasn't even sure what to say but she was fine with this news. Since then, she hasn't had any more headaches or vertigo so there appears to be nothing worry about.

Adrienne sees the cardiologist on Friday and we hope to change her medications so she feels better. She takes a nap almost every afternoon and she doesn't like feeling tired all the time. He is out of town until Friday so we won't be able to talk until then.

Otherwise, things are going well. Adrienne is doing well in school and in her job, and is busy planning for next semester (already). She is definitely somebody who likes to have a plan.

The Chosen Mothers

Most women become a mother by accident, some by choice and a few by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over earth selecting, His instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

Finally, He passes a name to an angel and says, “Give her a child with illness” the angel is curious, “Why this one, God? She’s so happy.”

“Exactly,” smiles God, “Could I give a child with disease a mother who does not know laughter? That would be cruel”

“But, does she have patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it.”

“I watched her today,” said God, “She has that feeling of self- independence that is so rare and necessary in a mother. You see, the child I’m going to give her has its own world. She has to make it live in her world and that’s not going to be easy.”

“But Lord, I don’t think she believes in you” said the angel.

“No matter, I can fix that. This one is perfect. She has just enough selfishness”
The angel gasps, “Selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see…. ignorance, cruelty, prejudice…. And allow her to rise about them.”

“And what about her patron saint” asks the angel, his pen poised in mid-air. God smile and say’s … “A mirror will suffice”

Back to CMC

Adrienne went back to college yesterday. She had planned to return on Monday night but decided to stay to finish a paper. We're glad she did. We had a nice weekend and she enjoyed sleeping in her own soft, comfy bed. Our new neighbors have a couple of dogs including a 7-month old puppy and Adrienne got to meet them.

Adrienne is fighting a cough and some laryngitis. Since the radiation to her throat last year, she loses her voice very easily, especially when she's tired. A cough is always concerning so hopefully this will pass quickly. I'm happy that she'll see her oncologist on Friday to check out the cough and also to have her thyroid rechecked.

Since starting the Coreg for her heart, Adrienne's fatigue has been noticeably worse. I mentioned this to our case nurse from the insurance company, who discussed it with her medical director. He suggested that Adrienne discontinue the Coreg and increase the dose of the Enalapril. Adrienne sees the cardiologist next week and hopefully we can get her a better mix of meds so she feels better.

I mentioned last week that Adrienne needs to start breast screening. I've read that mammograms aren't effective for younger women because they have denser breast tissue than older women so Adrienne will probably need to have a yearly MRI (a one hour painless procedure) rather than a mammogram (a 15 minute uncomfortable procedure). Here's my favorite description of how to prepare for a mammogram:

Visit your garage at 3 am when the temperature of the cement floor is just perfect. Take off your clothes and lie comfortably on the floor with one breast wedged under the rear tire of the car. Ask a friend to slowly back the car up until your breast is sufficiently flattened and chilled. Turn over and repeat for the other breast.

When Your World Stops

Adrienne is doing well right now and won't see any more doctors until the end of October when she sees her oncologist and cardiologist, and gets a bone density scan and thyroid test. Since she takes hormones for ovarian failure, she is apparently at risk for endometrial cancer so she needs to be checked for that at some point, as well as for breast cancer since it's been ten years since she received her first round of radiation to the chest. As they say, cancer is the gift that keeps on giving.

One day last fall, when Adrienne was waiting for her ride after her radiation treatment, she called me, very upset. A family in the waiting area with her had just received bad news and they were all crying. It brought back all the times we had received similar news and the awful feeling that the world has completely stopped. We often hear that every so many minutes, someone is diagnosed with cancer or some other horrible disease and we feel bad, but it's hard to put yourself in the position of the person who just received this news. Their world, for that moment or some period of time, comes to a complete stop. The rest of the world goes on normally, working, eating dinner with their family, visiting with their friends, simply living their life. Sometimes when I'm sitting in a restaurant, with all the people talking and laughing and having a good time, I stop for a moment to think about the people whose world stopped that day.

For now, our world is revolving quite well and we hope it stays that way for awhile. Starting Friday, Adrienne has a few days off of school so she will be coming home with a couple of girlfriends. We can't wait to see her.

What is remission?

In just a few weeks, it will be 10 years since Adrienne was diagnosed with Hodgkin's Disease. Since then, she's had quite a few remissions, the longest was more more than three years and the shortest was just a few months. We've learned that "remission" means that the disease doesn't show on scans but it doesn't mean that Adrienne is cured. It means that we have a time without worry until the next surprise greets us.

Lately I've been thinking about what 10 years has meant to us. For Adrienne, it's been 16 different chemos in six different protocols, over 100 days of radiation, an autologous stem cell transplant, an allogenic stem cell transplant, graft vs. host disease, nine surgeries, tons of procedures, and too many days inpatient and outpatient to count. Long term, she has cardiomyopathy, restrictive lung disease, avascular necrosis, ovarian failure, and now thyroid failure. Yet, she still lives a relatively normal life as a college coed with a full load of classes, a job, and plenty of social activities.

For us as parents, it's meant many tears and countless hours of worry. We've spent weeks at the computer trying to learn about treatments that might help, talking with doctors all over the world, and simply praying for a cure. And so often, I remind myself how lucky we are to have met so many wonderful people, doctors and nurses, and patients and their families. People ask me all the time how I do it, how do I deal with having a child with cancer. My response is always, "we do what we have to do." I wouldn't change anything just knowing Adrienne is still here with us.

Some Good News

After reviewing Adrienne's CT last week and comparing it with scans in August, the doctors deduced that the node in her chest is smaller now and declared her in remission. In fact, they now believe that the node was not Hodgkin's. YYYEEEAAAHHH. Our insurance approved the trial just as everyone decided that she doesn't need it right now. We all know that the Hodgkin's will return at some point, but for now, we're just going to enjoy this remission.

This exciting news comes as Adrienne is looking at study abroad programs for her junior year. She has been somewhat overwhelmed with all the choices available to her. She has to figure out how each program fits with her academic requirements and personal goals. She still has plenty of time to decide but she likes having some direction and purpose. She spoke with her doctor about the options and he is happy to let her go some places that I wasn't so sure about, even to Prague.

Adrienne saw an endocrinologist last week and is now looking forward to some time away from doctors and hospitals. She needs a DEXA scan of her bones and a repeat thyroid test, but those can wait a few weeks. We are looking forward to her fall break in mid-October when she'll come to LV with a few friends from school.

Almost There

Adrienne finished up the last of the tests for the clinical trial. The good news is that her CT scan was normal and nothing is growing. In August, she had a 4 mm node, which is considered normal for most people, but for her, we know it isn't. Her oncologist still wants to move ahead with the trial as he says "we may have an opportunity to hit the tumor when its quantity is minimal." Now we are just waiting for insurance approval. We had asked for an expedited review but they won't do that for a clinical trial. This is the first time we've been through this, but they tell us it usually takes a week. Hopefully, Adrienne can start the drug on Wednesday as planned.

Otherwise, Adrienne is feeling well. She is settled in her dorm, though she continues to rearrange the furniture, and her classes are going well. The stress seems to be under better control now. The biggest project right now is for her to figure out what she wants to do for study abroad. I only have one requirement and that is that she can get good healthcare wherever she goes. While we complain often about our healthcare system and its costs, its still better than most places in the world. We know that Adrienne has always had the best of the best.

Hurry Up!

All of a sudden, the schedule on the clinical trial has moved up. We found out yesterday that they have almost recruited enough patients for this phase and may close it at any time. Adrienne and two other patients at City of Hope are rushing to finish the tests and get insurance approval. If they don't get it all finished in time, she will have one to two months until they start recruiting again.

So, Adrienne has an echo today, her bone marrow biopsy and aspiration on Friday, and a CT scan next week. The insurance won't review the clinical trial request until Adrienne has signed the consent, which will happen on Friday before her procedure. We are asking for an "expedited review" to get this all done quickly. The drug is paid for by the National Cancer Institute but our insurance pays for all of the extra testing and doctor's visits. We are hoping Adrienne can start treatment by the end of next week.

Adrienne has been very tired lately. Her thyroid tests last week were mostly normal so it must be the changes in the cardiac medication. That plus the fact that she doesn't get enough sleep and burns the candle at both ends. She's looking at all the activities she has on her plate and is trying to minimize a few, including the yoga, which she's going to drop.

Getting Ready for Clinical Trial

Adrienne saw her oncologist at City of Hope on Friday. He is hoping she can start the clinical trial by September 24. The only big issue is getting the tissue biopsy from her hip last May from Stanford to City of Hope by that date. As I understand it, they will study her tumor and follow how the new drug, SAHA, affects the genetics of the tumor. If we can't get it by that date, Adrienne will need new scans before starting the drug and our insurance company may not want to approve them so quickly after her August 10 scans. (Gotta love those insurance companies.) To prepare for the trial, Adrienne will have a bone marrow biospy next Friday. She isn't particularly excited about this prospect but is eager to begin treatment and get this thing under control. Since she will be sedated for the procedure, a friend from school will take her to the appointment.

Adrienne's school is going well, though she has been very fatigued, probably due to the change in her cardiac medication. She is also having a complete endocrinology checkup in the meantime. She is working at the Kravis Institute again and has started her yoga classes. The yoga is a bit difficult so she'll just see how it goes. Adrienne is also now the Vice President of Straight But Not Narrow.

Curt and I just got back from our little trip to Santa Fe and Sedona. The higlight of the trip was definitely a helicopter ride around Sedona and through the Grand Canyon. I've been fortunate to see some beautiful scenery but I've never seen anything as beautiful as this area of the United States. It was truly astounding.

Not Much News

Curt and I are going to take a few days off and drive to Sedona and Santa Fe. Since we haven't spent much time in the southwest, we thought it would be a nice way to see some scenery, eat some good food, and shop for knick knacks for the house. It also helps us avoid the airport.

I spoke to my sister last night who just returned from Europe. They landed in London the morning of the arrests and spent an hour on the tarmac waiting for a gate. On the following Sunday, they were supposed to fly on British Airways to Copenhagen for a cruise in the Baltic Sea. British Airways wasn't answering their phones and the police wouldn't even let people into the airport. Needless to say, they never made it to Copenhagen and wound up meeting the ship two days later in Stockholm with the help of trains and flights on another airline.

Adrienne started classes this week and is settling in nicely. She is really happy that she doesn't have Friday classes this semester. Next week, she starts her job as an intern with the Kravis Leadership Institute as well as a yoga class. Her cardiologist at LPCH didn't want her to do yoga but her current cardiologist says it's fine as long as she doesn't overdo it. Adrienne is the least flexible person I've ever seen so hopefully the yoga will help her become more "bendy." This weekend is the big "601" party where dry week ends at 6:01 pm on Saturday. Adrienne and her friends are really looking forward to it. Don't you miss those college days?

Back in Claremont

Yesterday, we awoke early and drove to Claremont. The traffic wasn't at all bad so we arrived at City of Hope in plenty of time. Unfortunately, the machine that processes the blood was having trouble so we waited a really long time to see Adrienne's oncologist. We discussed her scans and, given her history, everyone believes that the spot in her chest is Hodgkin's Disease. Thankfully, it is very small. The options he presented were to watch and wait, treat with gemcitabine, or proceed with the clinical trial. Adrienne and I both rejected the gemcitabine since she had progressive disease the last time she got it and it makes her feel pretty crummy. We decided to proceed with qualifying for the clinical trial. Adrienne will go back in two weeks to get whatever tests she needs and we'll follow up with scans in October. She may start the trial before that or after her scans in October. We all feel pretty good about the decision. The trial uses a new drug called SAHA, which works to modify the genetics of the tumor. It's a new class of drug and is not like chemo, and therefore, the side effects are not as severe.

The doctor commented on how steady Adrienne's health has been. Her weight was only .1 kilo different than last April, her heart rate was 4 beats per minute different, and her blood counts were almost identical. She has been quite tired lately and the doctor thought it was time for her to see an endocrinologist so she will do that in two weeks when she returns to qualify for the trial. It's possible that her thyroid isn't functioning right due to her radiation.

Adrienne also saw her cardiologist on Friday. He was pleased to see her doing so well. He is upping the amount of Coreg she takes to get her to a therapeutic level. He always comments on how small she is so he likes to increase her meds very, very slowly, which is fine with us. The dose of Enalapril will stay the same. He also said she could do some light yoga though he cautioned against too much cardio which could stress her heart.

Adrienne moves into the dorms tomorrow, Sunday, and starts classes on Tuesday. She is really happy to be back at CMC with her friends.

A Bit More Info

We are making some progress, slowly but surely. City of Hope found the CD of Adrienne's scans and they are reviewing them now. The doctors there are discussing her case and will have a number of options for us when we visit on Friday. It appears that Adrienne qualifies for a Phase II clinical trial at City of Hope with an oral chemo called SAHA. There are other treatments available too. Our goal is to find something with the least amount of side effects and doctor visits so she can continue at college while keeping her disease under control.

Adrienne is busy packing and getting ready to go back to college. We'll drive to LA on Friday and move her into the dorms on Sunday morning. I'm hoping to be on the road by about noon on Sunday to beat the traffic since the LA-to-Las Vegas corridor is a busy one. We are actually a lot closer to her here in Las Vegas than we were in Northern California so I'm looking forward to the shorter drives.

Adrienne's Birthday

Today is Adrienne's 19th birthday. I can hardly believe it, mostly because I can't imagine that I have a 19 year old daughter and a son who will be 18 tomorrow. I really don't feel that old.

We don't have much news to report. I sent a CD with Adrienne's scans to City of Hope last Friday and they somehow misplaced it. They found it yesterday and are now discussing next steps. We'll see Adrienne's oncologist next Friday as we head back to Claremont McKenna. Adrienne will also see her cardiologist that day. We're very pleased that her cardiac function has improved and that the side effects of the meds are almost nonexistent. Hopefully we'll have a plan for managing her Hodgkin's Disease after that visit. Adrienne is feeling fine but this whole thing weighs heavily on all of us. I can only imagine a day when none of us has to worry about cancer.

Warm PET Scan

We were hoping for a totally clean PET scan yesterday. What we got was termed a "warm" PET scan. The disease in Adrienne's hip has resolved but there is a 4 mm node with moderate uptake in the chest. This is too small to diagnose, but having been down this road before, we can be pretty sure that this is Hodgkin's Disease that will grow larger over time. Adrienne's doctor at Stanford advised us to wait four months and repeat the scans. Adrienne doesn't feel comfortable waiting that long (nor do we) so we are sending the scans to City of Hope for a second opinion. We aren't sure what kind of treatment would be appropriate but we are looking at chemos (hopefully oral) that have minimal side effects to keep her disease under control. Our wish is that some of the research with monoclonal antibodies and radioimmunotherapy will come to fruition in the next year or two.

Besides the doctor visits, we had a good trip back to the Bay Area visiting with friends and even seeing my sister before her family's trip to London (they arrived safely the morning of the arrests). Even with yesterday's events in London, our flight home was only delayed by 30 minutes and the security line at the airport was very short. We had taken carry on bags but checked them for the trip home because, of course, we had shampoo, creams, and the like. It was kind of funny being at baggage claim with three times as many people as usual. We saw several very small bags (probably toiletry kits and the like) coming off the turnstyle looking very out of place.

Visit to the Bay Area

Adrienne is scheduled for her PET/CT on Thursday at Stanford, with checkups with her oncologist and radiation oncologist. She doesn't want to have the tests done at City of Hope anymore because they don't have the combined PET/CT like they do at Stanford. She has to go for one visit for the CT (drinking horrible stuff for 24 hours before) and then back for the PET. Since we know that she's PET-positive and that her last relapse did not show on her CT, it seems that the combined PET/CT is the best thing. We're thinking that scans every four months is probably a good schedule.

Adrienne's doctor at City of Hope has suggested a new drug called SAHA. It is in Phase II clinical trials right now for Hodgkin's Disease and has been very effective for other tumors. It's an oral chemo with minimal side effects so we'll discuss that along with some other treatments in the event that Adrienne's scans show that she's not in remission.

Adrienne had a good visit to St. Louis and enjoyed seeing her friend. She's never been to the midwest before so it turned out to be quite a cultural experience. Toasted ravioli was high on her list of new experiences, but sushi is still preferred when possible.

The house is coming along nicely. We actually have a few chairs now and some TV, though our satellite Dish Network is giving us a real hassle and getting service is tough in this area. We've heard that cable isn't good around here so that's why we decided to go with satellite. Hopefully everything will be working soon.

Doing Well, Waiting for Scans

Adrienne seems to be doing very well. On Tuesday, she flew off to St. Louis to see her best friend from college. She's having a really good time so far. She returns on August 5 and then we're off to Stanford on August 10 for a PET/CT and checkup. As you can imagine, these scans always make us nervous and the whole experience is a roller coaster. She had clear scans last November and new pain in March with a recurrence. We feel like we get a little reprieve but never a break, and there's always something to worry about. We are lucky that her cancer has grown slower since her allo transplant because that has given us time to find treatments that work. Sometimes it's hard to imagine that Adrienne has had cancer for more than half her young life. This December will be 10 years since her original diagnosis and she had symptoms for over a year before that.

The move is going well but there's never enough time to do what needs to be done each day. It seems that everytime we fix one problem, another one arises. The movers left marks on the new carpet, the painters messed up the draperies, and we still don't have TV. It will probably be a few weeks before we are truly moved in. :o) Otherwise, we love the house and hope to make it feel like a home very soon.

We're Home, Almost

We got back from Spain last night after a VERY long day of travel. We had many hours on the plane and a five hour layover in Miami. We're pretty exhausted today but there's much to be done, so sleeping in is out of the question.

The trip was great. We started in Madrid for a few days to get over jetlag, eat tapas, and do a bit of sightseeing. Then we were off to Segovia to see the ancient Roman acqueduct and try the suckling pig (Adrienne, not me). After that, we went to Salamanca, a beautiful city with a large, very busy Plaza Mayor. After a night in the medevil city of Trujillo, we went to Seville for 4 days. Wow, was it hot there but we had a great visit to Jerez to see the Andalusian horse show and a wonderful night of Flamenco, along with lots of sightseeing and some shopping for good measure. Then we were back to Madrid for our trip home. We all had a great time.

Now we're back to business with the move. The house is being painted and new carpet goes in tomorrow. We actually move in on Friday. Today, we were supposed to get phones, DSL, and satellite TV. I suppose one out of three (phones) isn't too bad. I guess it's all just par for the course and everything will get sorted out in time.

Adrienne is doing very well and was able to keep up during the trip. She still has some hip pain but hopefully this will resolve soon. Her skin was quite irritated and painful from the radiation but it is peeling now and feeling much better. Overall, we're very pleased.

Moving

I haven't been posting too regularly and this will be the last one for several weeks. We moved out of our house yesterday and now are relegated to hotel living until we move in to our new house on July 21. It's a good thing that there's a trip to Spain in the middle of it. :)

Adrienne is doing well with her radiation though she sleeps much of the day. Her last treatment is Friday (tomorrow). The pain seemed to be getting better last week but now it's worse again. The radiation oncologist didn't expect it to get better that soon in any event, and Adrienne plans to take her pain meds to Spain. We'll take taxis or drive her door to door if necessary, and she can take naps with the other Spaniards during afternoon siesta.

Adrienne is looking forward to tasting the local foods and even having a bit of sherry since the drinking age in Spain is 18. Her grandma is one of those people who likes to stare at a painting, to take it all in, while Adrienne and I like to take a moment and move on, kind of like "speed museum" (think "speed dating"). That should be interesting. Otherwise, we all like to do pretty much the same things.

"A Lion in the House" Last week, PBS broadcasted a 2-part, 4-hour documentary following six families of children and teenagers with cancer. Personally, I didn't watch it because I knew it would be too upsetting, bringing back too many memories and feelings. For those of us living with childhood cancer, we know what it's like but many people can only imagine. If you get a chance, I hope you'll watch this important program to get just a little insight into what families like ours are going through and how it affects not only the child with cancer, but the siblings, parents, and anyone else who knows them.

I'm sorry that I haven't been in good touch lately, not always returning phone calls. I promise to be better once this craziness settles down. We are all keeping our cell phone numbers and e-mail addresses. You can always reach us at the same old places as I don't want to post the new addresses and phone numbers on this (very public) blog. Drop me a note if you want the details of the new house.

Very Tired

Adrienne's radiation is going very well, right on schedule. She has been incredibly tired but otherwise is doing fine. Her skin is a bit tan where she is being radiated so she puts lotion on daily. The hip pain seems better already but, touch wood, it's a bit too early to be sure it's gone.

I've actually been gone for a couple of days down to Las Vegas to sign the final papers on the house. We did a walkthrough Tuesday morning and just before, I thought, "what if I don't like the house?" It occurred to me that I had really only been there once. Luckily, I still love it. We're having fun buying some new furniture while being totally stressed trying to move out of our house here in California, all while trying to work. It's amazing how much junk you can accumulate in 14 years living in the same house.

We've had some trouble lately with our Internet connection. Our provider, Earthlink, seems to have a problem understanding dates so they turned us off too early. Some of our bills and even water have arrived at the new house despite our being clear about our move dates. I don't recall having these problems with past moves but it has been 14 years. Ah well, it'll be over before you know it.

Save the date: we are planning a housewarming party and re-marriage (yes, a tacky Vegas wedding) on October 14. Should be fun.

First Treatment

Adrienne had her first treatment today and it went just fine. She doesn't have any nausea, which is great. She will be getting 15 treatments of 240 cGy each day for a total of 36 Gy. This is the same dose as she got for her neck last fall but over a shorter period of time. The area being treated is actually quite small so she can tolerate the higher dose each day. We are happy that she will be able to finish before we go to Spain.

Adrienne is feeling much better overall. Her sinuses are feeling better and she's over the side effects from her immunizations. We even did a little shopping at the Nordstrom Half Yearly Sale after her treatment.

We are busy getting ready for the move. Curt's company is packing and moving us so the big project, as Adrienne says, is "editing." We've accumulated so much stuff over 14 years in this house. We'd like to start with a lot of new furniture so we are selling much of what we have here.

Radiation to Start Monday

Yesterday was another one of those very long days at the hospital but we got a lot accomplished. Adrienne had her setup for radiation and will begin on Monday for 15 treatments. This area of the pelvis has never been treated before and there are no critical structures in the way so they can be very aggressive. Fertility isn't an issue since Adrienne has ovarian failure from her first transplant and they won't treat to a high enough dose to cause adhesions in the large and small intestine, the only other real risk. Adrienne has her antinausea meds just in case but they are treating low enough down on her body so that shouldn't be an issue.

The doctor did a very thorough examination of Adrienne's hip. It seems she has pain outside the area that is abnormal on the scans. Add to that, the abnormality on the PET scan doesn't align with the abnormality on the MRI. So the plan is to treat a wider area than we originally thought. It may take some time for the pain to resolve so Adrienne will continue her pain meds for as along as needed. There is still concern that there is other disease that's too small to show on the scans so we're investigating additional treatment once the radiation is complete.

For some months now, Adrienne has been having sinus trouble. Her illness of the last week has only made things worse. Yesterday, she had a head CT and saw an ear, nose, and throat specialist. Between infection and inflammation, she has very little space left in the sinus. She is starting a more aggressive antibiotic and a short course of steroids. We were concerned about the steroids because of the AVN but her oncologist says it's a short enough time (12 days) and a low enough dose that it won't cause more problems. If this doesn't resolve the problem, Adrienne will need surgery to open up the sinuses.

Adrienne finally got her immunizations yesterday too. She's had two transplants, which completely destroys whatever immunity she had. Since then, she started the shots but couldn't finish because of relapses and treatments. Since we're going abroad, we really wanted her to have the shots now while her immune system is strong. This morning, she isn't feeling great but hopefully that will pass quickly. Her white count was quite high yesterday so she might be getting sick again too. We are all looking forward to having this behind us and enjoying our trip to Spain.

Radiation Plan

There's not much to report except that Adrienne will have her radiation setup on Friday and start the following Monday or Tuesday. She should be able to get 12-14 treatments before we go to Spain and then the rest (whatever that is) when we get back. She may stay with my mother or sister for awhile while I work on the move into the new house. Needless to say, this is all quite overwhelming but we are coping.

I have to say that Adrienne is amazing and determined to keep doing all of her regular activities. Her bronchitis and pink eye are much better and the pain from the biopsy is gone, thankfully. We are looking forward to a quiet week and enjoying the nice weather before starting those daily trips up to Stanford.

Biopsy Results

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

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

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

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

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

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

Biopsy Done, Great Echo

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

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

Strange MRI, Biopsy to Come

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

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

Lots Going On

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

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

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

MRI and Coming Home

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

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

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

Strange PET Scan

Adrienne had a PET scan on Tuesday and we got the results last night. There is no sign of Hodgkin's Disease in the neck, chest, abdomen, or pelvis, thank goodness. However, there is increased uptake in the socket part of the hip. Recently, Adrienne's hip pain has gotten worse, so bad that she wasn't able to go to the last session of her dance class this week. The consensus is that the uptake is not disease-related but probably indicates more avascular necrosis. I will drive down to southern California in two weeks to pick up Adrienne (and her stuff) from school, and she will see the orthopedist the following week. We are tentatively planning on more surgery at the end of July, which will be more invasive than her last surgery.

Adrienne is in a state of flux as she finishes up this semester and prepares for her sophomore year at CMC. Following the rising seniors and juniors, she gets to pick her classes on Friday. She's been trying to figure out her study abroad plans and rethinking her second major. I think she's worn out several erasers with the many changes in class choices. With her good grades, she found that she is a candidate for Phi Beta Kappa if she takes Spanish Lit next semester, so she is definitely going to do that.

Daniel is doing fine following his colonoscopy. Good news there: no sign of colitis. In fact, there was no explanation for the problems he was having so it was probably infectious. He seems to be back to normal now.

New Internship

It's hard to believe but Adrienne will finish her first year of college in about three weeks. Through her difficult high school years with relapses, transplants, and treatments, we didn't know if she'd ever get there and now she's almost finished with her freshman year. She couldn't have picked a better college that offers so many amazing opportunities and a wonderful education.

Adrienne found out that she's been awarded the Kravis-de Roulet Internship that she was hoping for. She's very happy and excited about the job itself and the $2,500 stipend she will receive next year. The money was a great surprise. She'll be sharing the job with another student who is a friend of hers, so she's looking forward to that.

Tonight, Adrienne will get to pick her dorm room for next year. CMC uses a lottery system like a lot of colleges. As a freshman, Adrienne is one of the last to pick but as of yesterday, it looked like her preferred dorm was not the most popular. CMC has senior apartments and most of the rising seniors either want to live there or in one of the quieter dorms in what they call South Quad. Other people want to live in "party central" in North Quad. Adrienne wants to live in Mid Quad near where she lived first semester.

Medically, Adrienne is fairly boring right now. This is a good thing. Daniel, however, is having some trouble of his own. It seems he might have ulcerative colitis. He will have a colonoscopy tomorrow to confirm the diagnosis. There is no cure but the symptoms are treatable.

Quick Update and Some Thoughts

Adrienne has recovered from her sinus infection and is feeling much better. She has a lot going on at school right now as she rounds the bend towards the end of the semester. I think we all remember what that was like in college. You don't think you'll ever get it all done but somehow you do. I can't believe that her first year of college will be done in mid-May.

I chat with a number of people over the Internet who have children with cancer. It's great to meet so many wonderful parents who give everything for their children, but also heartbreaking at times. Since we aren't at the clinic all the time anymore, it is easy to get out of touch with what is happening all over the country and all over the world. I'm humbled by the people's strength and courage, and what they do for their children.

I spent part of the day Saturday going through Caringbridge sites (a blog service for the families of children with cancer) and was reminded how lucky we are that Adrienne is doing so well. Everyday, children are diagnosed, relapsing, or worse, dying of cancer. Our hearts go out to every parent who is dealing with a terrible situation that no one should ever experience and to those who have lost their children. There are no words to say what we feel.

Sinus Infection

Adrienne's CT showed a sinus infection but she didn't notice anything at the time. Since then, it is bothering her and she has a cough now too with some intermittent low grade fevers. Her doctor at City of Hope is out of town so she had her first visit to the health center at school to get a prescription for antibiotics. Hopefully this will pass quickly because she wasn't feeling well enough to go to her dance class yesterday and they have an informal recital on Wednesday.

Adrienne is already busy planning next year, in fact, the next two years of her college life. She would like to spend a semester abroad at either Cambridge University or the University of London the second semester of her junior year so she needs to plan her classes very carefully now to make sure she can do that and graduate on time. She's decided to take a dual major in History and Psychology with a sequence (like a minor) in Leadership Studies. Subject to availability this coming semester, it looks like she'll be taking Organizational Psychology, Psychology Statistics, a religious studies class on the holocaust, and a history class on women and politics in American history.

The dorm/housing lottery for next year is coming up soon. Adrienne knows that she wants a single room and an even smaller meal plan (just 8 meals a week) but not much more than that. It really depends on what her friends decide to do and what lottery numbers every one gets. Stay tuned.

As if she doesn't have enough going on, Adrienne is applying for the de Roulet internship at the Kravis Institute for next year. Her job will be to organize the annual Kravis-de Roulet Conference on leadership in the spring. She thought the position was only for upperclassmen but found out that sophomores are eligible, and she has been encouraged to apply. She is working hard to get her two letters of recommendation and to finish up her application.

There's a freshman at CMC who was diagnosed with cancer earlier this semester. Adrienne doesn't really know him but decided to contact him to see if he would like to talk. They're having coffee later this week. It's awful that Adrienne has gone through so much but it's wonderful that she has a unique experience to help others.

Clear Scans

Adrienne's scans were clear of Hodgkin's Disease once again, now giving her 5 months of remission. We are very thankful and relieved for this bit of good news. Adrienne celebrated last night by going to a Spanish tapas restaurant with some friends, followed by rearranging her dorm room and a movie with a friend. It's all fun and we're so grateful that she's able to experience these things.

Adrienne saw the cardiologist yesterday. He doubled her heart medication but she is still on a very low dose. He remarked once again about how small and thin she is. Most of his patients are people with heart disease who also have cancer so she is not like his normal patient. He seems to have taken quite an interest in her. With the good news about the scans and the medications under control, Adrienne is now going to be free of doctors until the first week in May, the week before her finals.

The only problem now is Adrienne's right hip. It appears as if the surgery was not successful on that side and she is having quite a lot of pain. The core decompression she had doesn't always work but at least the left hip is okay. She has an appointment to see the orthopedist in May when she finishes school. This will surely mean more surgery, which will be much more extensive than the last one.

Since Adrienne won't be doing the clinical trial this summer, we're going to take a trip to Spain so she can practice her Spanish and, of course, eat more tapas. It will be just the girls: Adrienne, myself, and Adrienne's grandma. My mother and I have been to Spain but Adrienne hasn't. We'd like to focus on the Seville area and the Basque country since neither of us spent time in those places during our other visits. It will be awfully hot when we're there in July but I'm sure we'll find a way to survive. Ole.

Back from Spring Break

By all accounts, Adrienne had a great time during her week off, sleeping in, shopping all over Santa Barbara. She even learned how to knit. She and her friend arrived back at college on Saturday only to find out that the dining hall wouldn't be open until Monday. Luckily, the village is close by so she and the other earlier arrivers could get something to eat. Now she's back to the routine of classes, work at the Kravis Institute, ballroom daning, Straight But Not Narrow...sounds like a pretty good (though sometimes stressful) life.

Adrienne's right hip is hurting her quite a bit. She says each step hurts and sitting is also painful. As I recall, that hip was worse than the left prior to her surgery in December. The more advanced the avascular necrosis, the less likely that the core decompression surgery she had will work. I've made an appointment for her to see the orthopedic surgeon in May and have a call in to find out about pain relief in the meantime. Since she's now taking the cardiac medication, we may need to be more careful about pain killers that can cause clotting problems.

City of Hope called the other day to say that our insurance won't pay for a PET scan until the CT is done. This is a new policy, obviously designed to minimize the number of very expensive PET scans done on patients. For Adrienne, it just means extra visits to the hospital. So, she'll have the CT on Friday this week and probably the PET the following week. She sees the cardiologist on Friday too and he will probably adjust her meds. The extreme fatigue she felt the first week is gone but may return as the dose increases.

I spoke to the doctor running the clinical trial we were interested in. If Adrienne is still in remission with these scans, he doesn't want to do it because he doesn't want to take the risk while she's doing well. These types of treatments work best when someone's disease is under control but, on the other hand, we don't want to upset the apple cart while Adrienne is doing so well.

Spring Break

Adrienne is very excited to start her one week spring break from college. She is going to Santa Barbara for the week with her best friend from college. Her plan is to stay with her dad, help the local Team In Training manager, and have fun shopping on State Street. Along the way, they hope to catch a few tasty dinners and watch some good movies. Sounds like a good way to relax and unwind. It's so wonderful to hear Adrienne sounding so happy after the last few years of nonstop treatment.

Last Saturday, Adrienne started her new heart medication. Her heart races a bit from time to time and she is very fatigued. It takes a few weeks to get used to it and, hopefully, she'll be feeling back to normal before we know it. She is on an extremely low dose, which will increase as she gets used to it. She'll probably be seeing the cardiologist every 3 weeks until the dose is right.

Good News - No Heart Failure

After completing all of her cardiac tests this week, Adrienne saw the cardiologist at City of Hope today. We were very happy to hear that she doesn't have heart failure. She is going to start taking an ACE inhibitor called Enalapril to ensure that she doesn't go into heart failure. Needless to say, we're very relieved. The only disturbing item is that she has low blood pressure in her legs (she had a test that measures that) with no real explanation. The low blood pressure is responsible for her blue feet, which is likely to get worse with the heart medication. The doctor wants her to wear warmer shoes and see if that will help her circulation.

Adrienne's oncology checkup went well also. She will have PET and CT scans in three weeks to make sure she is still in remission. We feel pretty confident but these tests always make us a bit nervous waiting for the results.

Adrienne is having a really good time at college. Last night, Salman Rushdie came to speak at The Ath. Adrienne didn't get to go to the dinner because she wasn't on campus when registration for the event started but she got to see his presentation in person. Her response, "oh my gosh, he was so interesting."

Cardiology Visit + Parent's Weekend

The last few days have been very busy. On Friday, I arrived down at Claremont and took Adrienne to City of Hope for her cardiology visit. "Dr. Ven" has a pretty abrupt bedside manner, quite different from what we're used to in pediatrics, but he is very knowledgeable. He was surprised to see someone as young and petite as Adrienne and kept remarking on how small she is. He did a very thorough exam and history and has ordered additional tests including a MUGA scan, additional blood work, EKG, and blood pressures in her legs. He feels that all of Adrienne's symptoms, particularly the edema in her feet and ankles as well as blue toes and lips (cyanosis), are definitely related to her heart. He seemed particularly concerned that the pulse in her feet and legs was very weak for an 18 year old. All of this is a sign that Adrienne is probably in congestive heart failure. It's sort of a good news/bad news story. Congestive heart failure can be reversed with medications including an ACE inhibitor, beta blocker, and maybe digoxin. The problem with these meds is that they lower blood pressure and Adrienne already suffers from low blood pressure. It will be a tough balancing act to get the right dose of medications to help her heart function better while making sure she doesn't pass out. The doctor wants her to take the first doses of the medications in the clinic and to stay for awhile to make sure she is okay. This all sounds fine to us and we're happy to have found a doctor that is doing something, compared to the other cardiologist who kept saying Adrienne's heart was unchanged despite increasing symptoms and echo reports that contradicted that. I had some questions about the correctness of the diagnosis (dilated cardiomyopathy) but Dr. Ven felt that was probably correct and a result of all of the treatments (chemo and radiation) that Adrienne has had.

The rest of Parent's Weekend was fun, filled with presentations and spending time with Adrienne and her friends. We were so impressed, once again, with the college and all they have to offer, as well as the students. Today, I went to two of Adrienne's classes: calculus and lit. The calculus looked like something I did in a past life though I couldn't really follow what the prof was doing. Lit was another story. They were discussing a Salman Rushdie book and the time in which the book takes place: 1991. I thought it was funny that the 18 year olds didn't know that the first Gulf War took place that year. They didn't know what the movie "The Magnificent Seven" was about, and one young lady thought it was a television show. Another student even referred to a character in the book in his forties, the same age as I am, as middle aged. Okay, yes, I'm definitely feeling old.

Happy Valentine's Day

Yesterday, February 13, was Adrienne's third birthday since her second bone marrow transplant. In the past, I got her a little kids card (1st birthday, 2nd birthday) and a cake to celebrate. Since she's at college, I had to improvise. They have a cake program at Claremont McKenna so I ordered a chocolate cake (her favorite) and her friend Ashley from high school picked it up to surprise her. She doesn't want everyone to know about her cancer so the cake just said "Happy Day." By all accounts, she was really surprised and had a good time. She said I shouldn't do it again next year because she's eating too much, but I think we should continue to celebrate this important day.

The Lacrosse team at CMC shaved their heads last weekend in honor of a team member who was recently diagnosed with cancer. Adrienne isn't sure what type of cancer he has but it is most likely Hodgkin's Disease since it is the cancer that most affects people from age 14 to 19.

We are excited to visit Adrienne for Parent's Weekend. I will fly down Friday morning so I can take Adrienne to see the cardiologist. Curt will fly in Friday night from Las Vegas and we'll stay until Monday afternoon. We're looking forward to seeing how she's doing in person.

Business as Usual

Things are pretty quiet for us. Adrienne is doing well at college, of course. Academically, she's not finding her classes particularly difficult just yet. Her favorite activities are her social dance class and The Ath. She learned the Cha Cha, and as soon as she was feeling comfortable with the steps, they started the Foxtrot.

The Athenaeum is unique to CMC and something that makes this college really special. They have speakers four nights a week, along with a dinner. Adrienne met the Rev. Al Sharpton a couple of weeks ago, probably the most famous speaker they've had since she's been there, besides Mark Geragos last semester. She usually goes to The Ath at least once a week. If you're interested, you can read about the upcoming speakers at www.claremontmckenna.edu/mmca/.

We are looking forward to visiting CMC on February 17-20 for Parent's Weekend and meeting the new cardiologist. Hopefully we'll get some answers then. Adrienne's next checkup with the oncologist is on February 24.

Things are Good

I'm sorry it's been awhile since I posted. I've been putting off some surgery for myself and had it this week. I'm doing fine but am quite tired. It'll be about 10 days until I can drive and probably a couple of months before I have my old energy back. Adrienne has been calling me twice a day to make sure I'm okay since she's used to being the patient and wants to help.

Adrienne is doing well at school, getting into the swing of things again. She's met people in her new dorm and so far, her classes don't seem too difficult, even second semester of college Calculus. Spanish is going well too even though it's been awhile since she took it. She seems to enjoy her dance class learning the Cha Cha first. There are students from all of the Claremont colleges and they switch partners frequently so it's a good opportunity to meet people.

We've decided to get another opinion on her cardiac function. I wrote to a doctor in Miami who is one of the foremost experts on treatment-related cardiac damage in children and he even questions the diagnosis of dilated cardiomyopathy and suggests Adrienne might have restrictive cardiomyopathy. These are two very different diseases. The new consult is on February 17, when we'll be down south for Parent's Weekend at CMC, but it will probably take a few weeks of testing to figure this all out.

Back to College

Adrienne is back at Claremont McKenna College with today being the first day of classes. She had to move dorms due to her hip surgery so she would have an elevator rather than stairs. It may take a bit of getting used to but she has a nice big single room on the 4th floor. We spent the last couple of days driving around to get the things she needed and to help her get set up.

The next few days will be quite busy. Adrienne got two classes she wanted and is trying to change the other two. That means she has to go to the old classes and the new classes with a hope of getting in. She's already on the waiting lists so we're keeping our fingers crossed that she has what she wants in a few days. If she can't switch, her classes are fine but she will have very long days on Mondays and Wednesdays and she'd like to spread things out a bit more.

Adrienne is free of doctors for a little while. She will see the oncologist a City of Hope in a few weeks, as well as a cardiologist. We aren't feeling really confident about the advice we are getting from the cardiologist at the children's hospital and have asked for a second opinion. The other item of note is Adrienne's thyroid, which is already showing signs of failing following her radiation. She will probably wind up starting a supplement in the next few months. As you can imagine, she hates taking pills but is down to just a few now, so adding another small one shouldn't be too difficult.

Cardiology, Oncology, and Ortho Checkups

After a quiet couple of weeks, Adrienne fainted on Wednesday. The cause seems to be low blood pressure, especially on standing, which is called orthostatic blood pressure. There is no specific cause for this but it's something she's suffered from in the past. The solution: drink something before getting out of bed, sit up slowly, stand for a moment, and then walk. Thankfully, Adrienne didn't hit her head or hurt her hips in any way.

We arrived at the hospital at 9 am yesterday and left at 6 pm. First, Adrienne had labs drawn, which look great. Her blood counts have completely recovered from the radiation. The only concerning item is her thyroid function. She is almost guaranteed to have hypothyroidism from all the radiation she received so this is no surprise. We just need to find out if she needs to start taking a pill (synthetic thyroid hormone) now for this or if we wait until she has symptoms.

Next, Adrienne had an echo of her heart and saw the cardiologist. Her shortening fraction (SF) took another big dive (23% in October, 17% yesterday, over 30% is normal) but her ejection fraction (EF) remains steady. The doctor says that the EF is a much more accurate measurement of her cardiac function and that her heart looks essentially unchanged on the echo. He continues to think that the edema and blue tint in her toes and ankles is due to the chemos she's received that affect the peripheral nervous system and not to her cardiac function. She finds the edema very annoying but the blueness doesn't bother her.

In the afternoon, Adrienne had a pulmonary function test. We don't have results of that yet but we don't expect any significant changes since she hasn't had any treatment the last few years that would affect the lungs. The only risk is for graft-vs-host disease but that would be very unlikely this far out from transplant and she has no symptoms.

Finally, at 4 pm, Adrienne saw her oncologist. Oh, that was after waiting nearly an hour for a chest xray. The chest xray was clear and her exam was perfect.

After that, Adrienne saw the orthopedist at the adult's hospital. She had been scheduled for hip xrays but we never got there. The orthopedist is very happy with her progress and even said she didn't need to use the crutches anymore (not that she's been using them much anyways). Even the fainting from a standing position didn't harm the hips. She is supposed to take it easy for a month and then see him again for one final xray in May. Since she can do more activity than we were originally told, she might take a ballroom dancing class this semester. I wish I could take it with her but she promised to teach me a few steps.

Adrienne goes back to CMC on Sunday. She's enjoyed some time off from the pressures of college but is looking forward to being on her own again and seeing her friends.

Happy New Year

We are happy and relieved to say goodbye to 2005 and move on to 2006. While there have been some really good times this year (Adrienne starting college and winning a national merit scholarship), it has mostly been a very difficult year with relapses, chemo, radiation, and surgeries. Each recurrence gets more difficult, though you wouldn't think that was possible. This year was the first time that Adrienne failed to respond to chemo. We knew it would happen eventually but still weren't prepared. It seems so odd that Adrienne has now had cancer five times, yet she still looks so healthy and is able to live a relatively normal life. As long as she's here, we can hope that someday they'll come up with a cure for her. Each year, we know many children and adults who lose their battle, sometimes because of treatment and sometimes due to disease progression and we know we are the lucky ones.

Adrienne is doing incredibly well after her hip surgery. You'd hardly know that she has holes the width of your pinky from the side of her leg all the way into the large femoral bone in her hip. She isn't even using crutches around the house, saving those for trips out. We won't know if the surgery is successful in generating new bone for several months, but so far, so good. Adrienne's next checkup is on January 12 when she sees her oncologist, cardiologist, BMT doctor, and orthopedist, plus a pulmonary function test and echocardiogram. I'm sure it will prove to be one of those very long, boring days at the hospital but it will be worth it assuming she gets a clear bill of health.

We will leave to take Adrienne back to college on either January 14th or 15th. She feels like her vacation has been much too fast. In the next day or two, she is going back to her high school to visit with her old teachers. It's heartwarming to see how far she's come.