Happy New Year

2007 has been a very tough year, beginning with Erika's death in January and then Alese Coco's in May, plus many, many others. We know that Adrienne continues to beat the odds and are forever thankful for that. As her cancer progresses, we become more and more fearful yet at the same time, we are confident that a cure will be available in the not too distant future.

Adrienne had a rough few days with her stomach after the chemo. She had gained weight earlier in the year on the valproic acid but has since lost that and more. She seems to be eating a bit better the last few days but not enough to make up for the prior weight loss. Besides her stomach, she is feeling well, her blood counts are good, and she's actually sleeping much less than when she arrived home from New York.

Tomorrow, New Years Day, we are driving to Santa Barbara, taking care to avoid the Rose Bowl. We'll spend a few days with Daniel and then take Adrienne for chemo on the way back. Tonight, we're also avoiding the strip since 300,000 people have come to LV for New Years.

Happy Holidays

Adrienne says, "Chemo was not fun." She was really nervous before the infusion since it's been awhile and she's been really tired since. She took Zofran for a couple of days so the nausea wasn't bad but she hasn't had much appetite, even with a fabulous dinner cooked last night by yours truly.

This week, we're just hanging out, maybe shopping some sales. Curt gave us a gift certificate to a spa so we're looking forward to some great relaxation and luminous skin on Friday afternoon. Next chemo is on January 4 after a visit to Santa Barbara to see Daniel. Goal: Avoid Pasadena and the Rose Bowl on New Years Day.

One down

Adrienne got home late on Wednesday night after missing her plane on Wednesday morning and spending the day at JFK Airport. Ugh! Then we flew to California on Thursday and spent Friday at City of Hope. Her counts were good enough for chemo but no one got insurance approval in advance. It was news to me that insurance pre-approval was required and apparently this is something new. It seems odd to me that approval is necessary since this obviously isn't elective.

I think half the staff at COH got involved and eventually things were resolved, but it meant chemo started about two hours late making for a very long day. So far, Adrienne isn't feeling too bad and even ate dinner last night. One of the chemos, oxaliplatin, causes a type of acute neuropathy so Adrienne can't eat or touch anything really cold or hot for 3 days. Her tongue "cramped up" last night but it was more of an annoyance than a problem.

Another issue is neupogen shots. Apparently we have to mail order those and can't get them at the pharmacy so Adrienne won't get her shot today. We'll just hope that her counts hold up so she doesn't get sick and can get her chemo on January 4. With the holiday, I expect it will be late next week until I can get the shots.

Glass is Half Full

Good news: No disease in the bone marrow. This was a big concern due to Adrienne's recent blood counts and infections. Bad news: 20% increase in the lung to 5.1 cm and 100% increase in the spleen to 6.7 cm. This is just since August, yikes. This reminds me of a time when Daniel was little, I took him to the doctor with a number of infections including impetigo and bronchial pneumonia. The doctor said he was "antibiotic deficient." I'm thinking maybe Adrienne is just chemo deficient and Friday's treatment will be just what the doctor ordered, at least we can hope.

Adrienne finished exams today (yyyyeeeaaahhh) and flies back tomorrow. She gets about 24 hours at home and then we're off to Southern California for chemo and to see her cardiologist. It's been 7 months since she saw the cardiologist but her echos in New York have been great so we aren't worried about that. I'm just hoping the chemo isn't bad and she can enjoy the holidays.

I've been a nervous wreck for a couple of days waiting for Adrienne's results. It started Sunday night with two hours sleep, last night I got five. Hopefully tonight will be a full night's sleep. The worry isn't gone but at least we know she's going to be treated very, very soon.

Scans Friday?

Adrienne is supposed to have a PET/CT scan tomorrow in New York. Originally, the plan was to do it at City of Hope but they had trouble scheduling it. Due to an insurance snafu, we won't know if this will actually happen until the morning. I don't expect results until Monday or Tuesday. We're just hoping that things aren't out of control and that Adrienne can start chemo next Friday. Her mouth is still painful in areas but overall she's feeling pretty good right now.

I Hate Cancer

Yep, cancer sucks. My mother in law is doing okay right now. She's currently in a nursing home trying to rehab her arm while she receives palliative radiation for tumors in her arm and spine. There is no curative treatment for her and the doctor thinks chemo would likely shorten her life rather than lengthen it. I could go on and on about the perils of smoking but that falls on deaf ears when talking with an ardent smoker (you know who you are). She isn't that old, just 77, but will likely live out the rest of her life in nursing care or hospice.

Adrienne was neutropenic last week with low grade fevers and an apparent infection in her mouth and sinuses. She got a shot of Neulasta last Friday and is finally feeling better today after a crummy weekend. The timing is never good as she's trying to finish up the semester. She turned in her last paper today and now has a few days off to study, oh, and to get scans. It turns out that City of Hope can't get the PET scan scheduled so we're trying to get a PET/CT done in New York this week. Needless to say, I'm exhausted and frustrated with all this cancer stuff.

When it rains...

Curt's mother was diagnosed with stage 4 lung cancer last week. She broke her arm about 10 days ago opening a pickle jar (yes, you read right). It turns out there is tumor in her arm and throughout her body, and the emphysema in her lungs is actually cancer. Add to that, Curt's sister was diagnosed with stage 4 esophageal cancer earlier this year. Thankfully, she is now in remission but obviously she can't take care of their mother. Curt and I are flying up to Seattle this weekend to see the family and sort out his mother's affairs. She is feeling well right now but we know that likely won't last long.

Curt's family was supposed to come here for the holidays but that trip is now postponed indefinitely. With that and the rescheduling of Adrienne's chemo, we'll be having a quiet holiday season with some friends here in Nevada. Hopefully the chemo won't be too difficult and Adrienne can enjoy her time off school.

Schedule Change

Adrienne called last night and her wheezing is worse so we're pushing up the schedule. She flies back to NV on Dec. 19, we'll fly to CA on Dec. 20 for scans, and she'll see the doctor and start chemo on Dec. 21.

Trying Not to Worry

Adrienne is feeling better but the symptoms of her disease are progressing. Her itching is bad at times and the wheezing seems more frequent and constant. We're all eager to get her started on chemo. I told a friend who also has a grown daughter how worried I was about waiting until the first of the year for treatment. Here's her response.

Being a Mom comes with such outlandish joys and such deep, unspeakable pain. We hold on so tight to the memories of our little ones and what should have been, what was supposed to be. Both young ladies, in their own way, with their dreams, desires, goals and plans, each being so strong and brave, wanting to be so grown-up and independent and yet not quite willing to cut the apron string completely. Not that we would allowed them too!

We have the toughest role of all Alison, we raised them to think for themselves, to make their own mature decisions and also understand the consequences for some of those choices. But silently we are really screaming "STOP, no not that decision"! All we really want to do is turn back the clock, make the pain go away, select prince charming for them, heal the disease and allow them to live the fairy princess life. After all, isn't that we ALL deserve, isn't that what God planned for us when she gave us our beautiful little girls?

Adrienne is so lovely, so bright and beyond courageous. She has asked for the quality (and yes of course, quantity) of life. And you have, with all your heart ache been braver yet, stepped back and given that to her.

Smile, my dear wonderful friend, Adrienne knows what she's doing and what is in her heart, that she needs to accomplish for right now. You have done your job well.

We need to keep drinking good wine, eating dark chocolate, and being the Mom's that we know how to be.

Our journey isn't over till the fat lady sings, I'm not even humming yet, sweetie

Lots of hugs and kisses for you

Me

Reflecting on 11 Years

At Thanksgiving, 1996, Adrienne showed me the lumps at the base of her neck. Since then, we've had 11 years, 132 months, 572 weeks, 4004 days of worrying and fear. Adrienne has been through more than a dozen chemotherapies, 21 weeks of radiation, two transplants, and too many procedures, surgeries, scans, and doctor's visits to count. If I hadn't seen it myself, I wouldn't believe it would be possible.

People often ask how I do it, how I cope with having a sick child. My answer is always that you do what you have to do. My emotions have ranged over the years from sheer terror to simply being thankful that Adrienne is still here, that she's had the best doctors and medical care possible, and that we've had the privilege to meet the most amazing people. I am continually in awe of the parents who are there for their children no matter what the situation, who get by with no rest and always full of worry, and who sometimes have to hold their children while they take their last breath.

We have a lot of uncertainty in our future. Adrienne's cancer hasn't been this big since her original diagnosis and it's obviously concerning that three treatments haven't worked. Conventional chemo with its side effects are definitely not what we wanted to do but we are desperate to get this back under control so Adrienne can live her life without fear as a normal college student. At least for the next few weeks, Adrienne can be that college student. Today I bought her plane ticket to come home on December 19. We are excited to spend this holiday season with our friends and family, and are thankful for the blessings in our life.

Much Better

We are in NY visiting with Adrienne for the Thanksgiving week. Today, Curt, Adrienne, and I went to visit the doctor and it was all good news. Adrienne's platelets are up and she's looking just great. We didn't get the liver numbers yet but are hopeful that things continue to improve there. Adrienne will go back in two weeks for labs just to make sure things are still okay.

The nurses printed some charts that show her labs the last six months. Adrienne's ESR, a general sign of inflammation from lymphoma, has been working its way up and her hemoglobin has been trending down, both signs of her disease. She is still wheezing as well. The plan now is for her to start chemo with gemcitabine and oxilaplatin at the first of the year at City of Hope.

It looks like Broadway isn't going to be back this week but we're finding plenty of other things to do. Adrienne has school and work until Wednesday afternoon so Curt and I have been exploring. Sunday, we went to the Guggenheim and walked all around Central Park. Tomorrow is our visit to the Met. On Friday, all three of us will be at the MOMA, Adrienne's favorite museum in New York City. In between we're having lots of great food and are enjoying people watching.

Improving

Adrienne had labs drawn today and things are looking much better. The liver enzymes are half of what they were last week. Hopefully they'll be back to normal in another week or two. The only lingering concern is that her platelets are down again to 72 (normal is 150-450). They are falling slower than before but we really need to see an upturn soon. Adrienne now gets a week off until she sees the doctor and gets more labs next Monday while Curt and I are in New York. Hopefully we'll see more normalcy by then.

In the meantime, Adrienne is busy with school. She's mostly caught up with the exception of her accounting/finance class. The prof and TAs have cancelled office hours several times so she is having trouble getting the help she needs. Hopefully this will be resolved soon.

We are looking forward to Thanksgiving in New York. The last time we were there this time of year was in 2002 for Adrienne's wish with the Make A Wish Foundation. It was a wonderful trip in many ways but Adrienne had a lot of pain from the chemo she was getting at the time and we had to make a visit to the emergency room. This time, we're planning on an event free trip and a resumption of Broadway shows this week since we have tickets for Avenue Q.

A New Wrench

Adrienne had a late appointment on Monday so her labs weren't done when she saw the doctor. I spaced it yesterday so I called today, fully expecting that everything was back to normal. Well, it isn't. The liver enzymes are higher and the platelets are lower. I spoke to the doctor late this afternoon and he's stumped. The plan now is for Adrienne to stop all of the antibiotics she's taking and have labs drawn again on Monday. In the meantime, her doctor wants to call Seattle to see if this could possibly be related to her allo transplant nearly 4.5 years ago. I spoke to the long term follow-up group last week and they think it's highly unlikely that this is related to the transplant, but he wants to talk with them himself.

Adrienne is feeling pretty fatigued but otherwise is well. She noticed that she has several new bruises. Her platelets are at 80K now, which isn't low enough to cause life threatening bleeding but much lower than her "usual" 400-500K. We'll just have to be patient and hope that things right themselves on their own.

Taking a Break

Adrienne says she's feeling just about normal now. (See her post below.) She saw the doctor yesterday and everyone agreed that it would be good for her to take a little break from treatment. Admittedly, this makes us a bit nervous but starting something new now doesn't make a lot of sense when she'll be coming back to the west coast in about six weeks, seeing her old doctor at City of Hope. This will give her a chance to totally recuperate and finish her exams while still feeling good. The only issue is that she seems to be having fevers caused by her tumors. The doctor suggested very low dose prednisone if these fevers become too annoying. Ugh! Besides the awful side effects of the drug, prednisone caused the AVN in Adrienne's hips so she typically stays away from it, but low doses don't have the same side effects as high doses.

Update From Adrienne

Adrienne here. I just wanted to let everyone know that I'm feeling much better but still recovering. I really appreciate all the well wishes and the packages people sent. It really does brighten my day when I get something in the mail, so thank you.

For now, I'm just trying to catch up from missing mid-term week. In terms of treatment, I probably won't continue on ABT-263. My mom and I have heard that other patients have had problems with respiratory infections and liver enzymes, so it seems safest to quit while I'm ahead. The next step will be conventional chemo which I'm not looking forward to, but I'm pretty confident that chemo still works for me and will quickly put me back in remission.

Back at Columbia

Adrienne was discharged late this afternoon and is now enjoying a long shower without IVs and poles. When she's done, we're going out for a nice meal since the hospital food was as bad as hospital food gets. I tried to go out and get things she'd like but there wasn't much close by.

She is still feeling a bit weak and tired, but she's so much better. The liver numbers are still high but they seem to be coming down slowly. I called SCCA where Adrienne had her allo transplant and they don't think that's the cause but the docs there will discuss it. They think the problem is the clinical trial drug. Hmmm.

Adrienne will go back to see the doctor on Monday so we can figure out what to do for treatment. I'll stay here for 2 to 3 days more to make sure she's okay and then go back to Las Vegas. Curt and I will be back in just two weeks for Thanksgiving. Hopefully she can catch up with her school work between now and then as her profs so far seem willing to do whatever is needed to get her through the semester.

Making Progress

Adrienne is doing much better today. She had pizza for breakfast (I know what you're thinking but food is food) and she's sitting up now reading a book for school. Temp is normal and the thrush in her throat is almost gone. The only remaining issue is the liver. We saw the GI people yesterday and they said the problem could be due to the pneumonia, and they'd like to watch and wait. They'll decide at the end of today whether or not to explore further. So all in all, things are good here in NY.

We Have Internet!!!

Sorry for the lack of updates but we've had very limited Internet access. Yesterday, our friend Karen was able to get an update on the blog so you're mostly caught up. We don't know much more today.

Adrienne is running low grade fevers (99-100) but that's a big improvement over a few days ago. She has a major infection in her throat and if that doesn't improve by tomorrow night, they'll go down and take a look. Her liver numbers are up again but her MRI and ultrasound were fine. If they don't improve in a couple of days, a liver biopsy will be the next step. The doctors think it might just be due to the pneumonia so let's keep our fingers crossed.

Yesterday, we were moved from a general medical unit to the oncology unit, and it's so much better. The nurses on the other unit couldn't draw blood from Adrienne's port and they couldn't administer some meds. This is much more of what we're used to and the nurses are very, very nice. We even have a frig in the room.

Update

Adrienne's fevers got much higher on Thursday night (above 103F with Tylenol) so we went to the ER at New York-Presbyterian Hospital. We were in the ER for 10 hours but Adrienne had her own room and they took very good care of her.

Since then, the fevers have persisted on and off despite her getting the strongest of antibiotics. The pneumonia looked much more advanced on Thursday than it was on her Tuesday scan and totally surrounds the tumor in her right lung. She has some shortness of breath and coughing when she takes a deep breath but otherwise her breathing is pretty good.

Adrienne has been complaining of a sore throat for about a week now and yesterday her pain was up to 8/10 on the pain scale. After a number of cursory looks the last few days, last night the doctor took a lot of time to see as far down her throat as he could and there's both puss and thrush (yeast) in there. They are now treating the thrush and hoping the antibiotics clear up the puss, but it seems that the throat is getting worse and worse. This morning I asked for more continuous pain meds to make her more comfortable. Hopefully yesterday's throat culture will tell us more about the puss.

Apparently, Adrienne's liver function tests were increased when we came in on Thursday night and were up significantly again on Saturday. She's had an ultrasound and MRI of the liver, but we have no answers as of yet. Her liver is tender when they press on it and she has one area of sharp pain. If they can't figure out what's going on with scans, the next step is an endoscopy to visualize the liver better. This seems to be a problem with the bilary system and could be as simple as backup in the gall bladder or as complex as more tumor. Obviously, we're hoping for the former.

Adrienne has been unable to do any school work for a week and missed two midterms last week. They have been rescheduled for Monday but obviously she isn't going to make that. We'll just have to see where this takes us. We're still hoping to avoid a withdrawal but may have no choice if she doesn't improve soon.

We're all trying to remain calm and not overly worry but we know how difficult these situations can be. Adrienne is getting very good care and they are running every test possible. Hopefully she'll be on the mend soon.

Not Sure What's Up

THURSDAY AFTERNOON UPDATE: I just spoke with the NP. If Adrienne isn't better tomorrow, they're going to admit her and run more extensive tests. This is definitely not what we wanted to hear but I'm sure we'll feel safer with her there.

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Adrienne is no better today. The docs had expected the antibiotics to kick in by now but no luck. In addition to a persistent fever, she has a very sore throat, some large lymph nodes in her neck, and diarrhea. The antibiotics she's taking should address all of those symptoms but obviously aren't working so far. She's sleeping soundly right now, which is good, and she ate a few bites of food this morning.

The NP read me the CT report over the phone. Unfortunately, there has been some progression in both the lung and spleen, though it isn't terrible, and there aren't any new nodes. The CT didn't get her neck. It's been less than a month since the last scan. Adrienne still isn't feeling well enough to take the clinical trial drug so we're in a holding pattern.

Dorm life is a bit tough for me, kids walking up and down the halls all night, stereos and TVs on full blast at 3 am. At least Adrienne is able to sleep through it all. I went to her psych class today to take notes. I'm pretty sure I was the oldest coed in the class but I did notice another man with gray hair. (No, I don't have gray hair.)

Still Trying to Figure Things Out

Last night, the radiologists went through Adrienne's CT with a fine tooth comb. Her tumors appear to be unchanged (this is good) and the only other abnormality is "consolidation" (a pneumonia) at the bottom of her right lung, right where the tumor is. They are assuming that this caused the abdominal pain, which is better today. Adrienne is still running fairly high temps, in the 101 to 102 range, but she can stay home as long as they don't go any higher than that with Tylenol. She did eat a little bit earlier today and kept it down. Last night, she threw up her two bites of dinner and her pills so it's good she's keeping things down now. Mostly, she's sleeping today and her breathing is fine.

I'm glad I'm here now and able to take care of her since she can't do much for herself. I cleaned her dorm and am cooking for her when she can eat but you can already see that she's lost weight. I don't much like sleeping on the love seat here but I wasn't about to climb into the top bunk, which is about two feet from the ceiling. There isn't a ladder so I would have had to climb onto the desk and then up into the bed. I'm not quite that brave (or young).

Looks like Pneumonia

Adrienne was worse today so I hopped the next plane to New York. She is feeling pretty badly tonight with a fever and vomiting. The doctor called while I was on the plane saying the CT looks like pneumonia. That's all we know for now and we'll get more information in the morning. The fever is below 101.3 so we can stay here tonight but I'll take her to the emergency room if it goes any higher. Let's hope we don't need to do that.

Sick - Not Sure What To Do

Adrienne started feeling lousy on Saturday so she thought it just must be the drug. By today, she was running a low grade fever and had abdominal pain, swollen lymph nodes, sore throat, and achiness. She went to the clinic and they aren't sure what's going on yet, but she has stopped the drug for now. They ran a bunch of blood tests including a spot test for mono and did an abdominal ultrasound since the pain appears to be in her spleen. We'll have results in the morning. Needless to say, she feels bad and isn't able to get much work done. She has two midterms and a paper due this week so she's in a bit of a panic. The doctor's office sent e-mail to each of her profs asking them to be patient with her this week as she's trying to get the work done.

I asked the doctor a few hours ago if I should come out and he said to wait until tomorrow. I spoke to Adrienne awhile ago and the fever was a bit higher, just over 100. I'll keep checking with her tonight. Jet Blue has flights every couple of hours from Las Vegas to New York so I can get out there quickly if needed. Needless to say, I'm very concerned, hoping this isn't anything more than the flu but the abdominal pain and fevers are concerning.

Starting Cycle 2

Today is the first day of Adrienne's second cycle of ABT-263. She'll take the drug orally for the next 14 days, take a week off, and then she'll have scans again. Overall, she's doing well but her fatigue has been really bad and she has some wheezing again. The doctor prescribed Ritalin for the fatigue. Yes, this is the drug given for ADHD but they also use it for fatigue in cancer patients. The wheezing is always a concern but isn't bothering her too much so we'll wait for the scans in three weeks to see what's going on in her lung.

We discussed Adrienne coming home in December and going back to CMC in the spring. If the ABT-263 is working, she can stay on the drug in Southern California. If not, she'll go on chemo until another drug, MGCD0103, becomes available. In early clinical trials, this drug has been very effective in patients like Adrienne with recurrent/refractory Hodgkin's Lymphoma. It probably won't be available for at least six months so chemo would be necessary in the interim. Right now, the drug is with the FDA and who knows how long that will take.

First Cycle Done

Adrienne finished her last dose of the drug yesterday. When she first started, it made her gag but she now takes it with orange juice and that helps. She had a fairly long hospital day yesterday for some end of cycle tests but, thankfully, she didn't have to do the eight hours of blood draws. The wheezing has returned but the doctor said that can happen when a tumor breaks up; we're hoping that's the case. The itching was very bad earlier in the week but better the last couple of days. The waxing and waning of the itching is typical for her. Except for a quick blood draw on Saturday, Adrienne gets a week off from the hospital. Woohoo!!!!

No Weekend Hospital Visits

Adrienne got good news yesterday. Her platelets are still going up so she doesn't need to go in this weekend for labs. Her hemoglobin is still in the 10s so she's tired but otherwise is feeling well.

Last week, I sent some of Adrienne's winter clothes and added some healthy food items from Trader Joes (peanut butter filled pretzels, dried peaches, a cranberry orange bread, some noodles for the microwave, that sort of thing). She loved it except for the dried fruit and I avoid nuts because she hates them. I was thinking that if you wanted to send something, it would really make her day. These were inexpensive items and I sent them UPS ground so it didn't cost much for shipping. Here's the mailing information in case you want to send a little something, e-mail me for the address at alison95070@yahoo.com.

Counts Up

Adrienne's counts came back up today, which is a great relief, since we want to make sure she stays on schedule. Overall, she's feeling much better. She made the decision to drop one class after CMC agreed, and she can still graduate on time in 2009.

Trying to do clinical trials while being in school without much support system is proving to be more difficult than expected, so Adrienne wants to come back to CMC for the spring semester and spend the summer with us in Las Vegas. City of Hope will be happy to have her back in December and, if the trial works, she can continue it there. If the trial doesn't work, she'll go on conventional chemo for awhile and I'll probably go to Claremont every other week to take her. In the meantime, she'll have a month here over the holidays, which will be a nice rest for her. I think she feels relieved to have made all of these decisions, although she loves the doctors and nurses at Columbia and enjoys the college.

Tougher Than Expected

Adrienne's platelets came up a bit today but her hemoglobin took a big drop, making her really tired. No one is sure what the cause is because this hasn't been reported by other patients. Her stomach is also a bit of a problem. One little bit of good news is that responses to the drug (ABT-263) are now being reported at the dose Adrienne is taking. She's been a bit discouraged with the whole thing and feeling overwhelmed with the hospital time and her school work. She's considering dropping a class by the deadline this Friday, which seems like a good idea with everything she has on her plate. She has a couple of days to make a decision.

Platelets

Adrienne actually started the trial on Friday and took additional doses on Saturday and Sunday following blood work. The drug can cause problems with platelets so daily labs are required for the first two weeks. Adrienne's platelets are falling faster than anyone else on the trial thus far. Only one person has had a serious drop but we expect that Adrienne's levels will be too low for treatment by Tuesday or Wednesday. Obviously, the goal is for her to take as much of the drug as possible so skipping doses is not what we want. Plus, bleeding is always a concern and Adrienne tends to bleed at higher platelet levels that most people.

Honestly, platelets were our last concern a week ago. Adrienne's have been extremely high for the last few years due to radiation to her spleen and resulting hyposplenia, which just means that her spleen doesn't work. You don't need a spleen to live so this hasn't been a big concern. The hyposplenia is also the reason why we haven't been extremely worried about the splenic tumors since they aren't preventing any functioning and she doesn't have pain. The lung is the major concern.

We'll just have to wait and see how things go this week. Otherwise, Adrienne is tolerating the drug well and feels pretty good, though a bit more tired than usual.

MONDAY AFTERNOON: Adrienne's platelets were unchanged today so she was able to take today's dose. Let's hope that they stay steady for the next 10 days so she can stay on schedule.

Clinical Trial Begins

Adrienne had a very long day at the hospital yesterday for her first test dose of the new drug called ABT-263. She takes this drug orally but there were more tests and 8 hours of blood draws after she took it. She was frustrated at the amount of time she spent there, at the awful taste in her mouth and general yucky feeling, and not being able to eat for 12 hours. She finally arrived home at 11:30 pm last night with the "fun" task of saving her urine for the next 24 hours. Thankfully, she is feeling better this morning. She went in for more labs today and to deliver her 24 hour urine.

Friday actually starts Day 1 of a 21 day cycle and it will be another long day. At least she doesn't have classes on Fridays. She again has to fast but she is supposed to bring a low carb breakfast with an egg with her and eat it when they tell her. They won't provide the food but they will reimburse her, which seems a bit ridiculous. She'll take the drug for 14 days straight and have blood draws each day since the drug can severely affect her platelets. This is only for the first cycle and hopefully things will settle down after that. Adrienne is a bit discouraged with the whole thing right now but I keep telling her it will get better. I hope I can keep my promise.

We Can Breathe Now

Adrienne has had a cough that's been getting worse over the past 10 days, making us more than a little anxious about her scans on Friday, but the results were not too bad. Here's the conclusion: SLIGHT INTERVAL ENLARGEMENT OF THE SPLENIC LESION WITH INTERVAL SLIGHT DECREASE OF RIGHT INFRAHILAR MASS FROM PRIOR STUDY/PET CT OF AUGUST 23, 2007. The cough is probably from allergies or a virus, but Adrienne can go ahead and start the study tomorrow. I suppose one good thing came of this: I found out that I can get a last minute ticket on United using my miles. If only I could do as well on a hotel. They are really expensive in New York right now.

September is childhood cancer awareness month so here's a few more facts about childhood cancer.

Childhood cancer is the leading cause of death by disease in the US and it kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.

There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.

The National Cancer Institute's (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.

The American Cancer Society spends less than 70 cents of each 100 dollars raised on childhood cancer. (This fact was a surprise to me.)

Trial Approved

We just found out yesterday that all of the approvals for the clinical trial are now in place. Adrienne has a battery of tests on Friday (echo, CT, bone marrow biopsy, blood and urine tests) and she'll sign the consent. I'm a bit nervous to hear more CT results and just hope there hasn't been much progression in the last month without any treatment. The trial itself will probably start on Tuesday so next week will be very busy for her with daily clinic visits. School is also keeping her very busy but she seems to like her classes. I'll update more after we hear about the CT.

Childhood Cancer Awareness

Now that Adrienne's school schedule is set, the doctor is trying to arrange the necessary tests and get her started on the new drug, hopefully no later than early next week. Adrienne is enjoying Columbia so far. She's already stressed about the work load, but that's nothing new for her.

Here are some new You Tube videos developed to bring attention to childhood cancer since congress has cut funding to the National Cancer Institute and Children's Oncology Group, meaning that 400 fewer children will be enrolled in clinical trials this year. These videos, the kids in them, and the experience are all too familiar to us.

Nervous Days

Adrienne saw the doctor this afternoon. We've been worried about doing another clinical trial but he still thinks we have time to try as long as they monitor her disease very closely. The clinical trial that she's dropping out of has seen two responses in Hodgkin's Disease, but unfortunately Adrienne wasn't one of those. Right now, the itching from the disease is annoying. She scratched her foot so hard the other day that she made a nice bruise. They prescribed a new drug for the itching, which helps a lot but it also makes her very sleepy. So now Adrienne will get ready for the ABT-263 trial with more tests over the next two weeks. Here's some information about the drug. http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/06-26-2007/0004615505&EDATE==

Today was Adrienne's first day of classes. She had two: a religious studies class (for humanities GE credit) and a class on personality (for a psychology elective). So far, so good. She's also taking Intro to Film Studies and Finance/Accounting plus one additional class that she's hoping to get into. She won't need to work this semester so that should help make her schedule manageable, especially with her treatment. There's a shuttle bus from the campus to the medical center or she can take a short subway ride so that's quite convenient.

We're very nervous right now with the faster progression. The doctor promises to watch her very closely and change course quickly if needed. She isn't having symptoms from the cancer in her lung (such as pain, coughing, shortness of breath) so she's supposed to pay very close attention to that. She also isn't having B symptoms (fevers, night sweats, weight loss). If anything changes, they promise to make a change in her treatment. So we just watch and wait. I told the doctor today very directly that we don't want to make a short term decision that could compromise her health later and he acknowledged that.

New Plan

We finally connected with Adrienne's oncologist today. He's on vacation this week but called from his car. He'd like for Adrienne to try another clinical trial with a drug that's been in the news a lot recently called ABT-263. The trial excludes people who have had transplants but he thinks he can get a waiver since her graft and her blood counts are so good. The next week will be spent in preparations and waiting for the last drug to get out of her system. One big benefit of ABT-263 is that it's an oral drug so she won't need to take the time for an infusion. The cycles are also shorter so she'll be able to finish two cycles and have scans in six weeks rather than eight. Hopefully she won't need another bone marrow biopsy for this one.

We went to the medical center for labs today and, afterwards, we stopped at Columbia University to see the dorm and campus. Wow, it's amazing. Columbia has that beautiful "ivy league" feel with big impressive buildings and people everywhere. The classrooms and offices are centered around a huge grassy area with statues, and the dorms are like regular New York apartment buildings. Within a short walk of the dorms and campus, there are restaurants and cafes, book stores, and shops all catering to college students. It's quite a change from CMC with about 1,000 students (and also a lot more beauracratic as we're discovering). We hope she likes it as she loves living in New York and wants to stay as long as necessary for treatment.

Frustration Continues

Adrienne had her scans yesterday. We arrived at 9 am only to find out that the insurance approvals weren't obtained beforehand, and we returned for a 2 pm appointment. I called in between to make sure it was taken care of and found out that the company sponsoring the clinical trial said they would pay for it. Our insurance would have paid for it but, since it was less than three months since the last one, it would have taken a call from the doctor to get it approved. At least we got something big from a drug company for once.

We got results a little while ago and they weren't what we hoped for. The tumor in Adrienne's lung has grown by 40% and the one in her spleen by 22%. The pancreatic node (it gets a new name each time but it's the same one) is unchanged. Now we need to figure out what to do next. I'm sure the doctor has a wonderful plan and we're eager to hear about it.

Adrienne had a few yucky days after her treatment but is feeling better today, and was able to go in to work for a few hours. I've been working here in NY and, since I telecommute anyways, it's not much different except that the people I work with are 3 hours earlier. They forget that I'm done in the evening and call me wherever I am, including at my cousin's house in New Jersey on Wednesday evening.

Four of Us Together

Happy Birthday

Today is Adrienne's 20th birthday! There have been times over the last few years when we didn't think she would see this day and we are so thankful that she's able to have this big milestone. I believe more than ever that she'll live a long life and that a cure is just around the corner. I have always known that about 1,000+ people die each year from Hodgkin's Lymphoma in this country but I hadn't thought about the fact that three people die each day of this supposedly curable disease, a sobering thought.

Adrienne and I will fly back to New York this Monday. Her boss has generously offered their apartment so we'll be staying there. We thought Adrienne would move to the dorms at Columbia on August 27 but we found out last Thursday that she won't move in until August 30. I may stay for a few extra days so she can have scans and move in. I don't want her to be alone for the scan, and more importantly, for the results.

We had a little scare this week. Adrienne was feeling some wheezing in New York, which she didn't mention to her doctor and which worsened when she arrived here in Nevada. We were worried that her disease had grown significantly but a chest xray on Tuesday was fairly stable. There's an area above the tumor that looked a bit abnormal but no one was sure why. Since then, the wheezing has stopped and we know that the tumor is about the same size so we'll wait for the upcoming scans to get more information on what's going on. Adrienne's counts were really good so we are happy for that though it was a bit sobering to see the tumor plain as day on the xray.

There's a young man named Morgan Phillips who did a video log (http://www.morganphillips.com/cancer.html) of his treatment for Hodgkin's. He's quite a funny guy so you might want to take some time to watch his clips. They are around 2 minutes each so it doesn't take long to view all of them. Don't worry, it made Adrienne crack up.

Change of Plans

Adrienne really wasn't feeling well last week after her treatment and we had some car trouble, so we decided to cancel our trip to Tucson. Both Adrienne and Daniel enjoy being here in Nevada and we have the pool so we're still making a vacation of it. Sadly, the boys are kicking the girls butts at Pinochle but it's lots of fun. August hasn't been too hot this year but yesterday was scorching. When it cooled down in the evening, we sat outside to look at the view and it was lovely. It makes you appreciate how good your life is so long as Adrienne is healthy.

On Her Way

Adrienne had her treatment today and is on her way home. She's really good at sleeping on the airplane so she'll probably be more rested than us when she gets here. I sometimes think she could sleep in a wind tunnel. The last few days, she stayed in her boss' 6000 square foot apartment in NYC all by herself. Can you imagine? She said she got lost trying to find her way around but she enjoyed some alone time.

Adrienne has had some itching the last few days, which always worries us a bit. There are lots of things that could cause it so hopefully it isn't her Hodgkin's growing. She'll have scans in a few weeks so we'll know more then. In the meantime, we'll keep an eye on things. Her doctor says he isn't worried so she says she isn't worrying.

Daniel is here now so this will be the first time in almost a year that we've all been together. They are just at that age where they have busy lives and don't spend a lot of time at home with their parents. This weekend, we're going to Tucson for some R&R, to see the OK Corral, and hopefully to eat some good Mexican food. Meanwhile, it's the girls against the boys for a wicked pinochle tournament. My money's on the girls.

Busy Week Coming

Adrienne is doing well after her treatment last week and her blood counts are holding steady. She'll remain on the lower dose unless the drug company makes a change. The plan is for her to fly home after her treatment next Tuesday and then I'll fly back to NY with her on August 20 for her August 21 treatment. She'll also have scans while I'm there. Let's hope this is working.

Adrienne will move to Columbia in time for orientation on August 27. Her original plan was to stay there for one semester and then return to CMC. However, she wants to stay in NY as long as possible for treatment so she'll probably stay at Columbia for her junior year. It means some changes to the classes she had planned to take and more approvals from CMC, but it's all manageable.

Better This Time

Adrienne is feeling better with this treatment than last time. Her symptoms (fever, headache) only lasted about a day and she didn't itch like she did the first time. Her appetite is better too. We aren't sure if she's getting used to it or if it's because she got a lower dose. Apparently, a patient on the trial had some adverse effects so the drug company lowered the dose for all patients. We don't know what will happen next time.

Second Treatment Done

Adrienne had her second treatment of the new drug yesterday. With the port, things went much smoother but she was still there all day. In fact, she fell asleep late in the day and by the time she woke up, the clinical trial coordinator was gone and her port was still hooked up. After paging the coordinator twice (with no answer), she decided to find a nurse and get "disconnected." She woke up with a headache this morning and was running low grade fevers by the afternoon. Hopefully this will all last a day or two like last time and she'll be feeling better for the weekend. I found out that she won't have scans until the end of August so it will be awhile until we know if this drug is working.

I added a link to Adrienne's history in the Links list. If you'd like me to add anything or write about something else, let me know. I figured out how to use Google documents to add pages and links to the blog.

I got my stitches out last week and the hand is healing just fine. I still can't do everything but at least I can take a shower and brush my teeth now.

Adrienne's History

I started this blog when Adrienne relapsed in early 2005. The goal was to keep friends and family updated on her progress. I never thought it would continue for this long or that so many people would be reading. Since she was diagnosed so long ago, I thought a history might be useful.

1995-1996: Itching began. Adrienne saw her pediatrician, a dermatologist, and an allergist, all to no avail. We thought she had hives but it turns out that the itching caused the welts and sometimes bleeding where she scratched.

November-December, 1996: A lump appeared at the base of Adrienne's neck. Her blood counts showed anemia while a chest xray was normal. By this time, she had constant fevers so it took some time to get a biopsy. The biopsy finally confirmed that she had Hodgkin's Lymphoma, nodular sclerosing type, and we were referred to Lucille Packard Children's Hospital at Stanford, to one of the leading pediatric Hodgkin's specialists in the country. Staging at that time was fairly rudimentary requiring a lymphangiogram, CT scan, and gallium scan (which showed a false negative). Adrienne was diagnosed as Stage IIIB with lymph node involvement through her neck, chest, abdomen, and pelvis, including her spleen. Her largest node in the mediastinum was 5.5 cm and the largest node in her abdomen was 8 cm. In a child of that size, she was considered bulky because more than 1/3 of her chest had tumor.

January, 1997-October, 1997: Adrienne received a study protocol known as VAMP/COP (vinblastine, adriamycin, methotrexate, prednisone/cytoxan, vincristine, procarbazine). The goal was to reduce the toxicity of the standard protocols at that time while providing a comparable cure rate. She received two cycles of chemotherapy followed by mediastinal (chest) radiation, two more cycles of chemotherapy followed by abdominal radiation, and two final cycles of chemotherapy followed by pelvic radiation. She had surgery to move her ovaries out of the field of radiation prior to her pelvic treatments, but they still received scattered radiation. During these months, she had multiple infections and hospitalizations, but no major complications. In those days, there was no neupogen or neulasta or procrit so you just had to wait for counts to come up on their own. They later published the results from the study Adrienne was part of saying it was discontinued it due to a high number of late relapses, of which Adrienne was one.

August, 2001-July, 2002: First relapse with the largest node at 4.5 cm. In the months prior to this, she had pneumonia and fevers but no apparent lymph node involvement until a routine 6-month checkup with her oncologist. Once again, she was diagnosed as Stage III with disease in the same locations as the first time. She received two cycles of ICE (ifosamide, carboplatin, etoposide) and achieved a remission, but this was a very difficult protocol for Adrienne, leaving her weak and requiring multiple blood and platelet transfusions. This was followed by an autologous stem cell transplant with BCNU (carmustine), etoposide, and cytoxan and then consolidation radiation to the upper and lower halves of her body. Her only major complication was radiation pneumonitis, which has left some residual fibrosis in her lungs, as well as ovarian failure and sterility. Adrienne's counts took a long time to recover so she was in isolation for 6 months following the transplant rather than the usual 100 days.

September, 2002-February, 2004: Second relapse with the largest node at 2 cm. Adrienne was treated with one cycle of gemcitabine and vinorelbine and achieved a remission. Then she received a modified Stanford V (mustargen, adriamycin, vinblastine, vincristine, etoposide, and prednisone) without the bleomycin to protect her lungs. After one cycle, the adriamycin was removed because she showed some heart abnormalities. In January, 2003, we went to the Seattle Cancer Care Alliance/Fred Hutchinson for a new reduced-intensity conditioning allogenic transplant with Daniel (Adrienne's brother) as her donor. The transplant conditioning consisted of fludarabine, melphalan, and one dose of total body irradiation. This transplant was very, very difficult and there were many complications, the most significant of which was graft-vs-host disease of the mouth and gut. Adrienne was treated with immunosuppressants and high doses of prednisone for a year following the transplant. At her one year follow-up in Seattle, we found that she had cardiomyopathy as a result of her original treatment in 1997.

January, 2005-October, 2005: Third relapse with nodes in the neck (referred to as cervical nodes). Adrienne started with six cycles of gemcitabine and vinorelbine, which was initially effective, but she had a small amount of progression during the last cycle. Next she had three donor lymphocyte infusions from her brother, but her disease didn't respond. In the meantime, Adrienne was named a National Merit Scholar, received a small merit scholarship to Claremont McKenna College, and started her freshman year in Southern California, where she was seen at City of Hope, an NCI-designated cancer center. They had a new type of radiation, called tomotherapy, and they were able to treat the nodes while avoiding the spine and salivary glands. The radiation was very difficult but there were no long term side effects except that she developed hypothyroidism.

December, 2005: Adrienne developed avascular necrosis (AVN) in both hips as a result of high doses of prednisone required to treat her pneumonitis (first transplant) and graft-vs-host disease (second transplant). She had bilateral core decompression surgery over her break from college and did quite well. She had a clean PET/CT scan just prior to her surgery.

March, 2005-August, 2006: Fourth relapse. Adrienne began having pain in her right hip in March. We assumed that the prior surgery wasn't effective and that she would need a hip replacement. A routine PET scan in April showed activity in the hip. After a follow-up MRI and a very painful biopsy of the bone, this was confirmed as Hodgkin's. This is a very rare situation that none of Adrienne's doctors had ever seen but it was better than some of the other possibilities, such as leukemia or sarcoma. This was treated with radiation once again. In August, Adrienne had a follow-up PET/CT, which showed resolution of the hip lesion but a new 6mm node in the right lung.

September, 2006-October, 2006: We tried to get Adrienne enrolled in a clinical trial at City of Hope with a new drug called SAHA. To qualify for the trial, she had a CT scan, which showed no abnormal lymph nodes, that is, no lymph nodes over 1 cm. Since they couldn't track her disease with CTs, she didn't qualify for the trial so we had to watch and wait.

December, 2006-present: Fifth relapse. Adrienne had a routine CT scan that showed three areas of involvement including the same spot in the right lung, diffuse disease in the spleen, and an epigastric node near the liver. This relapse was confirmed by a PET scan, with the largest node being 1.3 cm. City of Hope suggested that she get tomotherapy radiation again, but given the lung fibrosis from her first transplant and the widespread nature of this relapse, we didn't feel comfortable treating with radiation. We decided to consult another doctor at Memorial Sloan Kettering in New York, who works closely with City of Hope. The plan they agreed on was to try a drug called valproic acid, similar to SAHA but readily available as an anti-seizure drug, and to watch Adrienne very closely. Adrienne took the drug for 5 months while her disease progressed very slowly. In May, 2007, she went to New York to be treated and to work at an internship. During the scans there, we found that she had a 50% progression in a period of about six weeks with the largest node now being 3.8 cm in the right lung and 3.7 cm in the spleen. Adrienne recently started a new clinical trial that we hope will keep her disease under control.

New Port

Adrienne got a new double lumen port-a-cath today. This is her fourth central venous access line since 2001. You might recall that she got the last one out in May because it wouldn't draw and she already has a new one. They just couldn't find enough good veins and were having trouble drawing blood. That's what a million different chemos will do, unfortunately. At least this way, she won't feel quite so much like a pin cushion. She's getting used to the adult world with less sedation but she says she doesn't mind so much.

Better Today

Adrienne is definitely feeling better today and the fevers have stopped. She still has little appetite but is able to get enough down so she doesn't feel too weak. She's been taking the bus the last few days because sitting sideways with no natural light on the subway made her feel ill, but she was able to take the subway to work this morning.

On Monday, Adrienne will have a new port placed. I don't think anyone anticipated how difficult it would be to get an IV into her and she needs two for the trial so they can give the drug and draw labs at the same time. She'll still need one IV for the day they give the drug but they can use the port for everything else.

Thank you for the notes and comments. Adrienne is overwhelmed by the support and love. She said, "wow, I didn't know so many people read my blog!"

About the Same

Adrienne is still having fevers and has little appetite, but she went to work this morning. Tylenol is helping with the fevers and soup is keeping her nourished and hydrated. Please leave her a comment so she knows that we're all here, hoping she feels better soon.

Spoke Too Soon

After feeling fine with the infusion yesterday, today's been a tougher day with intermittent fevers, loss of appetite, itching, and problems doing blood draws. Since the drug will affect her blood counts, Adrienne can't have sushi for awhile either, much to her disappointment. Tonight, it'll be a can of chicken soup for dinner. It looks like she'll definitely need another port since even the "IV team" is having trouble finding veins, so they're working on that now. We're back to the old one day at a time.

It's a New Day

I'm not usually the sentimental or spiritual type but we're all praying that today starts a new beginning for Adrienne. She finally got the new clinical trial drug and is feeling no ill effects, not even nausea. It took a bit longer to get started than we thought because of the need for approvals at all levels of Columbia and the drug manufacturer, but we finally got there. To her disappointment, she's going to miss the opening of the new Harry Potter movie tonight, but I'm sure she'll have another chance. As I said, I'm just glad she's feeling well and is in good spirits.

I seem to be on a minor run of bad luck that I hope is done now. Last week, I fell down some dark steps onto concrete with a glass in my hand. Part of the glass wound up in my hand, and I have a small break. I had surgery yesterday to remove four pieces of glass so I should be on the mend soon. My fingers look like sausages but this too shall pass. It's all small compared to what Adrienne deals with every day.

I hope everyone is enjoying their summer. We're now in the midst of the hottest days here in Las Vegas. Thank goodness for air conditioning.

Dates on the Calendar

Adrienne saw her doctor yesterday so now we have a schedule. She'll have a bone marrow biopsy and echo this week. Then on Monday, she'll get the new drug as well as a number of before and after blood tests. She has to go back on Tuesday for a blood draw 24 hours after the infusion. After that, she'll have an infusion every other week with blood work in between. Two other Hodgkin's Disease patients have done this trial and both have responded, which is great news. She can come home on August 6 and will return to NY on August 19. Of course, I already purchased a ticket for August 4 so I'm going to call the airline and beg them to waive the change fee.

Really a Plan

We've been waiting all week to find out which clinical trial Adrienne will start. So as not to be too annoying, we've been taking turns calling each day and each day, they said they'd call by the next morning. There were a few issues that complicated things. Many trials exclude patients who have had allo (donor) transplants, some exclude patients who have had an auto transplant, and Adrienne has had both. The other issue turned out to be her heart heart and lung damage from previous treatments since one of the drugs has shown heart and lung damage in mice.

Adrienne will be getting a drug called SB-743921, which is a type of kinesin spindle protein (KSP) inhibitor. It is "a novel small molecule therapeutic targeting human mitotic kinesins for applications in the treatment of cancer and other diseases." Don't worry, we don't really get it either but the basic idea is that it inhibits a protein that cancer cells need to divide, and therefore grow. This is given as an IV treatment every two weeks. Adrienne will try it and we'll decide if she should get a port later. Right now, she's enjoying being port free. She also has to get a bone marrow biopsy for the trial, not pleasant, but not too awful either. We've requested sedation since they don't generally sedate adults for the procedure.

It's getting really hot in New York, just in time for the holiday week. The heat combined with the cardiac meds really bother Adrienne as they make her blood pressure drop so she's doing everything she can to stay indoors, though she can't avoid the outdoors altogether. At least she has air conditioning in her dorm.

A Plan - Sort Of

Adrienne saw her doctor today. The PET scan doesn't show anything new, which is good, but the tumors are certainly bigger (2.6 x 3.7 x 3.1 cm in the lung and 2.1 x 2.8 x 3.4 cm in the spleen, no change in the epigastric node). We had been talking about a trial with a drug called PDX combined with gemcitabine but the doctor is concerned about side effects of this regimen in light of the fact that she doesn't have any B symptoms. Now we are waiting for approval for one of two other clinical trials where the drugs have little or no side effects. We should have an answer today or tomorrow. In the meantime, Adrienne will go off the valproic acid since it obviously isn't helping. If she starts itching, she's supposed to call the doctor and get something that won't make her sleepy like Benadryl does.

Otherwise, Adrienne is doing well. She recovered from her respiratory infection of last week and has some fun social activities planned for this week. She and her roommate get along great, which is wonderful after her disappointing roommate experiences at CMC. I think we were all slightly concerned that she would find New York big and impersonal but she really enjoys it. I guess she really is a city girl at heart.

A few people have asked if Adrienne is transferring to Columbia. Originally, she had hoped to go to Prague for the fall semester but, given the status of her disease, it didn't seem like a good idea. After seeing the doctor in New York and discovering that she could do a semester "abroad" at Columbia through the off campus study office, she decided to apply. Technically, she's still a CMC student and all of her Columbia credits will count toward graduation there. It'll be interesting for her to attend a big city university after being at a small liberal arts college.

Tough Weekend

Adrienne was sick all weekend, probably with a viral infection, so she spent most of it in bed. She's definitely feeling better now. I asked her to call the doctor to make sure it wouldn't affect the PET scan tomorrow, and they said it would be fine. We'll probably wait until she sees the doctor on Monday to get results. In the meantime, we're discussing the treatment options on the table.

Here's a great picture of Adrienne from CMC. Her hair is even a bit longer than this now since she's trying to grow it longer.

Oops, More Tests

Last week, when I posted about Adrienne's CT, I didn't realize that I wrote down (heard) the numbers wrong. The node in her lung has in fact grown quite a bit in four weeks, from 2.6 cm to 3.3 cm (I thought the nurse said 2.3 cm), and the node in the spleen went from 2.3 cm to 2.6 cm. The doctor is wary of putting her on an aggressive treatment since she doesn't have any symptoms and we are too, but this situation makes us very nervous. Adrienne will have a PET scan next week and see the doctor in two weeks when we'll make treatment decisions. In the meantime, we are having City of Hope send CDs of her scans from the last six months. There are still a few options on the table but we need to balance the side effects with the potential benefit since every option has some chemotherapy component to it.

Adrienne is still having a ball in NYC. Last Friday, she met a bunch of Columbia students at a party at her apartment (her roomate is a Columbia student) and on Sunday, she had dinner with a whole load of cousins on my dad's side of the family. I can't believe that my Uncle Joe, my dad's brother, is 87. My dad would have been 74 in May. My cousin Andy's wife is due to have a baby in about 10 days and Adrienne is ready for some newborn babysitting. Andy and his wife, Lisa, work at Dateline at NBC and Adrienne has been promised a tour of the studios.

Don't Try This at Home

QUICK UPDATE: Adrienne had her CT scan yesterday. She has some progression in the spleen but everything else looks stable. She sees the doctor on Monday to decide next steps but it sounds like there are a few options on the table.

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I never expected that we'd see so much wildlife in the desert. We have rabbits, quail, snakes, and lizards, all pretty harmless. We even found a baby duck in the pool the other day. Yesterday, I met another of our "neighbors." When reaching down to pick up what I thought was a leaf dragged in from the garage, I felt a pinch like a needle prick on my left index finger. Then it really started to hurt. I turned on a light, and sure enough, it was a scorpion. After stepping on it and putting it down the garbage disposal, I went to my neighbor's and called Curt. As I suspected, the scorpions in Nevada aren't deadly and you just have to wait it out. I don't even know how to describe how bad the pain was, even vicodin didn't touch it. I was told it would only last a few hours. After 10.5 hours with my hand in ice, it finally felt good enough that I could go to sleep. This morning, it's a bit sore and my lower lip is numb, but otherwise I'm fine. Needless to say, I'll be more careful in the future about touching anything on the floor.

Adrienne is enjoying New York and her job. She met some other CMCers last week who live there and they've been having a good time, though Adrienne says she just can't stay out on work nights because she's too tired. Tomorrow she has a CT and then she sees the doctor on Monday to figure out the next steps. I'll know more early next week.

No Medical News

Adrienne won't see the doctor until June 11 so there isn't much to report medically. She has a CT on June 7 before seeing the doctor. I guess they want it done on their equipment, as most places do, but I worry about all the xrays she gets.

New York is going great and Adrienne is interested in almost everything she sees, including watching a guy get arrested in a sushi restaurant on Saturday night because he tried to leave without paying. That's NY for you. She likes the people watching, the food and activities, just about everything. The internship is going well and she's learning a lot, including that she doesn't want to be a stock analyst for a living. Oh well, it's a great experience.

The apartment/dorm is coming along. She now has the all important shower curtain and has figured out how to toast bread on a gas stove. I know, it made me worry too, but she promised that she was careful.

New York Update

Wow, it has been a whirlwind few days. Adrienne is settling in nicely in her NY apartment. We thought it was more of a dorm but it really is an apartment with a full kitchen and shared bathroom. She isn't fully moved in and needs lots of things (most importantly a shower curtain) but she seems to be enjoying life thoroughly. She started her internship yesterday and she's excited to have her own cubicle, e-mail address, and phone extension, as well as a drawer with her name on it in the company frig! And they seem to be letting her do a bit of everything, including calling England to do some research.

We saw the doctor on Monday and, for now, things are a bit up in the air. The doctor doesn't think the valproic acid is helping and wants to get Adrienne on something new as soon as possible. The two clinical trials that he wants to put her on do not accept patients who have had allo transplants. He is trying to get an exception for her since she is so well engrafted. If he can't do that, she'll go on a very low dose oral chemo and he promises there are no side effects. She'll stay on that until the fall when another (more promising) clinical trial opens up. The trial is being written to allow patients with allo transplants who are well engrafted and is awaiting FDA approval. We are supposed to have a firm plan in two weeks.

Adrienne is enjoying everything that is New York. She's becoming a pro at getting around on the subway and is really enjoying the people watching, my personal favorite passtime. She also saw her first celebrity in NY, an actor from Prison Break riding his bike with his family. We are all very grateful that she has this opportunity.

Quick Visit

Adrienne is home for just a few days before leaving for New York on Friday. We have a lot of things to take care of in a few short days, with the most important being getting her "deported." Tomorrow, the port that's been there for almost 2-1/2 years will be removed. Today we met the surgeon and really liked her. She usually doesn't work on people over 18 but she made an exception because my friend's husband (a PICU doc) asked her to make an exception for Adrienne. She knows almost every surgeon Adrienne ever had at LPCH so it was nice catching up. Small world.

Sometimes, I try to express my thoughts and feelings about Adrienne's disease but can't find the words. I was looking at Alese's web site and read what her mom wrote, and she said it very well. Here's a link if you're interested: http://www.alesecoco.org/Parents.html#mom. Also take some time to read Alese's journal. Her parents want to start a foundation to research cures for Hodgkin's Disease for people like Adrienne, Alese, Erika, and many others.

These are nervous days for us and we're trying not to think about Adrienne's disease all the time. The doctor says it could take 6-10 months before Adrienne has a response to the valproic acid. It's hard but as long as Adrienne is feeling well, we're going to wait for a response. We don't think intensive chemo is the answer for her and we'd rather she enjoy her life for the next few years than spend it in doctor's offices and in the hospital, or worse.

Emotional Week

On Monday, our friend Alese passed away due to respiratory complications resulting from her Hodgkin's Disease treatment. Alese was diagnosed in 2002 and since then had a story similar to Adrienne's. In the past months, her disease became very aggressive and she tried very difficult chemos to get it under control. Those chemos suppressed her immune system so much that she got a fungal infection that ultimately took her life. Our prayers go out to Alese and her family.

Adrienne had her CT scan yesterday and we got the results last night, not exactly what we hoped to hear. The tumors in her abdomen and spleen are stable but the one in her lung showed a fair amount of progression. It is now nearly 3 cm. We've asked the doctors at City of Hope and in NY to come up with a new plan to start when she goes to NY. There are a number of options on the table but we probably won't know which one she'll do for a couple of weeks.

Adrienne is feeling well except for being tired, but that's probably because she doesn't get enough sleep as a busy college student. Emotionally, it's very hard for all of us living from scan to scan. With Erika and Alese's deaths under very similar circumstances, we are staying particularly vigilant and wary of treatments that are just too risky. We definitely don't want to go with "big guns" chemo and are looking for something that will keep her disease under control with a minimum of side effects.

Plans for NY

Adrienne had one exam this week and she has two more next week. I'm flying to California on Friday to help pack her up and drive her back here to Las Vegas. She's putting most of her stuff into storage and just bringing what she needs for New York so the packing shouldn't be too bad.

The plan for the summer and fall is becoming clearer. We'll fly to New York on May 18 and move Adrienne into the dorms at NYU on May 20. She sees the doctor on May 21 and starts her internship on May 22. She'll stay in NY until August 5 and then will come to visit us here in Las Vegas as well as her dad in Southern California. She has to be back in NY on August 27 for orientation and classes begin just after Labor Day. We're planning to fly out for Thanksgiving. We were there the same time of year in 2002 for Adrienne's wish with the Make a Wish Foundation and it was really, really cold, but a lot of fun. I think we'll skip the Macy's Thanksgiving Day Parade this time.

Adrienne has a CT next Tuesday. It feels like they come faster and faster. She's now on a 6-week schedule for CTs, with PETs every second or third time. These continual scans are mentally taxing but we need watch her closely to make sure her disease doesn't get out of control.

Lots of News

I flew to California yesterday to spend some time with Adrienne and accompany her to her doctor's appointments today. Adrienne picked me up at the airport, and after a nice dinner in the village of Claremont, we went back to the hotel and watched Grey's Anatomy in bed. She was quite tired after a few late nights but otherwise, she looks good.

We got up early this morning and checked e-mail. Hmmm, there was a message from DHL saying that Columbia is sending her a package. A turn down usually comes in a regular letter through the USPS, an acceptance comes in a package, but we didn't want to get too confident so we put it out of our minds for the day.

We arrived at City of Hope very early on Friday morning. Adrienne was scheduled for a pelvic ultrasound and was supposed to have a full bladder but, despite drinking 50+ ounces of water, her bladder wasn't full enough. So, we went off to the clinic to draw labs and wait for the water to go to the right place. Once again, Adrienne's port wouldn't draw and she made the decision pretty much right there to get the port out as soon as possible. After a needle poke, we went back to radiology for the ultrasound. Hmmm, the problem, an enlarged uterus on the last two CTs, looked normal on the ultrasound. Her oncologist compared the ultrasound and the last two CTs with her gynecologist, and he thinks the valproic acid caused some positive changes in the endometrium though he's not sure why. Just an interesting and positive development. There has never been a case where Hodgkin's Disease appeared in the endometrium but, as Adrienne's doctors have said, she doesn't follow the rules.

Adrienne had an echo and saw the cardiologist. Good news: her cardiac function is stable and near normal since she's taking the two cardiac meds. The doctor increased the Coreg dosage once again and wished her well in New York. The plan is to return in December and not see a cardiologist in NY unless she has a problem. That's very good news after the last few years of constant cardiology appointments and tests.

After we returned to CMC late in the afternoon, there was an e-mail from Columbia welcoming Adrienne as a visiting student. This was very exciting news. So, the plan is for her to go to NY for the summer and do her internship while living in the dorms at NYU. She'll come home for a couple of weeks in August and then she'll move into the dorms at Columbia. Luckily, they guaranteed her housing so that's one less thing to worry about.

It turns out City of Hope can't get Adrienne in to remove the port next week so we're going to see if we can arrange to have it removed here in Las Vegas. If not, it'll have to wait until she goes to NY. Adrienne will have another CT in about 10 days and we hope to see stable disease then. Her oncologist is very excited about the responses to valproic acid in other patients and hopes that Adrienne is responding well also.

Busy Week

There isn't much to report medically. Adrienne is still recovering from her respiratory infection. She has a bit of a cough (productive) and congestion but that can linger for a long time. I'm going to Claremont next Friday for her doctor visits. She has appointments with her BMT doctor, oncologist, and cardiologist, plus a few more tests. It often seems like the tests are never-ending, but often, they're reassuring. We're looking for good results on her echo (ultrasound of the heart) since she's been taking these new medications for awhile now.

At school, this has been a very busy week. Adrienne completed all of her projects and papers for the semester, which meant a lot of late nights. She's hoping to catch up on her sleep this weekend. The only thing left is final exams the second week in May. Then she'll spend a week here in Nevada and it's off to New York. We're planning to see Spamalot here in LV, which is getting rave reviews.

Our backyard and pool are finally complete. This is the biggest home project I've ever been involved with and I'm glad it's done. We still have a few bugs to work out, but all in all, it turned out beautifully. When the weather clears up, we'll take some pictures to post.

Doing Better

Adrienne is feeling much better than she was last week, though she continues to be fairly tired. Her hemoglobin dropped quite a bit in the last few weeks, not enough to need a transfusion but enough for her to feel the difference. The valproic acid can make her tired too. Hopefully she'll get a much needed bounce so she can finish her projects and exams for the semester.

I have a call in to the doctor in NY to make sure we're on the right track and to find out what he has in store for Adrienne over the summer. She is very excited to spend an extended time in her favorite city in the world. Adrienne should hear from Columbia in the next two weeks so we can finalize plans. In the meantime, she is signing up for a new dorm room and classes at CMC in case she comes back to California in August.

Sunday, President Bill Clinton is speaking at CMC. I can't wait to hear about it. There will be a video of the presentation available a few weeks later on CMC's web site so I'll post the link when it's available.

Tough Week

Adrienne started the week with a cough that turned from mild to very bad in a few days. To avoid a trip to City of Hope, she decided to go to the health center at school. They told her to come back in a few days if she didn't feel better. After I spoke with her oncologist, she got to take a trip to City of Hope later that day for a real checkup. Adrienne had a chest xray and physical exam plus labs. After determining that there was no pneumonia or progression of her disease, the doctor put her on a course of antibiotics and cough medicine with codeine. Adrienne then spent a day and half in bed, but is finally feeling better today. For other people, having a viral infection isn't fun but it usually doesn't cause much harm. For Adrienne, it can go from bad to worse very quickly because Hodgkin's Disease affects her immune system, so we watch these things very closely.

Adrienne is feeling better today, though her sinuses are still bothering her. Her sinusitis has been chronic and she would like to have surgery, but there never seems to be a good window of opportunity when she's in remission and has free time. Hopefully, this will be a quiet week as Adrienne is in "project mode" at school and is very busy. President Bill Clinton will be speaking at CMC next Sunday so hopefully Adrienne will be feeling great by then.

PET Scan

Adrienne had her PET scan last Friday and I just got the results this morning. We still have a few questions since the radiologist compared it to one done in April, 2006 rather than to the one done last December. Another reading has been requested but the doctor is out for a few days for Passover so it will probably be the end of the week before we get another report. In any event, the PET aligns very closely with the CT. The area in the humerus (shoulder bone) in December's PET doesn't show on this one, which is good news. The only area of concern is new uptake in the thigh, which is very strange since Adrienne doesn't have pain there. We aren't so concerned about the thigh itself but rather spread of her disease.

Adrienne's doctor is very pleased with how she's doing and would like for her to stay the course, so we've agreed. He seems confident that there will be a curative treatment for her in the foreseeable future as long as we can keep things under control until then. This is a bit uncomfortable for us, watching and waiting, but Adrienne feels well and we don't want to upset things unless absolutely necessary. So, we'll finalize plans for New York in the coming weeks. She already has a great summer internship in NY and a place to stay in the NYU dorms for the summer. Columbia postponed the date when they would let visiting students know if they're admitted so the fall is still up in the air. They promise an answer by May 1 and Adrienne needs to tell CMC of her plans by August 1, so we're good there.

Otherwise, things are going well. Prince (our sheltie) already fell in the new pool. I should say, he ran into it trying to get to a splash of water. We had a good laugh over that. The rest of us can go in after Wednesday, which is nice since it has now warmed up here in Nevada. We still have some landscaping to do but I can see the light at the end of the tunnel.

Adrienne is keeping busy and is looking forward to seeing President Clinton at CMC next month. Her college is amazing and we're so happy she can enjoy it, even though she studies incredibly hard. If you get a chance, go to http://www.cmc.edu to see some of the incredible things they do. If you look hard, you can find a current picture of Adrienne at the Kravis Leadership Institute.

More on Scan Results

I got a copy of the actual CT report and spoke with one of Adrienne's doctors yesterday, Dr. K, an adult lymphoma specialist and the head of City of Hope's lymphoma drug research program. Dr. K is very pleased that Adrienne's disease is stable in the lungs (the most critical location) and that the progression in the spleen has slowed down, even though it hasn't stopped yet. Adrienne's spleen isn't functional as a result of radiation so the only potential issue is pain, which she doesn't have. The PET scan on Friday will show us what's happening in the bone. Again, Adrienne doesn't have any pain but we have to be concerned about the lesion in her shoulder bone getting into the bone marrow, which would be difficult to treat.

The experimental drug experience is very nerve racking since you don't know how someone will respond. Add to that, the HDAC inhibitors like valproic acid take time, often months, to start working. Dr. K has one patient who was getting ready for hospice care and is now doing well on this drug and others who seem to be responding as well. He says, "Time is important, because we are on the brink of some findings about HL that might be immediately helpful." Sounds good to us.

Adrienne did an all nighter Sunday night finishing up a paper. I worry when she does that but she was working with other people and had a good time. She said it was a good bonding experience. Last night, when we spoke, she said she felt fine and was off to see Phillip Zimbardo who ran the Stanford Prison Experiment and wrote a book about the Lucifer Effect, why good people do bad things. Actually, she said she's feeling great but she almost fell asleep during the talk.

Curt has had a few upsetting days. After all of his scans and tests and getting a clean bill of health, his sister in Seattle was just diagnosed with esophogeal cancer. She seems to be taking it as well as you can take something like that. Curt will probably go up for a visit in the next few weeks.

Scans Today

Some Progression

Sorry for the late post. I love City of Hope because we get quick results. I hate City of Hope because we get quick results. Adrienne's disease is stable in the lungs and pelvis but she had moderate progression in the spleen. We aren't sure about what to do next except to wait until the PET scan and then make some decisions. We'll keep you posted.

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There isn't much going on this week. Adrienne has been very busy at college with what she calls "project month." She's working on a big survey exploring attitudes about blood donation. Luckily, she can conduct one survey for two classes (Research Methods and Social Psychology) but she still has to write a report for each class.

Adrienne has a CT today about midday. We're all hoping for good results but we probably won't hear until Monday. A reduction in her disease would be wonderful but we'll be happy with stability. Next Friday, she has a PET scan, which is more useful for her because disease in the bone doesn't show on the CT and we need to watch the lesion in the shoulder bone as well as the hips. She isn't having any pain or itching so we take that as a good sign.

We have another friend with Hodgkin's Disease who is going through a difficult time, Alese Coco. We met the family while looking for clinical trials for Adrienne, and it turns out Alese is treated at City of Hope, where Adrienne is seen. Her family referred us to Dr. O in New York and we talk frequently sharing ideas and our concerns for our girls. If you get a chance, go to http://www.alesecoco.org/ and leave a message in the guestbook.

Relaxing Week

Adrienne arrived here last week for her spring break, tired and with a cold. She is now much more rested and her cold is mostly cleared up. Yesterday, she dragged me out to do some shopping, which I hate, but I toughed it out. She got some nice things for New York and a dress for an upcoming black tie event with the Kravis Leadership Institute. It's wonderful to see the confidence and maturity she's gained in nearly two years at Claremont McKenna College. I can hardly believe that she'll be a junior and off to the east coast in just two months.

We get these nice little breaks and then back to reality. Adrienne has a CT scan next week and a PET scan the following week. We're just hoping that her disease remains stable and she can remain on the valproic acid. We are ever mindful of how quickly things can get out of control, as we've seen with so many of our friends, and we're thankful for what we have today.

After all of Curt's tests and a biopsy on his thyroid, all is well. The nodule is a goiter, similar to what his mother had as a teenager. He needs to be checked out again in a few months but at least we have a little break until then.

On a more fun note, our enormous backyard project is almost complete. Our house here in Henderson didn't have a pool, though it did have a spa. We decided when we bought it that we would add a pool. This project (or the mess as I prefer to call it) started last November and we've had a number of technical and weather delays. Next week, we are on the schedule to do the plastering and add water. The weather has been unseasonably warm here and we could have used it this week, but we're happy to have it ready for the summer. So, if you're coming to Las Vegas, we'd love to see you. No more house projects for me for at least a year! I'm sure Curt will be happy about that.

PFT Results

March 7, 2007

The pulmonologist compared Adrienne's PFT to two previous ones. Last year's was down a bit and this most recent one is very similar to the one done three years ago. Thus, there isn't really a change and he described it as a "mild restrictive defect." So, in the end, it was just a difference in interpretation. This is good news.

Adrienne will be coming home tomorrow for her spring break. The port is still a problem so we'll go on Friday to try to sort it out. Adrienne thinks it must be the valproic acid causing the problem since the issues began when she started that drug.

March 2, 2007

I got a copy of Adrienne's Pulmonary Function Test report yesterday and the results were a bit concerning. Her problem, a result of interstitial pneumonitis after her first transplant, was previously classified as a "mild restrictive defect." The latest report calls it a "moderate restrictive defect." Many medical issues are described as mild, moderate, or severe, each describing a worse condition. I don't know if this is a difference in interpretation or if it represents a real change. Yesterday, I had two previous PFT reports sent to City of Hope for their pulmonologist to compare. I was concerned that the node in Adrienne's lung might be causing a problem but the doctor said this is definitely from the pneumonitis and that the node isn't causing a problem. Our understanding was that lung problem would remain stable unless Adrienne had other treatment, and we've purposely stayed away from drugs like bleomycin that have lung toxicity.

Adrienne completed her application to be a visiting student at Columbia University in the fall. She should have an answer in mid-April. Here's an inciteful paragraph she included in her essay:

Now at Claremont McKenna College, I try to be a normal college student despite my cancer. I am majoring in Psychology with a Leadership Sequence; I currently work as an intern at the Henry Kravis Leadership Institute; and I am the vice president of Straight But Not Narrow, an activist club on campus. Though I’ve now had cancer for most of my life, I no longer plan my life around it; instead, I try to plan cancer around my life.

Holding Steady

Adrienne is doing well. She had checkups with her transplant doctor, oncologist, and cardiologist yesterday, as well as a pulmonary function test to assess her lung function. Adrienne has some fibrosis in her lungs as a result of pneumonitis after her first transplant so we watch her lungs closely. Sometimes it's hard to distinguish between heart and lung problems. Results from the PFT should be available in the next week. The last PFT showed a drop in the diffusion (that is, how oxygen gets from the lungs into the blood) and an increase in lung capacity so we're interested to see how her lungs are performing. At the next visit on March 23, Adrienne has a CT, echo (ultrasound of the heart), and sees all the doctors again. This will be a long day at the hospital again. We're hoping that her Hodgkin's Disease hasn't grown more.

Once again, Adrienne's port isn't drawing properly. They were only able to draw a small amount of blood after two doses of TPA yesterday. Adrienne will go back in about 10 days to try again.

Today (Saturday) is the big leadership conference that Adrienne has been working on for months through her internship at the Kravis Leadership Institute. This has been a great learning experience and now she gets to see all of her hard work come together. We're sure things will go smoothly. Next weekend, Adrienne is off to Austin, Texas to attend another leadership conference. I'm not sure how she does it all.

Very Quiet Week

Curt is out of town so it's just me and the dogs. They are such good company especially with the big rain storm we had the other night. Since we don't get a lot of rain in Las Vegas, the houses don't have gutters. The rain pours out of downspouts from the roof and it's really noisy. Luckily it only lasted one evening, not like the days and days of rain we got in the Bay Area, and now it's warm and sunny.

Adrienne is having a good week. After two doses of TPA on Friday and yet another visit to City of Hope on Saturday, her port is finally working again. This is such a relief as the alternative would be to remove it and put another one in. While this is considered minor surgery, it's quite painful.

The doctor increased Adrienne's dose of valproic acid so now she's on double the dose she started with. So far, she still doesn't really have side effects and, thankfully, her itching has stopped the last few days. Hopefully the next scans will show some improvement or at least stabilization.

Schoolwise, Adrienne has been busy with exams but last night she got out to an opera, yes I was surprised too. She's more the Broadway sort than the classical sort. She didn't like the production very much (something modern) but she had a good time anyways.

CT Results

This past week has been a bit overwhelming with Erika's funeral last Saturday, Adrienne's scans and checkups this week, and some other things here at home.

Erika's service was lovely and we enjoyed seeing people we hadn't seen since our move. It was wonderful to see so many people there. It seems strange to be happy at one moment and so sad the next. Chris posted lots of pictures of he and Erika over the last several years at: http://flickr.com/photos/cmaxwell/sets/, including pictures of when she was healthy.

Adrienne had her CT yesterday and, as we expected, she's had some progression of her disease. The largest node is now 2.2 cm in her lung. The node in her spleen is 1.8 cm and the other node near her liver is unchanged at 1.4 cm. The CT doesn't show what's happening in the bone but Adrienne doesn't have any pain there. Given Adrienne's recent itching, we're just relieved that there wasn't more progression. The doctor would like to increase her dose of valproic acid. If there isn't a response in the next month or if her symptoms progress, she'll start on chemo every other week. We know that the valproic acid takes time to work, typically 2 to 3 months, so we don't want to panic just yet.

Adrienne has been having trouble with her port and it won't draw blood now. They tried TPA yesterday, which didn't work. She'll go back to City of Hope this afternoon to give it another try. She is definitely feeling the pressure of doctor's visits and travel along with her Kravis work and school, but getting the port to work is a high priority. If they can't fix it, she'll need another surgery to remove it and place a new one.

On the home front, Curt has a 2 cm nodule on his thyroid. He has a biopsy the week after next since he's out of town for business next week. Chances are this is benign and there is a history of goiters in his family but it's one more thing on the big plate of things.

Overwhelmed

Our friend Erika lost her very long battle with Hodgkin's and Non-Hodgkin's Lymphoma on Tuesday. We have lost one of our closest and dearest friends and our lives will never be quite the same without her. Services are being held on Saturday morning so Adrienne and I are flying back to the Bay Area tomorrow. Funerals are never fun and, besides the day of my dad's funeral, I'm sure this will be one of the hardest days of our lives.

The last week or so has been stressful to say the least. Adrienne was quite distraught on Sunday as her itching got much worse and she's concerned that her disease is growing too quickly. She took some Benadryl, which helps the symptoms but makes her sleep. The last couple of days are better but she's having a challenge keeping up with her studies with so much going on. A week from today she has scans to see how things are going. In the meantime, the only thing to do is keep taking the valproic acid and try to not worry too much.

Adrienne had hoped to go abroad to Prague next fall, but with this most recent relapse, she changed her mind. She didn't want to get her hopes up and then have to cancel her plans at the last minute. Instead, she decided last week to apply as a visiting student at Columbia University next fall. That way, she can live in New York for about seven months (her dream) while getting treatment with Dr. O'Connor. This seems like a great idea and CMC will pay her scholarship to Columbia. Now she just needs to finish the applications to CMC and Columbia and wait (we sure hate that waiting game).

Not Much to Report

UPDATE, Friday, January 26

Chris is updating Erika's blog again. I'll only post here if he isn't able to.

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Thank you for all the comments and e-mails about Erika and your concern. I'm sorry I didn't update today but it's been tough to get information. I spoke with Chris this morning and Erika has been a lot of pain. He thought it was the chest tube but wasn't sure. I spoke with her dad this afternoon and it didn't sound much better. Hopefully the tube will be out soon and she'll be more comfortable.

Adrienne is doing well with the valproic acid except for a rash on her face. I haven't seen it and I'm sure it isn't as bad as she thinks, but she's a bit annoyed. She's applying to go to Honduras for a week in March to teach English to children there. I was a bit nervous but her doctor thinks it's okay as long as she doesn't drink the water. She also planned to go rock climbing this weekend but we all agreed that it might be better to try it indoors before going out to do the real thing. You can tell how much better she's feeling since getting used to the current dose of the Coreg and starting the thyroid replacement. Luckily the valproic acid isn't making her tired because some people get a lot of fatigue from it.

I'll update more when I know something.

For Erika

UPDATE: Tuesday 1/23: I got a bit of a scare last night when I tried to call Erika several times and no one answered. Earlier in the day when I talked with her sister, she was sleeping but doing well. It turns out her dad had disconnected the phone and she is doing okay. Yesterday, they removed one of the chest tubes and last night Erika got chemo. She didn't sleep much last night but is resting comfortably this morning.

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UPDATE, Monday 1/22: Between respiratory therapy and a fever last night, I didn't get to talk to Erika yesterday but I spoke with Chris, her sister, and her oldest friend. Erika was doing well early in the day but spiked a fever last night. She was resting comfortably though after a nice dose of Tylenol. Things are holding steady for the time being. The swelling in Erika's arm was from IVs and should resolve on its own. No word yet on when Erika will start chemo, particularly with this new fever.

A little Adrienne update: She started classes last week. She decided to take three classes since the Research Methods class counts as two credits. The new medication is making her a bit tired but nothing like before she started the thyroid replacement. She also has some small bumps on her face, which should go away as her body gets used to the drug. She was itching a few days ago (a common symptom of Hodgkin's Disease) but thankfully that was better yesterday.

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UPDATE, Sunday 1/21: Erika's pain is under good control but she's sleeping a lot with the fentanyl. Respiratory therapy and oxygen are helping her to breathe better and she is comfortable. The shingles have dried up and Erika is hoping to get chemo this morning. She has a lot of swelling in one arm and they think she might have a clot, which complicates things a bit. The dogs are being looked after and they have plenty of home cooked food. A lot of people have offered to help but Erika and Chris say they are fine and thank everyone for their offers.

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UPDATE, Saturday 1/20: I was actually able to talk to Erika on the phone yesterday. She was more awake and her pain is under good control. Unfortunately, she now has shingles which doesn't help the pain situation. She spoke to her doctor yesterday and would like to try chemo again if the lesions can dry up quickly. The chemo only has about a 5% chance of working but she wants to try. That's our Erika. She is still asking that people not come to visit her. Please e-mail me at alison95070@yahoo.com if you have more questions as we don't want to bother Chris.

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Adrienne and I met Erika more than 3 years ago at a Team In Training event. Adrienne was six months out from her second transplant and Erika just a few months out from her first transplant. We became fast friends and had instant bond. Adrienne and Erika would sit very closely talking about how this drug or that procedure felt while the rest of us looked on, feeling like outsiders, but we didn't mind. Over the last few years, we've spent many days together having fun with our dogs, cooking, discussing decorating tips, whatever interested us. And we've shared the tough times with both Adrienne's and Erika's relapses and sharing our hope for a cure. When we moved earlier this year, we all cried but we remain as close as ever, talking on the phone or sending e-mail daily.

Erika's disease has progressed very quickly over the last months. She has been in the hospital since just before Christmas trying to figure out a problem with her lungs: infection or disease. Yesterday I visited with her and her family, arriving just a little while after the doctor was there to tell them that Erika's lungs are full of tumor. Erika will remain at Stanford for her remaining few days with her family at her side. She is getting plenty of pain killers as well as transquilizers to help her stay calm, but she is aware that we are all there. She is not up to visitors and her family has asked that people stay away for now.

Many of you who read this blog know all of us. Erika is tiny, just 5 feet tall and about 75 pounds, just the right size to be Mickey Mouse at Disney, which she did during her summers at college. She has more spunk and drive than anyone five times her size and she has fought this disease with everything she has. Please pray for her and her family during this time that no one should ever experience.