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.
Wednesday, January 24, 2007
Friday, January 19, 2007
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.
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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.
--------------------------------
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.
--------------------------------
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.
--------------------------------
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.
Friday, January 12, 2007
New Treatment Started
Adrienne saw her new adult oncologist as well as her pediatric doctor yesterday at City of Hope and started the valproic acid. She will take it three times a day and there will probably be several dose adjustments over the next few weeks. Most people tolerate it well and we hope she does too. Some people have electrolyte problems on it so she is drinking her EmergenC just like when she was training for marathons. The drug takes time to work, unlike chemo. She will have a CT scan in a month to see if there is any response, though that might be too early to tell. If her disease remains stable, we'll be happy with that.
Otherwise, things are going well. Adrienne is working at the Kravis Leadership Institute this week and classes start next Tuesday. Her schedule is set but she's hoping to get into an evening seminar course that was full but she's high on the waiting list.
Some very exciting news: Adrienne has an internship this summer at a NY investment company. This is an amazing opportunity and we are all very happy for her. We still need to figure out housing for her in the city but we have several leads and are sure it will all work out.
Otherwise, things are going well. Adrienne is working at the Kravis Leadership Institute this week and classes start next Tuesday. Her schedule is set but she's hoping to get into an evening seminar course that was full but she's high on the waiting list.
Some very exciting news: Adrienne has an internship this summer at a NY investment company. This is an amazing opportunity and we are all very happy for her. We still need to figure out housing for her in the city but we have several leads and are sure it will all work out.
Saturday, January 06, 2007
Back Home
We got home yesterday after having just a few hours sleep. Both Adrienne and I were very tired, not leaving the couch. But today we're pretty much back to normal, busy getting Adrienne ready to drive back to Claremont tomorrow. Boy this vacation went fast.
We had a really good time in New York, saw a show, ate some nice meals, and did some shopping (mostly for Adrienne). The prices were higher than I expected even with the markdowns but Adrienne got some nice new clothes. We did a lot of walking, which we both enjoyed, and took a tour of United Nations. It was fascinating and we learned a lot about how they work.
We're very excited about what we learned from the doctor and the possibilities ahead, but in the meantime, there are a number of hoops for Adrienne to go through. On Thursday, she goes to City of Hope to see a new doctor and start the valporic acid. They decided she didn't need another scan and that's fine with us. She'll have plenty of scans in the coming months to assess the progress of this drug or any others she takes. If this one doesn't work, we'll try another.
Adrienne is currently planning to spend the summer in New York to do a clinical trial. We need to find her a place to live and an internship but that doesn't seem insurmountable. She is getting her resume ready and I'm going to write to every CEO and foundation I can think of in New York to see where they might be able to help. Sounds like fundraising for LLS and I know we did well at that.
Adrienne is feeling well except for a bit of lightheadedness. Her blood pressure is still quite low from the Coreg but hopefully it will normalize a bit in the coming weeks.
We had a really good time in New York, saw a show, ate some nice meals, and did some shopping (mostly for Adrienne). The prices were higher than I expected even with the markdowns but Adrienne got some nice new clothes. We did a lot of walking, which we both enjoyed, and took a tour of United Nations. It was fascinating and we learned a lot about how they work.
We're very excited about what we learned from the doctor and the possibilities ahead, but in the meantime, there are a number of hoops for Adrienne to go through. On Thursday, she goes to City of Hope to see a new doctor and start the valporic acid. They decided she didn't need another scan and that's fine with us. She'll have plenty of scans in the coming months to assess the progress of this drug or any others she takes. If this one doesn't work, we'll try another.
Adrienne is currently planning to spend the summer in New York to do a clinical trial. We need to find her a place to live and an internship but that doesn't seem insurmountable. She is getting her resume ready and I'm going to write to every CEO and foundation I can think of in New York to see where they might be able to help. Sounds like fundraising for LLS and I know we did well at that.
Adrienne is feeling well except for a bit of lightheadedness. Her blood pressure is still quite low from the Coreg but hopefully it will normalize a bit in the coming weeks.
Tuesday, January 02, 2007
New York, New Plan
I tried to think of a great headline for this post but I'm not that creative. Leave it to say that we left Memorial Sloan Kettering feeling very excited and hopeful. No, we left Dr. O'Connor excited and hopeful. Not only does he have options, he has ideas for a cure for Adrienne, maybe not today, but not that far in the future. He thinks that the oldest protocol out there for Hodgkin's Disease, called MOPP, could offer her a cure. (This protocol isn't used today because of the long term effects but Adrienne has most of them so that isn't really a concern for us.) In the meantime, there are a number of FDA approved drugs and drugs in clinical trial that can keep her disease under control and maybe offer a cure.
We learned some new and interesting things. First, there are quite a few people out there living with Hodgkin's Disease for many years like Adrienne. Dr.O'Connor has 10 patients himself. The disease often becomes more indolent (slower growing) after many different treatments, as Adrienne's has. Finally, there are a number of new drugs that are on the very near horizon.
Currently, the plan is to do a repeat PET scan to see how quickly her disease is growing. Next, start a drug called valporic acid (FDA approved and readily available) at City of Hope. After that, there are two other drugs in clinical trial that Adrienne could start in May, after she finishes the spring semester at college. We can look at MOPP in the future, ideally after Adrienne graduates from college.
So, we have a plan and we feel very hopeful about the future. Adrienne is enjoying her vacation and is looking forward to getting back to Claremont to start her next phase of treatment. Her future is very bright.
We learned some new and interesting things. First, there are quite a few people out there living with Hodgkin's Disease for many years like Adrienne. Dr.O'Connor has 10 patients himself. The disease often becomes more indolent (slower growing) after many different treatments, as Adrienne's has. Finally, there are a number of new drugs that are on the very near horizon.
Currently, the plan is to do a repeat PET scan to see how quickly her disease is growing. Next, start a drug called valporic acid (FDA approved and readily available) at City of Hope. After that, there are two other drugs in clinical trial that Adrienne could start in May, after she finishes the spring semester at college. We can look at MOPP in the future, ideally after Adrienne graduates from college.
So, we have a plan and we feel very hopeful about the future. Adrienne is enjoying her vacation and is looking forward to getting back to Claremont to start her next phase of treatment. Her future is very bright.
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