My friend and jeweler extraordinaire, Lisa Leonard (you might remember This) is hosting a fund-raiser for the Leukemia & Lymphoma Society today by donating 20% of all of today's orders on her website to the LLS. She is doing this in honor of a friend of hers who is participating in a triathlon...Lisa has created a custom piece that might interest any of you who also are into the swimming/biking/running thing.
Click Here to check out the fund-raiser!
Thanks!
Nate
Showing posts with label Lymphoma/Cancer. Show all posts
Showing posts with label Lymphoma/Cancer. Show all posts
Monday, March 2, 2009
Saturday, February 21, 2009
Answers (At Last!)
> Tricia has not contacted her donor's family yet. The transplant team suggests you wait about a year before writing the initial letter, so hopefully it will be something that we do soon. Depending on the response (or lack of), we may or may not share anything with the public about our possible correspondence with the donor's family.
> Tricia worked several jobs during her teen and young adult years prior to last year...she is now a full-time mommy.
> Yes, I finished "The Story Of Us" a LONG time ago...
> Tricia knows very little about her biological family, mostly by choice, and all of which we'll keep private. She has never struggled much with knowing she was adopted (which took place when she was very young).
> Janet...you can come stay if you can figure out how to get to the futon thought all of the boxes in the guest bedroom.
> Megan...your yellow ae sweatshirt is in our living room.
> Here is the meaning behind Gwyneth's name. We did have a boy name...
> The biggest day-to-day struggle we have as a family post-transplant is trying to find "normal". Being in our own home is helping, but it's difficult to have a set schedule and routine as Tricia's health needs are always changing...from a bad night's sleep to a side-affect caused by a med to the last minuted visits to Duke, it's very difficult to know with any amount of certainty what we're doing from one day to the next.
> Cookies are my weakness (along with ice cream)...it's hard to say what is my favorite, but chocolate chip might be it.
> We both do a lot of the cooking, although Tricia is doing more now that she has more energy and her own home. I cook a lot of breakfast and a lot on the grill.
> We don't watch American Idol...but, we're not watching much of anything on the tv right now because we don't have cable. We do watch a few shows via the internet.
> In the mornings before Tricia is awake, Gwyneth and I spend time waking up together, smiling at each other, and lots of book reading...she loves books (something she definitely gets from her mother).
> The thing I enjoy most about my job at NHC is spending time with people, especially leading worship (and, I actually work for everyone who is a member of my church, not just one person).
> This is my favorite song at the moment.
> When I was younger I wanted to be a baseball player. Tricia wanted to work with animals.
> "I would love to know how you manage to do everything- Gwyneth, Tricia, Work, Laundry, Moving, Blogging, Photography, Dinner, Cuddles, Decorating, Church? Do you ever ever sleep?" Yes, I sleep...not quite as much as I'd like to, but that's mostly my choice. Tricia is doing a lot more now that she's feeling much better, so my life isn't nearly as busy and full as it might appear to be.
> Tricia likes to think that she's a crafty person, and although she's tried her hand at several things, she just doesn't have the personality to really invest a lot of time into one single thing...she's the type who likes to do a little bit of everything, try everything once.
> Tricia is enjoying life as much as she possibly can. She is still a first time mother, experiencing much of what all other first time mothers experience, including the frustrations and stress. She still deals with medical issues on a constant basis...beside her transplant recovery, diabetes, CF-related digestive issues, etc., she also has had several minor medical issues, most of which we don't blog about for various reasons. She has a lot of trouble sleeping, at least 50% of the time...the cancer slowed her transplant recovery for a few different reasons... She'll never be able to live knowing that all of her medical treatments and procedures are behind her.
> I've asked Tricia to write her own blog post about life with her new lungs, post-cancer, etc. as many of you have asked about that...I'll let you know when she does that (soon).
> We do get recognized in public, almost always around Durham (never at home, except for people visiting our church). The first few times were a little strange, but now we're used to it, although it's not like it happens all the time. It seems like everyone who we come into contact with on a regular basis (staff and other CF/transplant patients) at Duke follows the blog and keeps up with the news stories, which is nice because we feel like many of the medical personnel are our friends and they really care for Tricia and Gwyneth beyond what is expected.
> I can't answer the question about "what if" concerning being a CF carrier...I can only tell you that, if our situation had been different, we would have probably thought differently about it.
> We are still very selective about where Tricia and Gwyneth go, especially during the winter. Gwyneth has been getting her RSV Shots. Hopefully when the weather warms and most of the germs go into hybernation, Gwyneth will be big and old enough to do more and hang out with whomever and where she wants to. As I've explained before, the immunosupressant drugs are typically reduced after the first year, which means a lower risk of catching a bug from others.
> I have a few "special" songs I sing to Gwyneth, but mostly I make up songs...there are a lot of fun things you can rhyme with "Rose".
> Plastic.
> At this point, we're not actively pursuing adoption, but we hope it will be an option in the future should we decide to grow our family. Right now, we're simply trying to stay healthy and enjoy each other as much as possible.
> This is "our song". Actually, most of our wedding ceremony music was courtesy of Coldplay.
> Vacation...that is something we're currently making plans for...stayed tuned...
> I do have friends who do not share our faith...I interact with them about the same way I do with anyone else. Since our church actually exists for people who don't go to church, they would be totally welcome.
> "Do you have topics that are 'off limits' or that you naturally gravitate away from when you write on your blog?" I thought this was the most interesting question...mostly because, I'm not really sure how you're wanting me to answer....hmmmm....
> My mom's hand healed up very well...it's not perfect, but nearly.
> Jeff is doing very well and is in remission...he and his family are enjoying their crazy life, back to "normal"! We're very thankful for the support they have received.
> Actually, I call Tricia "Patty Sue" and everyone else calls her "Tricia" (except for the receptionists at Duke, who call her "Patricia").
> And, of course, the big questions concerning Gwyneth development. I'll give you a short answer now, and then post a series of videos to actually show you how well she is doing.
Gwyneth has been assessed to be at about a 5-6 month old level, developmentally/motor skills, although, she has recently been making big strides and hitting some key milestones. We are not worried or concerned...as we have shared before, we are simply amazed and thankful that she is even here with us now, and we will celebrate every milestone like any normal parent and will not be scared about her future. To be focused on the unknowns of the future is to miss out on the blessings of the present. We'll enjoy her little, dependent sweetness for as long as we can!
Of course, some of her doctors are concerned, as she is a little behind even as a micro-preemie...but, then, some of her doctors aren't concerned. She has not shown any signs of long-term complications other than what I have previously shared. She has been working with a couple of therapists (actually, we are working with them as they show us ways to help her along) and we are seeing great progress. In reality, her poor eyesight is possibly a big reason why she is progressing slowly...she is very intelligent, very vocal, etc. but motor skills are very closely related to vision.
We do tend to keep Gwyneth's developmental issues more private than other topics we more openly discuss...because: 1) a lot of what we might share would be misunderstood (see This Post and comments for a wonderful example), and 2) someday, Gwyneth is might read all of this, and we need to be sensitive now to her feelings then.
> You can find answers to most of your questions about anything else I may have already covered on this blog by using the cool search bar at the top left-hand corner of my blog (see first pic below). For example...I typed in "life expectancy" and found the answers to a few of your questions via These Results. I've also been meticulous about labeling every post, and you can use the labels feature (see second pic below)...I clicked on the "transplant" label and found the answers to a few of your questions via These Results.
Thanks! It's always fun to see what kinds of questions people ask, and I enjoy taking the time to answer.
Nate
> Tricia worked several jobs during her teen and young adult years prior to last year...she is now a full-time mommy.
> Yes, I finished "The Story Of Us" a LONG time ago...
> Tricia knows very little about her biological family, mostly by choice, and all of which we'll keep private. She has never struggled much with knowing she was adopted (which took place when she was very young).
> Janet...you can come stay if you can figure out how to get to the futon thought all of the boxes in the guest bedroom.
> Megan...your yellow ae sweatshirt is in our living room.
> Here is the meaning behind Gwyneth's name. We did have a boy name...
> The biggest day-to-day struggle we have as a family post-transplant is trying to find "normal". Being in our own home is helping, but it's difficult to have a set schedule and routine as Tricia's health needs are always changing...from a bad night's sleep to a side-affect caused by a med to the last minuted visits to Duke, it's very difficult to know with any amount of certainty what we're doing from one day to the next.
> Cookies are my weakness (along with ice cream)...it's hard to say what is my favorite, but chocolate chip might be it.
> We both do a lot of the cooking, although Tricia is doing more now that she has more energy and her own home. I cook a lot of breakfast and a lot on the grill.
> We don't watch American Idol...but, we're not watching much of anything on the tv right now because we don't have cable. We do watch a few shows via the internet.
> In the mornings before Tricia is awake, Gwyneth and I spend time waking up together, smiling at each other, and lots of book reading...she loves books (something she definitely gets from her mother).
> The thing I enjoy most about my job at NHC is spending time with people, especially leading worship (and, I actually work for everyone who is a member of my church, not just one person).
> This is my favorite song at the moment.
> When I was younger I wanted to be a baseball player. Tricia wanted to work with animals.
> "I would love to know how you manage to do everything- Gwyneth, Tricia, Work, Laundry, Moving, Blogging, Photography, Dinner, Cuddles, Decorating, Church? Do you ever ever sleep?" Yes, I sleep...not quite as much as I'd like to, but that's mostly my choice. Tricia is doing a lot more now that she's feeling much better, so my life isn't nearly as busy and full as it might appear to be.
> Tricia likes to think that she's a crafty person, and although she's tried her hand at several things, she just doesn't have the personality to really invest a lot of time into one single thing...she's the type who likes to do a little bit of everything, try everything once.
> Tricia is enjoying life as much as she possibly can. She is still a first time mother, experiencing much of what all other first time mothers experience, including the frustrations and stress. She still deals with medical issues on a constant basis...beside her transplant recovery, diabetes, CF-related digestive issues, etc., she also has had several minor medical issues, most of which we don't blog about for various reasons. She has a lot of trouble sleeping, at least 50% of the time...the cancer slowed her transplant recovery for a few different reasons... She'll never be able to live knowing that all of her medical treatments and procedures are behind her.
> I've asked Tricia to write her own blog post about life with her new lungs, post-cancer, etc. as many of you have asked about that...I'll let you know when she does that (soon).
> We do get recognized in public, almost always around Durham (never at home, except for people visiting our church). The first few times were a little strange, but now we're used to it, although it's not like it happens all the time. It seems like everyone who we come into contact with on a regular basis (staff and other CF/transplant patients) at Duke follows the blog and keeps up with the news stories, which is nice because we feel like many of the medical personnel are our friends and they really care for Tricia and Gwyneth beyond what is expected.
> I can't answer the question about "what if" concerning being a CF carrier...I can only tell you that, if our situation had been different, we would have probably thought differently about it.
> We are still very selective about where Tricia and Gwyneth go, especially during the winter. Gwyneth has been getting her RSV Shots. Hopefully when the weather warms and most of the germs go into hybernation, Gwyneth will be big and old enough to do more and hang out with whomever and where she wants to. As I've explained before, the immunosupressant drugs are typically reduced after the first year, which means a lower risk of catching a bug from others.
> I have a few "special" songs I sing to Gwyneth, but mostly I make up songs...there are a lot of fun things you can rhyme with "Rose".
> Plastic.
> At this point, we're not actively pursuing adoption, but we hope it will be an option in the future should we decide to grow our family. Right now, we're simply trying to stay healthy and enjoy each other as much as possible.
> This is "our song". Actually, most of our wedding ceremony music was courtesy of Coldplay.
> Vacation...that is something we're currently making plans for...stayed tuned...
> I do have friends who do not share our faith...I interact with them about the same way I do with anyone else. Since our church actually exists for people who don't go to church, they would be totally welcome.
> "Do you have topics that are 'off limits' or that you naturally gravitate away from when you write on your blog?" I thought this was the most interesting question...mostly because, I'm not really sure how you're wanting me to answer....hmmmm....
> My mom's hand healed up very well...it's not perfect, but nearly.
> Jeff is doing very well and is in remission...he and his family are enjoying their crazy life, back to "normal"! We're very thankful for the support they have received.
> Actually, I call Tricia "Patty Sue" and everyone else calls her "Tricia" (except for the receptionists at Duke, who call her "Patricia").
> And, of course, the big questions concerning Gwyneth development. I'll give you a short answer now, and then post a series of videos to actually show you how well she is doing.
Gwyneth has been assessed to be at about a 5-6 month old level, developmentally/motor skills, although, she has recently been making big strides and hitting some key milestones. We are not worried or concerned...as we have shared before, we are simply amazed and thankful that she is even here with us now, and we will celebrate every milestone like any normal parent and will not be scared about her future. To be focused on the unknowns of the future is to miss out on the blessings of the present. We'll enjoy her little, dependent sweetness for as long as we can!
Of course, some of her doctors are concerned, as she is a little behind even as a micro-preemie...but, then, some of her doctors aren't concerned. She has not shown any signs of long-term complications other than what I have previously shared. She has been working with a couple of therapists (actually, we are working with them as they show us ways to help her along) and we are seeing great progress. In reality, her poor eyesight is possibly a big reason why she is progressing slowly...she is very intelligent, very vocal, etc. but motor skills are very closely related to vision.
We do tend to keep Gwyneth's developmental issues more private than other topics we more openly discuss...because: 1) a lot of what we might share would be misunderstood (see This Post and comments for a wonderful example), and 2) someday, Gwyneth is might read all of this, and we need to be sensitive now to her feelings then.
> You can find answers to most of your questions about anything else I may have already covered on this blog by using the cool search bar at the top left-hand corner of my blog (see first pic below). For example...I typed in "life expectancy" and found the answers to a few of your questions via These Results. I've also been meticulous about labeling every post, and you can use the labels feature (see second pic below)...I clicked on the "transplant" label and found the answers to a few of your questions via These Results.
Thanks! It's always fun to see what kinds of questions people ask, and I enjoy taking the time to answer.
Nate
Wednesday, January 7, 2009
Duke Today
Tricia has several appointments at Duke today, including her Transplant Clinic and a few scans and tests to help determine if the lymphoma is truly gone. We're hoping that we'll know something for sure by the end of he day.
Also, neither Tricia nor Gwyneth slept well last night...I'm hoping that won't make today even longer than it might already be. Tricia seems to be feeling much better, but Gwyneth still has a stuffy nose.
Thanks!
Nate
Also, neither Tricia nor Gwyneth slept well last night...I'm hoping that won't make today even longer than it might already be. Tricia seems to be feeling much better, but Gwyneth still has a stuffy nose.
Thanks!
Nate
Thursday, November 20, 2008
Finally...Good News!
OK, this is about to get even more confusing...
It APPEARS (key word here) that the lymphoma is gone from Tricia's body! The last few biopsies have shown no lymphoma, and the x-rays from yesterday show the spots in her lungs and the spot in her chest to be shrinking. The last biopsy of her chest DOES SHOW an infection, which Tricia has been receiving antibiotics for since last week.
The doctors believe that the spot in Tricia's chest (outside of the lungs) that showed up for the first time a month ago never was lymphoma. They also believe that the spots in Tricia's lungs (where the lymphoma had been) are now infection spots as well. It is ASSUMED that the chemo did indeed do it's job, and that the infection is presenting itself in some of the same spots as the lymphoma.
Trust me, after having been told over a month ago that the cancer was still present in her lungs, we were also confused...we have spent the last month assuming that was true, when, in fact, that was only what was assumed to be true by the doctors (see This Post).
To better help us understand, we asked the oncologist to draw out the time-line of events...
June 16 - Tricia is diagnosed with PTLD (Lymphoma) when a biopsy comes back positive.
June 18 - Tricia receives the first of four rounds of Rituximab.
July 22 - Via a CT Scan, it is determined that the Rituximab did not do anything to the lymphoma.
July 23 - Tricia receives the first of six planned rounds of R + CHOP, a more aggressive form of chemotherapy.
October 15 - After four rounds of R + CHOP, a scan shows that some of the spots in Tricia's lungs are gone, while others have grown. A new spot around a lymph node in Tricia's chest outside of the lungs has developed. It is assumed that the spots in her lungs are still the lymphoma, and that the spot in her chest is either lymphoma or an infection. The remaining two rounds of chemo are terminated. A successful biopsy of the area in the chest is performed.
November 10 - We finally learn that the results of the chest biopsy shows that this spot is an infection and not lymphoma. We are still told that the spots in her lungs are assumed to be lymphoma.
November 19 - We are told by the oncologist that, in fact, they now believe the lymphoma was gone by October 15. It is now assumed, due to the biopsies showing no cancer and the x-rays showing a reduction in size of the spots that an infection has taken over some of the spots where the cancer was.
The oncologist explained to us that they can't be positive about knowing if Tricia's body is cancer free until either a more invasive, successful biopsy is performed or until the scans and x-rays show no more spots...he explained, at this point, there are three immediate options:
1) Start an even more aggressive regimen of chemo leading up to a bone marrow transplant.
2) Perform an invasive, surgical biopsy (which includes deflating a lung and inserting a chest tube) to get some samples from the remaining spots of the lungs to determine if the lymphoma is still present.
3) Wait until the end of Tricia's current 30 day anti-biotic treatment (for the infection) and rescan to determine if the spots continue to shrink.
Because the first option would be incredibly risky, especially due to the fact that the doctors now assume the cancer is gone, and the second option might also prove worthless, the obvious choice (of the docs and Tricia) is to wait. It's been too long since her last chemo treatment to restart the remaining two treatments (not completing all six of the chemo rounds could prove to be detrimental in the future), so we'll return to Duke in about a month, hoping for some more good news.
Anyway, I hope all of this info helps to make the turn of events more clear for you. The bottom line is that the doctors are very optimistic that Tricia is now cancer free. It was surprising news to us, and I think it might take longer for this good to set in, especially considering that we will continue to be cautiously optimistic until we know for certain that the lymphoma is gone.
Thank you for your encouragement and prayer, and Thank God for providing some good news! We look forward to enjoying Tricia's health as we prepare to move into the new house and spend lots of time with family over the upcoming holidays!
Nate
BTW, I now have a cold and fever (and have been quarantined), which is why I haven't had a good chance to collect my thoughts and post until now. Thanks for your patience.
It APPEARS (key word here) that the lymphoma is gone from Tricia's body! The last few biopsies have shown no lymphoma, and the x-rays from yesterday show the spots in her lungs and the spot in her chest to be shrinking. The last biopsy of her chest DOES SHOW an infection, which Tricia has been receiving antibiotics for since last week.
The doctors believe that the spot in Tricia's chest (outside of the lungs) that showed up for the first time a month ago never was lymphoma. They also believe that the spots in Tricia's lungs (where the lymphoma had been) are now infection spots as well. It is ASSUMED that the chemo did indeed do it's job, and that the infection is presenting itself in some of the same spots as the lymphoma.
Trust me, after having been told over a month ago that the cancer was still present in her lungs, we were also confused...we have spent the last month assuming that was true, when, in fact, that was only what was assumed to be true by the doctors (see This Post).
To better help us understand, we asked the oncologist to draw out the time-line of events...
June 16 - Tricia is diagnosed with PTLD (Lymphoma) when a biopsy comes back positive.
June 18 - Tricia receives the first of four rounds of Rituximab.
July 22 - Via a CT Scan, it is determined that the Rituximab did not do anything to the lymphoma.
July 23 - Tricia receives the first of six planned rounds of R + CHOP, a more aggressive form of chemotherapy.
October 15 - After four rounds of R + CHOP, a scan shows that some of the spots in Tricia's lungs are gone, while others have grown. A new spot around a lymph node in Tricia's chest outside of the lungs has developed. It is assumed that the spots in her lungs are still the lymphoma, and that the spot in her chest is either lymphoma or an infection. The remaining two rounds of chemo are terminated. A successful biopsy of the area in the chest is performed.
November 10 - We finally learn that the results of the chest biopsy shows that this spot is an infection and not lymphoma. We are still told that the spots in her lungs are assumed to be lymphoma.
November 19 - We are told by the oncologist that, in fact, they now believe the lymphoma was gone by October 15. It is now assumed, due to the biopsies showing no cancer and the x-rays showing a reduction in size of the spots that an infection has taken over some of the spots where the cancer was.
The oncologist explained to us that they can't be positive about knowing if Tricia's body is cancer free until either a more invasive, successful biopsy is performed or until the scans and x-rays show no more spots...he explained, at this point, there are three immediate options:
1) Start an even more aggressive regimen of chemo leading up to a bone marrow transplant.
2) Perform an invasive, surgical biopsy (which includes deflating a lung and inserting a chest tube) to get some samples from the remaining spots of the lungs to determine if the lymphoma is still present.
3) Wait until the end of Tricia's current 30 day anti-biotic treatment (for the infection) and rescan to determine if the spots continue to shrink.
Because the first option would be incredibly risky, especially due to the fact that the doctors now assume the cancer is gone, and the second option might also prove worthless, the obvious choice (of the docs and Tricia) is to wait. It's been too long since her last chemo treatment to restart the remaining two treatments (not completing all six of the chemo rounds could prove to be detrimental in the future), so we'll return to Duke in about a month, hoping for some more good news.
Anyway, I hope all of this info helps to make the turn of events more clear for you. The bottom line is that the doctors are very optimistic that Tricia is now cancer free. It was surprising news to us, and I think it might take longer for this good to set in, especially considering that we will continue to be cautiously optimistic until we know for certain that the lymphoma is gone.
Thank you for your encouragement and prayer, and Thank God for providing some good news! We look forward to enjoying Tricia's health as we prepare to move into the new house and spend lots of time with family over the upcoming holidays!
Nate
BTW, I now have a cold and fever (and have been quarantined), which is why I haven't had a good chance to collect my thoughts and post until now. Thanks for your patience.
Tuesday, November 18, 2008
Sick Baby
Gwyneth has her first cold (which is amazing at 10 months old). Lot's of nose snot and eye boogies and a little bit of drainage and coughing. Fortunately, she was already scheduled for an appointment with her ped today...the doc said it's only in her head and not in her chest, so we'll just keep her nose clear and wait it out and let her build up some antibodies.
Also, Gwyneth was weighed today...11lbs 12oz!!! She has literally gained about one pound per month since January, which is great.
We're heading to Durham this afternoon. Tricia has two appointments at Duke tomorrow, one with her TX team and one with the cancer docs. We're assuming we'll be told what the next step is for her lymphoma treatment, but at this point (having waited over a month for this info), nothing would surprise us. With Gwyneth in tow, you may not hear from me again about the latest news until Wednesday night or even Thursday morning.
Thanks!
Nate
Also, Gwyneth was weighed today...11lbs 12oz!!! She has literally gained about one pound per month since January, which is great.
We're heading to Durham this afternoon. Tricia has two appointments at Duke tomorrow, one with her TX team and one with the cancer docs. We're assuming we'll be told what the next step is for her lymphoma treatment, but at this point (having waited over a month for this info), nothing would surprise us. With Gwyneth in tow, you may not hear from me again about the latest news until Wednesday night or even Thursday morning.
Thanks!
Nate
Monday, November 10, 2008
Monday Night Update
We finally heard something from Duke today. This might be confusing, so I apologize in advance...
The lymphoma is still present in Tricia's lungs, which we have known. The new mass around the lymph node in her chest (as I described in This Post) does not appear to be lymphoma. It does appear that it is an infection caused by a bacteria.
An infection is much better news than spreading cancer, but it is an infection none-the-less, which means Tricia will be on antibiotics for the next 30 days. This certain bacteria is something that Tricia has dealt with in the past with her CF lungs, so, at least, we know what we're dealing with. Because of her compromised immune system, this infection has grown faster than it would have normally. We'll know in a month if the meds are taking care of the infection. The bacteria (which wouldn't be an issue in a normally healthy body), however, could be more difficult to get out of Tricia's lungs.
We'll be heading back to Duke next week to meet, separately, with the transplant team and the cancer team. We've yet to hear any news about the next suggested treatment for the lymphoma that seems to have grown in Tricia lungs.
The good news is, over the past few weeks, Tricia has been feeling better than she has since starting the chemo four months ago. We've been taking advantage of this, knowing that this might be the last time she feels this good for a while as we're assuming that the next round of treatment will be the toughest yet. I've been spending all of my extra time with my girls, and we've taken advantage of any nice weather to have some fun.
Also, the closing on the house was bumped back again...we're told, "it will hopefully happen by the end of the week."
Thanks for your continued prayer. As always, we trust that God knows our future and wants the best for us, even when it doesn't feel that way.
Nate
The lymphoma is still present in Tricia's lungs, which we have known. The new mass around the lymph node in her chest (as I described in This Post) does not appear to be lymphoma. It does appear that it is an infection caused by a bacteria.
An infection is much better news than spreading cancer, but it is an infection none-the-less, which means Tricia will be on antibiotics for the next 30 days. This certain bacteria is something that Tricia has dealt with in the past with her CF lungs, so, at least, we know what we're dealing with. Because of her compromised immune system, this infection has grown faster than it would have normally. We'll know in a month if the meds are taking care of the infection. The bacteria (which wouldn't be an issue in a normally healthy body), however, could be more difficult to get out of Tricia's lungs.
We'll be heading back to Duke next week to meet, separately, with the transplant team and the cancer team. We've yet to hear any news about the next suggested treatment for the lymphoma that seems to have grown in Tricia lungs.
The good news is, over the past few weeks, Tricia has been feeling better than she has since starting the chemo four months ago. We've been taking advantage of this, knowing that this might be the last time she feels this good for a while as we're assuming that the next round of treatment will be the toughest yet. I've been spending all of my extra time with my girls, and we've taken advantage of any nice weather to have some fun.
Also, the closing on the house was bumped back again...we're told, "it will hopefully happen by the end of the week."
Thanks for your continued prayer. As always, we trust that God knows our future and wants the best for us, even when it doesn't feel that way.
Nate
Thursday, November 6, 2008
Another Quick Update
Still no news from Duke.
Got word today that the house closing (which was scheduled for Friday/tomorrow at noon) has been pushed back to Monday. We're guessing we'll be in Durham next week, so we're hoping that it does happen on Monday, or else it may not happen for another week or more.
Nate
Got word today that the house closing (which was scheduled for Friday/tomorrow at noon) has been pushed back to Monday. We're guessing we'll be in Durham next week, so we're hoping that it does happen on Monday, or else it may not happen for another week or more.
Should we be nervous?
Nate
Wednesday, November 5, 2008
Quick Update
Just an FYI that we haven't heard anything yet from Duke. Hoping for something soon so we can figure out our schedule.
Nate
Nate
Wednesday, October 29, 2008
Wednesday Night Update
Tricia's biopsy was successful, as they were able to get samples of the tissue in the area of the swollen lymph node. We won't know anything for sure until the cultures come back next week.
Tricia was discharged around 2, and because she was very tired and very sore, especially around her neck, we decided to spend one more night in Durham and travel home tomorrow morning.
Thank you for your thoughts and prayers today.
Nate
Tricia was discharged around 2, and because she was very tired and very sore, especially around her neck, we decided to spend one more night in Durham and travel home tomorrow morning.
Thank you for your thoughts and prayers today.
Nate
In Surgery Now
Tricia is in the OR now. I'll update from the hospital after if I get a chance, or when we get home this afternoon.
Thanks.
Nate
Thanks.
Nate
Tuesday, October 28, 2008
Long Day
Awake at 6:30am, just checking in to the hotel now at 10pm. Consult with the surgeon this morning, pre-op stuff this afternoon, walk around the mall and a late dinner at The Cheesecake Factory.
Back to the hospital by 6:30am tomorrow, surgery at 8:30, home by late afternoon if everything goes well. They'll be making a small incision at Tricia's old tracheotomy scar, and sending a bronchioscope down into her chest, outside of her airway, to get a few samples from the area that appears to be cancer. This procedure has a much better chance of getting good samples.
We should know something by tomorrow afternoon, although nothing will be confirmed until the biopsy comes back, sometime next week.
Thanks.
Nate
Back to the hospital by 6:30am tomorrow, surgery at 8:30, home by late afternoon if everything goes well. They'll be making a small incision at Tricia's old tracheotomy scar, and sending a bronchioscope down into her chest, outside of her airway, to get a few samples from the area that appears to be cancer. This procedure has a much better chance of getting good samples.
We should know something by tomorrow afternoon, although nothing will be confirmed until the biopsy comes back, sometime next week.
Thanks.
Nate
Sunday, October 26, 2008
This Week
Sorry I haven't been updating much lately...have been focused on work, house-buying business, and spending as much time with my girls as possible.
We're headed back to Durham on Tuesday morning. Tricia has a few consults, and then the biopsy on Wednesday. All outpatient, so we'll be spending the night together in the hotel, and hopefully coming back home by Wednesday night.
Thanks.
Nate
We're headed back to Durham on Tuesday morning. Tricia has a few consults, and then the biopsy on Wednesday. All outpatient, so we'll be spending the night together in the hotel, and hopefully coming back home by Wednesday night.
Thanks.
Nate
Wednesday, October 22, 2008
More Bad News
Tricia's biopsy (from last week) was no good (meaning, the sample they took was not from the right spot in her lungs). This means:
1. We'll have to return to Duke for an overnight stay and another biopsy...they will cut Tricia open and be certain to get a good sample (the previous biopsies were less invasive procedures using a bronchioscope).
2. It may be close to 2 weeks before we actually know anything more.
Thanks.
Nate
1. We'll have to return to Duke for an overnight stay and another biopsy...they will cut Tricia open and be certain to get a good sample (the previous biopsies were less invasive procedures using a bronchioscope).
2. It may be close to 2 weeks before we actually know anything more.
Thanks.
Nate
Friday, October 17, 2008
News
We haven't heard anything from Duke yet about the biopsy, so we probably won't know anything until Monday.
Thanks to our awesome readers, we won all four Blogger Choice Awards for which we were nominated. I don't know if we actually win anything other than recognition, which is cool with me, because I know that many people have found the blog because of those nominations.
Our TRUNKorTREAT is (unexpectedly) receiving some National Publicity!
Our local friends and supporters at the Southern Shores Rita's are going to be hanging out at the Kitty Hawk Elementary Fall Festival tomorrow from 10-4, raising money for Cystic Fibrosis! We'll be swinging by at some point, as long as everyone is feeling good, enjoying some delicious water ice.
And, tonight, Gwyneth will be experiencing rice cereal for the first time...you know that cameras will be ready!
Nate
Thanks to our awesome readers, we won all four Blogger Choice Awards for which we were nominated. I don't know if we actually win anything other than recognition, which is cool with me, because I know that many people have found the blog because of those nominations.
Our TRUNKorTREAT is (unexpectedly) receiving some National Publicity!
Our local friends and supporters at the Southern Shores Rita's are going to be hanging out at the Kitty Hawk Elementary Fall Festival tomorrow from 10-4, raising money for Cystic Fibrosis! We'll be swinging by at some point, as long as everyone is feeling good, enjoying some delicious water ice.
And, tonight, Gwyneth will be experiencing rice cereal for the first time...you know that cameras will be ready!
Nate
Wednesday, October 15, 2008
The Latest
Tricia's PET Scan (Monday morning) shows that the chemo has done very little to affect her PTLD, and, in fact, some of the spots in her lungs have grown, and the lymphoma has possibly spread to a lymph node in her chest (outside of her lungs). They are stopping the current R-CHOP treatment, since it is obviously not doing her any good, and performed another biopsy on Tuesday morning.
That is literally all we know at this point. We arrived home late last night. We should hear back from Duke later this week about what the biopsy shows and what they recommend next.
We are very discouraged as we very distinctly recall the cancer doc telling us a few months ago, "If this treatment doesn't work, Tricia is in serious trouble..."
Nate
That is literally all we know at this point. We arrived home late last night. We should hear back from Duke later this week about what the biopsy shows and what they recommend next.
We are very discouraged as we very distinctly recall the cancer doc telling us a few months ago, "If this treatment doesn't work, Tricia is in serious trouble..."
Nate
Sunday, October 12, 2008
Tomorrow (Monday)
I'll be waiting to hear from Tricia tomorrow morning about what the doctors will say about her discharge. Either way, I'm heading to Durham, but, if she will be discharged tomorrow, I'll leave Gwyneth at home and go and be back with Tricia by the end of the day...if she is not going to be discharged tomorrow, I'll take Gwyneth with me to stay overnight (hopefully Tricia will be discharged by Wednesday).
Fortunately, Tricia's PET Scan is scheduled for tomorrow, and we should know something about her lymphoma shortly after. We REALLY appreciate your thoughts and prayers over the past few months about this, as it's something we've been anticipating since the original lymphoma diagnosis.
Thanks.
Nate
Fortunately, Tricia's PET Scan is scheduled for tomorrow, and we should know something about her lymphoma shortly after. We REALLY appreciate your thoughts and prayers over the past few months about this, as it's something we've been anticipating since the original lymphoma diagnosis.
Thanks.
Nate
Thursday, October 9, 2008
Thursday Afternoon Update
Tricia continues to feel good. We just took a walk down to the bookstore, which is the first time she's walked more than a few feet since Monday...she said that her legs felt dead by the time we got back.
It was discovered today that Tricia has a staph infection...we haven't been told yet if this is something related/causing the lung infection, or something separate. They've taken blood from her port because there is a good chance the staph has started there. If that's the case, they'll have to remove her port, which wouldn't be convenient as that is the best way for her to receive meds and her remaining chemo treatments.
But, as I said, Tricia continues to feel very good. She has her bronch tomorrow...they'll clean her lungs out a bit and remove another small sample to test for rejection. We're hoping that she'll be discharged sometime during the weekend.
Thanks!
Nate
It was discovered today that Tricia has a staph infection...we haven't been told yet if this is something related/causing the lung infection, or something separate. They've taken blood from her port because there is a good chance the staph has started there. If that's the case, they'll have to remove her port, which wouldn't be convenient as that is the best way for her to receive meds and her remaining chemo treatments.
But, as I said, Tricia continues to feel very good. She has her bronch tomorrow...they'll clean her lungs out a bit and remove another small sample to test for rejection. We're hoping that she'll be discharged sometime during the weekend.
Thanks!
Nate
Sunday, October 5, 2008
Big Week
Tomorrow kicks off a big week for us. We'll be heading up to Durham sometime in the second half of Monday. Tuesday is filled with appointments...we'll find out how well Gwyneth is doing, and know how well this chemo is taking care of Tricia's lymphoma. Tricia has a few appointments with the transplant team on Wednesday morning, and then we're hoping to head home.
We've been praying for several weeks that the next few days will bring great news.
Tricia was in bed since last night until just about an hour ago...her chemo side effects are kicking in strong, and I'm guessing she's still feeling sick from this sinus thing. She's coughing up junk.
We're hoping that Tricia won't have to be admitted into the hospital, but we're taking extra clothes and baby gear in case (because you never know).
Also, Tricia's sister, Megan is flying down to hang with us and help me balance time between my girls schedules.
We also need to get a bit of "big city" shopping in, for things that we can't find here on the OBX.
Thanks for your thoughts and prayers this week. I'll update when I can...
Nate
We've been praying for several weeks that the next few days will bring great news.
Tricia was in bed since last night until just about an hour ago...her chemo side effects are kicking in strong, and I'm guessing she's still feeling sick from this sinus thing. She's coughing up junk.
We're hoping that Tricia won't have to be admitted into the hospital, but we're taking extra clothes and baby gear in case (because you never know).
Also, Tricia's sister, Megan is flying down to hang with us and help me balance time between my girls schedules.
We also need to get a bit of "big city" shopping in, for things that we can't find here on the OBX.
Thanks for your thoughts and prayers this week. I'll update when I can...
Nate
Wednesday, October 1, 2008
Squidoo
Squidoo (an online group that raises tons of money for charities) is giving $80,000 to the charities of your choice. Basically, anyone who wants to participate can vote for one charity (from a list of about 50...don't vote more than once or all your votes will be deleted)...Squidoo will donate $2/vote. You don't even have to sign up for anything!
There are two charities on the list that we are very passionate about: The March of Dimes (currently having received 18.2% of the votes) and The Leukemia and Lymphoma Society (currently having received 1.8% of the votes). Feel free to CLICK HERE and vote for any charity you believe could use $2...OR, choose one of the two charities I mentioned above! You have until October 15 to vote!
Let us know if you participate, and which organization got your vote (even if it's not one of our favorites, it's all good!)!
Thanks!
Nate
There are two charities on the list that we are very passionate about: The March of Dimes (currently having received 18.2% of the votes) and The Leukemia and Lymphoma Society (currently having received 1.8% of the votes). Feel free to CLICK HERE and vote for any charity you believe could use $2...OR, choose one of the two charities I mentioned above! You have until October 15 to vote!
Let us know if you participate, and which organization got your vote (even if it's not one of our favorites, it's all good!)!
Thanks!
Nate
Tuesday, September 30, 2008
Feeling Better
Just a quick update to let you know that Tricia was feeling better today. More than likely, the side-effects from this 4th round will kick in in a few days.
Much thanks to everyone who was praying and thinking of Tricia (and me) last night and today. It's very encouraging.
Nate
Much thanks to everyone who was praying and thinking of Tricia (and me) last night and today. It's very encouraging.
Nate