Thanks.
Nate
Sunday, August 31, 2008
Prayers Tonight & Tomorrow
Having experienced several hurricanes here on the OBX over the past 20+ years (although nothing quite like Katrina and other monsters), I'll be praying, tonight and tomorrow, for those who have been and will be affected by Gustav...looks like he's a monster. I encourage you to take some time to do the same.
Thanks.
Nate
Thanks.
Nate
Saturday, August 30, 2008
Answers
> House hunting is going... Still looking. Still waiting for the right house, right deal to come along. It's hard to find time to look with Tricia's health being up and down, and the summer being such a busy time for us, but hopefully we'll have some more time now that the summer is over.
> I choose which organizations to support based on our life situations. CFF, LLS and March of Dimes are obvious choices. Because we have more history with and knowledge of CFF, we tend to focus most of our time and energy on raising financial support for this organization.
> Yes, my faith wavers all the time, just like anyone else, and I've tried my best to maintain a sense of normalcy with my posts, hoping that nobody would think of me or our families as super-human. You can read more about that Here.
> Gwyneth is being fed formula along with a simple supplement of lipids according to the prescription of her docs. This is all she eats for the time being.
> Because of the Lymphoma, we haven't spent as much time focused on other transplant issues surrounding Tricia's new lungs. So far, there have been no signs of rejection, which is great. Her numbers (FEV1, PFT's) are not as high as they could be, but she is certainly in a much better place than she has been for several years.
> Gwyneth won't be eating solids for a while yet, maybe several more months.
> There are too many good places to eat on the OBX to name. I'll put a list together of some of our favorites, but as long as it's local and has been around for more than a few years, you probably can't go wrong. The trick to eating her locally is picking a day/time when the restaurant isn't going to be packed.
> Tricia is able to care for Gwyneth on her own, as much as any other first-time mom is able to (meaning, she does appreciate when I'm home and can give her a break, and she spends a lot of time with other family). The only times she is really unable to do much are the few days every three weeks when her chemo is causing major side effects.
> Gwyneth is about 4 months old, according to her adjusted age. But, we like to tell people how old she is from birth (almost 8 months now), adding that she was born premature (because everyone thinks she's still a newborn because of her size).
> We're still avoiding large crowds as much as possible, trying not to come into contact will many people in general, and keeping our distance when people are sick. Fortunately, there are fewer risks during the summer. With the fall and winter coming up, we will have to take more precautions, so we're taking advantage of doing some things now that we know we won't be able to do later. You can read more about how we view risks Here.
> We have bought a wig for Tricia (for those who may need one at some point, your insurance may cover the cost), and she wears it at times when she's out depending on what she's doing.
> Chemo affects different people in different ways. Tricia lost her hair after the first round, while other lose their hair after a few rounds, and other don't lose it at all.
> I completed the "Story of Us" series with This Post...
> Gwyneth has her own room with her own crib. Maybe I'll give you a tour of her room at some point.
> You can find answers to most of you photography questions on my Photography Blog.
> I don't view the blogs of everyone who comments. I do view blogs when people ask me to.
> Read This if you want to give us something.
If I didn't answer your question, it's because I've probably already answered it at some point. Use the search bar at the top left of your screen, or the labels on the right to find out more about our life.
Thanks!
Nate
> I choose which organizations to support based on our life situations. CFF, LLS and March of Dimes are obvious choices. Because we have more history with and knowledge of CFF, we tend to focus most of our time and energy on raising financial support for this organization.
> Yes, my faith wavers all the time, just like anyone else, and I've tried my best to maintain a sense of normalcy with my posts, hoping that nobody would think of me or our families as super-human. You can read more about that Here.
> Gwyneth is being fed formula along with a simple supplement of lipids according to the prescription of her docs. This is all she eats for the time being.
> Because of the Lymphoma, we haven't spent as much time focused on other transplant issues surrounding Tricia's new lungs. So far, there have been no signs of rejection, which is great. Her numbers (FEV1, PFT's) are not as high as they could be, but she is certainly in a much better place than she has been for several years.
> Gwyneth won't be eating solids for a while yet, maybe several more months.
> There are too many good places to eat on the OBX to name. I'll put a list together of some of our favorites, but as long as it's local and has been around for more than a few years, you probably can't go wrong. The trick to eating her locally is picking a day/time when the restaurant isn't going to be packed.
> Tricia is able to care for Gwyneth on her own, as much as any other first-time mom is able to (meaning, she does appreciate when I'm home and can give her a break, and she spends a lot of time with other family). The only times she is really unable to do much are the few days every three weeks when her chemo is causing major side effects.
> Gwyneth is about 4 months old, according to her adjusted age. But, we like to tell people how old she is from birth (almost 8 months now), adding that she was born premature (because everyone thinks she's still a newborn because of her size).
> We're still avoiding large crowds as much as possible, trying not to come into contact will many people in general, and keeping our distance when people are sick. Fortunately, there are fewer risks during the summer. With the fall and winter coming up, we will have to take more precautions, so we're taking advantage of doing some things now that we know we won't be able to do later. You can read more about how we view risks Here.
> We have bought a wig for Tricia (for those who may need one at some point, your insurance may cover the cost), and she wears it at times when she's out depending on what she's doing.
> Chemo affects different people in different ways. Tricia lost her hair after the first round, while other lose their hair after a few rounds, and other don't lose it at all.
> I completed the "Story of Us" series with This Post...
> Gwyneth has her own room with her own crib. Maybe I'll give you a tour of her room at some point.
> You can find answers to most of you photography questions on my Photography Blog.
> I don't view the blogs of everyone who comments. I do view blogs when people ask me to.
> Read This if you want to give us something.
If I didn't answer your question, it's because I've probably already answered it at some point. Use the search bar at the top left of your screen, or the labels on the right to find out more about our life.
Thanks!
Nate
Friday, August 29, 2008
BTW, I'm "Twittering" now... Not exactly sure what that means, but I'm trying it out. You can find me as Milepost13...
Nate
Nate
Thursday, August 28, 2008
Home Alone
What do you do when your daughter and wife have left you at home alone?
Nothing productive, obviously.
Nate
Nothing productive, obviously.
Nate
Wednesday, August 27, 2008
Embarq & Charter
If you have an Embarq or Charter email address (like joesomebody@embarqmail.com), please know that, for some reason, nearly all of my emails are NOT being received by people like you. I send an email to an embarq or charter address, and it bounces back, telling me that it could not be delivered. This has been going on for a few weeks.
So, if you've emailed me in the past few weeks from using an email address from one of these two companies, and you haven't gotten a response back, that may be why. Try emailing me again from a yahoo, hotmail, etc. account.
Thanks!
Nate
So, if you've emailed me in the past few weeks from using an email address from one of these two companies, and you haven't gotten a response back, that may be why. Try emailing me again from a yahoo, hotmail, etc. account.
Thanks!
Nate
Q&A
I know that lots of people have questions for us...I haven't done a good Q&A in a while, so here's your chance to ask.
I'll answer any question about the stuff on our blog that I am able and willing to answer and that I haven't already answered before like 47 times. I'd recommend that you first use the "labels" feature over on the right of your screen, or look at all of the previous Q&A's. I'll close the comments under this post on Friday morning.
Just to make it easy for you, Gwyneth is still on oxygen, but we take it off at times for several reasons, which is why some pictures show the cannula and others don't. I promise that you won't be able to miss my post on the day we're told she no longer needs the O2.
Thanks!
Nate
I'll answer any question about the stuff on our blog that I am able and willing to answer and that I haven't already answered before like 47 times. I'd recommend that you first use the "labels" feature over on the right of your screen, or look at all of the previous Q&A's. I'll close the comments under this post on Friday morning.
Just to make it easy for you, Gwyneth is still on oxygen, but we take it off at times for several reasons, which is why some pictures show the cannula and others don't. I promise that you won't be able to miss my post on the day we're told she no longer needs the O2.
Thanks!
Nate
Tuesday, August 26, 2008
Corolla
Corolla is one of our favorite spots on the OBX. It's one of the more isolated areas of our beaches here...the 45 minute drive up the coast is one of my favorite places to travel, and there are very few things more fun than four-wheeling on the beach.
It was windy today, so we didn't get to spend much time outside of the Jeep on the beach, but we did get to drive around in the sand, and even came across a few of the wild horses that have free reign. I believe this is a moma and nearly full-grown colt.
These pictures were actually taken in Corova, NC, which is a group of houses that are only accessible by driving in the sand up the beach from Corolla. The pic below shows you just how unique this area is...
Nate
It was windy today, so we didn't get to spend much time outside of the Jeep on the beach, but we did get to drive around in the sand, and even came across a few of the wild horses that have free reign. I believe this is a moma and nearly full-grown colt.
These pictures were actually taken in Corova, NC, which is a group of houses that are only accessible by driving in the sand up the beach from Corolla. The pic below shows you just how unique this area is...
Nate
Monday, August 25, 2008
Update & Plans
Tricia is feeling better than she was last week, but she is still more tired than normal.
I had a fever off and on over the weekend, but I'm feeling much better now. I managed to keep my distance from both of my girls.
Gwyneth is starting to hang onto things with her hands for longer than a few seconds, which makes play time more fun (see pic below).
We're looking forward to taking a drive up to Corolla (an episode of one of Tricia's favorite shows, John and Kate Plus 8 recently featured their vacation to Corolla) tomorrow, which is one of our favorite places to visit. The temp is not supposed to get above 80, and we need to get at least one more good beach day in before the summer's end. We'll be sure to take lots of pictures tomorrow!
Also, Gwyneth, Tricia and her mom are driving up to NJ on Thursday to hang out with family and friends. Tricia is very excited, as are several people who have yet to meet Gwyneth.
Nate
I had a fever off and on over the weekend, but I'm feeling much better now. I managed to keep my distance from both of my girls.
Gwyneth is starting to hang onto things with her hands for longer than a few seconds, which makes play time more fun (see pic below).
We're looking forward to taking a drive up to Corolla (an episode of one of Tricia's favorite shows, John and Kate Plus 8 recently featured their vacation to Corolla) tomorrow, which is one of our favorite places to visit. The temp is not supposed to get above 80, and we need to get at least one more good beach day in before the summer's end. We'll be sure to take lots of pictures tomorrow!
Also, Gwyneth, Tricia and her mom are driving up to NJ on Thursday to hang out with family and friends. Tricia is very excited, as are several people who have yet to meet Gwyneth.
Nate
10001
FYI, this is the 10,001 picture I've taken with my "new" Canon (the one that Tricia gave me for Christmas). My guess is, Gwyneth is in at least 8000 of those pictures...that's normal, right?
Nate
Nate
Sunday, August 24, 2008
Crazy Weekend
It's been a crazy busy weekend, and I'm sorry for the lack of posts. I plan on taking tomorrow off and re-energizing for the rest of the week, which will include some more in depth blogging. I hope your Sunday is most excellent!
Nate
Nate
Friday, August 22, 2008
Cystic Fibrosis Awareness Day
Tomorrow is our first annual Cystic Fibrosis Awareness Day on the OBX! There are several mini fundraisers going on in several locations, so if you're around tomorrow, check it out!
> Bake Sale and Coin Drop at the Walmart in Kitty Hawk (9am - 2pm)
> Car Wash at Atlantic Financial Services in Kill Devil Hills, MP 9 (9-2)
> Garage Sale at Prime Only Restaurant in Nags Head, MP 10.5 (9-2)
> Coin Drop at Gateway Bank in Nags Head, MP 10.6 (9-2)
> Coin Drop at the College of the Albemarle in Manteo (9-2)
> Car Wash and Breakfast Biscuits at the Fraternal Order of the Eagles in Kill Devil Hills, MP 9 (9-2)
> Wendy's in Kill Devil Hills will donate %20 of every order from 10am to 2pm - you MUST say "Cystic Fibrosis"
All proceeds go directly toward the Cystic Fibrosis Foundation's Great Strides Walk on September 13!!!
Nate
> Bake Sale and Coin Drop at the Walmart in Kitty Hawk (9am - 2pm)
> Car Wash at Atlantic Financial Services in Kill Devil Hills, MP 9 (9-2)
> Garage Sale at Prime Only Restaurant in Nags Head, MP 10.5 (9-2)
> Coin Drop at Gateway Bank in Nags Head, MP 10.6 (9-2)
> Coin Drop at the College of the Albemarle in Manteo (9-2)
> Car Wash and Breakfast Biscuits at the Fraternal Order of the Eagles in Kill Devil Hills, MP 9 (9-2)
> Wendy's in Kill Devil Hills will donate %20 of every order from 10am to 2pm - you MUST say "Cystic Fibrosis"
All proceeds go directly toward the Cystic Fibrosis Foundation's Great Strides Walk on September 13!!!
Nate
Thursday, August 21, 2008
Quick Update
Tricia has been feeling better the past few days, except that she has been sleeping a lot. Tomorrow will be Day 10, so we're hoping the upswing is on it's way.
I, however, am not feeling well. I think it may just be allergies, and I've already been taking something for it, but I'm sleeping on the couch tonight just in case. I appreciate your prayers that I'll be feeling better quickly.
Gwyneth seems to be reaching, literally, a new milestone. She's finally beginning to reach out her hands for things, which should bring more fun times.
Thanks.
Nate
I, however, am not feeling well. I think it may just be allergies, and I've already been taking something for it, but I'm sleeping on the couch tonight just in case. I appreciate your prayers that I'll be feeling better quickly.
Gwyneth seems to be reaching, literally, a new milestone. She's finally beginning to reach out her hands for things, which should bring more fun times.
Thanks.
Nate
Radio Interview Friday Morning
Going All In
A few nights ago, I buzzed Tricia's remaining few hairs almost as short as mine. Tricia, you are amazing!
Nate
Nate
Wednesday, August 20, 2008
(Bump) For My UK Friends (and everyone else)
Adrian Sudbury of the UK has an incredibly rare type of cancer...in fact, he has been told that he is the only person in the world to have been diagnosed with this exact condition.
Although it is too late for a bone marrow transplant to save him, Adrian wants to make a lasting difference for years to come. He is attempting to make it compulsory for 16-17 year olds in the UK to receive education about bone marrow, blood and organ donation at college by taking on the government and the media. Having already had meetings with the Prime Minister and having been on TV and radio, Adrian has set up a Petition (UK residents only may sign) with well over 8000 signatures to date.
Because of Tricia's recent diagnosis, bone marrow has now entered our radar as something that may (very small possibility) affect our lives in a very direct way sometime in the future. I encourage you (especially if you're a resident of the UK) to take a look at Adrian's blog and consider signing his petition.
BTW, today (originally written on July 15, 2008) is Adrian's 27th birthday.
Thanks!
Nate
Monday, August 18, 2008
Chemo Facts
Here is some interesting info about chemotherapy from Chemotherapy.com:
Chemotherapy is designed to kill cancer cells. Chemotherapy can be administered through a vein, injected into a body cavity, or delivered orally in the form of a pill, depending on which drug is used.
Chemotherapy works by destroying cancer cells; unfortunately, it cannot tell the difference between a cancer cell and some healthy cells. So chemotherapy eliminates not only the fast-growing cancer cells but also other fast-growing cells in your body, including, hair and blood cells.
Some cancer cells grow slowly while others grow rapidly. As a result, different types of chemotherapy drugs target the growth patterns of specific types of cancer cells. Each drug has a different way of working and is effective at a specific time in the life cycle of the cell it targets.
An undesirable consequence of chemotherapy affecting your body—not related to your cancer—is referred to as a complication of treatment, or a side effect. Some common side effects of chemotherapy are:
For example, one of the most serious potential side effects of chemotherapy is a low count of infection-fighting white blood cells—a condition called neutropenia (new-troh-PEE-nee-ah). Neutropenia can interrupt your chemotherapy schedule and put you at risk for infections that may require hospitalization and may even be life-threatening.
I've read about some very interesting home remedies to help control side effects...somebody, in fact, mentioned sipping sweet tea in one of the comments today. Not that we'll actually try anything that isn't already OKed by Tricia's doctors, but just for fun, have you heard of or tried any strange home remedies to combat the side effects of cancer and/or chemo?
Nate
Chemotherapy is designed to kill cancer cells. Chemotherapy can be administered through a vein, injected into a body cavity, or delivered orally in the form of a pill, depending on which drug is used.
Chemotherapy works by destroying cancer cells; unfortunately, it cannot tell the difference between a cancer cell and some healthy cells. So chemotherapy eliminates not only the fast-growing cancer cells but also other fast-growing cells in your body, including, hair and blood cells.
Some cancer cells grow slowly while others grow rapidly. As a result, different types of chemotherapy drugs target the growth patterns of specific types of cancer cells. Each drug has a different way of working and is effective at a specific time in the life cycle of the cell it targets.
An undesirable consequence of chemotherapy affecting your body—not related to your cancer—is referred to as a complication of treatment, or a side effect. Some common side effects of chemotherapy are:
- Low white blood cell count
- Low red blood cell count
- Low platelet count
- Nausea
- Vomiting
- Hair loss
- Fatigue
For example, one of the most serious potential side effects of chemotherapy is a low count of infection-fighting white blood cells—a condition called neutropenia (new-troh-PEE-nee-ah). Neutropenia can interrupt your chemotherapy schedule and put you at risk for infections that may require hospitalization and may even be life-threatening.
I've read about some very interesting home remedies to help control side effects...somebody, in fact, mentioned sipping sweet tea in one of the comments today. Not that we'll actually try anything that isn't already OKed by Tricia's doctors, but just for fun, have you heard of or tried any strange home remedies to combat the side effects of cancer and/or chemo?
Nate
Emails
I'm usually no more than a day or two behind with responding to emails related the the blog, but, with the business of life recently, I've gotten way behind on my emails...maybe even a few weeks. I'm not apologizing, but I am letting you know in case you emailed recently and haven't gotten a response. I have read every one, and have been praying, etc. when people have asked, and I will try to respond to them all within the next several days.
Thanks!
Nate
Thanks!
Nate
Bad Day
Tricia's not feeling well today. Very tired and her stomach is really bothering her. As I've mentioned before, because she has CF, she is constantly dealing with digestive issues, so it's hard now to know if any problems are related to the CF or to the chemo, but, more than likely, today is a chemo problem.
Also, because she is still only less than five months removed from the double lung transplant (which means she hasn't yet "fully" recovered), and because she is taking a few handful of transplant drugs every day before the added medications she is now taking for the lymphoma, her body is having a rough time. She cannot take some of the typical cancer drugs (like those that help boost white blood count) because they would cause a greater risk for rejection. All of this, plus a few other factors, make her journey with chemo very different than most others (again, not to minimize the sufferings of anyone who has to deal with chemo), which is why she literally needs somebody with her 24/7 for the next few days. Tricia is as tough as God makes them, and I know that, when she is hurting and "tired", she really means it.
It's a burden to think of her going through this several more times over the next few months, and a blessing to know that she should be feeling better by the end of the week...
Again, thanks for your prayers today and the next few days.
Nate
Also, because she is still only less than five months removed from the double lung transplant (which means she hasn't yet "fully" recovered), and because she is taking a few handful of transplant drugs every day before the added medications she is now taking for the lymphoma, her body is having a rough time. She cannot take some of the typical cancer drugs (like those that help boost white blood count) because they would cause a greater risk for rejection. All of this, plus a few other factors, make her journey with chemo very different than most others (again, not to minimize the sufferings of anyone who has to deal with chemo), which is why she literally needs somebody with her 24/7 for the next few days. Tricia is as tough as God makes them, and I know that, when she is hurting and "tired", she really means it.
It's a burden to think of her going through this several more times over the next few months, and a blessing to know that she should be feeling better by the end of the week...
Again, thanks for your prayers today and the next few days.
Nate
Update
Tricia started feeling the fatigue from the chemo yesterday. We remember, after the first treatment, that the first Sunday (both treatments have been on a Wednesday) was the first day she started to feel the side effects as well. If the pattern holds true, she'll continue to feel more and more fatigued throughout the rest of the week, with Friday (that dreaded Day 10) probably being the worst. She was also complaining about stomach problems this morning, which may or may not be related.
Gwyneth continues to show a greater awareness of her surroundings. She is beginning to grab more things with her hands, although I don't think she actually realizes that she is because she's not reaching for anything yet. She is smiling more and more, and is starting to show signs of laughter when we talk to her. She's drooling all over the place, which means more baths and changes of clothes.
I am still trying to find the balance between all of my responsibilities. We discovered, after the last treatment, that Tricia will become very disabled over these next few days, and somebody will need to be with her 24/7 until she's feeling better. It's a HUGE blessing to be so close to so much family, which allows me to fulfill other obligations (not that I consider my family an "obligation").
Thanks for your continued thoughts and prayers. I'll leave you today with my new favorite photo...
Nate
Gwyneth continues to show a greater awareness of her surroundings. She is beginning to grab more things with her hands, although I don't think she actually realizes that she is because she's not reaching for anything yet. She is smiling more and more, and is starting to show signs of laughter when we talk to her. She's drooling all over the place, which means more baths and changes of clothes.
I am still trying to find the balance between all of my responsibilities. We discovered, after the last treatment, that Tricia will become very disabled over these next few days, and somebody will need to be with her 24/7 until she's feeling better. It's a HUGE blessing to be so close to so much family, which allows me to fulfill other obligations (not that I consider my family an "obligation").
Thanks for your continued thoughts and prayers. I'll leave you today with my new favorite photo...
Nate
Sunday, August 17, 2008
Friday, August 15, 2008
Thursday, August 14, 2008
End of The Day
Today was long. Tricia had a busy morning dropping off the rental car and then picking up our car, which is now fixed. I was busy setting up and playing with the band most of the day. It was hot out in the sun, and I made sure to wear two layers of SPF 50 sunscreen (don't believe the myths), so, even after a long shower, I'm still hot and greasy, but sunburn free. Tricia and Gwyneth enjoyed rocking out with us in the shade for a while.
I had some bad info yesterday...Tricia was able to make her transplant clinic, and everything looks good. Because she'll receive her remaining chemo locally, and because Gwyneth looked so good, we don't have to go back to Duke for a few months (which is awesome). They've decided to not scan Tricia again until after her fourth round, as opposed to after the second round as they had originally decided. So, we won't know if the treatments are working until early October, which is find with us.
Thanks!
Nate
I had some bad info yesterday...Tricia was able to make her transplant clinic, and everything looks good. Because she'll receive her remaining chemo locally, and because Gwyneth looked so good, we don't have to go back to Duke for a few months (which is awesome). They've decided to not scan Tricia again until after her fourth round, as opposed to after the second round as they had originally decided. So, we won't know if the treatments are working until early October, which is find with us.
Thanks!
Nate
Wednesday, August 13, 2008
Report
First, Gwyneth weighs 8 lbs 9 oz! That is, by far, the most weight she's gained in such a short amount of time...her new diet is definitely working!
Tricia's chemo didn't get started until mid-afternoon, and, although it only lasted a few hours (which is much shorter than the first round), she was not able to go to her transplant clinic, so we really don't know anything about her status. Fortunately, Tricia did not experience any side effects during the treatment.
They're on their way home now, and should arrive around 10 tonight. Thanks for your thoughts and prayers today!
Nate
Tricia's chemo didn't get started until mid-afternoon, and, although it only lasted a few hours (which is much shorter than the first round), she was not able to go to her transplant clinic, so we really don't know anything about her status. Fortunately, Tricia did not experience any side effects during the treatment.
They're on their way home now, and should arrive around 10 tonight. Thanks for your thoughts and prayers today!
Nate
Fat Baby
I just got a text message from Tricia telling me Gwyneth's current weight.
Any guesses? Keep in mind that she was just under 7 1/2lbs exactly three weeks ago.
Nate
Any guesses? Keep in mind that she was just under 7 1/2lbs exactly three weeks ago.
Nate
Missing You
They made it safely to Duke...Tricia should be about an hour into her chemo treatment right now.
Nate
Nate
Tuesday, August 12, 2008
(Bump) *Not* All CFers Are Created Equal
This was originally posted on 3.21.08. I thought this would be a good post to bump back up to the top for those who missed it the first time.
So, after posting about some of our CF friends the past few weeks (I encourage you to go back and read some of the CF-related posts from early-mid March), I've had several people ask me about some of the differences between their conditions and Tricia's. I won't give you any more info about the other CFers, because I haven't asked for their permission to do so, but I will explain some of the differences that can be seen between CFers (again, realize that this info is coming from my own research and education and experience).
Every CFer is different from every other CFer for several reasons:
> There are thousands of mutations of the disease, and each mutation can show itself in different ways in different hosts. Some CFers show symptoms at birth and are diagnosed very early. Some show symptoms for years, but are either misdiagnosed or undiagnosed until later in life. Some show very few symptoms and are never diagnosed.
> CF can present itself it two big ways: Pulmonary (due to increased mucus production) and Digestive (due to a deficiency in pancreatic enzymes which help digest food), and therefore (from what I know), CFers can be divided into 4 categories:
1) Those have both major pulmonary and digestion problems (the vast majority). Tricia falls in this category. These patients have serious respiratory problems as well as serious problems with gaining and maintaining their weight. This is why most CFers (before they become incredibly sick) have to take pancreatic enzymes with every meal/snack (forgetting/refusing to take enzymes can be painful) and can eat a ton of food and always be very thin. These patients will often need both lung and liver/pancreas transplants.
2) Those who have major respiratory problems but little or no digestive problems because their pancreas can produce enzymes (about 15% of CFers). These patients tend to have little to no issues gaining and maintaining weight and are not restricted to a high calorie that most other CFers adhere to.
3) Those who have major digestive problems and minor respiratory problems. From what I know, this is very rare, as usually the respiratory issues are the most prevalent. These patients will often need liver or pancreas transplants.
4) Those who have little respiratory or digestive problems. These are usually the patients who are either mis or undiagnosed for their entire lives.
> Medical care can vary greatly. Unfortunately, some parents/guardians of CFers are either uneducated or unwilling to provide the needed care for their children. You would not believe how many stories I have heard (from children, grandparents, etc.) of parents/guardians who simply do not care about their child's CF....parents/guardians who smoke, provide unclean living conditions, ignore flares, neglect treatments, etc. And, unfortunately, even in the US, many CFers live in areas that do not have a hospital or CF Center near enough to provide the most necessary care/expertise/technology available.
> Personal decisions and attitude can vary greatly. Every CFer makes his/her own decision about his/her personal care as well as the risks he/she is willing to take. As Tricia grew older, she was given more responsibility for her own CF care. Fortunately, she has made the decision to do what her doctors advise and to live a fun but cautious life, but many do not make the same decisions.
> Finances can also have a huge affect on CF care. To provide the care needed for most CFers requires either great personal wealth, great insurance, or great help from third parties.
I'm sure there are several other factors that can affect a CFer's personal health and experiences, but these are the few that I could think of off the top of my head. As always, feel free to research CF further on your own.
Thanks!
Nate
So, after posting about some of our CF friends the past few weeks (I encourage you to go back and read some of the CF-related posts from early-mid March), I've had several people ask me about some of the differences between their conditions and Tricia's. I won't give you any more info about the other CFers, because I haven't asked for their permission to do so, but I will explain some of the differences that can be seen between CFers (again, realize that this info is coming from my own research and education and experience).
Every CFer is different from every other CFer for several reasons:
> There are thousands of mutations of the disease, and each mutation can show itself in different ways in different hosts. Some CFers show symptoms at birth and are diagnosed very early. Some show symptoms for years, but are either misdiagnosed or undiagnosed until later in life. Some show very few symptoms and are never diagnosed.
> CF can present itself it two big ways: Pulmonary (due to increased mucus production) and Digestive (due to a deficiency in pancreatic enzymes which help digest food), and therefore (from what I know), CFers can be divided into 4 categories:
1) Those have both major pulmonary and digestion problems (the vast majority). Tricia falls in this category. These patients have serious respiratory problems as well as serious problems with gaining and maintaining their weight. This is why most CFers (before they become incredibly sick) have to take pancreatic enzymes with every meal/snack (forgetting/refusing to take enzymes can be painful) and can eat a ton of food and always be very thin. These patients will often need both lung and liver/pancreas transplants.
2) Those who have major respiratory problems but little or no digestive problems because their pancreas can produce enzymes (about 15% of CFers). These patients tend to have little to no issues gaining and maintaining weight and are not restricted to a high calorie that most other CFers adhere to.
3) Those who have major digestive problems and minor respiratory problems. From what I know, this is very rare, as usually the respiratory issues are the most prevalent. These patients will often need liver or pancreas transplants.
4) Those who have little respiratory or digestive problems. These are usually the patients who are either mis or undiagnosed for their entire lives.
> Medical care can vary greatly. Unfortunately, some parents/guardians of CFers are either uneducated or unwilling to provide the needed care for their children. You would not believe how many stories I have heard (from children, grandparents, etc.) of parents/guardians who simply do not care about their child's CF....parents/guardians who smoke, provide unclean living conditions, ignore flares, neglect treatments, etc. And, unfortunately, even in the US, many CFers live in areas that do not have a hospital or CF Center near enough to provide the most necessary care/expertise/technology available.
> Personal decisions and attitude can vary greatly. Every CFer makes his/her own decision about his/her personal care as well as the risks he/she is willing to take. As Tricia grew older, she was given more responsibility for her own CF care. Fortunately, she has made the decision to do what her doctors advise and to live a fun but cautious life, but many do not make the same decisions.
> Finances can also have a huge affect on CF care. To provide the care needed for most CFers requires either great personal wealth, great insurance, or great help from third parties.
I'm sure there are several other factors that can affect a CFer's personal health and experiences, but these are the few that I could think of off the top of my head. As always, feel free to research CF further on your own.
Thanks!
Nate
This Week
Tricia and Gwyneth will be traveling to Durham early tomorrow morning with Tricia's mom. Both of my girls have appointments all day. Tricia has her second round of chemo as well as a transplant clinic, and Gwyneth has an appointment with her preemie docs.
We're praying that the transplant clinic shows that everything continues to look good, especially concerning rejection. We're also praying that the chemo goes well, and that, when we return in a few weeks for an exam, it will show that the treatments are killing the cancer.
We're praying that Gwyneth has grown to, at least, 8 lbs, and that her all of her blood work shows that she is as healthy as can be.
And, of course, we're praying that everyone will travel safe and be home again by tomorrow night or Thursday morning at the latest.
Yesterday, half-way to Norfolk, VA for Gwyneth's eye appointment, our car's computer decided that it wanted to confuse our transmission and cause problems. We had to turn around and take the car to the mechanic. It should be fixed and ready to go by Wednesday afternoon, but we'll have to rent a car tonight so that everyone can get off to Durham by 4am tomorrow morning. We've rescheduled the eye exam for later in the month.
My Band is playing at Kitty Hawk Kite's Watermelon Festival all day Thursday, so I'll be staying on the beach (in case Tricia gets "stuck" in Durham for more than a day). BTW, the Watermelon Festival is a huge family event that KHK sponsors every year...proceeds go to a few national and local children's charities. We're scheduled to play from 11am to 2pm, and the weather looks to be perfect.
Thanks for your thoughts and prayers this busy week!
Nate
We're praying that the transplant clinic shows that everything continues to look good, especially concerning rejection. We're also praying that the chemo goes well, and that, when we return in a few weeks for an exam, it will show that the treatments are killing the cancer.
We're praying that Gwyneth has grown to, at least, 8 lbs, and that her all of her blood work shows that she is as healthy as can be.
And, of course, we're praying that everyone will travel safe and be home again by tomorrow night or Thursday morning at the latest.
Yesterday, half-way to Norfolk, VA for Gwyneth's eye appointment, our car's computer decided that it wanted to confuse our transmission and cause problems. We had to turn around and take the car to the mechanic. It should be fixed and ready to go by Wednesday afternoon, but we'll have to rent a car tonight so that everyone can get off to Durham by 4am tomorrow morning. We've rescheduled the eye exam for later in the month.
My Band is playing at Kitty Hawk Kite's Watermelon Festival all day Thursday, so I'll be staying on the beach (in case Tricia gets "stuck" in Durham for more than a day). BTW, the Watermelon Festival is a huge family event that KHK sponsors every year...proceeds go to a few national and local children's charities. We're scheduled to play from 11am to 2pm, and the weather looks to be perfect.
Thanks for your thoughts and prayers this busy week!
Nate
Monday, August 11, 2008
Soccer Star
I tell Gwyneth she has two options for her future...Rock Star or Soccer Star. So far, she hasn't shown much interest in music, but, boy, does she have a killer kick...
Nate
Nate
Sunday, August 10, 2008
Friday Night
Before...
After...
Our good friend, Rich wanted to join in the fun to show Tricia his support as well.
Buddy obviously has some experience with shaving heads...
Nate