Hello, everyone! It has been far too long since I've posted an update about my beautiful mom!
We've received the second set of scans back and the results show that her cancer has reduced by 20% ... what??? In case you didn't catch that, this is amazing news! Mom is still often tired and having a hard time finding food appetizing, but the pain in her side has lessened and we now know this is due to the cancer shrinking back from the chemo. It's so good to know that the chemo is working given how hard it is on her body.
So what does this mean? It means that she may be around with us a little longer than we at first thought. It has been almost 6 months since her diagnosis ... which at that time we were told 3-6 months if chemo doesn't work and 11-12 months is the average survival rate if the chemo does work. Because the cancer is actually shrinking the doctor thinks she could be a good candidate for longer than the average 12 months. However, three months could go by and suddenly the cancer could retaliate with a vengence and start to take over her liver again. Or a year could go by and the cancer would no longer regress and begin spreading again. You just never can be sure (seeing a pattern here??). He did however remind us that when the time comes, Mom's health will decline slowly as opposed to a drastic change that leads to a quick passing. So we will have plenty of heads up that the end is drawing near.
I have bittersweet news that my Grandma ... my mom's mom ... passed away Sunday, October 13th. She had advanced Alzheimer's for several years leading up to her passing, so we'd all been praying for awhile that Jesus would take her home with him. She was a wonderful wonderful Mom and Grandma to our family ... we are so blessed to have so many wonderful memories of her. The interesting perspective in all of this is that my mom will get to see her Mom soon ... restored to her perfect self. My mom is SO excited to be able to join her in the arms of Jesus.
In memory of my Grandma, I posted the below video of her favorite hymn.
Sunday, November 3, 2013
Friday, September 6, 2013
Carolyn's Favorite Flowers
While on our Mackinac trip, I captured some film of Mom sharing her favorite flowers. I've also listed them below!
Carolyn's Favorite Flowers:
Foxgloves
Peonies
Roses that climb over trellis'
Lilies of the Valley
Pink Poppies
Rabbit Ears
SnapDragons
Zinnias
Coral Bells
Queen Ann's Lace
Black Eyed Susans
Daisies
Pink Cone Flowers
Clematis
Spirea Bush
Petunias
Alyssum
Hydrangea Bush
Tuesday, August 27, 2013
Scan Results & Mackinac Island
Hello, Everyone! Today Mom and I went to see the doctor to get an assessment of mom's scan results. You may remember that a month ago, the doctor sent my mom a note telling her that good news - she had no new cancer growth! Which excited us when we weren't sure what it really meant. So today we were able to get some direction.
Essentially, mom's cancer has not spread at all thanks to the chemo. We already knew this, but what he did reveal to us is that this is not common. Most patients with Cholangio Carcinoma don't respond to treatment which is why the statistics of living beyond 6-12 months is so low. He recently had one patient that didn't live past a month after diagnosis because his cancer spread so quickly. Mom's cancer looks to be one that is not only slow growing but also responsive to treatment. In the last 4 months, Mom's cancer has not grown even one centimeter. This is GREAT news! The doctor still wouldn't tell us how long he thinks Mom has, but did say that her chances to live longer than most are greatly increased.
Even with all of this great news ... Mom is still pretty weak from chemo and nauseous most of the time. The pain in her side is starting to come back and most days she feels best when she is at home resting or sitting on my front porch resting to enjoy the outdoors.
I know it's been forever since I've provided an update, but at this point we are just trying to adjust to our new normal. I've noticed a lot of traffic on this blog recently, and I'm sure it's because you are checking back to see any updates. Given that I may not update this blog quite as often, I encourage you to sign up to receive email updates so that you don't feel you've missed anything. The email sign-up is on the side of the page ---->
These days, Melissa, her girls, and I try to spend as much time as we can with Mom ... and Mom is trying to prepare for her passing and spend time with loved ones. We appreciate your patience with us as our time is being stretched. Given that we have NO idea how long we have mom with us, we are trying to balance work, time as a family, other commitments ... and then squeezing in friends when we can. If you could please be praying that we figure out balance. And that we enjoy each moment that we can together.
Speaking of enjoying time together ... I took Mom on a surprise mini-vacation to ... Mackinac Island! It was a 7 hour trip there where we spent 2.5 glorious days! I'll let the photos speak for themselves!
Essentially, mom's cancer has not spread at all thanks to the chemo. We already knew this, but what he did reveal to us is that this is not common. Most patients with Cholangio Carcinoma don't respond to treatment which is why the statistics of living beyond 6-12 months is so low. He recently had one patient that didn't live past a month after diagnosis because his cancer spread so quickly. Mom's cancer looks to be one that is not only slow growing but also responsive to treatment. In the last 4 months, Mom's cancer has not grown even one centimeter. This is GREAT news! The doctor still wouldn't tell us how long he thinks Mom has, but did say that her chances to live longer than most are greatly increased.
Even with all of this great news ... Mom is still pretty weak from chemo and nauseous most of the time. The pain in her side is starting to come back and most days she feels best when she is at home resting or sitting on my front porch resting to enjoy the outdoors.
I know it's been forever since I've provided an update, but at this point we are just trying to adjust to our new normal. I've noticed a lot of traffic on this blog recently, and I'm sure it's because you are checking back to see any updates. Given that I may not update this blog quite as often, I encourage you to sign up to receive email updates so that you don't feel you've missed anything. The email sign-up is on the side of the page ---->
These days, Melissa, her girls, and I try to spend as much time as we can with Mom ... and Mom is trying to prepare for her passing and spend time with loved ones. We appreciate your patience with us as our time is being stretched. Given that we have NO idea how long we have mom with us, we are trying to balance work, time as a family, other commitments ... and then squeezing in friends when we can. If you could please be praying that we figure out balance. And that we enjoy each moment that we can together.
Speaking of enjoying time together ... I took Mom on a surprise mini-vacation to ... Mackinac Island! It was a 7 hour trip there where we spent 2.5 glorious days! I'll let the photos speak for themselves!
Tuesday, August 6, 2013
We're back from Florida!
I know I'm way overdue on giving an update on the Florida trip - it was nothing short of perfect! We had 10 days together as a family to relax and take a break from life ... chemo ... work ... get-togethers ... commitments ... all of those things that tend to get in the way of our ability to spend the intentional time we'd like with our mom.
For the most part, we stayed near Sarasota on Longboat Key - swimming in the pool, reading books, walking to the beach, and visiting local restaurants. But we did spend 3 days at Disney World at the Saratoga Springs Resort swimming in the pool, zipping down water slides, watching a movie under the stars, and spending a day at Magic Kingdom.
The weather was perfect. I know the weather back home in Indy was a cool 60's and 70's. The cooler weather translated in Florida to a breezy 80's which was perfect for the beach and the pool. Leading up to Disney World we were worried that the heat would be unbearable for Mom, but instead it was a very cloudy day with only occasional showers making it a rather cool day at the park! Mom had a lot of strength on this trip given that she was able to take 2 weeks off from chemo. It was such a blessing because it felt like we had our beloved Mom back!
I wanted to thank all of you one more time for your amazing donations to make this trip a reality. We were so thrilled to have the opportunity to take this trip - it almost didn't seem right that we couldn't take all of you with us. But from the bottom of our hearts - thank you!
I'll stop talking here and let the photos speak for themselves.
For the most part, we stayed near Sarasota on Longboat Key - swimming in the pool, reading books, walking to the beach, and visiting local restaurants. But we did spend 3 days at Disney World at the Saratoga Springs Resort swimming in the pool, zipping down water slides, watching a movie under the stars, and spending a day at Magic Kingdom.
The weather was perfect. I know the weather back home in Indy was a cool 60's and 70's. The cooler weather translated in Florida to a breezy 80's which was perfect for the beach and the pool. Leading up to Disney World we were worried that the heat would be unbearable for Mom, but instead it was a very cloudy day with only occasional showers making it a rather cool day at the park! Mom had a lot of strength on this trip given that she was able to take 2 weeks off from chemo. It was such a blessing because it felt like we had our beloved Mom back!
I wanted to thank all of you one more time for your amazing donations to make this trip a reality. We were so thrilled to have the opportunity to take this trip - it almost didn't seem right that we couldn't take all of you with us. But from the bottom of our hearts - thank you!
I'll stop talking here and let the photos speak for themselves.
Disney
Longboat Key
Friday, July 19, 2013
We do not lose heart as we look into the things that are unseen
2 Corinthians 4:16-18 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.
So Mom had her CT scan this past Tuesday (coincidentally on my bday). The results of this CT scan will reveal whether or not the chemo is working (chemo working = no new cancer cell growth, chemo not working = new cancer cell growth). At this appointment, Mom had asked the Dr. not to give her the results yet so that she could have a worry free vacation (yes, we leave TODAY for the vaca!). He agreed not to give her the results and off she went on her merry way.
Fast forward a few days, and Mom starts packing. Then she starts wondering... am I allowed to even swim after having been on chemo? Is it ok to be in chlorine and/or the ocean?? So she decides to email her doctor to get his perspective.
His response:
Ms. Neal, Swimming in ocean or pool are both no problem. You can swim anywhere you want. Use an SPF above 50 all the time. Your scans look good--there has been no growth of the tumors! So the chemo appears to be working. Hope that gives you a little lift before departing on your vacation. If you need to talk, let me know.
WHAAAAT!?!? The chemo is working???? His email was brief ... leaving us with so many questions, but ultimately we were just relieved that it is having a positive affect on mom's cancer! What GREAT news to get before we leave for our last family vacation!
So you might be asking - ok so what does this mean exactly?? When the doctor first gave us the diagnosis he said that the average person with this cancer upon diagnosis has 3-6 months left to live if they don't do chemo or if the chemo doesnt work for them. If the patient decides to move forward with chemo and the chemo works, on average they have 11-12 months to live after diagnosis. And 20-30% of those people live up to 2 years. Our prayer is that she does live 2 years longer, and given that the chemo is working - this is an actual possibility!
Answer to prayers!
I also wanted to quickly share with you some photos from a boating trip that Mom went on with her brothers and sister-in-laws!
So Mom had her CT scan this past Tuesday (coincidentally on my bday). The results of this CT scan will reveal whether or not the chemo is working (chemo working = no new cancer cell growth, chemo not working = new cancer cell growth). At this appointment, Mom had asked the Dr. not to give her the results yet so that she could have a worry free vacation (yes, we leave TODAY for the vaca!). He agreed not to give her the results and off she went on her merry way.
Fast forward a few days, and Mom starts packing. Then she starts wondering... am I allowed to even swim after having been on chemo? Is it ok to be in chlorine and/or the ocean?? So she decides to email her doctor to get his perspective.
His response:
Ms. Neal, Swimming in ocean or pool are both no problem. You can swim anywhere you want. Use an SPF above 50 all the time. Your scans look good--there has been no growth of the tumors! So the chemo appears to be working. Hope that gives you a little lift before departing on your vacation. If you need to talk, let me know.
WHAAAAT!?!? The chemo is working???? His email was brief ... leaving us with so many questions, but ultimately we were just relieved that it is having a positive affect on mom's cancer! What GREAT news to get before we leave for our last family vacation!
So you might be asking - ok so what does this mean exactly?? When the doctor first gave us the diagnosis he said that the average person with this cancer upon diagnosis has 3-6 months left to live if they don't do chemo or if the chemo doesnt work for them. If the patient decides to move forward with chemo and the chemo works, on average they have 11-12 months to live after diagnosis. And 20-30% of those people live up to 2 years. Our prayer is that she does live 2 years longer, and given that the chemo is working - this is an actual possibility!
Answer to prayers!
I also wanted to quickly share with you some photos from a boating trip that Mom went on with her brothers and sister-in-laws!
Thursday, July 11, 2013
Chemo Cycle is Done!
a note from Kristen
Mom had her last chemo yesterday before our family Florida vacation arrives! This also marks her last chemo for her 9 week treatment cycle. Within the last 9 weeks she has had a total of 6 chemo treatments to try to reduce the cancer cells in her liver. Out of those 6 chemo treatments she was rushed to the ER only once for a high fever, felt sick with fever two other times, and the other three times had no fever and only experienced weakness and fatigue. She has lost almost no hair and maintained her weight. Her blood work results have continued to be exceptional after the first scare of high calcium. She has started noticing small changes in her body from the affects of her cancer, but nothing even close to serious yet. We're praying very hard that God allows her to stay with us for TWO years (only 15-20% of patients with her type of cancer live that long) instead of just 6-12 months. Please pray with us that she does! She is having a CT scan taken on July 16 to identify whether or not the chemo is having any affect. Please pray HARD that it is!!! We've made the decision that we do not want to know the results until after we get back from Florida. We want to take this trip with a clear minds free from worry.
Speaking of Florida, we have just over a week before our much anticipated vacation! As I mentioned once before, this will be our first family vacation in over 10 years! This is only possible because of all of YOU - the amazing friends and family who have supported us during this time. Not only is this an amazing Make a Wish for mom, but also a fantastic Birthday gift to her! Our last day in Florida will be on her birthday. :) If you need any extra gift ideas for Mom ;) ... she LOVES pasta salads right now. Her taste buds have changed drastically from cancer and chemo and her biggest craving is pasta salad - so crazy! In fact, she looks forward to chemo visits because the hospital cafeteria has pasta salad. Weird, right? Facebook message me if you want to help out with providing Pasta Salads. :)
We will definitely share photos of our trip with you guys so you can partake in the experience with us! Not only has our flights been taken care of, and a house on the water provided to us, but one of my co-workers donated a two night stay at the Saratoga Springs resort at Disney Parks! Her father had been a Disney fan and she felt that he was telling her to share Disney with us. Mom's grandchildren (my nieces) are going to flip out! We haven't given them many details of this upcoming vacation. They think our vacation consists of just staying at a hotel ... which to them means they get to swim every day. They have no idea there is a beach or Disney involved! <3
Thank you, Bickel/Flannery and Newport family for the special gifts!
Mom had her last chemo yesterday before our family Florida vacation arrives! This also marks her last chemo for her 9 week treatment cycle. Within the last 9 weeks she has had a total of 6 chemo treatments to try to reduce the cancer cells in her liver. Out of those 6 chemo treatments she was rushed to the ER only once for a high fever, felt sick with fever two other times, and the other three times had no fever and only experienced weakness and fatigue. She has lost almost no hair and maintained her weight. Her blood work results have continued to be exceptional after the first scare of high calcium. She has started noticing small changes in her body from the affects of her cancer, but nothing even close to serious yet. We're praying very hard that God allows her to stay with us for TWO years (only 15-20% of patients with her type of cancer live that long) instead of just 6-12 months. Please pray with us that she does! She is having a CT scan taken on July 16 to identify whether or not the chemo is having any affect. Please pray HARD that it is!!! We've made the decision that we do not want to know the results until after we get back from Florida. We want to take this trip with a clear minds free from worry.
Speaking of Florida, we have just over a week before our much anticipated vacation! As I mentioned once before, this will be our first family vacation in over 10 years! This is only possible because of all of YOU - the amazing friends and family who have supported us during this time. Not only is this an amazing Make a Wish for mom, but also a fantastic Birthday gift to her! Our last day in Florida will be on her birthday. :) If you need any extra gift ideas for Mom ;) ... she LOVES pasta salads right now. Her taste buds have changed drastically from cancer and chemo and her biggest craving is pasta salad - so crazy! In fact, she looks forward to chemo visits because the hospital cafeteria has pasta salad. Weird, right? Facebook message me if you want to help out with providing Pasta Salads. :)
We will definitely share photos of our trip with you guys so you can partake in the experience with us! Not only has our flights been taken care of, and a house on the water provided to us, but one of my co-workers donated a two night stay at the Saratoga Springs resort at Disney Parks! Her father had been a Disney fan and she felt that he was telling her to share Disney with us. Mom's grandchildren (my nieces) are going to flip out! We haven't given them many details of this upcoming vacation. They think our vacation consists of just staying at a hotel ... which to them means they get to swim every day. They have no idea there is a beach or Disney involved! <3
Thank you, Bickel/Flannery and Newport family for the special gifts!
(Saratoga Springs Resort)
Wednesday, June 26, 2013
Memories Last Forever
For some life lasts a short while, but the memories it holds last forever. - Laura Swenson
When we first found out that Mom had terminal cancer, my mind went into overtime thinking about all the things I wanted to do with her in the time that I had left. A photo session with the family was at the TOP of my list! God, in His providence, had already gifted Melissa with a free photo session for the Spring with my wedding photographer, Emily Weis, as part of the Olivia Act that Emily signed up for. I immediately reached out to Emily asking if we could squeeze in a few family photos in addition to the photos Melissa would be taking with her girls. In all of her goodness, she said yes! Please bear with me while I brag on Emily Weis for a moment. She is seriously the BEST photographer in her flexibility and the way she makes you feel SO comfortable for photos. She's so wonderful and sweet that you immediately feel that she is a friend. And let's not forget how great her photos always turn out - we all just about died when we saw the results!
The day of the photoshoot threatened thunderstorms during the exact time we were going to get them shot, but fortunately the clouds held back and we were greeted with breeze and sunshine. Emily had suggested we get the photos taken at the Historic Ambassador House in Fishers. I had never heard of the location but trusted that it would be a good spot. And it couldn't have been more perfect. The southern style home and flower beds were well suited for our tea party theme. All of us girls love love tea parties and will even break out the tea cups when we are having dinner together and fill them with water. :)
Check out her blog post with the photo highlights from the shoot - http://www.emilyweisphotographyblog.com/a-very-special-session/
And I saved the best for last - one of the main reasons I chose Emily for my wedding was because she hands over the original images and allows you to keep them and print them wherever you'd like! If you'd like access to the photos, all you have to do is open them here. Feel free to print them at Walmart, Walgreens, etc if you fancy one for yourself. :)
Here are just a few of our favorites that weren't in Emily's blog post! Thank you, Emily!!!
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When we first found out that Mom had terminal cancer, my mind went into overtime thinking about all the things I wanted to do with her in the time that I had left. A photo session with the family was at the TOP of my list! God, in His providence, had already gifted Melissa with a free photo session for the Spring with my wedding photographer, Emily Weis, as part of the Olivia Act that Emily signed up for. I immediately reached out to Emily asking if we could squeeze in a few family photos in addition to the photos Melissa would be taking with her girls. In all of her goodness, she said yes! Please bear with me while I brag on Emily Weis for a moment. She is seriously the BEST photographer in her flexibility and the way she makes you feel SO comfortable for photos. She's so wonderful and sweet that you immediately feel that she is a friend. And let's not forget how great her photos always turn out - we all just about died when we saw the results!
The day of the photoshoot threatened thunderstorms during the exact time we were going to get them shot, but fortunately the clouds held back and we were greeted with breeze and sunshine. Emily had suggested we get the photos taken at the Historic Ambassador House in Fishers. I had never heard of the location but trusted that it would be a good spot. And it couldn't have been more perfect. The southern style home and flower beds were well suited for our tea party theme. All of us girls love love tea parties and will even break out the tea cups when we are having dinner together and fill them with water. :)
Check out her blog post with the photo highlights from the shoot - http://www.emilyweisphotographyblog.com/a-very-special-session/
And I saved the best for last - one of the main reasons I chose Emily for my wedding was because she hands over the original images and allows you to keep them and print them wherever you'd like! If you'd like access to the photos, all you have to do is open them here. Feel free to print them at Walmart, Walgreens, etc if you fancy one for yourself. :)
Here are just a few of our favorites that weren't in Emily's blog post! Thank you, Emily!!!
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Thursday, June 20, 2013
His love reaches to the Heavens
Your love, O Lord, reaches to the heavens, your faithfulness to the skies - Psalm 36:5
Thursdays after chemo (which now takes place on Tuesdays) are always Mom's worst days. We prepared as usual for that day by Melissa going grocery shopping for her to have good, healthy food for her to eat and packing her an overnight bag. Mom then came over Wednesday evening to settle in and sleep in the Guest Bedroom. This morning I woke up to check on her and she said it was the best night's sleep she's had in over a month - awesome! We waited all morning for her to have a fever but ... it never came! In fact she didn't feel quite as weak as usual! Thank you, Lord, for giving her rest and peace!
Mom has been borrowing a book that my Bible Study went through recently, Knowing God by Name, written by Mary Kassian. It is the perfect book for understanding the depth of God's multifaceted character. And a great way for her to know and understand Him better before she gets to meet Him! She has been loving it. "In Knowing God by Name: A Personal Encounter, author Mary Kassian focuses on 35 Hebrew names of God that describe His character, His relationships, and His purpose. As you learn the significance of each ancient word, you'll be awestruck by the Lord's magnificence and your heart compelled to worship and praise Him." I highly recommend this book if you want to get a clearer picture of who He is.
Thursdays after chemo (which now takes place on Tuesdays) are always Mom's worst days. We prepared as usual for that day by Melissa going grocery shopping for her to have good, healthy food for her to eat and packing her an overnight bag. Mom then came over Wednesday evening to settle in and sleep in the Guest Bedroom. This morning I woke up to check on her and she said it was the best night's sleep she's had in over a month - awesome! We waited all morning for her to have a fever but ... it never came! In fact she didn't feel quite as weak as usual! Thank you, Lord, for giving her rest and peace!
Mom has been borrowing a book that my Bible Study went through recently, Knowing God by Name, written by Mary Kassian. It is the perfect book for understanding the depth of God's multifaceted character. And a great way for her to know and understand Him better before she gets to meet Him! She has been loving it. "In Knowing God by Name: A Personal Encounter, author Mary Kassian focuses on 35 Hebrew names of God that describe His character, His relationships, and His purpose. As you learn the significance of each ancient word, you'll be awestruck by the Lord's magnificence and your heart compelled to worship and praise Him." I highly recommend this book if you want to get a clearer picture of who He is.
Monday, June 17, 2013
Long overdue update
Yard Sale Results!
This last Saturday we had the long awaited yard sale that my wonderful friend Jasmin volunteered to coordinate and host at her house in Irvington. So many people donated to the yard sale it was unreal how much stuff we had to sell! We had a steady trickle of customers throughout the entire day and by 5pm raised $400 through the yard sale in addition to the $7,800 that was donated through the fundraiser site! Wow!
Florida Vacation Update!
As most of you know, I work downtown at ExactTarget. Employees are able to join internal organizations such as ExactImpact, ExactWellness, ExactFun, etc. Well today, ExactImpact - the service/volunteer organization - donated $500 to the Florida trip! What a great company I work for! Before I close on this topic, I want to send an updated thanks to those that have recently donated to the Make a Wish! Thank you Rachel Johnson, Mary Ryan, Uncle Ron and Aunt Kathy, Stephanie Schilling, Jan and Tony Elrod, Jerry Brenner, Sandra Maldoando, Louise Andrew, Colin McSharar, the Whetsels, and many more that chose to remain anonymous.
Mom's recent chemo
Mom had a wonderful week off from chemo - she was able to get her energy back and spend a lot of time with some friends and family. She saw her Uncles, spent quality time with her long-time friend Debra, and enjoyed relaxing with Melissa and her granddaughters, etc.
Little did we know it was the quiet before the storm. Last Tuesday she had her regularly scheduled chemo and then Thursday she was hit with a high fever requiring a visit to the ER. Thankfully she had spent the night at Aunt Cindy's house and she was able to rely on her to get her to the ER and back. She is ok now, but it was a scary couple of hours for Mom!
Thank you for your continued prayers and support! Mom is still feeling pretty good (no liver pain) - just a little weak at the moment.
This last Saturday we had the long awaited yard sale that my wonderful friend Jasmin volunteered to coordinate and host at her house in Irvington. So many people donated to the yard sale it was unreal how much stuff we had to sell! We had a steady trickle of customers throughout the entire day and by 5pm raised $400 through the yard sale in addition to the $7,800 that was donated through the fundraiser site! Wow!
Florida Vacation Update!
As most of you know, I work downtown at ExactTarget. Employees are able to join internal organizations such as ExactImpact, ExactWellness, ExactFun, etc. Well today, ExactImpact - the service/volunteer organization - donated $500 to the Florida trip! What a great company I work for! Before I close on this topic, I want to send an updated thanks to those that have recently donated to the Make a Wish! Thank you Rachel Johnson, Mary Ryan, Uncle Ron and Aunt Kathy, Stephanie Schilling, Jan and Tony Elrod, Jerry Brenner, Sandra Maldoando, Louise Andrew, Colin McSharar, the Whetsels, and many more that chose to remain anonymous.
Mom's recent chemo
Mom had a wonderful week off from chemo - she was able to get her energy back and spend a lot of time with some friends and family. She saw her Uncles, spent quality time with her long-time friend Debra, and enjoyed relaxing with Melissa and her granddaughters, etc.
Thank you for your continued prayers and support! Mom is still feeling pretty good (no liver pain) - just a little weak at the moment.
Monday, June 3, 2013
Family Sunday Brunches
A note from Kristen ....
This past Sunday my Aunt Cindy hosted all of our family over for brunch. It's going to be a regular gathering for us so Mom can visit with her family as much as possible in the next year. Mad props to Aunt Cindy for hosting - it is no regular feat to get us all together in one place ... not to mention feeding us! Mom was 1 of 6 children so there are many cousins and aunts and uncles in the mix. We had a great time and were even blessed to have Mom's Aunt Janis and Aunt Lois (which are her mom's sisters) join us.
This past Sunday my Aunt Cindy hosted all of our family over for brunch. It's going to be a regular gathering for us so Mom can visit with her family as much as possible in the next year. Mad props to Aunt Cindy for hosting - it is no regular feat to get us all together in one place ... not to mention feeding us! Mom was 1 of 6 children so there are many cousins and aunts and uncles in the mix. We had a great time and were even blessed to have Mom's Aunt Janis and Aunt Lois (which are her mom's sisters) join us.
Sunday, May 26, 2013
Blessings shower down!
Ye fearful saints, fresh courage take; The clouds ye so much dread are big with mercy and shall break in blessings on your head. - William Cowper
2nd round of Chemo...
Mom had her 2nd chemo infusion last Friday and took it like a champ ... she was a little nervous given how bad she felt the Sunday after last time. She had her blood work tested and her calcium levels are back to normal! The doctor was SO proud of her and said she must have drank BUCKETS of water to wash all of that calcium out of her body. We had purchased a water bottle that has a ticker on it so she can monitor her water intake. She's been trying to drink 3 liters of water a day!! That's 3x what doctors recommend for the average person. Today is Sunday ... and for Mom that means it is the toughest day following chemo. God must have heard all of your prayers because other than feeling weak she has felt awesome all day!! Such a blessing. Her liver continues to feel fine - occasionally she will feel some mild pain but it then goes away.
How can we thank you!!??
In case you haven't heard yet ... we raised the funds we needed for a Florida trip within TWO days!! That was faster than we ever could have imagined!! In fact, we weren't even sure that we'd reach our goal when we first discussed setting up the fundraiser. We sure underestimated the love and care from our friends and family! We don't have the words to know how to thank you each and every one of you who contributed to making this trip possible. We are deeply grateful to Uncle Leon's family, Uncle Dan and Aunt Jan, the Goldmans, Jordan Goldman, the de la Rosa's, Diane Wesley, the Bohnerts, the Brandli's, Amy Babbitt, Nicole Ross, Amanda Mays, the Paynes, the Cavanaughs, the Enrights, Kathy Somerville, Jane Riley, Sarah Benson, Aunt Cindy, Blaise and Laramie, Carla Nealy, the Paynes, Sharon Broughton, the Finneys and so many others who chose to remain anonymous for your generous contributions. I must also thank the Flannery and Bickel family for the surprise donation of their Florida home and flights for this trip! All of you have brought us to tears and made us completely speechless. All I can really do is say an eternal thank you!
A note from Carolyn (Mom)...
How do I express my deep felt, sincere gratitude for all the love and generosity from all the loving kind friends and family!!!!! There are no words to convey what is in my heart!! Only tears come... I am very humbled by this show of love!! This journey continues to heighten my awareness of beauty and love of everyone! Thank you!
Need new stuff??
Jasmin Snyder is also hosting a yard sale next weekend at her house to raise additional money (because honestly we weren't sure we'd reach our goal via the online fundraiser). As I mentioned in our last blog post, any extra money that is raised will go towards all of the other financial issues that come up in a situation like ours - paying for medicine, chemo, dr visits, and more! If you have the time, please come out to the yard sale whether it be to donate items or to peruse all of the donations (so so much has already come in!!).
Yard Sale Facebook Invite - https://www.facebook.com/
William Cowper puts it best!!
God moves in a mysterious way His wonders to perform; He plants His footsteps in the sea And rides upon the storm. Deep in unfathomable mines Of never failing skill He treasures up His bright designs And works His sovereign will. Ye fearful saints, fresh courage take; The clouds ye so much dread Are big with mercy and shall break In blessings on your head. Judge not the Lord by feeble sense, But trust Him for His grace; Behind a frowning providence He hides a smiling face. His purposes will ripen fast, Unfolding every hour; The bud may have a bitter taste, But sweet will be the flower. Blind unbelief is sure to err And scan His work in vain; God is His own interpreter, And He will make it plain.
2nd round of Chemo...
Mom had her 2nd chemo infusion last Friday and took it like a champ ... she was a little nervous given how bad she felt the Sunday after last time. She had her blood work tested and her calcium levels are back to normal! The doctor was SO proud of her and said she must have drank BUCKETS of water to wash all of that calcium out of her body. We had purchased a water bottle that has a ticker on it so she can monitor her water intake. She's been trying to drink 3 liters of water a day!! That's 3x what doctors recommend for the average person. Today is Sunday ... and for Mom that means it is the toughest day following chemo. God must have heard all of your prayers because other than feeling weak she has felt awesome all day!! Such a blessing. Her liver continues to feel fine - occasionally she will feel some mild pain but it then goes away.
How can we thank you!!??
In case you haven't heard yet ... we raised the funds we needed for a Florida trip within TWO days!! That was faster than we ever could have imagined!! In fact, we weren't even sure that we'd reach our goal when we first discussed setting up the fundraiser. We sure underestimated the love and care from our friends and family! We don't have the words to know how to thank you each and every one of you who contributed to making this trip possible. We are deeply grateful to Uncle Leon's family, Uncle Dan and Aunt Jan, the Goldmans, Jordan Goldman, the de la Rosa's, Diane Wesley, the Bohnerts, the Brandli's, Amy Babbitt, Nicole Ross, Amanda Mays, the Paynes, the Cavanaughs, the Enrights, Kathy Somerville, Jane Riley, Sarah Benson, Aunt Cindy, Blaise and Laramie, Carla Nealy, the Paynes, Sharon Broughton, the Finneys and so many others who chose to remain anonymous for your generous contributions. I must also thank the Flannery and Bickel family for the surprise donation of their Florida home and flights for this trip! All of you have brought us to tears and made us completely speechless. All I can really do is say an eternal thank you!
A note from Carolyn (Mom)...
How do I express my deep felt, sincere gratitude for all the love and generosity from all the loving kind friends and family!!!!! There are no words to convey what is in my heart!! Only tears come... I am very humbled by this show of love!! This journey continues to heighten my awareness of beauty and love of everyone! Thank you!
Need new stuff??
Jasmin Snyder is also hosting a yard sale next weekend at her house to raise additional money (because honestly we weren't sure we'd reach our goal via the online fundraiser). As I mentioned in our last blog post, any extra money that is raised will go towards all of the other financial issues that come up in a situation like ours - paying for medicine, chemo, dr visits, and more! If you have the time, please come out to the yard sale whether it be to donate items or to peruse all of the donations (so so much has already come in!!).
Yard Sale Facebook Invite - https://www.facebook.com/
William Cowper puts it best!!
God moves in a mysterious way His wonders to perform; He plants His footsteps in the sea And rides upon the storm. Deep in unfathomable mines Of never failing skill He treasures up His bright designs And works His sovereign will. Ye fearful saints, fresh courage take; The clouds ye so much dread Are big with mercy and shall break In blessings on your head. Judge not the Lord by feeble sense, But trust Him for His grace; Behind a frowning providence He hides a smiling face. His purposes will ripen fast, Unfolding every hour; The bud may have a bitter taste, But sweet will be the flower. Blind unbelief is sure to err And scan His work in vain; God is His own interpreter, And He will make it plain.
Thursday, May 23, 2013
Carolyn's Make a Wish!
Sunday my mom was feeling very very sick (nauseous, headache, weak, fever) from the chemo side affects so she came over to my place to rest. By Monday, she was starting to feel SO much better and was even able to take a walk around the block with me! We are looking into possibly changing her chemo schedule to Tuesdays so that her worst days are on the week day instead of on the weekend when she wants to be able to visit with loved ones! One amazing answer to prayer is that Mom has not been experiencing any pain in her right side for the past few days!! She is able to sit and stand with hardly any problems ... which hasn't been true for her these last three months. Thank you, Lord, for your goodness!!!
Since the diagnosis was given 2 weeks ago, I've been asking Mom to create a bucket list ... you know ... one of those "live like you were dying" type of lists. And the one and only thing she keeps talking about is going on one last Florida vacation with all of her girls. Some of her favorite memories are relaxing on the beach and building sand castles with us. It's truly the one thing she wants!
Since the diagnosis was given 2 weeks ago, I've been asking Mom to create a bucket list ... you know ... one of those "live like you were dying" type of lists. And the one and only thing she keeps talking about is going on one last Florida vacation with all of her girls. Some of her favorite memories are relaxing on the beach and building sand castles with us. It's truly the one thing she wants!
Because we have no idea how long Mom has to live (the doctor really won't give us a good answer), we are planning a vacation to Florida in July so Mom's wish can come true ... and so we can take her grandchildren to Disney's Magic Kingdom for a day. They are so in love with Disney that Mom wants to be able to share this experience with them.
A place to stay in Florida has already been generously donated to us (another direct answer to prayer). We are hoping to raise $5,000 to cover the travel costs, food for the week, Disney tickets and more for 6 people! But really any little bit helps! We thank each and every one of you for your amazing love, prayers and support throughout all of this! You are all truly special and amazing! Anything extra that we raise (which would be awesome, but not necessary!) will go towards medical bills and everything that comes with this.
Friday, May 17, 2013
First Chemo down!
A note from Kristen... should we just assume all blog posts will come from me at this point?? :)
Chemo ... doesn't suck. Surprise surprise. Mom was a trooper! It took 4 hours in total for mom to receive all of the infusions, but was a restful nice afternoon for her. We had tea and scones and talked about the past and the future. It was surprisingly a good time!
We did learn though that her Calcium levels were really high and her Doctor is pretty confident that she might have Hypercalcaemia. He thinks it is because of the cancer and not because of a pre-condition. Because of this she needs additional medication as she is at risk of bone deterioration in her jaw (why her jaw I have noooo idea).
He also told us that he won't be ordering another CT scan of her liver until 9 weeks from now as it takes that long to see the affects of chemo. So hopefully by then her liver will shrink enough to remove the discomfort and hopefully her body will respond to the chemo in such a positive manner that it extends her life. 15-20% of cholangiocarcinoma patients live 2 years after diagnosis due to how well they respond to treatments - I'm praying that she is one of them.
Here is a view of mom's chemo "corner".
:)
Thursday, May 16, 2013
Chemo
A note from Kristen...
Yesterday, my mom had a bone scan taken to see if the cancer has spread to her bones. The results from this test should show us how extensive her cancer has spread and maybe even give us a better idea of how long Mom has.
Tomorrow (Friday) is Mom's first day of chemo. Because it is her first time, we will probably be at the hospital almost all day ... but going forward it will more than likely only take 4 hours at a time.
Please pray for Mom during this first time! We are both a little nervous because we don't know how it will affect her!
Please also be in prayer that her body responds to the chemo. 1) so that her duration of life may be longer and 2) so that her liver will reduce in size. Her liver has almost doubled in size because of it's reaction to the cancer causing significant discomfort. The doctor told us that there is a chance the chemo will kill enough of the cancer cells so that her liver shrinks back to a more comfortable size so that she doesn't experience pain when she is sitting and standing.
Yesterday, my mom had a bone scan taken to see if the cancer has spread to her bones. The results from this test should show us how extensive her cancer has spread and maybe even give us a better idea of how long Mom has.
Tomorrow (Friday) is Mom's first day of chemo. Because it is her first time, we will probably be at the hospital almost all day ... but going forward it will more than likely only take 4 hours at a time.
Please pray for Mom during this first time! We are both a little nervous because we don't know how it will affect her!
Please also be in prayer that her body responds to the chemo. 1) so that her duration of life may be longer and 2) so that her liver will reduce in size. Her liver has almost doubled in size because of it's reaction to the cancer causing significant discomfort. The doctor told us that there is a chance the chemo will kill enough of the cancer cells so that her liver shrinks back to a more comfortable size so that she doesn't experience pain when she is sitting and standing.
Sunday, May 12, 2013
The Cancer Diagnosis - Cholangio Carcinoma
A note from Kristen ---------------------------------------------------------------------------------------------------------------------------------------------
Last Friday was an important day in this cancer diagnosis journey. We were meeting with a new doctor who specialized in identifying cancer. He came well recommended. Mom, Melissa and myself went alone to this appointment as we knew we were likely to receive significant news and wanted to keep it to just us three. You see, for the last 15 years, the three of us have been a team. Just us three girls living together under one roof during middle school, high-school, and even college summers ... the three of us together. This meant the 3 of us went to see chick flicks at the theatre whenever we wanted (even on school nights!), ice cream and cookies were a regular meal (it totally counts!), Disney movie nights in our living room all of us cuddled up in sleeping bags. We did everything together - we've always been a team. So it made sense that for this appointment ... this significant day in our lives ... it would be just us three.
We arrived at the IU Med center with an hour to spare before the appointment (nervous much?). We went to the cafeteria and grabbed some soft drinks and sat down and just talked. I prepared them in case the worst should be said ... based on my research on the internet - it's never a good thing for someone's liver to be so infiltrated with cancer. Not a good thing at all. Miracles do happen. But the odds were against us. We sat quietly as we digested and sipped our drinks as a few tears slipped here and there. I think we all just didnt know what to think, but were just trying to prepare ourselves.
We then grabbed one another's hands and prayed. We prayed for answers ... anything that we could grab onto that the doctors could provide us with. We prayed for peace ... acceptance for whatever news may come. And we thanked Him for His goodness ... we've had so so many wonderful years as a team that we have just been more than blessed. We thanked him for each other. And for Him.
Then it was time to meet with the Doctor. He sat us down and asked Mom to share with him her version of her journey with this cancer. He had seen the CT scans, the biopsy results, her charts ... but he wanted the story. He then started asking her a series of questions to gauge her level of distress over knowing she had cancer. She explained that she knew it was most likely stage 4 and that there was a very good chance she didnt have long to live. He looked at her in confusion and asked her how she was so calm and peaceful given the dire circumstances. He said everyone that came to see him were freaking out, upset, distressed, and not doing well. And here Mom sat without a crack in her voice, without a tear in her eye, and a smile on her face. I'm not exaggerating here - Mom was so peaceful.
"I am a Christian and Jesus lives in my heart and I know where I'm going. If you're not a Christian you are not going to understand. But God is Sovereign and I trust Him and I am excited about seeing Jesus."
He was still very conflicted by her response. It was clear he didn't have faith in God and even responded with "Everyone has a tool that helps them cope and yours seems to be particularly effective." He then took a deep breath and explained that he actually had a diagnosis for Mom. And he was going to break it into 4 parts for us - diagnosis, extent, prognosis, and treatment.
I've broken down his explanation below according to all the notes I took. You will see that the prognosis is more than grim. But know that Mom left that office with not even a single tear, even able to laugh and joke with the nurses. Mom is special, beautiful, strong ... even if it is just Melissa and myself who can see that so clearly. She is.
Happy Mother's Day to Carolyn Lorraine Broughton Neal! We love you!
Diagnosis: Cholangio Carcinoma - he said that there is never certainty around any cancer diagnosis but that he and other doctors he has discussed her results with are 95% sure that the originating source of cancer is in the liver bile duct ... think of them as the drainage pipes of her liver. He said that in any case of certainty around source of cancer they take into consideration any alternative sources that might have a better outcome of survival. He said that in Mom's case there are no other options it could be that could provide a better prognosis. Cholangio Carcinoma is a very rare form of cancer affecting only 5,000 a year. It's usually found in women in their 50's and there are no known answers regarding the reasons for this cancer. This form of cancer can reside in a person's body for 3-10 years before you even begin to have symptoms that would alert you that something might be wrong.
Extent of Cancer - This cancer starts on the right side of the liver, finds its way into the blood stream, and then begins to spread to other parts of the liver ... this is the source (the bile ducts) metastasizing to the liver (stage 4). If Cholangio Carcinoma is found early (which hardly ever happens) then there is a chance they can remove that part of the liver from the body and there is a slight chance that you will survive it. However, this cancer is usually discovered in its late stages as in Mom's case and as such ... does not have even the slightest chance to be cured.
Prognosis - There are no guarantees as to how long Mom has to live. The 5 year survival rate is 0% for inoperable cases. He said that at Mom's stage and condition others have had an on average survival duration of 11-12 months with treatment. Without treatment, the average survival duration is 3-6 months. But ... some have also lived up to 2 years - so you just can't predict the outcome. He did say there is a good chance that Mom won't experience a lot of pain or greatly worsened condition as the cancer progresses ... which is good to hear.
Treatment - Treatment of this cancer helps slow down the process only. It will not cure it. Clinical trials are not a treatment option given the rarity of this cancer, it is not a focus for research. Instead, the standard procedure is IV chemo given once a week (4-5 hours) for two weeks and then a week off. After the week off (so after 3 weeks) they will perform tests to to see if the cancer cells are shrinking. If so, then they continue the same rounds of chemo via IV to help extend her life. Mom will lose very little of her hair with this treatment. She has decided to go forward with chemo treatments as he said there is a chance that it will make the cancer cells shrink and therefore relieving her of the discomfort and pain she feels in her side.
The types of chemo she will be given is:
- Cisplatin with side affects of nausea, low blood count, and tiredness.
- Gemcitabine with side affects of tiredeness, hair thinning, and low blood count
A note from Carolyn ---------------------------------------------------------------------------------------------------------------------------------------------
My two daughters and I went to my first oncologist visit yesterday. To sum up our visit, I have a very rare form of cancer that is incurable. I have approximately 8-12 months. I believe in miracles... But more than miracles, I believe in God. And with Him comes His Sovereignty! I TRUST Him completely with my life, my precious daughters and grandchildren. My VICTORY is in Him!!
"When we all get to heaven what a day of rejoicing that will be! When we all see Jesus, we will all sing and shout the VICTORY!!"
Thank you for your precious prayers!! Praying only for acceptance, peace, and comfort for my sweet girls!
My two daughters and I went to my first oncologist visit yesterday. To sum up our visit, I have a very rare form of cancer that is incurable. I have approximately 8-12 months. I believe in miracles... But more than miracles, I believe in God. And with Him comes His Sovereignty! I TRUST Him completely with my life, my precious daughters and grandchildren. My VICTORY is in Him!!
"When we all get to heaven what a day of rejoicing that will be! When we all see Jesus, we will all sing and shout the VICTORY!!"
Thank you for your precious prayers!! Praying only for acceptance, peace, and comfort for my sweet girls!
Friday, May 3, 2013
An Important Dr Appointment Coming Up!
A note from Kristen...
Mom had more tests done today to check additional organs and the initial results are appearing to also be cancer free. So the cancer's origin is still unknown. While this can be discouraging in one way because we just want to know already what we are dealing with here ... in another way it is so encouraging to know that Mom's cancer is not spreading in any rampant way ... except for all over her liver (booooo).
Major props to Aunt Jan who was a rockstar at setting up all of these appointments so quickly and helping us find the best doctors!
May 14th will be an important day. Mom has an appointment with a cancer specialist whose job is focused primarily on discovering the source of cancer for patients. We are eager to meet with him to hear his perspective on mom's diagnosis, hypothesis on the source, next steps in finding the source, and perhaps an idea of the prognosis for Mom's condition.
May 14th feels so far away and patience is not one of my virtues. It is proving hard for Mom as she is feeling like she is in such a limbo phase but is waiting quietly on the Lord. For now, we are a little baffled but relieved to know that the cancer has not spread throughout her body.
Here is a photo I've found on the good ole internet to give you an idea of what the CT scan looked like from the first appointment we had where they confirmed that it was most likely cancer. What you are looking at below is a CT scan of internal organs with most of the image consisting of the liver. The dark spots you see are cancer. The CT scan of Mom's liver is even more covered in dark spots but ... again ... no spots anywhere else in her body. Oh where oh where could the cancer origin be??
Please keep us and the rest of the family in your prayers ... that we may just focus and enjoy the present and that we may be patient during this time of waiting.
Mom had more tests done today to check additional organs and the initial results are appearing to also be cancer free. So the cancer's origin is still unknown. While this can be discouraging in one way because we just want to know already what we are dealing with here ... in another way it is so encouraging to know that Mom's cancer is not spreading in any rampant way ... except for all over her liver (booooo).
Major props to Aunt Jan who was a rockstar at setting up all of these appointments so quickly and helping us find the best doctors!
May 14th will be an important day. Mom has an appointment with a cancer specialist whose job is focused primarily on discovering the source of cancer for patients. We are eager to meet with him to hear his perspective on mom's diagnosis, hypothesis on the source, next steps in finding the source, and perhaps an idea of the prognosis for Mom's condition.
May 14th feels so far away and patience is not one of my virtues. It is proving hard for Mom as she is feeling like she is in such a limbo phase but is waiting quietly on the Lord. For now, we are a little baffled but relieved to know that the cancer has not spread throughout her body.
Here is a photo I've found on the good ole internet to give you an idea of what the CT scan looked like from the first appointment we had where they confirmed that it was most likely cancer. What you are looking at below is a CT scan of internal organs with most of the image consisting of the liver. The dark spots you see are cancer. The CT scan of Mom's liver is even more covered in dark spots but ... again ... no spots anywhere else in her body. Oh where oh where could the cancer origin be??
Please keep us and the rest of the family in your prayers ... that we may just focus and enjoy the present and that we may be patient during this time of waiting.
Monday, April 29, 2013
How it Started...
We've started this blog to keep family and friends updated on Carolyn's progress in her recent diagnosis of cancer. Below is an update to all of the news and information in which we have so far, but if you'd like to receive updates as they come, please subscribe to this blog via the sign up form on the side column of this page. Please feel free to share the link to this blog with whomever is willing to pray!
How it Started ...
6 months ago Carolyn started experiencing pain in her side and she thought she had pulled a muscle. After persistent pain for 2 weeks she made a visit to the doctor where they told her that there wasn't much they could do for pulled muscles but to just take it easy. 2 months ago my mom started to lose her appetite, felt nauseous, lost weight quickly, felt weak, and the pain in her side deepened.
She visited the doctor again a couple weeks ago and this time they ordered a CT scan and found significant lesions on her liver covering almost the entire organ. She was immediately set up with another doctor who confirmed that it was most likely cancer at stage 4 (for those that are not familiar with cancer that is the furthest and most advanced stage). Liver is usually not the primary source for cancer - so she does not have liver cancer but instead usually cancer originates from another organ and metastasizes (or spreads) to the liver. The weird thing is that no other spots showed up on the CT scan except for the liver so the doctor's theory was that she must have colon or stomach cancer that has metastasized to the liver.
After another appointment that showed the colon and GI tract as negative for cancer (which greatly surprised the doctor), he ordered a biopsy that will 1) confirm it is cancer and 2) reveal where the origin of cancer is. The biopsy came back today and 1) yes, it is cancer and 2) it oddly enough did not reveal the cancer origin. Because of this, Carolyn is being referred over to more doctors who are more specialized in cancer and could help find the origin. Until we find it, we dont know for sure what stage the cancer is in and how treatable it is or really the best course for treatment at all.
A Note from Kristen (her oldest daughter) ...
I ask that you please pray with us that the doctors will find the origin of cancer as quickly as possible and that God will keep my mom and our family strong throughout this process. Mom has a very strong Christian faith and sees whatever outcome as a win-win for her whether it be to stay longer with her family or to go home to Jesus. If you don't know my mom, I wish you could - she is seriously such a wonderful wonderful person and is one of my very very best friends. She has been my biggest fan throughout my life and I dont know where I would be without her today if it weren't for her unwavering support, Christian faith, and guidance. As such, I (and many others) selfishly want Mom to stay around as long as possible (please, Jesus, can we have her a little longer?) so we are doing whatever we can to find the best doctors and treatments to help cure her. Mom has 4 brothers and 1 sister that are rallying around her to make sure she is getting the best medical treatments which I couldn't be more thankful for.
I am going to go ahead and apologize if I might not be around much for the unforeseeable future as I will be going to as many dr visits and chemo appointments that I can. I couldn't be MORE grateful that I work at an organization that allows me to work flexibly whether it be at mom's bedside for her chemo recoveries or at the hospital in the waiting room. I have an incredible boss and team that has been supporting me the past couple weeks as I've been scatter brained and out of the office for random periods of time. Wes and I are setting up our Guest Bedroom for mom as an Oasis during her recovery times from chemo and any weekends that she just wants to get away and be waited on. The verse that I've been clinging to and have never fully grasped until just recently is Philippians 4:7 "And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus."
A Note from Melissa (her youngest daughter)
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