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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