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/events/399671623480964/

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.

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!

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.

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". 

:)

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.

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!

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.