Link to January 2015 video:

Link to September 2016 video: https://vimeo.com/c3media/review/185699250/24bdbf13d2

https://u.pcloud.link/publink/show?code=XZnJA1kZXQV33e1M0NBbwzaz7Pp4pjuyh0hX

Sunday, September 28, 2014

Another little ER visit….

Just to keep things interesting, Sandy's body decided to have a fever this weekend, adding a rash to the mix earlier today. Her Wichita doctor - the one who has continued to be available to her via text, even on weekends, told her this evening to go to Wesley to check out the fever and rash issues. She was, of course, reluctant to go, but at the same time, glad to find out what was going on. It was a surprisingly short visit, as far as ER visits go; she was discharged around 9pm after some IV meds and a script for a new prescription. Her voice sounded strong tonight, and she was in pretty good spirits.

There are so many things to be thankful for, including that she lives in close proximity to the hospital!

Tomorrow, Sept 29, is National Coffee Day…I doubt Sandy realizes that, but if she did, she would be more than happy to celebrate all day long!  When you drink your coffee tomorrow, think of Sandy, pray for healing, and do something to bless someone around you - just as she does every day :)  It would be fun to collect stories, in the comments below, of things you did in her honor on National Coffee Day!

Peace Be Still

Sandy asked me to convey to all of you how grateful she is for all of the cards, calls, well-wishes, and prayers. Knowing that a vast army of people are standing with her brings immense comfort.

Her incision is rather impressive! And we can only see the stitches in the skin, not the many stitches through the layers underneath the skin. There is still a small area that is numb, and her system is not fully functioning as she'd like. Pain has been more of an issue today, though she has had moments of feeling pretty ok. Tonight she began to feel badly, in some ways similar to how she felt before the bout with sepsis - we were all watching her closely, and thankful to see that her temperature did not continue to rise. There is definitely a concern about the current stent becoming blocked and/or infected. 

Many of you have been waiting to call Sandy, as requested when this blog began. She said it is ok for people to call her, though when she is resting, or playing UNO with a grandkid, she won't answer.  While you may want to ask a million questions about how she is doing, it is also great to have one or two topics ready to talk about with her. She is the same Sandy she was before this journey began, though it is easy to begin to feel defined by a diagnosis. 

Please pray for a swift recovery from surgery, absence of infection, quality rest, and peace - especially when she begins to feel worse, worrying another trip to the ER will be required.

Our kids have listened to various scripture lullaby cds since they were born. Sometimes I think the songs are more for the adults than the kids! One song in particular feels like it gently washes peace over us every time it plays. It is called Peace Be Still, by Scripture Lullabies, Volume 3.  Below is a link to listen to part of the song, followed by the lyrics.

Jesus did not suggest that the winds and waves stop in Mark 4:39 - He commanded that they stop. In the same way, God does not merely suggest that we might want to consider being still (Psalm 46:10) - He commands us to be still! How in the world are we to be still with so much going on all around us? How can our hearts and emotions be characterized by still waters when everything around us is going crazy? Only one way - choose to focus on truth. The truth is that God operates outside of human time. While He certainly cares about each of us and our life circumstances, He also sees the bigger picture that we cannot see, at least not on this side of heaven. When God promises to work all things for our good, we assume that we will see and recognize the "good" during our lifetime, and that the "good" will align with our definitions of good. But God doesn't say that part. Do we trust Him and His love for us…regardless of what we can see with human eyes? Can we fix our eyes on Jesus at all times, including when all of life is going well and when it is all falling apart? We cannot control much of what comes our way, but we can choose where we will look.

Our prayer for YOU is that no matter what twists and turns are part of your life's journey, you will choose to look at Jesus, and quiet your hearts so you can hear Him gently reminding you of His love.  He alone knows the ending, and He assures us it is good.


Peace Be Still
http://www.scripture-lullabies.com/shop/home.php?cat=253

Waves are crashing all around
Thunder roars as rain pours down
I am so afraid

There's no shelter I can find
My heart pounds as waters rise
Hope is far away
Then I hear You say

Peace be still
Peace be still
There's no need to worry
Peace be still

Fear has taken hold again
I can feel it closing in
I know You're here

And even now I hear your voice
Through the storm and through the noise
All my fears fall away
When I hear You say

Peace be still
Peace be still
I will calm Your storm
Peace be still

Friday, September 26, 2014

Home again!

Sandy was dismissed yesterday evening and is now resting at home. Well, she's supposed to be resting! She is not to lift anything over 10 pounds for six weeks…that will take some major self-discipline for her! Just when we think we know what is going on and what is next, things change. Tests continue to be inconclusive. Below is an update from Rod:

"After some discussion between the surgical team and members of the Oncology Department, no consensus was reached as to the appropriate next step.  As a result, the case has been referred to the Tumor Review Committee which will meet on Tuesday to review the records and formulate a plan for the next phase of this journey.  The Committee is composed of experts in many fields:  surgery, oncology, pathology, radiology, anesthesia, etc.  While "hurrying up to wait" was not the desired result of this week's disappointments, we look forward to a defined path for further treatment."

We hope you have a great weekend!

Wednesday, September 24, 2014

It's Raining

Sandy's epidural was removed, her bowels are starting to work again, and her fever, while still there, is lower than yesterday. The surgeon came by today with some additional information. This type of cancer is referred to in Classes more than Stages. Hers is Class IV because of involving both the right and left sides.  People do not necessarily begin with Class I and move progressively up to Class IV. He didn't see a reason to go outside of Wichita for oncologist appointments or treatment, if any are deemed beneficial. Looking back, he said that had we done surgery six weeks ago, there would likely not have been a different outcome. Perhaps there would be a different outcome had surgery been done six months ago, though Sandy didn't have symptoms six months ago, so there was no way to have known.

Because the tumors cannot be removed, and chemo/radiation are unlikely to benefit, inserting the metal stent to hold the bile duct open is the only "solution." Further tests or scans might reveal if the tumors grow or spread, but because they did not show up on previous tests, we can still have an all-clear test despite the presence of cancer.

Sandy will not have any doctor mandated restrictions on her activity level - she can do whatever she feels able to do.

Specific prayer requests: continued healing from surgery, including eradication of infection; miraculous healing of the tumors, with zero additional growth or spread; stamina both physically and emotionally; wisdom for everyone involved as we proceed from here.

Release day could be tomorrow, though Friday is more probable. Once she is home, we will let you know what she is up for or if there are any additional ways to help.

Last night I suddenly remembered I had promised to make cookies for a friend who was coming to mow Sandy's yard - and I know this friend will not be happy to read that I still felt it was important to keep my promise, all things considered! However, since I was up with a fussy kiddo anyway, I decided to mix up the batter. Then it rained most of the night, fully saturating the ground, making it necessary to postpone mowing…and making it unnecessary to have fresh cookie dough in the refrigerator! While my first thought was rather grumbly, I quickly remembered that we had just been talking about the need for rain - and here it was! While the rain messed up one plan, it served a greater purpose.

I remember praying, as this ordeal began this summer, that no cancer would be found. And it wasn't, for the longest time. I prayed that she would not need this very invasive and complication-prone surgery. And as of Monday, she didn't. Yet looking back, in some ways it could have been better if cancer HAD been found earlier, or if the surgery WAS possible and needed. It seems like this diagnosis is in no way good. And yet, we don't know the whole story. We don't know what God is up to, though we do know it is for the good of those who love Him. We also cannot see all of the prayers, some of which have been prayed for years, that are being answered in and through these circumstances. Nor do we know how the future will reveal answers to today's prayers. All we know is that it is raining, and some of our best laid hopes and plans are seemingly messed up. I want to encourage you to remember that rain serves a purpose. Some of the most beautiful skies, some of the freshest air, some of the most peaceful moments and lovely blossoms come after a rain - because of a rain. Perhaps we can, collectively, lean into this rainy season, looking with expectation to the future, where God's love and blessings will continue to shine.

Tuesday, September 23, 2014

Hopefully minor setback

Sandy was again pleased as punch to receive coffee and clear liquids today! However, late this afternoon her temperature rose to 102. Some blood was taken and sent to culture; results ought to be back tomorrow. They started her on an antibiotic for now, until they learn which medicine will best fight whatever is going on. Because this occurred so soon after surgery, it is likely the infection was present before surgery, perhaps leftover from last week's bout with sepsis. Thankfully Sandy (and Rod, her #1 advocate) knows what to watch for this time around, so it did not get as bad as last week.

Coming home will be Thursday or later. Nothing further has been decided about how to proceed from here. Thanks for the continued support.

Monday, September 22, 2014

Surgery Update 9/22

After beginning the surgery, doctors were very surprised to find two areas of cancer. Multiple tests, biopsies, etc from the last few months all came back clear, making this an unexpected discovery. If cancer was present only in the left bile duct and left blood supply, or only in the right bile duct and right blood supply, doctors could have surgically removed the cancerous side. However, cancer was found in the left duct and the right blood supply.  This combination is inoperable.
 
You probably have two main questions - how is Sandy doing, physically, with healing from this operation? And what next?  Sandy is in recovery from surgery, which was much less intensive than originally planned. She is awake but still coming off the anesthesia. She may be released Wednesday or Thursday.
 
At this point there is a bit of a scramble going on as to what to do next. There is word of a clinical trial with a combo of radiation and chemo at Mayo. All of the doctors who have been involved in Sandy's care will discuss options and come up with a plan in the next several days. It sounds like there is an option to insert a metal stent that ought to last longer than the previous ones have lasted, though that has to be done endoscopically (as with all previous stent placements); it couldn't be done during today's operation. While it would be great to have a longer lasting stent, it does not take care of the cancer; it merely addresses a symptom of the cancer.  
 
This is definitely not what we had hoped for. However, a few things remain unchanged. God is big. God is good. God has a plan that is not thrown off course by today's development. The enemy comes to steal, kill, and destroy - not just in matters of life and death, sickness and health, but also in each moment. But He who is in us is stronger - so we do not have to succumb to fears or run-away worrisome thoughts. We can choose joy, choose to see blessings, choose to enjoy each of the easy-to-overlook blessings that constantly surround us.
 
Please keep praying for healing, wisdom, quick recovery, fresh perspective, and peace. Just as we did not anticipate this seemingly downward turn of events, neither can we know what direction things will go from here. God is still in the miracle business!

The Big Day

Today is Sandy's surgery. She checks in to the Kansas City hospital at 12:00. We don't anticipate having anything to report until late afternoon or early evening. The length of surgery depends on what they find when they get inside, as well as how complicated or easy everything turns out to be. We will update the blog as soon as possible once there is news to report.

Wednesday, September 17, 2014

Home!

Sandy was released from the hospital this evening. Never before have real clothes felt so good :)
Please continue to pray for the stent to remain unblocked, for the infection to completely go away, and for her to quickly and easily finish preparing to be somewhat out of commission for the next several weeks.

Out of MICU

Sandy was moved to a regular (non-ICU) room late Tuesday. She's ready to break out of there and go home! Perhaps after a few more hours of IV antibiotics they'll let her leave. This morning she was given clear liquids, for which she was extremely excited! The person delivering her "food" was surprised at her eagerness for "just" clear liquids. The fact that coffee counts as a clear liquid might explain part of her excitement…!  Later in the day she was able to eat other foods, and is off all food restrictions now. Surgery is set for Monday.

Monday, September 15, 2014

MICU at Wesley

We are thankful that Sandy is feeling better today - not great, but much better than last night. Her labs came back showing bacteria in the blood, and she had the symptoms of sepsis. It is a good thing she went to the hospital rather than waiting! Sandy's doctor completed the ERCP (http://www.nlm.nih.gov/medlineplus/ency/article/007479.htm) to replace the stent early this evening. When the "old" stent came out, it was apparent that the infection was from the area of the stent. She has an IV for fluids and another one for antibiotics. They took her back to the MICU at least until tomorrow. Tomorrow a decision ought to be made regarding a new surgery date. Please pray for the infection to go away, the stent to remain unblocked, surgery to happen soon, and for Sandy to find joy and strength in the midst of disappointing news.

Unexpected ER visit

Sandy spent the weekend doing normal activities - attending soccer games to watch grandkids, spending time with a friend, and hosting the monthly family lunch at her house today. She noticed some itching start last Friday, causing concern that perhaps the stent was becoming blocked. Tonight she suddenly began to feel awful. After a gentle reminder that the reason her doctor gave her his cell phone number was so she could contact him for things like this, she sent him a text. He replied that she could either go to Wesley tonight or go to his office in the morning. Thirty minutes later, continuing to feel worse, dad drove her to Wesley.

After an hour of multiple nurses struggling to find a vein for the IV, they decided to admit her for the night. Due to a rising fever, she will be in ICU for right now. Whether or not this affects surgery Thursday remains to be seen. Please pray for healing, comfort, encouragement, and peace. This is really wearing on Sandy. She's been working hard to prepare for her substitute, as well as figuring out all of the details that need handled in the upcoming weeks. God has a plan in this, it just feels overwhelming right now.

Thursday, September 11, 2014

Surgery scheduled

Sandy's appointment with the surgeon in Kansas City went well. She feels confident about his ability to perform the surgery, which has been scheduled for next Thursday afternoon (Sept 18). She will stay in the hospital for 4-7 days before returning home.

The surgeon does not think she has cancer. However, the solution for benign bile duct strictures is the same as the solution for bile duct cancer, so this surgery is needed regardless of the underlying issue. They won't know for sure if it's cancer or "just" a stricture until surgery is completed. During the surgery, once the stricture is located, they will determine how much, if any, of the liver needs to be removed.

Please continue praying for total healing, accuracy, precision, and wisdom for the surgical team as well as recovery nurses, and for a peace that passes all understanding. Sandy is waiting to find out how soon she can return to the classroom...so pray for her quick recovery and patience with her body!

At this time, there really aren't tangible needs to be met. Sandy is in good spirits and feels this is the best possible decision, all things considered. She is looking forward to teaching tomorrow, Monday, and Wednesday, before heading to KC on Thursday.

She has been overwhelmed (in a wonderful way!) by all of the cards she has received. Thank you for all of your support and friendship!

Friday, September 5, 2014

We have a plan…no we don't

Perhaps the most frustrating thing about this ordeal is that nobody knows for sure what is going on in Sandy's body, and therefore nobody can state with certainty the best path to take. Today's appt was rather uneventful in terms of new information, but ended up putting more options on the table once again - options that had been studied and set aside.  Sandy still has an appt next week Thursday in Kansas City with a doctor who has experience with this type of surgery. Early next week she will have an MRI. They are still looking for a tumor.  Of course we are still praying for healing! Please continue praying for wisdom and clear direction in the following areas:
1. What is the problem - cancer? Autoimmune pancreatitis? Something else?
2. It'd be great if everyone involved will come to an agreement on the best route to take.
3. No more missed work for Sandy until surgery, if that is coming up (many of her appointments have been scheduled during classes or meetings).
4. Deep peace, assurance of truth, endurance both physically and emotionally.

Sandy is extremely thankful for each of you. She is also grateful for the care she is receiving from her doctors and their nurses/PA/staff.  It is no surprise that she has found a place in each of their hearts - she is not just another patient to them.

Our Bible verse this week has been Philippians 4:13 "I can do all things through Christ who strengthens me." We have been filling in the blank as we strive to live out this verse:
I can ________________ through Christ who strengthens me.
I can choose thankfulness through Christ who strengthens me.
I can dwell on truth through Christ who strengthens me.
I can not fear the future through Christ who strengthens me.
I can be kind to my brother/sister even though he/she is really mean to me and deserves a consequence … through Christ who strengthens me.
(The last one may end up proving the immense strength of Christ…!)

We hope you have a great weekend!

Wednesday, September 3, 2014

Appointment scheduled

Sandy has an appointment with a surgeon in Kansas City next week. She anticipates they'll schedule surgery for the following week, but until she meets with the surgeon, nothing is definite. She will learn the results of the biopsy at her appointment on Friday with the doctor here in town. Thanks for the prayers!