In Lieu of Flowers

Flowers can be sent to:
Brentwood Baptist Church
7777 Concord Rd
Brentwood, Tn 37027

In lieu of flowers, donations can be made to:

Hope House International - Right before her diagnosis, Mom learned about Hope House and was getting ready to start donating but never had the chance.

or

Alive Hospice - In her last few days at home, the kind nurses at Alive Hospice were a great help to all of us.

Mom's Arrangements

Saturday, May 16th

Visitation 9:30 AM - 11:15 AM
Service at 11:30 AM
in the Chapel at Brentwood Baptist Church
7777 Concord Road
Brentwood, TN 37027

Graveside Service at 1:30 PM
Lynnwood Cemetery
Lynnville, TN 38472

Directions to Lynnwood Cemetery:
Starting on I-65 South from Nashville
Take Exit 27 for TN Hwy 129 towards Lynnville/Cornersville, Turn Right
Continue for 7.8 miles, Lynnwood Cemetery is on the Right

At Peace

At about 6:40 this morning, a party started in Heaven. Our sweet mom left this Earth and her body is now whole again. We all headed for bed about 12:30 this morning, and my brothers slept in the family room with her again in hopes of giving our dad some rest. They shifted her at some point to make her more comfortable but said she continued to labor to breathe. While they were sleeping this morning, my dad walked in the room and sat beside her. She opened her eyes, looked at him, and her breathing pattern changed. One of my brothers woke me up and I ran down quickly with them beside her. At that point her breathing pattern changed again and a few moments later she made her grand entrance (and with mom we all know it was grand!) into Heaven undoubtedly running straight for her mom, who she greatly missed. We felt like she waited for the few hours while we were sleeping until she could look one more time at dad and have us all surrounding her. As soon as we have details, I will be sure to get those to everyone. For now we know the service will be held at Brentwood Baptist Church, where she was loved so well, and the graveside service will be in Lynnville where so many others of the Knox family are buried. Thanks to everyone for the love and prayers.

At Home

Yesterday was a full day of working hard to get mom home. Thankfully the doctors and nurses working with her were on top of things and tried to move the process along as quickly as possible. Once she was home in the afternoon, she had a number of people stop by to visit her (thanks to all of you!) to which she opened her eyes and smiled at each of them. Even though most were for only a quick "hello" because she was so tired, she enjoyed each moment with those she got to see. We are extremely grateful for all the sweet messages we have received for our beautiful mom, and although I haven't been able to get back to everyone to let you all know we've receive them, I've read almost all of them to her at this point. Each chance I get between her bouts of sleep, she lays with her eyes closed as I read and smiles at all the funny memories that are shared. We all know how much she loves to laugh! She's well aware of what is going on and seems to fall asleep more soundly when she hears our voices in the room. After reading a large number of messages to her this morning, I got the chance to talk to her and remind her again, as we keep doing, how much we love her, how we will miss her terribly, but that we will all be okay. Most importantly I keep reminding her that we will take great care of dad. My heart melted and at the same time soared with joy as she told me that she is at peace with all of it. We are all here with her, and my brothers and I will continue to spend the night here at the house. Sometimes I'm not sure what to think of life going on without my mom and me with all these boys but what a blessing they are! They are regularly lifting, shifting, and making her comfortable in the bed we have set up for her in the family room. She has yet to have any pain, and we pray it remains that way. With the help of hospice, we will be fully prepared to give her whatever she needs to keep her comfortable here at home until her last breath when she finally gets to go to her real home. None of us can imagine life without her, but we long for her to be where she is free, and as she would says in her silly, spunky voice, "get out of this bed!" I love her with all my heart but am thrilled for her to be where there is no more cancer and her body is healed and whole again. Feel free to continue sending messages and we will get those to her. I know the blog comments are not always working, but I'm checking email regularly and family and friends that do have our contact info have been and will continue forwarding them to me. Thanks so much for helping us surround her with love. She has loved us all so well.

Last Days

This is the blog post I never wanted to have to write and certainly we didn't imagine would come so soon. Prior to now, mom was reading the blog, so I wanted to be sensitive to that in what I said. At this point, however, she is in her last days here with us and has quickly become too weak to read. Her health has rapidly declined in the past week and in particular the past couple of days. She had hoped to be strong enough to get the PD-1 treatment today, but it was clear that her body is really struggling. Upon seeing her today, the doctor decided it was best to keep her at the hospital overnight tonight in order to give her fluids and do whatever necessary to keep her comfortable while hospice care was set up for tomorrow. We aren't sure exactly when she will be released (there was talk of afternoon), but we know her time left here is very short, probably a matter of a couple of days. We are so appreciative of the outpouring of love and know many would like to see her if possible. Feel free to contact any one of us that you have a number for or for those of you that are unable to come by, feel free to send a message by text or email, and we will gladly read it to her. A dear friend of mine sent one today, and she really enjoyed hearing it. Please don't hesitate. I know it's hard to know what to do at this time, and many people are concerned of being a bother. However, we all know how social mom is, and nothing would make her happier than to see or hear words read from the people who love her. She has touched so many lives and cared for so many in what seems now a short number of years here on Earth. Our desire is to surround her with love in the small amount of time she has left.

I need to be brief for many reason which can be explained at another time. Mom's legs improved greatly only to swell again as of yesterday morning. Things continue to be much of the same although she is trying very hard to eat a little during the day. Despite her weakness, she wants to try to get to Vandy Friday for the PD-1 (Keytruda) treatment. Please continue to pray for her.

Prayers

Please pray for mom. She has had a very difficult time since they gave her the sodium among other things at Vandy last Friday when she had to spend the night. She still has lymphedema in her right leg, which is preventing her from moving around much at all, and her left leg continues to swell when she tries to walk. Everything has impacted her voice so it's very hard for her to talk, and she is extremely fatigued and needs to eat but is getting sick to her stomach at times. Her wonderful massage therapist, Denise, kindly came to help her with her lymphedema this week, and there are plans to continue with things to try to help it. Please pray for her to overcome this and do so quickly. She said she wants to take this one thing at a time, so getting past the lymphedema will be the first step. It is critical for her to do so before moving on to the next step.

Quick Update

Mom will go Friday to talk to her oncologist about treatment options. It's been determined, I believe by the radiologist and Dr. Sato (in PA), that they don't want to risk doing any more chemoembolization treatments, and it seems they are looking at trying her on an immune therapy called Keytruda (or PD-1). Interestingly enough, this seems to be the latest thing people are trying and her oncologist happens to be leading the trials for this drug. They will know quickly, approximately within a month, how her body is responding to it. She will also go Monday to see Dr. Reisman again and discuss options there. As soon as her leg swelling goes away, she will be able to start her IV vitamin therapy again at his office, which she feels like was starting to help her gain energy and is eager to begin again. Please pray for her swelling, clarity on the direction she will take next, and her body to gain strength again quickly. Tomorrow is her massage, and I'm so excited for her! She is really looking forward to it! Again, our apologies to those who have tried to post comments. We can't figure out why most of them are not working, so if anyone has advice on how to fix the problem, please email any of us and let us know!

Still Waiting

Many have asked so I thought I'd post, although I wish I had some more updates to report. As of today, mom's legs are still very swollen from the sodium they gave her Friday night at the hospital. I hope it resolves before Wednesday, but regardless, we have a massage therapist coming to her house Wednesday at noon to do some lymphatic work on her. I'm so excited this worked out! I'm hoping this gets her lymph really moving again, so when the leg issue resolves she won't have swollen feet anymore either. She's is going to need regular work though, and hopefully will feel good enough to get out to her regular massage therapist soon. Her mouth continues to be very dry, which makes it so difficult for her to sleep, hoarse to talk, and impacts her appetite since it seems to change the taste of food. She's trying to find out what she can do to help this since it's likely a side effect of the chemoembolization. Right now we don't know when her next chemo treatment will be, but she and I both are hoping it doesn't conflict with her appointment with Dr. Reisman (with him, not for IV vitamin therapy) on Monday. Despite all that her body is going through, she continues to amaze me. As everyone knows, she is one incredibly tough woman. She's taking things a day at a time with no complaints, unless it's to crack a joke about her "elephant legs", her "Jesus juice" she puts on herself (frankincense oil), or any of the other hilarious things she comes up with. I'm so grateful for the strength she has taught and continues to teach me to have. I told her when all this started that all the strength my friends say I have is because she taught it to me. Of course I'm also so thankful, and I think I could speak for my brothers as well, that she has taught us all to have a great sense of humor! She is such an amazing lady, and I wish nothing more than to take away all she is having to deal with. Living in a broken world, where things such as this happen, can be beyond challenging. We continue to daily seek the peace and comfort God brings as he carries us, holds us, and reminds us we are loved.

Home

This morning mom was released from the hospital and is home now resting. While she was there, they gave her some sodium because hers continues to be low and might be the cause of her feet swelling when she gets up and walks around. Today, however, both of her legs were swollen completely. Due to her fatigue, she has not been able to get to her regular massage therapist, who says she is prone to lymphadema anyways and needs to stay on top of it, so I'm trying to find someone who can get to her house to work on her. We're still not sure when the chemoembolization procedure will happen, but they are thinking it will be at the first of the week. I'll post as soon as I know more. Thanks so much for everyone checking on her. We are grateful for all the thoughts and prayers!

Procedure Day

Mom went in for the procedure first thing this morning. She was all prepped and ready to go, and Dr. Brown was about to start when suddenly her blood pressure dropped and they had trouble finding a pulse. Needless to say, it scared the doctor and nurses half to death and that the nurse was shaking when she came out of the room. They immediately stopped the procedure and she came to quickly but was sent straight to the E.R. to be looked at by a cardiologist. All of her testing came back fine, including a CT that was done, and a series of labs have been done. At this point they said she fainted, but there is no definitive conclusion on why. Some things that have been mentioned are that she is already weak, hadn't eaten, was nervous, etc. Some time during all of this, the E.R. was about to send her home when Sheila realized there were a number of things they had not taken the time to check. Once that was brought up and dealt with, it was decided to keep her for the night to monitor her and send her home in the morning. We aren't certain what the next step will be at this point, although some things have been discussed. I'll be sure to post as soon as we know what the plan is now.

Preparing for Round 2

Apparently some of the thyroid and/or IV therapies mom has started are kicking in, because today was the first day she was able to bathe without being completely wiped out when she was done. Afterwards, I took her for third IV vitamin/amino acid therapy, so she did get tired by late afternoon, but all of this is a huge improvement for her! She was still having a lot of pain though in her liver area that was making her very uncomfortable. The doctor said they would try to give her something to help with that. As I mentioned in the previous post, she decided to go tomorrow morning for round two of chemoembolization at Vandy. She received multiple differing opinions from her various doctors, but ultimately the decision was up to her. It seems that we all-doctors, family, friends-have different opinions as to what we'd like to see her do, but, although we can all imagine what we think we would do, it's impossible for any of us to know what we'd do if we were walking in her shoes. As I keep telling her, it is her life, and her body, and therefore her decision. Our job is to present her with all possible options, let her choose what she feels best about, and then support her fully in that. Our apologies to those of you who have been trying to support her by posting a comment on the blog. Multiple people have had issues, and we've tried to change the settings to fix it but still aren't sure that it's totally fixed! If you are unable to comment, please feel free to text her. Due to her situation she hasn't been texting or emailing, but she does appreciate and cherish each uplifting message that is sent her way. Since our little social butterfly is now confined to home for the most part, it's a blessing for her to receive messages! Please pray for tomorrow's treatment, for her body's ability to handle it, and for her recovery to be smoother. We will post as soon as we have info on how she's doing.

Upcoming Dates

Mom had her second IV therapy treatment (this time they did an amino acid boost) yesterday and will get another on Thursday afternoon. As of today, she's gained a little weight back (YAY!) but continues to have low energy and strength as well as a flare up of some pain on her right side around the liver area. Prior to diagnosis, she had pain off and on, and this time it is hurting her quite a bit. After talking with Dr. Brown at Vandy through email today, she felt best about going ahead and doing the second round of chemoembolization on Friday, so that will take place at 8:00 in the morning. We'll try to update as soon as we know something after her procedure. Please pray for her body as she undergoes another round and for her physical and emotional strength through it all. We are hoping for a smoother recovery this time!

Hopes for Renewed Energy

While at Dr. Reisman's office last week, he wanted to do some labs to check for things mom's regular doctors have not checked that could be attributing to her low energy. He called her the day after her appointment and let her know that her thyroid levels were really high. This is an indication of hypothyroidism and explains a great deal about her fatigue. He has her on a natural thyroid medication, and Monday she will go again for a second IV vitamin therapy treatment. The time it takes for these things to kick in varies from person to person, but hopefully it will kick in soon for her! For quite some time, I've wondered about her getting tired after playing with the kids, getting sleepy whenever she sits down, etc. Knowing her thyroid was so off, and there is no telling how long it has been, makes sense of why. It can be easy for people to explain away their symptoms (in her case, thinking it was just "old age"), when our bodies are actually symptomatic because they are trying to tell us something! I'm so grateful to Dr. Reisman for digging to get to the root of the problem. There is much more to be searching for in terms of her regaining health, but just having some answers to her tremendous fatigue was a relief to her.

Scans and Vitamins

Whew!  After a day of appointments and a last minute decision for us all to go with BJ out of town for work overnight (what's life without spontaneity, right?), I'm finally here at the hotel with a chance to write an update.  My apologies to those who have texted that I haven't gotten back to yet, but I'm hoping this update will answer things.

Mom had a CT scan then we went straight to her appointment with Dr. Reisman, who is an M.D. that uses many non toxic cancer treatment therapies.  In this case he is complimenting the treatment she is having done at Vandy with Dr. Brown.  While at the appointment, I got a call from Dr. Brown's nurse saying the CT scan showed no new growth of the cancer beyond what was already there!  That is fantastic news, because anyone who knows this disease knows it can spread very rapidly, so stability is great news.  They would like to re-treat her again with the chemoembolization on the 24th at 8:00 a.m.  In the meantime, Dr. Reisman was able to give her a cocktail of vitamins through an injection, and he also did some additional labs for things that have not been looked at with her Vandy doctors.  She will go back to Dr. Reisman's office on Thursday to receive an IV drip with a greater number of vitamins than what she received today.  This is likely to become a very frequent thing for her, but Dr. Reisman wants to see how she does before determining the frequency.  It's possible that it could increase her energy levels in as quickly as 24 hours once she gets started on the IV therapy, so we are praying it gives her a quick boost!  He also gave her two additional supplements to help with energy alongside the slew of supplements her naturopath has her on.  If you ever drop by to visit, tell her you want to be there to watch her drink her "dirt" as she lovingly calls one of her supplements.  :)

I have much more on my heart and mind, but this icy cold a/c unit next to me has me shivering and eager to crawl in bed!  Thanks again for all of your prayers and for checking on all of us regularly.  For those who get concerned that it is a bother, I promise it NEVER is, and it means the world to us.  Your comments and encouragement keep us all going even if we don't get a chance to respond.  I'm hoping to have an update sharing that she is her typical bundle of energy again soon!

-Melissa

Appointment Update

Hi everyone- I just wanted to provide an update about mom's appointment at Vanderbilt yesterday with Dr. Brown since several have asked, and I haven't had much of a chance to get back to anyone yet.  Posting something publicly is a totally new thing for me (I don't even have a Facebook account), so bear with me as I attempt to share updates and thoughts as we walk through this new season of life.

Thankfully Sheila was able to go along with mom and dad to see Dr. Brown.  He felt like she needed to gain weight and strength before attempting another chemoembolization treatment, so the current plan is to do another CT scan of her liver on Monday to see if the first chemo treatment has had any positive results thus far, and then he will decide where to go from there.  If she shows improvement, the next round will be delayed by at least a week.  He has been and will continue to consult with Dr. Sato at Jefferson Hospital in Pennsylvania.  Following her CT scan, she will go over to her first appointment with Dr. Reisman in hopes of getting started on some things he offers that will help boost her strength and energy levels and support her body.

Today she seemed to perk up quite bit, be standing straighter, and, most importantly, be getting an increase in appetite!  Shortly after her usual breakfast smoothie that dad has mastered making at this point, she got hungry again and wanted some eggs.  The next thing I know, I'm getting a text from her saying, "Betty Crocker made me some eggs" with a fancy picture of a plate of eggs mixed with veggies and sprinkled with pepper that I thought she pulled offline somewhere to send me.  It took a minute for it to register that by "Betty Crocker" she meant dad!  Mom says she thinks he's just been hiding his ability to cook for nearly 40 years.  :)

As soon as we know more, we'll try to update and continue to do so as often as possible.  We are so grateful for all the prayers, help, and encouragement thus far.  Thanks to some wonderful friends,  she's had some fabulous meals to eat.  Right now her room is filled with cards, and she really enjoys them along with the texts, emails, and uplifting comments you are all providing.  We all know how social she is, and although she hasn't had it in her so far to do much in terms of responding, these words from everyone really lift her spirits, and we are extremely grateful.

-Melissa

Update

Thanks for supporting Carol on her health journey. She began chemoembolization treatment in March at Vanderbilt Medical Center in Nashville, TN for metastatic cancer to her liver. This treatment delivers chemotherapy drugs directly to her liver and attempts to isolate them there. Carol is also working with a team of other healthcare practitioners to provide nutritional and immune system support through diet, nutritional supplements, and an array of other therapeutic methods. Her first chemoembolization treatment at Vanderbilt has greatly affected her energy levels and her strength. We are hoping to surround her with as much support as possible from all directions including prayers, emotional strength, and meal support.

Carol will have a follow-up appointment at Vanderbilt on Thursday, April 9th to have blood labs analyzed. On Monday, April 13th, she will have her first appointment with Dr. Reisman at the MindBody Medical Center in Nashville, TN. This clinic offers some unique approaches to support her body through the chemotherapy process and beyond. Then on Wednesday, April 15th, Carol is scheduled for her second chemoembolization treatment at Vanderbilt.

Thank you for taking the time to check-in on Carol, and please LEAVE A COMMENT below to her and we will make sure she sees it!