Update

Hospice

The oncology docs here at MVH told us that her liver will not get better.  It is not functioning well, and each day the liver/blood numbers are getting worse.  They also don’t have any further lines of treatment to recommend for her cancer.  I checked with Dr. S, and he concurs that there are no more traditional chemo or FDA approved drugs for her.  However, Dr S would be willing to prescribe an immunotherapy drug, but he wants her organs to be functioning well before he gives it to her.  The immunotherapies are known to wreak havoc on the body so I agree it would be rough to try that at this time.  Also, he needs to see Lori in person to do an analysis so he can feel right about a prescription.  We are definitely in no shape to travel to Indy, and he already said she’s in no condition to get the immunotherapy now anyhow.

He and Dr Marinella agree that it would be ok to continue with the Xeloda in hopes that it will take hold and start to fight back the advance of the cancer cells.  But there’s not much hope there medically.  If that chemo was going to work, it would have done so in her first cycle.  I did see some signs that it might have worked, so I won’t give up on it yet.

She is in pretty bad shape overall.  The signs of liver trouble are ever-increasing.  Her shoulders are bony and her face/skull is becoming sunken with a sickly sort of appearance.  Her eyes are yellow with jaundice.  She’s barely able to communicate, and half of the time it’s just mumbling about something incoherent.  It’s amazing though, because she can still pray and hear prayer so well.  Although her liver is failing fast, the rest of her body is strong.  Her kidneys, heart, lungs, etc are all fine so I think it’s unlikely that death is imminent.  It’s hard to put a number against that but the predictions range from days to weeks if she continues to digress.

OK so every doctor who meets with us throughout the day has encouraged us to talk to hospice and to consider a transfer.  Here’s my philosophy (and Lori’s too) on how we approach that kind of decision (remember we’ve been here and done this before!) :

First of all, if we’re going down, we’re going down fighting.  That means that if there’s a treatment available, we’ll try it until the end or until it’s doing more harm than there is potential for good.  So for chemo, we’ll continue on Xeloda likely until the end.  If the side effects are too much to bare, then we’ll stop.  Pretty simple.  It’s our only medical hope of treating the cause of the liver failure (cancer).  We’ll also always pray and believe that God can heal Lori until the last breath.  Just days following her diagnosis, she told me that she believes God can heal her and that she won’t stop believing all the way until the end.

Secondly, I’m only going to transition to hospice if the advantages of hospice outweigh the disadvantages of leaving the hospital’s full-time care.  The main things I was concerned with were the loss of daily blood work/analysis and whether or not we could continue the Xeloda.  I had a long meeting with a hospice rep today, and I’m satisfied that they can meet/exceed everything we’re receiving in the hospital, but I had lingering concerns about the bloodwork and Xeloda questions.  The rep had to go back and research, and she returned a couple hours later with news that they would make an exception for Lori and run regular bookwork analysis (they usually don’t do that more than once per week if at all).  Also, Xeloda is on the list of approved chemotherapy so there’s a winner.

The advantages to transitioning to hospice are that the docs there are said to be the best at pain control.  I heard about many of their techniques, and they told me about one in particular that sounds good.  They use a drug that controls the pain well but doesn’t cause much drowsiness.  The trade-off is that it’s hard on the respiratory system so hospitals and doctors don’t typically use it.  Hospice nurses are specially trained to administer the drug while monitoring the symptoms of the side effects.  They tweak the dosage until they find the right balance.  Also, Hospice of Dayton is a huge operation.   They have a large inpatient facility that they say is extremely nice and designed around comfort for the patient and the family.

It’s sad to be making this transition, but there are more pros than cons.  So, we’ll stay in this hospital one more night, and unless I change my mind before tomorrow morning, we’ll sign on with Hospice around 9am. That should set us up for transport to the inpatient facility on Wilmington Pike by noon or so.

34 Comments

  1. We continue our prayers for the entire family and if anyone in the whole wide world can bounce back – yet again – it’s our Lori! Mark you have been so wonderful to keep us all informed. May God be with you and shine down upon you with his grace and power. Much love to you all! Aunt Jeanie (give Lori my love)

  2. Jaimie christian

    February 4, 2016 at 10:36 PM

    I continue to pray daily for Lori, you, your children and all of your close family and friends. I so wish I could come visit again but I am sick with step and a sinus infection and we know I don’t need to be anywhere her or you. I also love that the last time I saw you both she looked well, was smiling, and despite all she was going through was asking about KWF and was going to pray for my mom…which we got good news by the way! She is selfless and I admire her and her strength and faith in God so very much!
    Hugs and Prayers
    Jaimie

  3. We love you guys and are continuing to pray for God to heal her.

  4. Praying for you all. Thanks for including all of us throughout this whole process.

  5. Praying ❤️

  6. Praying and praying. I’m also believing that He can still heal her. Peace, strength and courage to you all.
    Jenny and Stevie

  7. I praise and worship our Jesus Christ in this midst of darkness like never before. Paul and Silas prayed and sang to Jesus and received miracle. I want that miracle to happen to dear Lori. (Acts 16:25-34)
    Praying right now for you too, Mark.

  8. I don’t know you all personally, and my heart breaks when reading your story. I do know from personal experience with Hospice that it is a beautiful, wonderful, caring place. They give each patience dignity and superb care. We will be praying for your family.

  9. We love you all and continue to pray look crazy for all of you. Believing God can heal and that He will continue to grant you all wisdom and peace

  10. Stephanie Dunham

    February 4, 2016 at 11:07 PM

    Sir,
    I pray for Lori , you and your family. Your love for each other and strength is a light to be followed.

  11. Praying for sweet Lori, your family and all those entrusted to providing the best possible care for her. Keep fighting!

  12. Mark, I’m crying for you as I write.
    Cancer sucks. The devil sucks more.
    This isn’t His design.
    I’m so proud of how you guys are drawing closer to God through this.
    You are displaying Jesus for us.
    We are praying. All of us are praying.
    Come Lord Jesus.

  13. Praying, and much love to you.

  14. You guys are in my thoughts and prayers !!!!

  15. Katy Robertson (Wegenhoft)

    February 5, 2016 at 3:07 AM

    We won’t stop praying.

  16. You all are in our prayers. Hospice of Dayton is pretty fantastic. They took care of my grandfather last year. The staff at the inpatient facility is outstanding. It is a very hard choice but you all will be in good hands there.

  17. Prayers for all of you and Lord bring peace during this transition to hospice. Please let us know if you are allowing visitors at hospice of Dayton. Thank you for her loving Lori so well, what a beautiful couple!

  18. We are praying for your family and appreciate you taking the time and effort to continue updates.

  19. Mark,
    Christy has been keeping us informed of Lori’s battle. I’m so so sorry and I hate that this is happening. I can’t say that I understand this but I do know God cares. Love to you all. Our home and refrigerator is always open to you! ? Please let me know how we can help you.

  20. I don’t know your family, I am friends of friends of friends, but I am and will continue to pray for you, Lori and your family. Her faith is anazing and I pray God keeps you all close and provides amazing doctors and results.

  21. Praying Mark. Hospice nurses are the best at what they do. I started my nursing career in the oncology unit, and to this day I donate to the Hospice Foundation of America for the work that they did for my patient and still do today. Through it all, Aaron and I have had you in our prayers. Love you guys!

  22. Mark, we are continuing to pray for a miracle and for much peace and strength. You two are absolutely one of the most amazing couples I have ever come across. Your faith is something to be admired daily. Trusting in God for you!

  23. Matt & Alanna Finch

    February 5, 2016 at 10:20 AM

    Praying for your whole family. May the Lord continue to give Lori strength and comfort.

  24. I’m praying for Lori and family. It’s been a long time since I’ve seen you guys, I think I was a freshman in high school in training to be a counselor at JW. I’m terribly sorry to hear this news. God is good. I’m proud to call you guys a brother and sister in Christ; you are modeling faithfulness and trust in our King Jesus during the worst of circumstances. Praise God that he is good even during our hardest days in this life, and that he is still working in your lives and in the lives of those around you. He is good and worthy of our affection and adoration every day!

  25. Thank you for keeping us all updated so we know how to pray. Know you are all loved and prayers for healing continue. Peace Be With You and continue to fight the good fight

  26. Mark, my heart breaks to hear of Lori’s condition. We love both of you and your precious family. We will be in focused prayer for all of you. May the peace of God, which transcends comprehension, guard your hearts and minds in Christ Jesup as he leads you through this dark valley. — Jim and Marcie Hays

  27. You, Lori and the family are always on my mind and always in my heart.

  28. Mark,

    Phil and I are praying for Lori, you, and your precious children. Lori is also on my mom’s church prayer list, and I will contact them now with your update.

  29. Praying for miracles sweet lady. Hoping your liver shapes up and you may continue to fight whether it be through immunotherapy or Xeloda or the pure strength of prayer. Keep fighting you inspirational Mama! Love, Summer

  30. Ed and Sandra Bellows

    February 5, 2016 at 4:14 PM

    We are with you in continuing to pray for healing for Lori. Will not quit. Thanks for all your posts so we can pray specifically.
    Ed and Sandra Bellows.

  31. Don and I continue to hold you and Lori and your families in our prayers. It’s been quite a fight and you’ve been so courageous. I’m glad that she will be with Hospice now having been a Hospice nurse when we lived in Wilmore. They will help with everything! Whatever you need and give you so much support. Please know we are still hoping for a miracle… After all – He Is God!! Love, Diana and Don Corbit

  32. Mark, as I follow this battle from afar, I am amazed by Lori’s resilience. What a strong and wonderful woman! You have an amazing family and we are all keeping you close in our thoughts.

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