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.

53 Comments

  1. Mark, your strength is from God alone and I have tears streaming down my face to read this…but I also have HOPE and faith that God can STILL do immeasurably MORE than we could ever ask or imagine. Dear JESUS hear our prayers. Mark,….I am lifting you up just as much as Lori. She has always told me how incredible you are FOR her and to her. I have no doubt that God is guiding you in all of these decisions. Please kiss her forehead for me.

  2. Allison Russell

    February 4, 2016 at 3:41 PM

    Wrapping you all in love and strength during this time. I’m so sorry. I know these are not easy decisions and I’m sending all the hugs, prayers, good vibes, juju, and love your way. Keep looking for those positives and know we’re all rooting for you both! xox

  3. I continue to pray for His peace that surpasses all understanding, His strength that is mighty, His love to fill you all richly and deeply, and for His incredible healing touch.

    Thank you for your willingness to share this journey with us.

    Joanna

  4. Mark and Lori you are both so strong. I wish I were there to hug Lori and tell her what an impact she has made on my life even though I’ve only had the pleasure of calling her my friend for a few years. What a woman! With each update I am amazed at the strength and faith you both have. Please give her a kiss for me and shower the kids with hugs. Praying for you both!

  5. A praying friend

    February 4, 2016 at 3:54 PM

    ‘“The Lord bless you
    and keep you;
    the Lord make His face shine on you
    and be gracious to you;
    the Lord turn His face toward you
    and give you peace.”

  6. Dear Mark,
    It’s hard to know what to say. We all knew this was a possibility but it still comes as a shock for me. I feel sad, shocked and heartbroken for you and your little ones. I feel thankful she has had you at her side, that we had one more year, that Ashley and Tim got to see you recently. You have both been so brave. Thank you for selflessly including us in this journey. I’m sad. Really sad. There feels to be more of a finality in this letter. Forgive me, so hard to know what to say. I want to say or do something to fix it all. We all know that we are helpless but will pray that you have peace, comfort, strength and leave it in God’s hands. Make sure you get some salmon tonight.

  7. I too have tears for you both. Your faith and hope is so encouraging. Romans8:38-39. I will continue to ask God for a miracle. We praise you Lord for Lori and Mark. Please hear our prayers.

  8. In tears.
    On my knees.
    Always filled with hope.

  9. My mom told me when she was little, if there was someone she worried about, she would envision an angel wrapping a golden light around them. So right now, I’m imagining that angel there for you and Lori. Praying for that angel to circle around you and wrap you both in warmth, peace and light. I hope you feel it!

    Your faith humbles and inspires me every day.

  10. Mark, I feel a real shock reading this and I’m just plain sad. You have an incredible strength from the Lord in bearing though this and taking such amazing, protective, and tender care of your precious wife, and making all these hard decisions. Praying for healing always and a strong fight, and that Jesus would sustain and give a peace that surpasses all understanding. Sending all my love to sweet Lori, you, and the kids. You don’t hesitate to let me know if you need any help.

  11. Praying for you both…

    tears.

  12. Prayers continuing for the whole family.

  13. Continuing to pray for complete healing, and for strength as you boldly move forward.

  14. Prayers for your family!!!

  15. Sending constant prayers to you all! Thank you for your honesty, your faith, and your determination. Oh, how I continue to pray for a miracle. Cancer is the worst and my heart breaks reading how things are going for you. Love and hugs to you!

  16. The multi-faceted grace of our Lord abound to all of you. Prayers continue. Our love, Billy and Ruth

  17. Our heartfelt prayers and love are going out to you and your family, especially in this time of difficult decisions. Lori is definitely a fighter! The Dayton hospice is a really nice facility. My uncle was there last year and my cousin was impressed with their care. Lots of prayers coming from Auburn.

  18. Praying for you and Lori and your precious children. Praying for peace, strength and comfort. We met a few times in Lacey/DuPont in 2009…before kids. It pains me to know how deep and difficult this trial is and that Lori is suffering so. We ache for you all! (I know your story now because of your dear friends Sara Field and McLain.) May Jesus hold you through this and we are also praying for healing!

  19. God’s Will be done in His perfect timing. How little we understand of the big picture and God’s plan as mere human beings . May God bless you and Lori, Mark, as well as your families with His indescribable peace and comfort. “And now these three remain: faith, hope and love. But the greatest of these is love.” 1 Corinthians 13:13.

  20. I won’t stop praying for healing! God is so good! Be strong, Mark! So much love to you both.

  21. Should you make the transition to hospice in the morning, know that you will receive exceptional care. They are wonderful!! May God’s love and peace continue to surround you all as you navigate the next leg of this journey and make decisions, filled with hope…always hope, to comfort Lori and give her the best care humanly possible. You are all covered by so much love and innumerable prayers. We hope you can feel that blessing and wish we could do more as you have blessed all of us so much. Love and hugs!!

  22. Deborah Trautmann

    February 4, 2016 at 5:21 PM

    God is our comforter deliver our strength everything we are comes from him. Please give Lori strength comfort and healing if it be your will Lord. She is an amazing child of God Sharing his love and his grace with everyone. I pray that she is healed to share your love with everyone to tell of your ultimate love for us. In his name for his glory

  23. Praying for all of you. For peace, comfort, pain free days, and above all, healing. May God wrap you all in His loving arms.

  24. So sorry to hear this but we will be praying extra hard for healing and strength. Your whole family is in our thoughts every day.

  25. Mark and Lori, I’ve not commented much throughout this journey but I’ve never stopped praying. I will continue to pray for peace, strength, and supernatural healing. Lori, I’m sending you a virtual hug and blessing you for your amazing testimony of faith.

  26. Lord, in your mercy, hear our prayers.

  27. Lori (Henson) Colon

    February 4, 2016 at 6:24 PM

    “Bless the Lord all my soul, and all that is within me, Bless His Holy name”
    As I continue to read your blog, cover you all in prayers….this song comes to mind. Lori- you have done so well, as a good and faithful servant. You have blessed his heart, you have stood as a soldier, you are a faithfull daughter of the King. Your words bear witness to your faithfulness and will touch generations to come. May God’s comfort and healing balm touch your pain, give peace and rest to your body and his joy fill you.

  28. Sending love and support from North Carolina.

  29. God is so Good!!!….and Lori is so Good!!!…My heart and prayers are with you Lori and the whole family. Ron

  30. Ken & Nancy Barry

    February 4, 2016 at 6:36 PM

    A prayer for you and Lori, from friends & neighbors of Doug & Carol. My husband & I pray for pain control and strength for Lori. We are thankful that we were invited to spend this past Thanksgiving with the entire Baker family and your love for one another.

  31. Always praying for your family.

  32. Your family’s story has touched me so much. I have been praying for all of you and I agree with Lori. God heals. I live right down the street from Hospice of Dayton. If there is anything you need please don’t hesitate to ask. We will continue to pray.

  33. You are in my prayers daily. May God continue to give you all strength, hope and peace.

  34. It is hard to know the right things to say as you all go through this difficult journey. From the very first time I met Lori, I knew she was so special. I continue to pray and hope that she heals. She had an amazing spirit and such a faith in the Lord. Love to you all!

  35. Praying for you all. “Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”
    ‭‭2 Corinthians‬ ‭12:8-10‬ ‭NIV‬‬
    Christ’s power shows brilliantly through both of you, Mark and Lori. Praying for peace and praying for healing.

  36. Rachelle and Jesse Olson

    February 4, 2016 at 7:14 PM

    We’re sending love and prayers your way. The strength and love you two have is exceptional!

  37. I’m Ariel’s cousin,Patti.
    It’s NOT “her” cancer.It is trespassing!!
    Also,I have learned that God’s clock only has ONE Hour…the Eleventh Hour.
    Abba,I pray for this family & your perfect will in their lives.Give them YOUR strength & healing power .Amein

  38. Hey brother, prayers continue as well as continued praise for the lives you all will/have touched through the powerful witness. Amidst the tears and pain my heart rejoices at how powerfully you and Lori submit to the Lord and allow God to continue to work through your lives. To Him be the Glory!!!

  39. Mark & Lori- praying and paying some more for all of you.

  40. Jim & Ling Highfill

    February 4, 2016 at 8:12 PM

    Mark:
    My wife, Ling, and I have shared in your unbelievable journey, through Doug and Carol, as we are blessed to be in the same weepy small group bible study. As I read Lori’s continuous trust in our Precious Lord, even in the face of unbelievable adversity, pain, and suffering, she is just an phenomenal example for what we all must aspire to be. That is, to always, always, offer it all up to our precious God, and keeping telling Him that we are honored to suffer this in his name, for what the precious Jesus did for us sinners. So easy for me to just say that, but it is so obvious that Lori lives and breathes this dedication to the Lord. Your whole family is on our prayers. You have no idea what an inspiration you are to all of us. God bless to your whole family.

  41. Praying for you guys! I know that God is in control and He has the power to heal or to bring Lori home. I can’t imagine how difficult this is for all of you. It was painful to read just trying to imagine, but your testimony is so strong and you both are encouraging all of us to lean on God harder and stronger.

  42. Praying. Always.

    • Dear Mark and Lori when you moved into our small neighbor I knew from the moment I met Lori how special she is. Her strength amazed me even then!! She was jogging behind a stroller and smiling!! I was so happy to meet her!! Little did I know how much she would come to mean to me. God sends special people to enrich your lives and you both have surely enriched mine. I am praying and hoping for a miracle. You both deserve one. God will take care of all of you and I know he will be merciful. You have such faith and have touched everyone with your story. God bless you all!!

  43. Your family has been added to the prayer chain at Cornerstone Christian Church – Shiloh, IL. We’re joining with so many others in asking our Almighty God to bring healing to Lori’s body.

  44. Keith and Ashley Crew

    February 4, 2016 at 9:10 PM

    You are in our thoughts and prayers.

  45. Mark and Lori,
    Thank you so much for sharing your journey with all of us and allowing us to support and pray for all of you. You have touched so many lives. I was down the street, so I stopped by your street to stop and pray for you tonight. Our God is Mighty. If I can help you in any way, please call.

  46. Carolyn Johnson

    February 4, 2016 at 9:33 PM

    I know this has been a hard journey for you and your family. I pray that the Lord is merciful to Lori and to you and the family. I have only got to meet and talk with Lori a few times, but I feel so blessed to have known her. God bless you all.

  47. Ruthann Richardson

    February 4, 2016 at 9:47 PM

    Don and I have you and your family in our thoughts and prayers. Our God hears every word we lift to him and sees every tear we cry… I am reminded of Psalm 56:8 “You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.”

  48. Love love love for you both. I pray for Lori and for your sweet family. She deserves the moon and the stars and everything that God can continue to bless her with. ❤️. Mark, The Lord gave you both such an amazing gift when he crossed your two paths. I feel like from the bottom of my heart you complete each other. I pray for your continued strength for Lori to lean on. God bless you both xo

  49. I have been and will continue to pray for you, Lori, and your family. May God’s spirit wrap you in His love right now.

  50. John and Paulette Colson

    February 4, 2016 at 10:17 PM

    We so love you all. Uncle John was telling me of your joyful soul even as a little girl and all that have known you know of your specialness !!!! God we plead for favor and blessing on our family and spare calling Lori home. We need her and praise you for our answer. Uncle John and Aunt Paulette

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