2 of Clubs

Today was one of those surreal days that you’re not really sure happened. It was fuzzy around the edges with harsh hard moments and little soft ones thrown in.  But, today did happen. It happened, and we have to figure out how to move forward. Move forward with hope, because that is what we are promised.

This hope we have as an anchor of the soul, a hope both sure and steadfast” ~Hebrews 6:29

Find peace, because that is what was given to us.

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. ~ John 14:27

On Thursday morning the doctor used an ultrasound to identify and locate fluid that had accumulated around Kevin’s right lung, liver and spleen. They found a good bit around his lung, however when they moved to the abdomen, they found no fluid. Kevin’s distended belly is being caused by an enlarged liver and spleen, not an accumulation of fluids as we had thought.  They went ahead with the fluid removal around his lung and he was able to get a good bit of relief right away. His shortness of breath improved and he seemed to rest easier.  However, when we got the labs back that day, his bilirubin levels continued to rise.  Kevin’s cognitive abilities continued to be affected by the liver levels so the doctor ordered a drug that is designed to help the body rid itself of those toxins.  It’s hard to tell if it has worked.

Rachel went into research mode to see if there were any other options to help his liver improve, but after many phone calls, emails, a few consultations and a lot of conversations, none of those options make sense for Kevin.

That night one of Kevin’s closest friends, Ian, spent the night with him in the hospital.  My hope was that, given how much time Kevin had spent awake Thursday that he would sleep well that night. Unfortunately he did not.  Kevin experienced another night of discomfort, frustration and mild confusion – but at least he had his best buddy there to see him through.

I spent the evening at Kevin’s cousin Claudia’s house who lives close to the hospital. She kindly made me dinner and a poured me glass of wine. I helped her decorate her Christmas tree and she and I shared the evening with her dog Jack and sweet kitty, Bob. In the morning her kind husband, Larry, drove me back to the hospital at 6:00 am to relieve Ian so he could go to work.

I spent the morning with Kevin, asking the doctors about pain meds, ordering food and attempting to get him to eat, calling the care team to help him with tasks like turning in the bed, going to the restroom, etc.  I could tell he wasn’t feeling better. His pain level seemed to have increased and his awareness level decreased.  His shortness of breath had returned, as a result of his diaphragm being raised by his enlarged organs.  And he wanted out.  He asked the nurse and I several times when he would discharged. A physical therapist arrived and helped Kevin realize just how strong he really is – which honestly impressed us both. He has a strong body and a strong will.  (Told ya, that man is a BEAST!)

Rachel spent the morning meeting up with Kevin’s cousins who had come into town and then headed to the hospital as soon as they got off the plane.  She was making phone calls to doctors and continuing to gather as much data as possible to make the decisions regarding the next steps in Kevin’s care.

The decision she has come to, for now, barring new information tomorrow, is to bring Kevin home to their sweet little rental house with hospice coming in to help. He will continue his IV antibiotics as well as his current cancer drug debrafinib.  In addition they will add back the MEK inhibitor.  These are the only two drugs that Kevin’s liver can tolerate and therefore have a chance of reducing his tumors and possibly the burden on his liver. When Rachel described this to me she said, “I’d like to say that I have an ace left up my sleeve, but really it’s a two of clubs.  Not much, but hey, it’s a two of clubs.”

Now, at the end of the day, as Rachel arrived home and the cousins said good bye. She and I briefly processed what was happening.  She was so tired, she didn’t have the energy to talk, and she really didn’t want me to talk either. So we hugged and cried instead.  It is moments like these that this is all so hard to absorb let alone understand.

She cried, “Where is our miracle?! You know!  I mean, aren’t you thinking that?”  I replied “I’d kinda hoped I’d be it. That I’d come out here and you and I were convinced we could help him get better. I even said on Monday morning that I was really convinced he can DO this – he’s fine. But by Monday afternoon – he wasn’t.  I feel like somehow I failed you, or him.” She said, “Sarah, if you were in that conversation with the oncologist and I today, you wouldn’t feel that way. We did everything we could.”

And there it was.  A wife making some of the hardest decisions of her life, extending me grace.  On what might be one of her darkest evenings, when I selfishly poured out my feelings of guilt and whiny inadequacies to her, she simply gave me grace. I got her a glass of water and left her to sleep. She had done everything she could to pour out herself – mind, body and soul – for her love for years. She would continue to. And she was exhausted, but she gave me grace.

Tomorrow we will work out details and hopefully Kevin will come home. Tomorrow we will continue to wait. And hope.

But as for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me.

18 thoughts on “2 of Clubs

  1. Sarah, thank you sooo much for sharing your heart, breaking as it must be as is mine
    Won’t stop praying, hospice is wonderful, I have used them 4 times

  2. There are just no words.All we can do is pray,Trust and Believe He has this completely under His wing.I cry,my heart bleeds and I just keep asking Why?What are His plans for us. What have we learned….Love, Trust, Hope?I One thing I completely get is that You Both have the ROCK by your side.We can All learn from this and in time we will.We will get it..Always in His time not ours..My heart just truly goes out to you both. We love you and just keep doing what we do best..PRAY..He definitely listens this we for sure know..Just keep on keepin on !!!!!!

  3. My heart is so burdened for your family. Its on my mind 24/7. I will use that burden to pray incessantly for you all especially Kevin. He is so able to ease the pain and exhaustion and he will. May he fill your heart with his peace and comfort.

  4. It is so hard to understand God’s ways when we see the suffering of those we love, but we must cling to Him- as your family is doing, with faith & hope. Your testimony of this in the midst of such pain is a such a witness. I grieve at your pain and suffering and pray fervently for that miracle, for God’s intervention in Kevin’s suffering. Praying also that you all will be somehow comforted and know the deep abiding love of your Heavenly Father and His tender mercies no matter where this journey takes you.

  5. Praying for everyone Sarah! Praying for peace, for hope. You are such an incredible example of loving like Christ loved us. I know your presence there is making a world of difference for your sister and her family.

  6. You and your family have not left our thoughts and prayers. We will continue to pray for you all. I wish there was a miracle I could send you.

  7. Rachel and Sarah these are the most difficult decisions. I don’t know how these few words can help ease your grief. But you are loved by so many. Kevin and Evie and Jude are loved. May you have this Christmas together as a family, let it be peaceful and Kevin well enough to find joy this season with his beautiful children and amazing wife.

  8. I wish I had words to express my deep, deep sorrow. Instead I’m sitting here sobbing into my coffee wondering where is y’all’s miracle. You ladies are amazing. I am so very sorry. I will continue praying for a miracle and for god to hold y’all in his arms.

  9. I have followed Kevin and Rachael’s journey and prayed for Kevin’s recovery for over a year now. I have hoped for a miraculous recovery for them and I still pray to that end. Whatever the outcome, the witness of their faith and their love for God and each other has shone like a beacon to a dark world. May God’s grace continue to envelope, sustain, and carry them through each day.

  10. I am sorry the miracle hasn’t come yet. I will continue to pray without ceasing. Thank you for pouring out your heart and sharing. You are all so loved! Thank you Lord for new mercies every day.
    Love and hugs unending. xxx

  11. These posts so articulately share your journey, and I’m so sorry. I have no words to adequately express or encourage. Only the Word of God,
    1 Corinthians 13:13
    The Message (MSG)
    13 But for right now, until that completeness, we have three things to do to lead us toward that consummation: Trust steadily in God, hope unswervingly, love extravagantly.
    And the best of the three is love.

  12. Sarah, you have done so much good in service to your sister and Kevin. You wanted to be “the miracle” out of your love for them. But that’s not something we can will. You have done your best. And that is gold in God’s kingdom.
    My mom went through cancer of the liver at the end. I remember the distended abdomen, the loss of cognitive ability, the feeling of helplessness watching someone you love go through that. We cared for her at home at the end; I think it was the right decision. We hadn’t heard of hospice at that time; we just did the best we could.
    People have had miraculous recoveries even when it’s gotten to this point. That’s what we hope and pray for. But it’s good to be prepared if the Lord is bringing our brother Kevin home. We pray for mercy and grace for all of you. You are giving Rachel and Kevin the greatest gift you can give: you are loving them.

  13. We will not cease to pray for the miracle of God to fall on your beautiful family. Our hearts ache and are breaking for every one of you. We pray that you all feel His warm and loving arms around you.

    Only God knows why, but it has not stopped me/us from asking…Why?

    We love you all so much. Blessings and honor for your strong and courageous family.

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