Stopping by the woods on a snowy evening… The post with the bad news

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This isn’t going to be a very cheery post.  In fact, it probably won’t be even inspiring or anything like that at all.  It seems we’ve gotten a lot of bad news lately.  Last Wednesday, Kevin and I flew up to D.C. for his follow-up appointment and scans to see if the TIL therapy had started working on his cancer cells.  He’d been feeling sicker by the day though, so we honestly would have been surprised if it had been good news.  Still, we weren’t expecting it to be as bad as it was.  Basically, the docs told us that his cancer had progressed and that tumors that they had been measuring had nearly doubled in size since the start of the treatment.  They also told us that they think the treatment didn’t work because they’d had to reverse it (you know, to save his life and all) through the steroids and plasma apharesis and cam-path.  Pretty much, they did such a good job of destroying all their hard work, that the TIL just weren’t able to get a stranglehold on his cancer cells.  And that pretty much meant we were done with the NIH.  It was the shortest visit we’d ever had.

We’d sort of been anticipating this news, so we’d met with our local Emory doc just a few days earlier and decided to have Kevin go back on vemurafenib immediately once he was officially off the TIL therapy trial.  Kevin literally took his first dose while we were still in the NIH doctors’ office.  We are hopeful that he’ll have the same fast response that he did last spring and that it will buy him some more time while we figure out the next steps.

But wait, there’s more!  Once we got to the airport and right as we were finding out that our flight was delayed by several hours because of weather and that we’d be probably trying to find a hotel for the night, I got a call from the NIH.  They politely asked to speak directly to Kevin, which never happens.  After I had our flight stuff figured out and Kevin got off the phone, he told me to sit down and dropped the bombshell.  He said that Dr. Ilyas had said that upon a standard second review of his scans, a tiny brain metastasis (tumor) was found.  It’s only 2mm in size, but still, a brain met changes everything.  Suddenly, there are all kinds of trials that he would no longer qualify for, and we’d also been told that once the melanoma reaches the brain, it is often very aggressive and grows very quickly and becomes EXTREMELY difficult to treat (as if the last two years had been cake!)

So with that lovely piece of news, we slowly made our way back out of the airport and to a hotel, still a long way from home.

As we were riding the hotel shuttle, I tried to pray.  But I was hurting so much, and frankly pretty stunned, and just also plain exhausted.  And Kevin, don’t even get me started on how he was doing!  That man had been pushing himself so hard and was about to pass out from sheer exhaustion.

A poem came to my mind, and I couldn’t quite remember how it started.  God bless those iPhones.  A quick google search later, I was reading the text of the Robert Frost poem, “Stopping By the Woods on a Snowy Evening.”  As soon as I started reading the first line, my memory took over and the verses started tumbling through my head.

Whose woods these are I think I know

His house is in the village though

He will not see me stopping here

To watch his woods fill up with snow.

 

My little horse must think it queer

To stop without a farmhouse near

Between the woods and frozen lake

The darkest evening of the year.

 

He gives his harness bells a shake

To ask if there is some mistake

The only other sound’s the sweep

Of easy wind and downy flake.

 

The woods are lovely, dark and deep

But I have promises to keep

And miles to go before I sleep

And miles to go before I sleep.

We don’t know what’s going to happen next.  Honestly, we never really have.  We have sort of a plan.  Next week Kevin will likely have a radiation treatment called radio-surgery to try to zap the tumor.  It’s a one-time, highly targeted, super intensive treatment.  Next Thursday (8/22), the whole family has one-way tickets to LA (I booked the flights on spirit airlines b/c they were cheap, not knowing what I was getting into… pray for us!).  We have an appointment on 8/23 with Dr. Ribas at UCLA to discuss a new trial.  The trial would require visits to UCLA every two weeks though, so we have no idea how that would work.  I will be planning some photo-shoot events while I’m in LA and we will spend some time visiting and connecting with family.

So yeah.  I think both Kevin and I would like to just hang out in the woods for a while, giving pause, hiding our heads, or just holding each other tight.

And for a moment, we can.

But this battle is far from over, and we have miles to go before we sleep.

23 thoughts on “Stopping by the woods on a snowy evening… The post with the bad news

  1. We pray for you two every single night. I hope that the GOOD Lord has and will continue to comfort you two. I really seem to not have words for the aching (and yet hope) that I have in my heart. You two are still very special to us, even though you seem to have run away from us (jk).

    What I am trying to say is that we all love and miss you two very much. And you will continue to be in our prayers forever.

  2. When I finished reading this entry, “Blessed Assurance” popped into my head. Don’t know why, but I’m sharing in case it helps anyhow. God gives us snippets of things for a reason.

    Blessed assurance, Jesus is mine!
    O what a foretaste of glory divine!
    Heir of salvation, purchase of God,
    Born of His Spirit, washed in His blood.

    This is my story, this is my song,
    Praising my Savior all the day long;
    This is my story, this is my song,
    Praising my Savior all the day long.

    Perfect submission, perfect delight,
    Visions of rapture now burst on my sight;
    Angels descending bring from above
    Echoes of mercy, whispers of love.

    This is my story, this is my song,
    Praising my Savior all the day long;
    This is my story, this is my song,
    Praising my Savior all the day long.

    Perfect submission, all is at rest;
    I in my Savior am happy and blest,
    Watching and waiting, looking above,
    Filled with His goodness, lost in His love…

  3. I have dealt with cancer myself and there really are no words. Just wanted you to know that we would be lifting you up and prayer. Since my words would not be sufficient, I hope these Words from the Father God will be.

    “Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you;
    and when you pass through the river, they will not sweep over you.
    When you walk through the fire, you will not be burned; the flames will not set you ablaze.
    For I am the Lord, your God, the Holy ONe of Israel, your Savior; ………
    Do not be afraid, for I am with you.

  4. One of my favorite poems. Hold on tight and enjoy the sound of easy wind and the quiet moments of one another. Then come out of those woods swinging… this cancer has met its match! Fight on! XO

  5. Kevin and Rachel,

    I met you only this past Sunday but I have been following your story for a few weeks. Your family has been in my prayers daily and many friends are praying for you as well.

    I’m glad you’re dealing with your feelings honestly. At times like this, I think of Psalm 88. So much of the time Christians want to be all “happy talk” and often the motivation is to be encouraging. And encouragement is very important. But Psalm 88 gives voice to the fear and discouragement where we sometimes live. It’s important to be able to give voice to this; often in doing so, we can release the negative feelings and make room for light to come back to our consciousness.

    May God have mercy on all of you as you walk through this trial.

  6. I am so so sorry to hear this news! I’m hoping to provide a glimmer of hope in telling you that one of my good college friends (who is battling stage IV melanoma) just received a clear MRI today after receiving whole brain radiation! Her spots on the meninges were about the same size as Kevin’s. It’s a difficult and a scary road, but don’t give up hope!!! Many many prayers for your family!!!

  7. I don;t know you, but I know your savior.

    Psalm 94: 18 When I said, “My foot is slipping,”
    your unfailing love, Lord, supported me.
    19 When anxiety was great within me,
    your consolation brought me joy.

    This song is like God putting His arms around you.

    http://www.youtube.com/watch?v=FKWGSzxtcZA

    “Be Still and Know” from Scripture Lullabies

    Prayed that God would increase your faith and strengthen you.

    Tami

  8. Thank for this post. I had no idea Kevin was going through all this. He was a good friend to me in our Village Christian days. I will be keeping him in my prayers, and believing for the very best! Please let him know I read this and I will be wanting updates. Many blessings, and prayers to you both.

  9. You guys are on Erins and my minds every day. We can not relate to this kind of struggle, And I would feel silly to say that we have ever struggled compared to this. We are praying that Gods will will be done, and that His power and love will be shown through this. Remember our God loves to come through as the hero. He loves clutch endings. WHen all the chips are stacked and it seems impossible, he loves to show that he can and will come through. The love for the “come from behind win” is written on our hearts. And He wrote it there.

  10. Rachel and Kevin – We continue to pray for you guys daily. I pray for Kevin’s healing and for both of you guys to face each day with renewed strength and faith.

  11. Ps 46:10 Be Still, and know that I am God. May God’s arms surround you both in His love, grace and mercy. Continually praying for you.

  12. Prayers are ascending.
    Just as others are being reminded of hymns, poems, and Bible verses that give assurance and rekindle determination, a favorite hymn comes to my mind. I pray you find peace in it.

    Be Still, My Soul

    Be still, my soul: the Lord is on thy side;
    Bear patiently the cross of grief or pain;
    Leave to thy God to order and provide;
    In every change He faithful will remain.
    Be still, my soul: thy best, thy heavenly friend
    Through thorny ways leads to a joyful end.

    Be still, my soul: thy God doth undertake
    To guide the future as He has the past.
    Thy hope, thy confidence let nothing shake;
    All now mysterious shall be bright at last.
    Be still, my soul: the waves and winds still know
    His voice who ruled them while He dwelt below.

    Be still, my soul: the hour is hastening on
    When we shall be forever with the Lord,
    When disappointment, grief, and fear are gone,
    Sorrow forgot, love’s purest joys restored.
    Be still, my soul: when change and tears are past,
    All safe and blessed we shall meet at last.

    Psalm 46:10 and I Thessalonians 4:13-18

    Poetry by Katharina von Schlegel – 1752
    Translation by Jane Borthwick – 1855

  13. Hi Rachel,

    Kevin, you, and the children are always in our prayers. We are standing with you! If you are still going to plan some shoots, we would love to participate and see you!

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