A remedy for bad news

“I have heard thy prayer, I have seen thy tears: behold, I will heal thee…”
2 Kings 20:5

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Ever hear the opening notes of a song and get goosebumps? Before the words even come, you’re crying. Happens to me. Happens to my twin. And I think God totally gets it. 

My sister was diagnosed with MS just a couple months before Rhema was diagnosed with autism several years ago. We’ve often noticed how the two of them seem to be on similar journeys. Once Rhema was in the hospital for long-term EEG monitoring, and my twin was in a neighboring hospital being treated for an MS exacerbation. I remember numbly walking a long corridor that connects Children’s Hospital to Brigham and Women’s, and wondering where the carefree days of life had gone. My daughter’s place or my sister’s place, I wished I could take either one.

My twin has been undergoing painful monthly infusions of a drug called Tysabri for the past 2.5 years. It’s an experimental drug with some unpleasant side effects – mouth sores, nausea, headaches, itching, etc – but it’s been the only thing to help her in terms of “disease activity.” 

All along, we’ve known the biggest risk of the medication is a fatal brain infection called PML.

Last week she tested extremely positive for the virus that causes PML. 

Her drug therapy for MS was immediately halted, and she will never take the drug again – it’s simply too dangerous.  

Upon hearing the news, I bawled at work. Words can’t describe how relieved I was to know that they’d caught the virus in time. But I was also so afraid. I know about every MS drug on the market, and my sis, she’s just about tried them all. Because of the risks associated with Tysabri, it’s generally only recommended when most other options have been exhausted (as is the case for my twin). And now Tysabri is no longer an option.

The scenario is a sadly familiar one. Rhema’s done time on a slew of anti-epileptic meds. The only one that worked no longer does, and we still don’t know what’s next.  

“What are we going to do, J?” I whispered.

These past several years have been marked with so much heartache, and crisis and disappointment one after another. At that moment, I was ready and willing to sink to the bottom of the sea of despair. I wanted to scream it’s not fair and ask God if the pain will ever end.

She was quiet for a minute.

“I know that God has saved my life,” she said calmly. “We’re going to celebrate.”

And so we did.


(Look, Cha. Cupcakes! Gone in seconds.)

Collasped veins, brusies on arms, mouth sores, the emotional stress of infusions month after month, year after year… we celebrated the end of it!

We celebrated that in spite of medical reports, she is well.

We celebrated her husband and daughter for their strength of love.

We celebrated the fact that even though we don’t know what tomorrow holds – we know the end of the story.

But I hold on to this hope and the promise that He brings
That there will be a place with no more suffering

There will be a day with no more tears

No more pain, and no more fears
There will be a day when the burdens of this place
Will be no more, we’ll see Jesus face to face

(~Jeremy Camp’s There Will Be A Day based on Rev. 21:4)

We celebrated the Good News (“And this is the testimony: God has given us eternal life, and this life is in his Son. 1 John 5:11) that always trumps the bad news.

The burdens lifted and we laughed and she made up a silly song and we licked frosting off of cupckake liners.

Felt so good.

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“(S)he will have no fear of bad news; [her] heart is steadfast, trusting in the Lord.” Psalm 112:7

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27 thoughts on “A remedy for bad news

  1. Such a strong faith and such deep love. Thank you for sharing it with us so regularly.

    Words seem inadequate to express my sorrow for your sister’s health situation. I have two sisters and I would be lost without them…and we’re not twins and NOT as close as I’d like. Still…

    Sending you love, hugs, and adding my voice to prayers.

  2. Your family has such unshakable strength together with your faith. Thank you for sharing this with us. My mother-in-law has MS and I know what a hard road it is for her and us as a family. My heart is with your twin and with you today.

  3. J,

    If it is possible read someone’s words and fall in love — the kind of love you have for a lifelong friend, the kind you have for a sister who shares your every joy and fear — then there is no better example than you and your blog.

    I am thinking of you so very often.

    Love,
    Leah

  4. Yes. Remember to celebrate. Thank you for always showing the way, sweets. I think it’s too hard. You prove me wrong.

    And I’m with Boy Wonder’s mama, I want miracles for you both.

    love. love. love.

  5. Reading this I want to write in response a huge long stream of everything I’ve ever read that has seemed promising regarding MS- ayurvedic (Indian) medicine, acupuncture, different herbs and treatments and all of that- exactly the kinds of things that people who are ill and their families don’t want to hear from some outsider who doesn’t know what research they’ve done and how little they want to be burdened with other people’s half-baked advice.

    So, instead I will say that cupcakes are a good way to celebrate life 🙂

    Oh, and I heard about a site from a friend who has a rare autoimmune disease. It’s called http://www.medgift.com and it’s like a ‘gift registry for people who are ill in any way.’
    Her husband and she made a list there so his family would feel like there IS something they could do for her 🙂 She added things to it that she knew would help her or that would make her smile, and her family and friends love that they know what would cheer her.

    Love to all of you!

  6. I love that your sister has chosen to celebrate! Please tell her that I am praying for her.

    This is the verse that I pray daily:

    Heal me, LORD, and I will be healed;
    save me and I will be saved,
    for you are the one I praise. – Jeremiah 17:14

    I’ll be praying this for her as well.

  7. Oh J, thinking of your sister and you. I love that in the face of bad news, you two chose to celebrate all that is good. A wonderful reminder, an amazing way to actually live your life. Beautiful. Love.

  8. I wailed all the way to the gym the morning I read this. I am so sorry. But thank you for your faith. Many are being blessed by your family’s story. And I believe the treasures in heaven are greater for those who suffer. May I share some of this story minus names on my blog? Because of my own sister’s battle with cancer and our great loss, I write a lot lately on grief, prayer, and healing. You all are in my prayers.

    love,
    andy

  9. “We celebrated the fact that even though we don’t know what tomorrow holds – we know the end of the story.”

    What a beautiful quote in a beautiful post!

  10. God’s strength through you both is humbling, beautiful, and so precious. I am praying and agreeing with the other two who are praying for miracles for Rhema and Jenee.

    Nylis and I pray for Hope and Rhema’s healing every night. We will now add Jenee.

    Praise God for the comfort of His Word, His truth’s and His promises. Praise God that you have the faith to trust Him at His word and experience that comfort.

    It truly is a journey, and I thank you, from the bottom of my heart, for sharing it.

  11. Your story is so sad. Through reading it I always had the feeling that i`m reading a fairy tale and was expecting, at least hoping, for a miraculous happy ending. Unfortunately life is not fair and wishes and dreams don’t come true like in a fairy tale. We have to fight, we have to hope and we have to pray.

    All I can do as an outsider is to wish your sister well and include you both in my prayers.

    Best regards,
    John.

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