Wednesday, November 30, 2011

Waiting for another "sweet spot"

As I was looking back at my calendar today, trying to track Patrick's progress throughout his cancer journey, I realized that there was a 2-3 week heavenly "sweet spot" between the time of the GOOD NEWS and his recent decline. When we received the GREAT news that Patrick's tumor had disappeared from his recent MRI scans, we were overjoyed, relieved and excited---thinking once again about a happy, healthy, thriving future for our family. I continue to praise God for seemingly plucking that nasty tumor from PK's brain, but, honestly, I also want to shake my fist at Him some days, since Patrick seems to now only be declining.

Over the last few weeks, Patrick's tripping and clumsiness (ie: neuropathy) has taken a MAJOR turn for the worse, to the point where he can now barely walk, do anything mobile on his own, think clearly or express himself well. Patrick's dad is visiting us this week from China, and he's seen him significantly worsen daily, even while he's been here. The doctors have various speculations as to why this is happening now, but none of their conclusions are certain, and none of their suggestions for a cure seem to be working. We've removed various chemo drugs from his protocol, we're weaning him off of an anti-seizure drug, and doing anything else we can think of to help him improve. And yet he spent all of this morning in bed, even after sleeping soundly through the night. I was upstairs in the kitchen getting lunch ready today, when I heard Ceci call up to me, "Mama, Daddy fall near my potty! Be careful Dada, be careful Dada, uh, oh....Mama!" (No two year old should have to watch her daddy fall, or know how to warn him to be more careful. Shouldn't it be the other way around?!?)

Will you pray earnestly with me that he will improve (soon!)?  We're all pretty discouraged, and I for one am EXHAUSTED. The Bible says that God assigns us our portion, promising to give us no more than we can bear...but I've got to admit that I think my portion is a little too hefty for me right now. I'm in total survival mode. My arm muscles have become strong as I lift our tall 2 year old onto her bike, or into her car seat. And now they need to get even stronger, as I lift my husband back into bed when he falls out, or heave him off of the couch, so that I can help carry his wobbly weight to the bathroom. I'm having flashbacks of my high school job in the neighborhood nursing home, where I'd help the nurses pick up an elderly patient who had fallen to the floor, or hold a fragile, wrinkly arm as I guided an aging hero to their walker or chair in the dining hall. (Who would've known that those learned arm holds and balance techniques would come in handy with my 34 year old husband fifteen years later??)

We meet tomorrow with Patrick's oncology team, who could likely suggest that we get another MRI to see if there's anything new happening in his brain. Will you pray with me that he will have another clean scan, and/or that there will be a very clear reason as to why he's feeling so poorly now? He's then set to begin his 5th round of chemo on Friday, and this one will be done inpatient again, to protect him from injuring himself while attached to his chemo bag.  I'm sad to see him heading back to the hospital again, but I'm also a wee bit relieved that I'll have a tiny break from caring for him 24/7.

Please also pray that we'd be granted a deep sense of peace and hope in the midst of all of this. It's SO hard to imagine what our future looks like now, when today feels so grim. He's slated to bounce back 100% from all of this, and go on to live a full, happy and healthy life....and yet it's really hard to imagine any of that right now. Our oncologist warned us to put off expanding our family for the foreseeable future (if at all...) given Patrick's condition right now; and although I see the practical truth in his suggestion, I grieve at the potential loss of our dream for more kids. He also indicated that if Patrick had received standard treatment at a normal medical facility, given his kind of cancer he would likely only have 2 years left to live. But given the radical (even if uncertain) protocol they used on him 7 years ago, and the one they are administering today, he should have a longer lifespan than that... (Here's hoping for 52 more years!) We celebrated his birthday yesterday in a very understated fashion, as he wasn't up for much celebration, but we did sing Happy Birthday to him (Happy B-party, as Cecilia sings it...), and the silly tag line "and many more..." felt anything but silly this year.

I feel like I'm rambling (sorry), but I can't seem to order any of my thoughts or feelings these days.  Thanks for praying, caring and keeping up with all of this: it means the world to us. I'll let you know when I learn more.


  1. My heart hurts and yet I know that there will be victory in this, somehow. As you said, it's hard to see it now...but I will pray earnestly for his complete recovery. I know it can and I believe it will happen! ~Katie

  2. We love you guys. And we'll be praying, praying praying. May God be great. May God be mighty. May God SHOWER you guys with love and peace tomorrow, and in the days to come.

    Come, Lord Jesus. Come.

  3. You are very much in our thoughts and prayers.

  4. Oh, Julie. I just hurt for you as I read this, and I am definitely praying for your sweet family. Lots of love from the Mugfords!

  5. Julie,
    I can't imagine the weight you are carrying! I will pray for Patrick and I will pray for you and this road you are on. May you feel His comfort and drink from still waters as you walk through this valley (I join you with my fist in the air! I applaud you and the great work you are doing)

    Dorie Coil

  6. Dear Julie & Patrick -- Thank you for the update: we need these to keep praying specifically and clearly. We love you and we are standing in faith and hope for a complete recovery. You and Patrick are courageous, even though I am sure that you don't feel that right now: thank you for continuing to cry out to the Lord. My mind goes to "a bruised reed he will not break, or a smoldering wick he will not extinguish." Lord of Compassion and Power, we ask, by your grace, that you not break this bruised reed or extinguish the hope of this smoldering wick. Be gracious, and be powerful! Amen.

    Steve & Sally

  7. Julie,
    Our hearts grieve with you, but we also live in "hope" with you. My life is a testimony that God's abundant grace and healing is as real today as it has ever been. Michael and I pray for Patrick's complete healing and return to health; for your strength, patience and abuntant peace and for Ceci to experience joy as she keeps a watchful eye on her dad. We love you and miss you all. Vickie & Michael Couch

  8. I love you, Julie, and I am crying out to a mighty God for you....

    Jennifer Taussig

  9. Julie,
    Your family has been on my heart since we talked briefly at homecoming. Praying for you all to feel God carrying you during this time. Love, Cami

  10. Julie,
    I'm so sorry to hear the hardships for you and Patrick are continuing, even as it seemed you were nearing the end of the tunnel.
    I would maybe question the timing of this round of chemo. could it wait a bit?
    Keep up your hope, your trust and your faith. The cancer being gone is the big thing. Nerves can regenerate.
    We continue to pray for you all.

  11. Dear friends,

    It is with a heavy heart that we read this post.

    Earlier, we rejoiced at the GOOD news that no sign of tumor (cancer) was present. This recent decline is difficult, discouraging and makes us despair in empathy.

    Psalm 6 came immediately to mind. Rather than waiting for the mail, here are select verses now.

    Psalm 6 (ESV)
    O LORD, Deliver My Life
    2 Be gracious to me, O LORD, for I am languishing;
    heal me, O LORD, for my bones are troubled.
    3 My soul also is greatly troubled.
    But you, O LORD— how long?
    4 Turn, O LORD, deliver my life;
    save me for the sake of your steadfast love.
    5 For in death there is no remembrance of you;
    in Sheol who will give you praise?
    6 I am weary with my moaning;
    every night I flood my bed with tears;
    I drench my couch with my weeping.
    7 My eye wastes away because of grief;
    it grows weak because of all my foes.
    8 Depart from me, all you workers of evil,
    for the LORD has heard the sound of my weeping.
    9 The LORD has heard my plea;
    the LORD accepts my prayer.

    Psalm 6 (portions from The Message)
    2-3 Can't you see I'm black-and-blue,
    beat up badly in bones and soul?
    God, how long will it take
    for you to let up?

    4-5 Break in, GOD, and break up this fight;
    if you love me at all, get me out of here.
    I'm no good to you dead, am I?
    I can't sing in your choir if I'm buried in some tomb!

    Our love and prayers,
    Martha Berg and Jeff Kraus

  12. The passage that always helps me is in 1 Kings 19 (verses 3 and onward). Elijah, literally, gives up, sits down and prays for God to kill him. God then turns and says, shut up, get up, eat up and keep moving (slight paraphrase)... and Elijah is rewarded by seeing God pass by in the gentle breeze.

    Hang in there. It sucks now. There's no other way to describe it - and it's disingenuous to make it sound like anything less. But the only way to get through it is to actually get through it ("If you are going to go through hell, keep going." - Churchill).

    ps - my whole family prays for you every night (even though it's often phrased as "for Cecilia's daddy").

    - Bill and Elaine Puschmann

  13. Praying for you all. Jesus cares. Jesus understands.

  14. I am an old high school friend of Patrick's from Richmond and just found this blog. Thanks for keeping everyone updated and sharing your struggles in a real way. I will definitely be praying and hope that God carries your family through this and lifts away this recent struggle. As I tell my 3-year old, God can heal through medicine & doctors, our bodies themselves and the way he made them, or through a miracle. May he do one or all three!

  15. much love to you, mama julie in this. you are working so hard. people love you, patrick and cece. they love to help you. it is okay to keep asking for help, okay? It IS okay. praying for PK's healing, healing, healing over and over, again. Andy, the girls and I send love from NC.


Thanks for your prayers!