Thursday, October 27, 2011

Round Three

Time flies when chemo is behind the wheel! Patrick finished his third chemo round on Tuesday of this week. We now have two weeks of potential ups and downs [read: fatigue, neutropenia (where his immune system is compromised, and he can easily catch all sorts of bugs), fatigue, digestion issues, some nausea, daily injections, have I mentioned fatigue??] before he begins again on November 11th. For anyone out there who may imagine that chemo is a walk in the park, show me the soft, freshly cut grass of Park Chemo. Seriously. Our two weeks "off" after our one week "on" (with chemo treatments) are filled with daily visits to NIH for blood-work, scans, or appointments at other physicians' offices. He's unable to drive for at least 6 months (due to the seizures he had following his brain biopsy), so we are "enjoying" quality, 24/7-togetherness time, as Ceci and I shuttle him around town.  After spending most of my days in the car circling the beltway, fanagling Ceci through NIH security, and handling her oh-so-pleasant 2 year old moments, I'm exhausted by 4pm, and still have to stare down bath time, bedtime and our own dinner time. (Let's just say 4pm has now been dubbed "Julie's Vodka Tonic Break").

Overall, Patrick continues to handle the treatment remarkably well. He's much better at self-care than I am, so he embraces the frequent urge to nap or drink green tea whenever his body beckons. We continue to rejoice (with you!) over the good news of his recent scans. His doctors have decided to proceed with the remaining chemo cycles, in order to ensure that they get every last lingering cancer cell. So, he should have 3 more 3-week rounds following our current cycle. I believe we are slated to be through with this sometime in early January. (Happy New Year to us!) NIH will run scans throughout to check on the tumor's progress, but his doctors remain cautiously hopeful that the little bugger is gone. We feel very relieved that his tumor responded so quickly to the protocol, and thankful that radiation is mostly likely off the table.

His primary oncologist, Dr. Wilson, is adding some additional drugs to the protocol, in order to specifically cater the treatment to Patrick's unusual CNS Lymphoma. Besides adding a few new chemo meds to the ongoing "cocktails" (a cheeky name for something so toxic, eh?), he's added (rather ground-breaking) modulators, which are supposed to further breakdown the cancer cells so that they will better respond to the chemo. One of these drugs was used in the 40s or 50s to help pregnant women deal with their morning sickness, I believe. Apparently, it produced scores of disfigured children, and was then quickly taken off of the market. It is only just now being reintroduced alongside chemo treatments. The potential of severe birth defects remains, so Patrick has to sign a pile of papers each week, acknowledging that we understand the dangerous side-effects, and commit to actively using birth control. Before we were visited by the friendly Cancer Committee, we were hoping to get pregnant, and grow our little family. Baby #2 has now been put on the backburner, (as have many of our former dreams and plans) so that we can focus solely on Patrick's health. This is (understandably) hard for me/us, and yet I continue to trust that God has a good plan for us through and after all of this.

Just as the leaves change outside of our windows, I am reminded that life is made up of changing seasons, where the death of something leads to the new life of something else. We die to dreams and expectations of success, and await the rebirth of new, good (hopefully better) things.  In the midst of our challenges, Ceci is growing up and blossoming before our eyes. She's (SO!) tall now, and full of words, expressions, new realizations and emotions. Some of these are annoying/exhausting. Most of them are delightful. As a newly-minted two year old, she's able to tell you that "we take Dada to the ho(s)pital to get some hair". I know, it's not the greatest teaching moment of my life, but it's too funny to correct at this point. (If she's afraid of receiving medical care in the future, for fear of losing her hair, you know who to blame....) If she believes that dinner isn't made, but rather appears magically on one's front doorstep, we have many of you to blame! I haven't cooked a meal in two months, and somehow our fridge remains stocked full of meals ready to be enjoyed. I owe hundreds of thank-you notes, but want to (for now) say THANK YOU here to all of you who've driven 30 minutes out of DC to feed us. THANK YOU to those who have generously donated to Take-Out Taxi so that our cravings for Indian and Thai deliciousness can be fulfilled at the last minute. THANK YOU to those who have mailed us restaurant or grocery store gift cards. THANK YOU to those who have offered/provided us play-dates, "mansits" and rides to NIH.  I really hope that someday I can give back to each of you with at least a measure of the kindness you have shown us. We are daily amazed at and grateful for your prayers, love and generosity for us in this time. We are blessed beyond measure to have you in our life, and thank God for your abiding friendship and love.

Well, Patrick and Ceci just stepped outside to go on a "bear hunt" of sorts. (They're guaranteed to find some deer in the gorgeous woods of Great Falls, but hopefully we'll be spared a trip to the ER, due to nasty bear claw encounters.) I suppose it's time for me to make dinner. Oh wait, it's already made. (Thanks to one of you.) 

Well, then, bonsoir, for now.


  1. Praying, Patrick & fam.

    Grace and peace be with you-

  2. beautiful update. love you guys

  3. Sounds like you still have your sense of humor and are doing as well as can be expected! Julie, you write beautifully even though the subject matter isn't what you would like! Take care, "stiff upper lip" and all that! Love to all,

    Aunt Jennifer

  4. Loved the post and love these Bible verses:

    Psalm 138:7-8 (English Standard Version)

    (7) Though I walk in the midst of trouble,
    you preserve my life; you stretch out your hand against the wrath of my enemies, and your right hand delivers me.
    (8) The LORD will fulfill his purpose for me;
    your steadfast love, O LORD, endures forever. Do not forsake the work of your hands.

    Prayers continue for ALL of you,
    Martha Berg and Jeff Kraus

  5. Thanks for sharing the HARD parts of this. Sometimes folks in your position feel obligated to "sanitize" their updates to protect the readers. You are probably still doing this to some extent, but it helps to hear some of your struggles, which motivates more fervent prayers. It is also great to see that you are counting your blessings!
    Peace of Christ to the three of you!

    Jeff and Sharon Bjorck

  6. Love reading your updates! Thank you for keeping us informed! We are thinking of you and praying for you constantly!

    Laura and Silas

  7. Hi Julie! Jason and I just wanted to let you know that we have both been praying for you (independently of each other!). I have actually tried (since the reunion) to find you on FB, but Im thinking maybe your privacy setting is such that Im unable to... maybe you could find me?! We just read on your church's website the most recent update on Patrick and we are praising the Lord... and we are, of course, keeping you in our prayers. We have thought of you often since seeing you at Wheaton and our hearts are with you. We will keep in touch!

    Stephenie and Jason Runyan

  8. sooo glad to hear that people are bringing you food. i hope you don't have to cook and grocery shop on top of all that you are already doing. it's great that your community is so supportive and behind you. much love to you each in this. stacy


Thanks for your prayers!