Tuesday, January 31, 2012

Second Opinion and Prayer Requests

We are requesting prayers from any and everyone!
So yesterday, we finally made the long trip to the University of Chicago and met with Dr. Sonali Smith for a second opinion. Dr. Smith is one of the leading experts on lymphoma in the world and the timing in meeting her was providential and perfect because she was able to make a more complete and accurate diagnosis with the benefit of having the full blood work and PET scan available for her review and we were able to miraculously get in to see her before Kim's 2nd round of chemo.

She is an acclaimed research doctor with excellent bedside manners and despite her brilliance has a way of explaining things in “layman” terms. She was also very up-front about all the potential risks and pitfalls we might be facing. While, to be truthful, some of it was hard to hear – we appreciated her honest approach and her over-arching desire not to just “treat” the disease and beat it into remission, but to cure it, so that it might never appear again in Kim’s lifetime. (It’s not until 5 years after treatment in which the cancer does not reappear that she is officially declared to be “cured” – so this is a long road regardless of remission)

Apparently, there are over 60 types of lymphoma and although R-CHOP is the standard protocol for treatment for the vast majority of this type of cancer, certain kinds of lymphoma, with certain patient risk factors, can dictate a better course of treatment.

She is still in the process of reviewing the blood slides and looking to see if it is MYC positive (?) but her hunch is that Kim may have a primary mediastinal b-cell lymphoma (slightly different from diffuse) and she is strongly recommending (even if it is just diffuse b-cell lymphoma) that we take on a more aggressive approach to the cancer with a regimen called EPOCH-R based on several risk factors such as the size and stage of the tumor in Kim (see this link for basics on this treatment). This treatment is similar to the R-CHOP (notice it’s basically R-CHOP spelled backwards with an added “E”) but it adds one additional drug “Etoposide” – which should further enhance the cure rate. Dr. Smith only recommended that Kim go through 6 cycles instead of entertaining going to 8. Apparently, for some of the drugs in this regimen there is a maximum limit that the human body can take over a lifetime – too much and it can literally kill you - it's that toxic. So it’s very important that this is dealt with in the first go-around as future options for treatment will be more limited. 

She also told us she would highly recommend methotrexate injections  which would be administered via spinal taps (similar to epidural injections) during every cycle.  Apparently, there is a risk that the cancer could reappear and attack the brain and this drug, while not eradicating that risk altogether, would mitigate that risk to a low percentage of recurrence.  This risk was never communicated to us and the thought of brain cancer was a bit much for Kim and this is where she started to fight back tears.
The downside to all of this is that this more aggressive approach will definitely be harder on Kim’s body and it will also mean that the treatment cannot be done on an outpatient basis but will require coming into the hospital for every 3 week cycle for 4-5 days at a time as the drugs need to be administered slowly. We have decided that moving Kim’s care to Dr. Smith is what the Lord is leading us to do. As I explained in previous posts we sensed the Lord’s leading us to her to be our doc (see here and here). It looks like the second round of chemo will likely begin on Friday and we will be admitted to the U of C hospital system then for a few days. This will obviously mean we are in for some long drives into the city but it is worth it to be under the sensitive care of one of the best. The good news is, in Dr. Smith’s mind, with this treatment the cure rate should approach nearly 90%.

That said, whether the predicted cure rate is 90% of 10% is somewhat irrelevant. As is the case with all forms of cancer, there is no such thing as a “sure thing” and while we are being prudent in doing everything we can to find the best care and treatment for Kim, our faith does not ultimately lie in a specific treatment, or a specific doctor but only under the hand of a sovereign God who knows the end from the beginning  – and this has been our greatest source of comfort.
Some trust in chariots and some in horses, but we trust in the name of the LORD our God. –Psalm 20:7
Dr. Smith recommended that we take a very conservative approach to the risk of infections. So, while we had planned to see a lot of people during this time, we are now having to impose a strict limit to the number of visitors into our home – especially children and especially if there is a hint of any illness. Anyone that enters our home must wash their hands thoroughly and immediately. Kim will be wearing a mask if we decide to go out into public places (i.e. church) and will be staying away from tight, crowded places. We were told not to travel until 1 or 2 months after the last cycle which would mean no travel until June or July. While we appreciate all the recent visitors I’m really asking all our friends to respect this change. If you are kind enough to drop off food for us please use the utmost care when preparing the food – and please utilize the bin by the front door. Also, while we know some of you incredible friends of ours come a long way to serve us in this way, and while we would LOVE to see you, it’s difficult for us to greet everyone that has been kind enough to do this so please understand this as well.  

Now for some specific prayer requests:
-Please pray for our children. Caleb has been having nightmares about mommy dying and Selah gets nervous every time we go out and asks if mom is going back to the hospital as she’s fearful mommy will be gone for a long time again. Timothy is still happy as a clam playing Legos and monopoly.  They will all need to adjust to this new schedule along with the increased hospital stays but I must say overall they are doing remarkably well and we attribute it to the Lord hearing many of your prayers for them.  

-Please pray that this treatment would be successful. We won’t know for sure until +5 years from now but pray that Kim’s body would respond well to the drugs (i.e. no more infusion reactions please!) and that despite the many toxins these drugs will introduce into her body, that the side effects (e.g. nausea, fatigue, cramping, soreness, etc) would be muted and the tumor would disappear quickly (especially as it relates to her percardial effusion/heart issues). 

-Please pray that we would continue to see “more of Jesus” in and through all of this. We are literally walking “through the valley of the shadow of death” right now, but pray that, not even for a moment, would we would succumb to “fear” but continue to find the ethereal peace that comes only from sensing His nearness.
Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me.  –Psalm 23:4a
We are praying for healing. A full and complete healing as are all of you. But more than a physical healing we pray that God would redeem this “curse” as only He can, and from it a myriad of spiritual blessings will flow not just upon us but to each and every person (known and unknown) who has chosen to walk this valley with us. Glory to God – we are seeing Him already work in a profound and powerful way and we stand amazed.

Humbled by Grace,

Peter & Kim

p.s. Sorry I didn’t pick up on the Special Praise – a lot to pray for right now and that will come soon. Thanks!


  1. Thanks for the update - we won't stop praying.

    For God alone, O my soul, wait in silence, for my hope is from him. He only is my rock and my salvation, my fortress; I will not be shaken. On God rests my salvation and my glory; my mighty rock, my refuge is God. Trust in him at all times, O people; pour out your heart before him; God is a refuge for is. Selah

    Psalm 62:5-8

  2. ok, i'm bringing anything antibacterial that Walgreens carries and surgical masks this week. It will be in the bin. :)

  3. Kim & Peter,

    You are in my thoughts and prayers. I know that Lydia has shared a lot of my experience with you. Every step of your journey brings me back to my cancer battle just over 5 years ago ... felt like I was living at U of C. The cafe food is not so great but they have some good smoothies there that help during chemo days when you just don't feel like eating. There is a little Au Bon Pan in the main hospital section where I picked up yummy pastries for the kids which helped take their minds off the fact that I was at a hospital all day. I will be hitting my 5 year anniversary this May and now only go there 3x a year. Every time I enter the hospital it feels foreign to me now. You are in very good hands. Let me know if you ever need to talk.

  4. Isaiah 43:1-7
    1 But now thus says the LORD,
    he who created you, O Jacob,
    he who formed you, O Israel:
    “Fear not, for I have redeemed you;
    I have called you by name, you are mine.
    2 When you pass through the waters, I will be with you;
    and through the rivers, they shall not overwhelm you;
    when you walk through fire you shall not be burned,
    and the flame shall not consume you.
    3 For I am the LORD your God,
    the Holy One of Israel, your Savior.
    I give Egypt as your ransom,
    Cush and Seba in exchange for you.
    4 Because you are precious in my eyes,
    and honored, and I love you,
    I give men in return for you,
    peoples in exchange for your life.
    5 Fear not, for I am with you;
    I will bring your offspring from the east,
    and from the west I will gather you.
    6 I will say to the north, Give up,
    and to the south, Do not withhold;
    bring my sons from afar
    and my daughters from the end of the earth,
    7 everyone who is called by my name,
    whom I created for my glory,
    whom I formed and made.”

    About 20 years ago, when my car at 60 mph was wildly careening out of control, violently crashing down into a steep ditch and flipping over, God gave me this divine, gracious calm and peace even though everything around me was absolutely terrifying and completely out of my control. I should have been afraid. But then at the same time I wasn't afraid. It was a strange experience but after that, I was better able to understand these verses from Isaiah. I will pray them for you.

  5. Kim, Peter,

    I cannot tell you how hard it has been following this. My mother died of cancer last November, so it is truly difficult to read what is happening to Kim. You and your family are in our prayers.

    Pete (Ada's dad)

  6. Hi Peter and Kim,

    Our Almighty God has given me a confidence that your prayer is already answered for our faithful savior Jesus has accomplished everything for you before God. I pray that you may continue to stand firm in the faith in Jesus Christ, who went through everything for you.

    Brian Kim (Calvary Church)

  7. The 5-yr minimum is a sobering realization. Praying for you and your precious kiddos.

  8. Btw, that is one of the sweetest little photos ever! If donkeys can talk, dogs can pray!