Wednesday, February 4, 2009

A Shocking Second Opinion

I'm just writing about this early this morning because I came home last night to sleep. I wanted to write sooner, but honestly, I was just too exhausted.

The oncologist came into our room last night with a rather shocked expression on her face. We knew the only news we were waiting for was the 2nd opinion from Sloan. She said she had spoken to them a few hours ago and that she had been trying to process what they said ever since. It seems their opinion varies greatly from the treatment plan laid about by Strong (which is according to national Children's Oncology Group protocols for treating neuroblastomas like Brady). The doctor at Sloan said that for Brady's Stage 3 NB they would NOT do chemo, instead they would use VERY aggressive surgery, possibly many surgeries, to try and take out the cancer. You are probably as shocked as we were as you are reading this.

Our oncologist said that their opinion shocked her as well. We spent the next 40 minutes hashing out the details, the research, the what ifs. Basically we have been giving two choices, two very different ways at hopefully achieving the same outcome. Each choice carries risks, possible life long consequences. Both hospitals are throwing around the figure 90% as a possible chance at cure (not sure if that includes long-term cure or just short term remission). Here is a a little more about the two options:

Option 1: Go to Sloan Kettering in NYC. Have their surgeon, who does 5 NB surgeries a week, operate on Brady to remove as much tumor as possible. Rescan to see where areas of cancer remain. More surgery.
pros of this approach: No long term side effects of chemo
cons of this approach: Brady's tumor involves his spinal cord. This is VERY risky surgery, just as his surgery was that started this whole process. There is serious risk of paralysis, or other neurological complications, also the risk that comes with surgeries. Our other thought is, how can they be sure they are getting all of the microscopic cancer cells that are in his body? It seems logical to us that relapse would be a strong possiblity with this approach alone.

Option 2: Complete 2 rounds of chemo at Strong. Rescan. The 2 round study says that it expects to see a 50% reduction in tumor size. After chemo, go to Sloan Kettering in NYC for surgery by their surgeon to remove what is left.
pros of this approach: The idea with chemo is that it works on the whole body, hopefully killing any cells, anywhere that are cancerous. By using chemo to reduce the tumor size, we hopefully can improve the outcome of surgery.
cons of this approach: Chemo is poison. The long and short term side effects can be horrendous. Organ damage, infection, and sterility are just a few possible ones.

Our doctor will be stopping by this morning to see what we have decided. Our logic seems to be leading us toward the 2nd option, kind of using both methods in moderation. However, we are haunted that the experts in the field at SK are giving us a different suggestion. We wish we could just go down to NYC and meet with the docotr. But time isn't on our side. We need to choose and get started.

Our need for prayer is simple: God lead us with your grace in the direction we should go.

Thank you friends and family for continuing to follow us on this roller coaster ride. Brady is SO worth it:)

8 comments:

  1. What a hard choice you have to make for little Brady. I pray that God will guide you and keep you strong during this decision making time.

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  2. Megan,

    I will continue to pray that God directs you in the right path. I couldn't get these verses out of my mind as I was reading your post. So I thought I'd share them with you. I pray they give you comfort and a sense of peace that God is with you and will guide your decision making.

    Isaiah 30:18-21
    Yet the LORD longs to be gracious to you;
    he rises to show you compassion.
    For the LORD is a God of justice.
    Blessed are all who wait for him!

    19 O people of Zion, who live in Jerusalem, you will weep no more. How gracious he will be when you cry for help! As soon as he hears, he will answer you. 20 Although the Lord gives you the bread of adversity and the water of affliction, your teachers will be hidden no more; with your own eyes you will see them. 21 Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, "This is the way; walk in it."

    Love & prayers,
    Stephanie Debo

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  3. I pray God leads you in the right direction. What a difficult decsiosion.

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  4. Steph...thank you for this amazing verse that gives us so much comfort right now;)
    Megan

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  5. I found your blog via TC. I cant believe you have to go thru this. Why kids gets cancer is beyond me but it angers me greatly!!! I will be thinking of your family and hoping that Brady gets cured.

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  6. Guys, we don't hear God audibly say, do this or that, but it's that gut feeling, the pounding in your heart, and the thought that doesn't leave your mind that is God answering you.Go with your gut once you've gathered info and prayed. i agree option 2 sounds better, he's in the palm of god's hand

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  7. I'm not a doctor (just a mom), but I was wondering if the opposite approach was considered, e.g. do the surgery at Sloan first and then follow up with 2 rounds of chemo to get any cells that they missed?

    It's both essential and horrifying that parents have to participate in these decisions.

    I pray for wisdom, comfort, and peace for your family. A miracle would be well-timed, too.

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  8. Shelley Anderson KropelinFebruary 6, 2009 at 6:12 PM

    Dear Matt and Megan
    You are all in my thoughts and prayers! Stay strong! God has a plan!
    Take Care
    Shelley Anderson Kropelin

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