Tuesday, October 19, 2010


Good news and bad news. We are frustrated but encouraged. We are waiting yet doing something. We are tired but strengthened.

It's all over for the day, as I told Sophia as we were leaving TCH. We will be back tomorrow and Thursday but we are done for now. And she had Smashburger, which makes her extremely happy.

What we know:
1. It is called an Undifferentiated Sarcoma. It's rare and it is a grade 3 (highly malignant, grows fast). We had a 1 in 11 million shot to get this type.
2. Some combination of chemo, surgery and radiation will be involved in treatment.
3. The steroids are working to remove the inflammation around her eye, so her eye is not bulging much and is aligning better.
4. Her incision is healing VERY well.
5. The doctor knows what she is talking about and there will be a good, no great, team working out her treatment plan.

What we don't know:
1. The treatment plan
2. If it contained just behind her eye or if it has spread.

We are in a phase called staging, which basically means they have to confirm whether or not it has spread. Likely places are her chest/abdomen and her bones. So, tomorrow is a CT of her chest and a bone scan.

Thursday is a spinal tap and bone marrow aspiration (in both hips), which she will be asleep for (outpatient procedure).

Both happen in the early afternoon both days.

Then, next Tuesday, back to the oncologist and we will find out the treatment plan, likely to start next week as well.

If you want to confirm (from another source other than TCH) all that I've told you, I ran a search and Cincinnati Children's Hospital has a page about this. Since it is behind her eye - ours is of the soft tissue variety.

I continue to pray for miracles and at this point - I'm asking for 1. it to be contained, 2. with clear margins (meaning not in surrounding tissues), 3. removable by surgery 4. with little to no radiation required. That is absolute best case.

I won't even mention worst case. Just no need to go there. (But doctors always do which will give us some sleeplessness, I am sure.)

It is, and will be, common throughout this process to wait a lot. I'm getting a whole lot more practice in it than I ever wanted - BUT - at least we have more tests to do. It's something.

There are 135 references in the NIV standard version of "wait" in the Bible. God's people are required to wait. A LOT. And we are no exception. So, to encourage myself, I will be praying on this verse:

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!

I'm counting on that grace. I'm craving that compassion. I'm looking for that justice. I'm waiting on that blessing. Jesus, our lives depend on it.


Sharon said...

The waiting sucks, but glad to hear things are moving forward. just remember how blessed we are to live in Houston with TCH right down the road! She'll have the best care possible. Praying for your family everyday! Love and hugs to all of you!

Miss Niss said...

Amy, I am keeping you, Sophia, and your family in my thoughts and prayers, and asking my woworkers to pray for you. I agree with Sharon, take it as a blessing that we do live in Houston, where the best of the best come to practive medicine. TCH and MDA are awesome and I know they'll make everything possible happen to ake care of Sohia.

And it was Steel Magnolias. :)

CK said...

I pray for your strength, resolve and patience as the battle is the Lord's! Remember what man says is not or may not be possible is POSSIBLE WITH GOD! Matthew 19:26
Love and prayers go with you every moment!
Love in Christ,

Tricia said...

Amy, I don't know you. Jenne Barbour and I are FB friends (knew each other in high school) and that's how I know about you and your daughter.

While we've never met, we are sisters in Christ.

I am following your story, and lifting you and your family and especially that darling baby of yours up to our Heavenly Father.

Bless you and your family.

James said...

Romans 8:25 -

But if we hope for what we do not see, with perseverance we wait eagerly for it. (NASB)

It's hard to know what the future will bring if you can't even visualize everything...but maybe that's just part of our human condition? Paul must have known that too, and I've found great power in these words...God knows the plan even if you don't yet, and he knows what the future is...trust in Him!

chrystal Snell said...

Praising the Lord for His walk with you...Thanking Him for your location...Trusting Him for grace..Clinging to His promises of omnnipotence...and sending you all the love and prayers one can send to another. In these stormy waters, He is the Master of the sea. Hugs!!!

Paula said...

We join you in waiting for the LORD to do mighty works in the midst of the "mess!" Praying with you and for you, Paula

Barbara Conklin said...

Amy, we are all praying for you and your entire family. You might want to look at this link during some of your wait time. This is my cousin's baby. I think you will love their testamony. http://www.rhemamiracle.com/

Love to you all,