Treatment Decision

From: Kit Danley

Hi Dear Friends,

I have been so grateful for your ongoing commitment to reading this blog and praying for Katy. You are dear to us, and we are strengthened by your persevering with and for Katy during this difficult time.

The next two weeks are critical for prayer, which is why I am writing to you right now. Katy has two weeks to make a very important decision regarding her treatment.

Let’s remember what her oncologist and the tumor board have said so far:
· Her MRI looks nice and clean right now, no swelling
· Her blood work is good
· He wants the genetic markers … these tests have been done, but they seem to be lost in the transfer (PRAY THAT THEY ARE FOUND); they are going to be helpful in discerning treatment potential
· He didn’t know what exactly to recommend regarding the next step which is why he consulted the TUMOR BOARD
· The Tumor Board approved Katy’s enrollment in the Clinical Trial using Temador (a pill) and Motexafin Gadolimium (I.V. infusion), there were two slots left in this Phase I study and they are saving one of these for Katy. (The use of Temador alone for 1 year has been eliminated as an option)
the motexafin gadolinium is generally well tolerated (blistering around nail beds, it can discolor skin to green)
· Katy’s other option – is to do nothing. Her tumor will come back; this is the kind she has. When it does, she can choose treatment then. (Of course, God can completely heal Katy, which remains our prayer.)
· Her next appointment is July 7

Katy is in a prayerful situation. What should she do? Begin the trail with the chemo, not knowing completely how sick she could become and even if there are any positive outcomes. Remember, these rare tumors are just now being studied. Or, wait until there is tumor regrowth and begin treatments then.

Only God knows what to do in these matters. So we are committed to pray with Katy until she sees the doctor on July 7 to give him her answer. I am praying for direction, for peace, for wisdom, for clarity, for HEALING. Will you pray with Katy, her family and her loved ones for these next two weeks, that we might see God guiding Katy into this next major decision. Loving you, Kit

Praying Psalm 34:

Join me in spreading the news;
together let's get the word out.
GOD met me more than halfway,
he freed me from my anxious fears.
Never hide your feelings from him.
When I was desperate, I called out
Open your mouth and taste,
open your eyes and see—
how good GOD is.
Blessed are you who run to him.

Tuesday night

Tuesday, June 21, 2005 11:56 PM
Blog update

A quick update:

Dr. Shapiro reported that the Tumor Board approved my enrollment in the Clinical Trial using Temador and Motexafin Gadolimium if I choose, if not they recommended that I have no further treatment at this time, but be closely monitored. That study is in Phase I, although Dr. Shapiro said that the dose has already been determined. Our next appointment with him is in 2 1/2 weeks. So essentially one of the options has been eliminated: Temador for a year (which is what he has been talking about for a month.)

Answers to prayer:

1. The tumor board information is another piece in the puzzle toward making the larger decision about treatment.
2. I am close to being off of the steroids
3. I have had several opportunities to be in the Head Start classroom this week and will get to see 9 of my favorite little ones graduate on Thursday
4. I am having a reaction to my medication, so tomorrow I will try a new one (but hey third time is the charm, right?) I am just thankful they have so many types for me to try.

Praise God for all of these blessings!
:)Katy

Thursday, June 16th, 8pm

Dear Ones,

We're trying to digest all that happened today: two doctor appointments and the first MRI since finishing radiation. First we met with a new Internist who had been recommended as a very good Primary Care Physician. We were very impressed with her and relieved to have that piece of the puzzle in place.
Next came the MRI which was read by the Neuro Oncologist at our afternoon appointment. "That looks great- nice and clean, no swelling, nothing going on!"
"Why did you have so much trouble with (weaning off of) the Decadron?" At this point there is no answer to that question. Katy is again cutting down on the steroids and so far, no problems. Thank you, Lord for these wonderful steps.

At that point we were anticipating his schedule for the chemotherapy he had indicated Katy would be using for a year. It seems that things are not so clear as we had thought. He said that Katy has three choices: Temador (chemotherapy drug) now; do nothing until the tumor recurs, then treat; take part in a study using Temodar and Motexafin Gadolinium together. The doctor decided to consult the Tumor Board next Monday before recommending a treatment plan.
He wants to let Katy have 3 weeks off to recover, return to work and weigh her options. Anaplastic Oligodendrogliomas are rather rare; treatment options are few. It is known that that type of tumor responds to radiation; chemotherapy results are unsure.

What is sure is that God is sovereign and loving. We continue to marvel at His faithfulness and daily miracles.

Thank you for your prayers. Please pray for these things for Katy:

      1. wisdom in making medical decisions
      2. being able to get off steroids totally
      3. getting back to work successfully
      4. that there would be no other side effects from radiation

Please know we can feel your prayers and are grateful.

Love,
Rick, Patty, Lenny and Amy

Katy in Indiana

From: jvdavis195
Sent: Sunday, June 12, 2005 5:56 PM
Subject: Katy Reel

Here is a picture to add to Katy's blog page. She was at her family reunion on the 11 of June. There were 80 family members who gather for the day to celebrate life, love and the blessings God has shared with them. The pictures shows Katy and her second cousins. It was a great day of love for Katy and her family.

Blog Update from Katy

Your love O LORD, reaches to the heavens,
your faithfulness to the skies.
Your righteousness is like the mighty mountains,
your justice like the great deep.
O LORD, you preserve both man and beast.
How priceless is your unfailing love!
Both high and low among men find refuge
in the shadow of your wings.
They feast on the abundance of your house;
you gave them drink from your river of delights.
For with you is the fountain of life;
in your light we see light.
Psalm 36:5-9

Today I received my last radiation treatment! I am so thankful to complete this portion of my treatment feeling very well, having some of my hair, and they let me keep my mask:) I will find out how the remnant of the tumor has responded to this treatment when I have my MRI read on June 16. Thank you for taking this journey with me. Thank you for all of the many ways that you have loved my family and helped carry some of the burden at this time.

I will be in Indy for a short time to visit my Grandfather and attend my family reunion. When I return I will see my doctors and get the final word on the rest of my treatment.

Sunday, June 5th @ The Neighborhood Center