Grace’s Story

Site created on August 1, 2019

Grace is the youngest of our four girls and loves Jesus, playing with her friends, reading books, jumping on trampolines and playing with toys. She was diagnosed with leukemia in late July, 2019 and this journal is part of her journey. If you would like to give financially to her medical care you can visit www.hopeforgrace.net. Thanks for praying for little Gracie!

Newest Update

Journal entry by Jonathan Wiest

Day 238

(LONGER POST) We begin a brand new phase of treatment on April 9th. Praise God we are on the final leg of this journey and although it is long, it's much less intense.

Looking back, Grace has come through "Induction", "Consolidation", "Interim Maintenance I", "Delayed Intensification", "Interim Maintenance II" and now she starts her sixth and final phase called "Maintenance".  Over the past week or two we have received a handful of congratulatory texts and calls that her treatment is over, but we wanted to clarify what is involved with "Maintenance" and how to pray specifically during this phase.  

The good news is that most of the potent chemo drugs are behind us (Dox, Peg, Erwinia, Cyclo, etc) and the rhythm moving forward will only be with drugs her body is familiar with and a cycle that is much less intense. A good analogy might be that we are wrapping up an obstacle course and now entering the final leg of the race, a long run on even terrain to the finish line.  Grace has completed the toughest obstacles but the key to finishing well will be to keep our eye on the prize, not trip and fall, and stay focused on what is before us. 

Her hair will return, she will be able to go back to school, and most of her interactions will return to "normal".  She will still have a low ANC at times, infections are still a reality, and certainly we will monitor her counts each month, but for the most part we want her to begin to experience her Kindergarten year of school without much interruption. The unknown factor in all of this is COVID-19 and while it doesn't seem to be impacting kids under 15, there is still much uncertainty in the leukemia community on how it might affect cancer patients.  We are praying that as this unfolds, it will be discovered that ALL children will have a higher degree of immunity. Right now we are being EXTRA cautious.  Here is a look at the rhythm moving forward with "Maintenance" that begins April 9th.

April: Vincristine and a Spinal Tap (Methotrexate) (daily steroids 2X a day for 5 days)
May: Labs
June: Labs
July:  Vincristine and Spinal Tap (Methotrexate) (daily steroids 2X a day for 5 days)
August: Labs
September: Labs
October: Vincristine and a Spinal Tap (Methotrexate) (daily steroids 2X a day for 5 days)
November: Labs
December: Labs
January 2021:  Vincristine and Spinal Tap (Methotrexate) (daily steroids 2X a day for 5 days)
February: Labs
March: Labs
April:  Vincristine and Spinal Tap (Methotrexate) (daily steroids 2X a day for 5 days)
May: Labs
June: Labs
July:  Vincristine and Spinal Tap (Methotrexate) (daily steroids 2X a day for 5 days)
August: Labs
September: Labs
October 2021: End of treatment!  (She will then need to go in for regular labs to be sure the leukemia does not return)

In addition to hospital visits she will also receive daily oral chemo. There are the daily steroids after Vincristine, 6MP or Mercaptopurin every night, oral Methotrexate once a week, and Septra on Saturday and Sunday. We are hoping to train her to take pills as she still has a bit of aversion to the taste of the medication.

Finally, we are praying for all of you and our world in the midst of this pandemic.  Last night I felt a strong heaviness after reading the news of makeshift hospitals being planned in major cities and the reality of the mounting death toll.  It does feel like we are at "war" with an unseen enemy.  In addition to Psalm 91, I believe God has given me another Psalm to consider during this season and I would like to write it out below.  May it encourage you during this time.  

Psalm 46:1-11
"1God is our refuge and strength,
an ever-present help in trouble.
2Therefore we will not fear, though the earth give way 
and the mountains fall into the heart of the sea,
3though its waters roar and foam
and the mountains quake with their surging.
4There is a river whose streams make glad the city of God,
the holy place where the Most High dwells.
5God is within her, she will not fall;
God will help her at break of day.
6Nations are in uproar, kingdoms fall;
he lifts his voice, the earth melts.
7The Lord Almighty is with us;
the God of Jacob is our fortress.
8Come and see what the Lord has done,
the desolations he has brought on the earth.
9He makes wars cease
to the ends of the earth.
He breaks the bow and shatters the spear;
he burns the shields d with fire
10He says, “Be still, and know that I am God;
I will be exalted among the nations,
I will be exalted in the earth.”
11The Lord Almighty is with us;
the God of Jacob is our fortress.

Psalm 46:1-11

Amen, 
Jon and Katie
www.hopeforgrace.net (financial donations)

 
 
 
 
 
 
 
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