Sunday, April 12, 2009

Waiting For The Trial

We brought Sarah home from the hospital yesterday afternoon. This time the decision to bring her home was a tough one. Sarah is still having fevers and sometimes at night her oxygen saturation's drop down to the high 80's. We are very concerned that she has an infection somewhere that the docs cannot find. Sarah has had numerous x-rays and CAT scans that have turned up nothing.

Ben and I waited until the last minute to tell her she was leaving the hospital just in case something happened and she had to stay. Before being discharged Sarah was beefed up with platelets, and a dose each of Ativan, and Benadryl for the ride home. Amazingly, she made it the whole way home without throwing up.

Arriving home from the hospital is always very busy and a little stressful. This time it was a little easier because we had separate cars. Ben stopped by the pharmacy while Sarah, Asa and I went ahead to the house. As soon as Ben got home we wrote up up Sarah's new med schedule and started with them.

Sarah is still sleeping with us at night so that we can keep a close watch on her. I wasn't sure we were going to get any sleep last night because Ben kept asking me to wake up and listen to Sarah breathe. We are only scheduled to wake up once (2 am) for meds. Though, last night went well.

The clinical trial looks like it is going to happen later rather than sooner; They won't be ready for Sarah until the middle of May. No one is sure Sarah will be able to wait that long. We are trusting God to work out these details. But still doing our share of worrying.

St. Judes is working with Sarah's Dartmouth Oncologists to manage her leukemia prior to her slot opening. Since Sarah's cancer is still responding to chemotherapy (but returning shortly after treatment), she'll be given more frequent smaller (less physically stressing) doses of chemo while her blast count is low. In contrast, the approach up until now has been to give her more intense chemo treatment and wait as long as possible to repeat. Hopefully, the new approach will prove effective and easier on her little body.

Sarah was in God's hands even before her diagnosis on May, 4 2008, but we feel it every minute of every day lately. We are grateful she is still with us and pray for God's mercy, strength, comfort and continued hope.

Please pray specifically for Sarah's fever and underlying issue to correct and the alternate chemotherapy treatment to prove effective for Sarah.

-Susan and Ben


Anonymous said...

Father God, I lift little Sarah, Susan, Ben and all the family to you. Please bless them Lord. Give them the strength and courage to face each hurdle that comes their way. Guide the doctors and all the members of the treatment team as they administer to Sarah's physical needs. Hold this family close to you Lord. May they feel your presents and experience you love and compasion through the miracles that continue to happen in Sarah's life.
In Jesus' precious name
Amen and Amen

barbara said...

Hi Susan... my name is Barb Wyler, and I am a friend of your brother-in-law, Tim Daniel. (I met Sandra once a number of years ago.) I emailed a prayer request to Tim and several others two weeks ago, and sent out an update today, and he replied asking that I keep you and your family in my prayers. My sister, Brenda Kline, lives in Grantham, NH and works in the Hem/Oncology department at DHMC, as an administrative assistant. (Small world ~ huh!)

Anyway, I wanted to say that I will certainly pray for Sarah, and you and your family. If there's anyway my sister could help you when your in the area, let me know or contact her at the hospital. We're both believers and are prayer warriers, and will add Sarah to prayer lists if it's okay with you! May God intervene in this... may His will be done!

Your friend in Christ,

Barb Wyler

BrendaFlickingerKline said...

Hello. I don't know you but I am Barb's sister, Brenda and I work in Hem/Onc Admin at DHMC/NCCC. Feel free to contact me when you are here - right now my hours are M-Th 8-6:30 and I would love to meet you and even pray with you.

Blessings in Christ,

Brenda Kline

mary n jones said...

From Aunt Mary in Arkansas: Such strength and love in the Ben and Susan family! I am thinking about you and praying for you that God's love, and peace and presence and healing surround everyone one of you, your friends on site helping, and all the medical staff searching with you, Ben and Susan, for ways to nurture and heal in this tremendously painful journey. Thank you so much for sharing on your blogs the joy moments that are so precious, as well as updating on the process and constant planning all of you have to do. Please let me know how I can be the best help when you start towards St Jude's; I am only 2 hrs away in Little Rock. Much love and healing energy is being sent to #2 Beaver Lane in Bedford, New Hamsphire. Love, Mary