Saturday, March 21, 2009

The last couple of days have gone well for Sarah and the rest of us. The VNA came on Friday morning and the lab work showed that all of Sarah's counts were down. Her WBC's were at 0.18 and the blasts were 10% of that. We are glad the blasts came down but still mindful that we need to be watchful for infection with such a low white count. The VNA will be back early Monday morning for more labs and most likely she will go to the hospital to get some red cells and platelets. I almost forgot to say that Sarah's fever is gone. yay. She is on some heavy lifting antibiotics.

I have worked out my clinical trial issues and come to a decision as to what I am willing to do. If Sarah does qualify I will definitely agree to take her. Which brings up a few other thoughts. The trial we are thinking of is taking place in Maryland and Tennessee. We are not sure which hospital we would go to yet, but be assured wherever it is, we will all go. Neither of us are willing to let the other parent take Sarah hours away or to another state to most likely die without her family. Sarah's need for her siblings became very apparent to us during her BMT and most recently the last few months that she has spent in the hospital. Without her siblings she became very depressed and has sometimes cried, "I need more people", and "I need my family". No, wherever she goes Sarah will have all of her "people" with her. At this point, I can not imagine us making any other choice. We don't know how we are going to make this happen logistically and financially but we have decided in our hearts that if it comes to a trial we will.

Most people have no idea what it is like to have a serious illness like cancer take over your life(including us before). It is all consuming leaving little time for anything else. My good friend Lynn has been doing most of the Sam's club runs for us and thankfully all our children help with running the house. Even so it can be very difficult at times to get our brains to think anything not cancer related, especially now. So normal every day things seem more difficult to accomplish.

Thank you to all of you who sent us your love and messages. I knew you were out there. We were overwhelmed by your love and compassion and so blessed and encouraged to hear from you. Keep em coming.

Susan

PS Sarah has been having lots of fun playing with her siblings, her cousin Philip, and her Leapster.

6 comments:

Anonymous said...

Bunches of love and prayers!
Shera for us all

Anonymous said...

Oh Susan, I'm so happy to hear that things are well. I look forward to seeing you all again soon and please keep us updated, we want to help!!!
We are praying every day for a complete miracle and we are committed to hang in there with you. Please know you are in our hearts!
Much love,
The Marshalls :o)

Anonymous said...

Susan, it was so good to see you and your family the other day, even if it was ever so briefly. We are continually lifting up little Sarah in our prayers, as well as strenth for your family as you go through this major trial. The Lord will see you through!!! I'm happy to help in any small way I can.
Love to you and your family from The Reif Family

Anonymous said...

Praying for all of you always.
The Jim Turner family

Anonymous said...

Susan and Family! Glad to hear Sarah is doing better! Much thoughts and prayers toward you all!
God bless!

Ray said...

Ben, Susan and family,

You are all an inspiration and testimony to what the Lord can do through his own when they stay focused on Him. We pray for everyone with special prayers for little Sarah. We hope that the nice spring weather will bring some cheer to everyone!!
The Perron's