Thursday, March 19, 2009

Clinical Trial?

We brought Sarah home from the hospital yesterday afternoon. She was so adorable as we were leaving, hugging and kissing all of her nurses goodbye. Sarah is a precious little girl and has won many hearts with her sweet disposition. Bringing her home was bitterweet. We want so much for her to be at home but at home and well. Sarah came home with a fever and blasts in her blood. The fevers are worrisome in a big way because her white cell count is so low; for example, she is at 0.3. And the blasts are... just bad!

We called to someone at the NIH in Maryland about a clinical trial and had Sarah's blood sent to them to see if she would qualify. We should know by Monday. It is very hard to accept that modern medicine has nothing more to offer Sarah other than a Phase 1 clinical trial. Not a place you want to be with your precious baby. Ben definitely wants to take Sarah to a clinical trial if she qualifies. Although, it goes against everything inside of me to accept an end to Sarah's treatment, I am not sure I can agree to a clinical trial. On the flip side of that, I desperately want for her to be well and would travel to the ends of the earth if I knew we could cure her. We'll see how God works things out for her. Praying on this.

If Sarah does qualify for a clinical trial, and we do move forward with that, and if by some miracle she is able to go for another BMT we are going to set up a charitable fund of some sort to help these expenses. A number of people have asked if they can help us in this way and up until now we haven't needed it, but if Sarah is able to receive continued treatment we are definitely going to.

Sarah's VNA will be coming tomorrow morning to draw labs. If Sarah needs to be transfused we'll be at Dartmouth most of the afternoon.

I know that Sarah's Circle gets a lot of hits every day but we don't know who is reading the updates. It would really encourage us if you would leave us a note and let us know you are praying or thinking of us.

Susan

9 comments:

Elena Marshall said...

Oh Susan, we are praying like crazy! I cannot imagine what you are feeling, and I cannot imagine the weight both you and Ben are feeling. But, I do know that God is right there with you, and He KNOWS how you feel. And He loves Sarah, and He wants what's best for her too. Please know I think of you every minute of every day, and we will do whatever we can to help you all get through this.

Praying for all of you, and Praising God for the blessing of Sarah's smile,
The Marshalls

Peter said...

Dear Ben and Susan,
We are praying for you and Sarah daily and really appreciate the updates you post on the blog. I check it most everyday.
We pray that God gives you wisdom and that you can sense His presence in this and His love for you and Sarah.
Cindy and Peter Denio

Anonymous said...

Dear Susan,
I want you to know that we are all praying, too! I can't imagine what you all are feeling right now, but I want you to know that you are in our constant prayers! Please know that if you need help, let me know. I also talked to Cindy and she said that she has a cover up for me, so even if you need my while I'm on call, I am here for you, so don't hestitate to call me.

Praying that God will give you both the wisdom, dirrection, stength and comfort that you need through this time,
SamanthaL

-Please give Sarah a big hug for me and tell her I said "hi"!

Maria said...

Susan & Ben and family,
I think of Sarah and you all often throughout the day and keep lifting you all up weekly at church and then at Bible study. We pray for you all and hug each other a little tighter after reading some of your posts. I don't know how I would feel in your position, except conflicted.
We will continue to pray and lift you all up.
Maria H

Kay Phillips said...

Susan and Ben
Not only is my entire family and I praying for Sarah, but all of our church and a vast number of prayer warriors all over the world. God is definately in control.

I check serveral times a day to see if an update has been posted.
Kiss Sarah for me and tell her that her NC cousin thinks she is really special and loves her very much.

Love
Kay

kelly said...

just wanted you to know that i pray and think of your family daily i love you susan your cousn kelly

Rich said...

Susan and Ben,

I read your post and check it several times a day. Sarah is in my thoughts and prayers several times a day.....I know your story all too well myself.

Rich Lanigan

Aunt Maria said...

Hi Susan, it's your aunt Maria. I'm thinking about you all and hoping you get the answers you need. I think I've been spreading the word to others that I know in other states to share in the prayer times. There's Cledia who now lives in Ashland, TN who has passed it around in the Nashville area. Stephanie has been sharing it with the Navy wives and families around Norfolk, VA. Your family is in a lot of hearts and prayers go out to you. Love you, Maria

Dennis said...

Susan and Ben-

Shena and I have been following along here in San Francisco. The stories you and Ben have shared show how amazing Sarah is. Sarah and the whole family are in our thoughts daily.

-dennis.