Wednesday, January 7, 2009

01-07-09: Sarah Home Again

A lot has happened since our last post. I'll try to recap as accurately as possible. Sarah spent most of December in the hospital due to fevers and neutropenia and the high blood pressure. But thankfully we have been home with her since January 3.

We finally got the results of her first PCR-ABL (the test for molecular remission). It was negative. Woo hoo! Nobody expected that. Of course we were praying for it. We are currently waiting on the results of a second PCR-ABL intended to check her status at the end of induction. We should know about this one early next week.

Sarah is getting TPN at home. That takes some of the pressure off us for her nutritional needs. She just wasn't able to eat enough to maintain her weight. We have also restarted her on Marinol to get some food in. For those who don't know the Marinol is a synthetic THC intended for medicinal use. The stuff has worked great for Sarah in the past and we are hoping it will work it's magic again to put on some weight before her second BMT.

Great news on the encephalopathy. Sarah has mostly recovered and she seems to be almost 100% herself again (except for the chemo crud).

We took Sarah outside to play in the snow and the Pink Playhouse. She and Christopher laughed and giggled as they were pulled around the yard in the sled. They also had a great time going in and out of the playhouse doors. It didn't take long to use up all her energy though and then she was ready to come in and warm up by the wood stove.

Ben and I are both somewhat stressed. I am having moments of extreme anxiety and moments of peace. I have been tempted to go ahead and fall apart but I think falling apart is over rated. No, don't need to do that. It helps knowing that we serve a loving God who is walking through this trial with us. We are again learning to live in the moment. To enjoy the sweetness of right now and sometimes endure the anxiety until it is replaced by another feeling. It also helps having your Mom close by, like in the same room. :-)

My Dad and sister left a couple of weeks ago but my Mom stayed with us. We are so glad she did since Sarah had to go back to the hospital right away. My Mom has managed all of our children wonderfully. I am so amazed at her endurance and ability to cope. Mom has been a blessing to us all and she has had a calming influence in our home. We are so thankful for her support and care. Thanks Mom.


Anonymous said...

It was so wonderful to see your update, and hear that God is continuing to bless your family in such wonderful ways. The new year has begun on a bright note, which is always good! Knowing Marie,as I do, I am sure she has been your "rock of Gibraltar", and there is no where else on earth she would rather be right now, than there with you and your family.

I pray God continues to bless each of you, and may He grace you, Susan, with the strength and knowledge you need each day to meet those tasks before you, and with peace and understanding so that you may sleep well each night in preperation for each new day ahead, with its own challenges.

I love you!
Kay your NC cousin

Anonymous said...

We continued to be blessed by God's graciousness to your family! I think you are completely normal for having the anxiety/peace thing going, look what happened to Elijah after his big show down! :)
We continue to lift you all up and I am glad to hear that your mom is able to stay and support you all. Yay, Jones Team!
We love you and miss you,
The Holbeins in NC