Friday, August 22, 2008

Day +28: Hospital Release is Imminent

Sarah's Blood Count's Today

It’s been a while since the last update, so I’ll do the best I can to fill you in without making the post too big.

The good news first:
Sarah’s blood counts are super. Sarah’s new bone marrow engrafted around Aug. 15, Day 21 (see graph at top of posting). They’ve steadily increased since then. Her ANC is ~1,760 and her WBC is 2,660 today. This is about what she registered when she was admitted on 7/18.

Sarah got to go outside yesterday. There’s a little park like garden at the hospital. Susan and a nurse took Sarah for a walk and to play there. The nurse had to come because Sarah’s morphine is continuously pumped through her central line.

Starting today, Sarah will no longer be on any continuous (24 hour) drugs or medication. That means she can be unhooked from the pumps for a short time each day. For Sarah (and everybody else) that’s a big deal. Sarah was really excited and clapped her hands when she heard that. I felt like doing it too. The next time the kids come down to visit will be the first time our family has been together since admission (5 weeks). It will only be for a few hours, but it will be the beginning of feeling “normal” again.

Not so good news:
Sarah was diagnosed with pneumonia. Earlier this week, the doctors told Susan that Sarah should be doing better than she is this far along into the BMT. They did a CT scan of her abdomen and noticed what looked like pockets of pneumonia in her lower right lung. It was a tough day for Susan and Sarah at the hospital. The doctors immediately put her on some other antibiotics. The doctors were actually glad to find the pneumonia since they now had something to assign her mystery symptoms to (low level fever, low oxygen sats at night). The pneumonia is prolonging her stay at the hospital, but probably only for 1 week. We hope to be out of the hospital be mid-late next week. We’ll see…

It feels like a steep, rocky cliff Sarah has been climbing up since her diagnosis on May 04. The BMT has certainly been one of the more threatening parts of that cliff, but she is still climbing upward. Sarah has a long road to recovery, but we feel really good about Sarah’s engraftment and are relieved to have that part of her treatment behind her.

We are thoroughly cleaning the house in preparation for Sarah’s return home. It’s good to have lots of little hands to help scrub walls. Monday, Susan and I will begin to be trained for Sarah’s care and preparation for her release.

Thanks for all the meal support that folks have provided over the last few months. That has taken a big load off our family and given us support and comfort throughout all this. However, with Sarah coming home within a week, we will not be accepting anymore offers for meals. We are tightening down on anything that could lead to family members getting sick. The Cyclosporine Sarah will be taking for the next 6+ months is intended to keep her immune system suppressed to prevent her new bone marrow from rejecting her body or her body from rejecting it. Keeping the family from getting sick is going to be a real challenge.

Please pray that Sarah will come home next week, that we’ll be prepared for her return and that no one in the family gets ill for the next 6+ months (I know that’s a big one to ask, but just do it).

Judah and Michael Cleaning for Sarah


Anonymous said...

Susan, it was great to see you and Asa at the RMH Tuesday night. Michelle enjoyed your discussions and the time to hold Asa.
I am so glad that you and Sarah got a chance to enjoy the garden at Children's. Isn't it beautiful?
It was Michelle's favorite place to be while recovering from transplant. We used to do as much of her physical therapy out there as we could. All the little treasures hidden amongst the plantings are fun to come across. I think there should be a little I-Spy or Treasure Hunt game for the kids to play while they are in the garden; there is so much to find. (Did you see the beautiful manhole covers? That was something I never expected to see... an attractive, interesting manhole cover! HaHa!)
If you are still at Children's on Tuesday, maybe we can go for a walk in the garden after Michelle's infusion. She could show Sarah some of the things she found there.
We are praying every day for Sarah's speedy return home and return to good health.
Hoping to see you again soon,

Anonymous said...

Ben and Susan, I ordered Sarah a hand puppet that I had hoped she would have had by now. I wanted one with a large easy mouth like Ella had when she was little. I had to order it from England and the mouth is still small and not easy to use. I have been hesistant about sending even cards while Sarah was receiving radiation for her BMT and then afterwards because of germs. We have continued praying daily for Sarah's recovery and for all of you to have the strength to face all you are going through. The churches in our area and our friends and people we know at the college where I teach and the college Ella attends are all praying for Sarah and your family. We keep up with your blogs and pray specifically for what you ask also. I keep Sammie in California informed, she doesn't have internet. I sent Rebecca your website info back at the very beginning. I know you have so much to read with responses and so much to do I haven't sent anything even on the blog. Our prayers and thoughts are with you each day. The news of Sarah hopefully coming home next week is wonderful. Ruth and Ella and David

Anonymous said...

Ben and Susan,

I am so happy to hear that Sarah is doing well enough to come home soon! Mother is coming over tomorrow for Daniel's birthday after her class is over. We will plan to call you guys on the webcam picture/phone at 7 p.m. CST. We will continue to pray...and thank God for answered prayers! - smile - XOXOXO
Love to All!

Your Sister, Dauphne

Anonymous said...

Wonderful news for Sarah. Ben-Susan I am so glad to read Sarah is responding well and will go home soon. Since I heard about this I have had you all in my prayers and thoughts. I will continue to do so after all of you are home and until we have word of full and complete wellness. In my eyes you have a very courageous little girl and family. Stay in faith.
Love from Rebecca and family.