Friday, February 5, 2010

Dear Family and Friends,

We've experienced some difficulty keeping everyone current with Suzie's progress via the blog: some are unable to find the site, some are unable to log on, some have been unable to post comments and no one is aware that an event is taking place unless curiosity leads them to visit the site.

We've decided to close the blog and create a website on CaringBridge, a free, nonprofit web service that connects family and friends and facilitates their ability to share information, love and support during a serious health event. When an event takes place in our lives that is of significant joy or concern, we will update the journal on our Caring Bridge website. The beauty of CaringBridge is that they notify those who register whenever a journal update is posted. This notification will contain a link to our website, thus making it easier for us to keep you informed and for you to follow Suzie’s progress.

To register for these updates you need to visit Suzie’s website. There are two ways to accomplish this:

1. By clicking the following link

2. By visiting CaringBridge at and entering the name of our website: nanisgreatadventure

Feel free to contact CaringBridge if you have questions about using the site or if you need assistance.

We're hopeful that this process works as well for you as we envision that it will for us.

Love to all,


Thursday, January 14, 2010

The more things change the more they stay the same. Suzie continues getting stronger--she's able to get around the house by holding onto walls and furniture, using the walker only on occasion. She cooked dinner this evening and has spent a lot of time the past few days working on her crafts again, always a good sign. Ironically, GVHD is coming on strong, started this afternoon, which means that doctors will, once again, increase her prednisone. Too much prednisone, in the past, has resulted in diabetic shock, weight loss, less muscle tone, loss of energy and overall weakness. Guess that beats to much GVHD, which could begin attacking vital organs. We'll keep you posted,


Friday, January 8, 2010

Suzie's IgG was still low, 240 when it should at least measure 700, so she spent yesterday receiving another infusion of gamma globulin. Still dependent on walkers and wheel chairs but she's much stronger and more alert than at any time in December. I don't know where she finds the strength but I'm glad she's doing it!


Saturday, January 2, 2010

I've really been worried for the past month because Suzie's been unable to regain her strength and that alone was beginning to depress her. Had her blood drawn to test CBC and IgG levels on Thursday and learned that from a cancer perspective she is holding her own. Samples for IgG had to be sent out for analysis so, given the holidays, we've no idea where she stands here. Nonetheless, another miraculous recovery now appears to be underway. She was a little stronger yesterday and that trend continued into today. Last night, she got the first good night's sleep she's had in well over a month.

Many thanks to everyone because your prayers are helping!


Wednesday, December 23, 2009

We started experiencing a big turnaround this morning as Suzie started coming out of a stupor she has been in since getting home last Thursday. Long story short, the move to fight GVHD with prograf versus prednisone was the uderlying cause of her lethargyt. They started out by giving her too much prograf too soon which gave rise to many side effects, none of them good, and she exhibited most of them. Most worrisome was an increase in sugar with both the prednisone and the prograf acting as catalysts. I thought she was headed for another stay in the hospital but she's pulled out of it and will be home for Christmas. Less prograf going forward, for a while, and much hope for continued remission of the cancer.

Merry Christmas to all,


Saturday, December 19, 2009

Suzie was discharged late Thursday because we can treat the GVHD at home as well as they can in the hospital. She's tired, although less so than the day she was admitted, but glad to be here where she's a bit more comfortable. Doctors are trying a new 'cocktail' to see if they can help control the GVHD using less Prednisone. They will check her blood levels on 12/21 and again on 12/23 when we visit with her oncologist.

Semper Fi,


Wednesday, December 16, 2009

What a week! With Suzie's blood pressure stabilized and her immune system fortified, Graft versus Host decided it was its turn to mess with her. The rash appears on her scalp, face, neck, hands, legs and feet and she is suffering lots of pain and discomfort in many of her joints. Will she never get a break?