Update

Phew! Almost three weeks in the hospital- in an isolation room, with the exception of
about twenty minutes each day- and she did it! SO excited to be going home... not as excited to be
going home with an iv pole. Liz never gives up. Ever.

I had a few little cries over the three weeks we were away, but nothing like the tears that started as
I came around the corner of our street and saw this. A "heart attack", put together with a lot of love and a lot of effort.
Each heart had a message written on it from a friend of mine or a friend of Elizabeth's. The time it must have taken to attach each heart to a stake and put it into the grass (especially difficult, as we are letting our grass die in preparation for landscaping).
I started crying and didn't stop for hours. The love and support is amazing and this act, well, there are no words.
Alana, and all of you who spent time on this, I hope that you know how much this lifted our spirits. We know we are cared for, but as we watch "normal" go on for those around us, it begins to feel a little lonely. To know that we are so supported is more than you can imagine.


I promise to write a much longer post tomorrow, but I am exhausted tonight. I want to just update a few things:
Liz was discharged from the hospital at 2:00pm on Friday and we rushed home to meet with the Home Health nurse, so that she could train me on the IV pump I use each night to run Liz's TPN and lipids. Once she left, we rushed to pack for the special event that was being held for Liz and a new friend, Maryam. Camp Hollywood was amazing and I cannot wait to post pictures and tell you about it!
Camp Hollywood ran from 6:00pm Friday- noon on Saturday. Sunday my sister Megan and her family came over so that the kids could see Liz. Liz had been complaining of pain of her PICC line arm and I was a bit concerned, but knowing how active she had been over the past two days, I thought it could be muscular. By early evening, though, she had a raised temperature, and I knew I needed to call the doctors. Both MD's instructed me to head to the ER. Blah!! So much for normal.
We were at the hospital last night from 7:00pm-3:00am. An ultrasound showed no blood clot and an xray showed her line was in place. Usually, a patient may be given an antibiotic while we wait the two days for the blood culture to come back, which will let us know if there is infection or not. Because Liz gets CDiff when she is on an antibiotic, the docs elected not to do this. We should hear back tomorrow. The Clinical Nurse Specialist who specializes in PICC's thinks that Liz has something starting in the line and that we may need to take it out and place a new one. Sigh.
Last night, Liz's labs showed that her counts were pretty low- not good. It has been a while since they were so low and having all three cell lines like this makes me uncomfortable. The home hospital nurse was already scheduled to come today to draw her weekly labs, so her doctors had the nurse draw even though she'd just had labs last night. This will either confirm that her counts are indeed so low, or they will be higher and we'll know her blood drawn last night was diluted. If her counts are truly so low, Hem/Onc will decide if they want to do the bone marrow aspiration now.
Tomorrow we have a six hour day at the hospital while Liz gets her IVIg.
That all sounds pretty negative...and it is. Life is hard; really hard now. BUT, I want to end this post on a positive note...
you can only imagine how strong Elizabeth is. I had no choice but to hang in there and keep going over the last three weeks because of Liz's example. She never gives up, never stops believing that she will be fully well, and trusts what she knows is true and even things she doesn't. She is more than I could ever be and I am so proud of her.
Courageous, brave, hopeful, praying, enduring, Elizabeth Claire.