Finally Home

So I have been super slacking on my blogging this last 2 months, mostly because I have been at the hospital and haven't had my computer. But I also think that I haven't because its hard to only write bad news. Now that Lily is officially done with Delayed Intensification I'm praying for no more drama! I think that everyone in my house is ready for things to calm down and go back to whatever normal is. I don't want to dwell too much on what happened in the hospital because its still so stressful to think about, but I will give you the short version. Lily was taking an oral chemo (Thyoguinine or 6TG) in her last treatment phase and it caused her to develop a very rare but potentially serious liver disease called Veno-Occlusive Disease or VOD. Its basically where the little blood vessels inside your liver form little clots that wont allow the blood to flow properly. If the blood cant flow through it than the liver cant accept any fluid to flow through it and filter out to the rest of the body. We took her into the ER initially for dehydration and they kept her one night, gave her 24hr of IV fluid, and sent us home. The next morning her stomach was very engorged and firm so I took her back in. All the IV fluid that they had given her just resorbed into her abdomen where it was just sitting and unable to be used by the body. An ultrasound was done to confirm her VOD diagnosis. After we knew what we were dealing with her Drs had the task of doing a large fluid shift in her body. She was given a diuretic to block sodium at the bottom of the kidneys, then she was given a protein which sucks fluid into the blood vessels and then another diuretic to flush everything out. After three days of this she was able to loose over 6 lbs of water weight. Lily only had a moderate case of VOD and still doesn't have 100% normal liver function but the VOD did reverse its self and shouldn't ever be a problem again. It took about a good week in the hospital before we really started to get some positive responses form the Drs that the VOD was reversing permanently. On top of all that we also had to deal with Cdiff which is a contagious bacterial infection that you get in your gut. Most likely Lily got it from taking so many antibiotics for so long. So she was put in isolation at the hospital which means no visitors from other patients, no playroom, and if we left our room she wasn't allowed to touch anything. Fortunately her Dr. felt bad for us and said that we could do outside! That was so amazing. One of Lily's friends actually brought her a huge bag of 'Frozen' things, stickers, place mats, coloring books, and her favorite thing a singing Ana dress. She put it on for our trip outside and stood on the grass and sang to everyone at the hospital. It was so adorable.

Okay so I'm just so glad to be HOME!!! We went back to clinic yesterday and they said that she wasn't quite ready to start the next phase of treatment yet so we get a week off and I couldn't be more happy. This is going to be a week to play! We have been cooped up for so long we just want to get out and enjoy the weather!

With all the big and little complications that she has had lately we are really understanding how lucky we have been up until now. I am very hopeful that we have gotten all of our big drama out of the way now, and things will be smooth sailing from here on out. We truly appreciate all the love and support we get from all of you and I'm really hoping that my posts from now on can be fun and uplifting!