They are admitting Bella into the hospital for her stem cell transplant next Tuesday, June 22. They will start her immediately on an anti-seizure drug called keppra, then begin busulfan on Wednesday. One of the possible side effects of busulfan is seizures, so the keppra will be good and flowin' in her system already when the busulfan arrives.
Bella's transplant date is set for July 2nd.
I will go into greater detail as we roll through each day. Now we have a timeline. We can all start to focus our intentions and prayers into time.
We finished a barrage of tests and labs today. Ali was a CHAMP this morning. A steady combination of benedryl, lydocaine, Barbi DVD, and mommy kept Ali as relaxed as we needed her to finally get her labs done.
Bella was a champ through her CT scan, chest x-ray, and Echocardiagram as well! She is just so sweet. She is charming everyone that works with her.
Unfortunately, her Hickman Line is not working properly and has become a little bit of a pain in the ass, pardon my french. It is really difficult to draw blood from it. They can fluch liquids into it just fine, but pulling the good red stuff out... that's another matter. Seems that it is a pretty big line in a pretty small kid, so it is probably resting up against the wall of the vein.
However, the pouch that holds the line is AWESOME! you cannot see any of the line exposed when not in use. That makes my anxiety nice and LOW.
Bandage changes went really well today, except that we can't get the Hickman wet. So, back to sponge baths. Boooo! We brought her super cute inflatable tub and we got all of one use from it before it has been relegated to unfit for use. Waaahh! Love that little tub. Bella greatly prefers bath time these days over lying on her back time. Oh well. Life is change, life is change.
Ali starred in her first musical today! The kids at RMH had a 3 day drama camp that culminated in them putting on excerpts from "Annie." Oh man, it was CUTE! We were proud parents as we watched her first dramatic production! She does it at home almost every day, so why not in front of strangers?
Tomorrow, we (I) move (us) into our new suite! It is basically an apartment. There is a main living room that has a pullout couch and a glider, a dining area/table and small kitchenette. Then, the bed room has a built in desk, two queen sized beds and built in bunk beds with TONS of closet space and storage! I'll get some pics up once we're moved in.
We got our "Parent Handbook" on BMT today. Woof. It's a textbook. We got a lot of reading to do. Luckily, thanks to Marybeth Sheridan and Brett Kopelan, we have followed closely two of the recent BMT patients with Epidermolysis Bullosa over the internet, so we feel like we have a sense of what is to come. When they sat me down and explained the entire procedure today, I felt like most of it was review from reading it on the net. Now it is time to internalize it.
Onward we go! Thanks for being here with us. Please, keep the comments coming. Even just a "Hi, we're here with you." is really all we want to know. The biggest drawback of using a public site like this is that while we can track that over 200 people come to Bella's blog every week, we don't know who 99% of them are. That makes us sad, because it's the personal relationships through a few sentences that keep us going, and when we get 0-5 comments when 200 or more read the post, well, we just miss hearing from you, too! you just hear from me, now we'd like to hear from you! Let's see just how many people we can get to comment on one post. C'mon! Chime in! Hook us up!
Love and Gratitude.
