June 22,23,2010: Days -10 & -9

First of all, I apologize for not posting last night. It was a late one.

Here is yesterday's summary, followed by today's:

June 22, 2010: Admission time!

Well the day finally arrived. It was a day full of anticipation, both excited and anxious. In the air hung the hope for a better future for not only Bella, but all kids with Epidermolysis Bullosa, and the fear of the path required to get there.

We were to arrive at Admissions at 11:00 am, which remarkably we actually did. Suitcases in tow, we did the paperwork, and headed up to the now famous "5D". Unit 5D in the hospital is reserved for pediatric BMT, and where our previous 11 fellow pioneers found themselves. We have read about 5D since the fall when we started following online posts from patient number 7's mom. Now, it was our turn.

After a relatively short while, we were informed that we had a "pass" and could leave the hospital till 8pm. That was a bit weird. Why show up at 11am, then? Oh well, I thought it was a treat! We went back to RMH, had lunch, and Bella and I took a good nap. Little did I realize how much I'd need it... more on that soon.

We went out to Punch Pizza just up the street, which was highly recommended to me by my friend Logan. Being the pizza-holic that I am, I decided this would be a perfect "last meal" on the outside. So, we set off for Punch. It is a really cool little restaurant that wood-fires your pizza at 800 degrees for roughly 90 seconds. What you end up with is a deliciously fresh pie. The decor in the restaurant is pretty cool; they have giant garage doors that open to the street. Since the weather was quite warm, the doors were open and we were treated to all the traffic noise one could take. However, the doors being open presented one of the best Providence stories to date:

Picture this: we are sitting in a booth about 6 booths in from the street, so we are pretty far into the restaurant. In fact, there is only one other booth behind us before you reach the back of the room. Toward the end of our meal, as I look out the open garage bay, I spy a butterfly. Remember, butterflies are the symbol for EB since the fragility of EB kids' skin has been compared to the delicate nature of a butterfly's wing. Anyhow, I watch this butterfly fly into the restaurant and down the aisle straight toward Bella. Bella is sitting in the aisle in her stroller, facing us. The butterfly flies right up to Bella's stroller, then does a 180 degree turn and flies back to the entrance of the restaurant. Then, it turns around, flies back in again to Bella, turns around, and then flies back to the sidewalk. By this time I am flipping out and manage to get Ang to grab the camera to try to take a picture, because the butterfly then turns around and flies back to Bella A THIRD TIME and lands at the foot of her stroller. It lands so close, Bella practically rolls over it with her wheel. Once Ang takes a picture, the butterfly flies back down the aisle, and this time flies right out the door and on its merry way.

Did the butterfly know that just hours earlier I was hanging a butterfly above Bella's crib in her hospital room to help brighten the room and have him watch over her?

Remember, God is in the whispers. He whispered 3 times the same thing he always whispers, "I got you, I got you, I got you."

I never get tired of hearing it. I'm grateful that I remember to listen.

Bella went down quietly and peacefully at 9pm with her evening bottle. However, we still hadn't changed her Hickman dressing. Up till then this had been quite painful for her. Sure enough, she woke up, and would NOT go back to sleep. It was 1:15 this morning when she finally collapsed. Hence no update. She screamed all the way till then. A rough ending, but a great day.

June 23: Day-9:

For those who don't know, we are part of a 100 day clinical trial. Those 100 days are from the day of transplant, which is called Day 0. Any days in chemo leading up to transplantation are like a count-down. So, tomorrow will be Day -8, the Day -7, etc.

Today, Bella began her chemotherapy. It was so exciting, I slept right through it. Seriously, it was just another tube added to her giant pole of meds and fluids at exactly 4am. No need to get up, so I didn't. She began what will be 4 days of a drug called busulfan. It's a nasty, toxic poison that will kill off a good chunk of her bone marrow. The idea is that the busulfan "moves out" the existing tenant, namely Bella's bone marrow, to make room for a new tenant, Ali's marrow. It's a bit more like a forcible eviction, and the eviction began today. No side effects today, thankfully, but they're coming. Actually, we had to sedate Bella tonight to get her to sleep. She was screaming uncontrollably again and was simply inconsolable. I couldn't even hold her she was writhed around violently in her crib. As I watched her sobbing and yelling, I thought, "So this is what it looks like when you poison your own kid on purpose." No lie folks, this is a dark tunnel to have to go down in order to get to the light, and the process is damn near barbaric, but it's all we got. This is why I hope that this research can somehow spawn new research into less invasive ways to treat and cure EB.

It's gonna be a long walk in this little room. Look at the pictures and you can see Bella already feeling a little trapped in her crib. I thank God that she won't have any conscious memory of this little stroll in Minnesota.

At the start of the day...

By lunch time...

By dinner time...

At the end of the day...

Don't worry. It's not all gloom and doom. I'm just tired. Tomorrow I'll make sure to tell you about all the amazing staff and resources that have been simply pouring in since Monday. Thank you as well for all the prayers, intention, positive thoughts, vibes, wishes, and comments. They make us feel like you are right here with us. We are a long way from home, but we don't feel a long way from you. I take you with me through the day. With each new comment, my phone vibrates and gives me a little inspirational cup of water to keep me running through the day on this marathon. Thanks for all the cups of water. They mean a lot. God bless you.