September 28: Day +88

Heaveno!

Well, the avastin is IN! Let me tell you how we got there...

We were still undecided this morning, even while walking to the hospital. Angelique took the day off so we could meet with the docs together and so she could be there to support Bella as well. We were waiting for some sort of signal from God (apart from the two signs we already got) saying today is the day... or not.

Well, when we walked into Bella's room, we got the sign.

It was like Groundhog Day... again.

Blood pressure was in the toilet... again.

I know.

It hit us like a ton of bricks. This has happened before, where I walk in after thinking we cracked the blood pressure code the day before, only to walk in to pressures in the toilet, and Bella having received fluid to bump up her BP through increased fluid volume.

Today was just like one of those days. Pressers were up, not down from when we left, fluid was up, not down, and pressures were still alarming.

In one sense, it really put a chink into my faith armor, but in another, it made the decision to use the drug very easy! One of the things I realized on the way to the hospital this morning was that after Thursday's miracle turnaround, I made the mistake of thinking that we wouldn't have any more setbacks, and that we wouldn't have to make any more tough decisions.

Tee hee! Silly, daddy.

So, we got to work doing a good old-fashioned, two-parent, full-body dressing change, just like old times! It was nice to really clean and preen and fuss over just about every inch of Bella. Believe it or not, I got to a point before we left home where I actually enjoyed dressing changes. Bella was peaceful during them; she was lobotomized by Baby Einstein and Mickey Mouse Clubhouse on the flat screen in mommy and daddy's room. Mommy would give Bella a bath while daddy would cut and prepare all her dressings. Then, we would get to work. It was like our little special time where we could touch, caress, and care for Bella. My favorite thing was massaging Bella with cetaphil. Normally, you can't rub her skin at all, but with all that lubrication, I could rub and massage her skin and allow her to FEEL sensations she otherwise never felt since much of her skin remained wrapped under dressings 24/7.

Arm wrestling Champion... BELLA!

Anyhow, it was nice to have the three of us reunited in this ritual again. We played Mickey Mouse Clubhouse on the DVD player so Bella could hear it while we washed and changed her bandages. At one point, she was actually sticking her foot out for mommy to massage it! Super cute.

Bella sticks her foot out, as if to say, "Oh yeah, mommy, right there!"

So, back to the bevacizumab (avastin). We spent all last night researching it, and we found that most of the side effects are from repeated use for elderly patients with cancer while also on chemotherapy. So, we decided that the single dose would not present a big enough risk. We also met with both Dr. Somani and Lund this afternoon and they agreed. They both felt it was a safe option. At the end of the conversation, there wasn't this "Alright, let's do it! Yee-ha!" attitude. The room was pretty somber. There was a realization that it is quite possible that it was pure coincidence that the one other patient recovered due to this drug. There was also the realization that this is that "out-of-the-box" option we've been searching for. What happens if it doesn't work?

However, I am reminded, yet again, of Daylon, Bella's boyfriend. I am reminded of how "out of ideas" they were with him, and how he has since not only left the ICU, but he's been discharged from the hospital!

I am reminded that God sets out cups of water for us in this marathon of life at more than one water table along the way.

I am reminded that you can drive all the way across the country at night, never seeing more than 200 feet in front of you at any given time.

One dose is all it takes...

I am reminded that God alone is in charge of this situation, and while we did our best due diligence, and while we infused the drug over 90 minutes, I laid into my guitar for Bella till my fingers were pins and needles. "I played my best for him," ran through my mind from "Little Drummer Boy" as I offered up my most sincere and heartfelt musical prayer. Would any of it be enough? Only God knows. We are in the process business, and God is in the results business. So we did every thing we knew to do to make this as safe and successful as possible, and at the end of the day, we literally left knowing that by tomorrow the drug will have most likely worked or not worked. It is now out of our hands.

Daddy rockin' the Rally Cap for Bella while offering musical support and prayer...

Again, this returns to the basic conundrum of this journey: you make decisions as if you are in control of the outcome, all the while knowing (but not always remembering) that you are not in control at all.

So, we did what we could, and by offering up your prayers, intentions, energy, thoughts, wishes, etc., you did what you could. WE ALL DID WHAT WE COULD to make today a success, and now it is up to God. I know I'll sleep (maybe not the entire night) due to the exhaustion I feel, but I just have this intense urge to bargain with God over Bella! I want to promise all kinds of things in return if he just make this drug work. I want to promise that I'll never bargain again, just like I promised last time. :) I want to lobby and advocate for Bella to God like I do to the docs, hoping my twin talent of appealing to logic and emotion will be enough to sway him into saving our daughter. Once again, I am giving my power to the drug, not God.

Bella has the most amazing big sister ever...

When we left tonight, Bella's pressures were still soft, and we tweaked her sedation a little, rolling the precedex back a little since it is the only sedation on a drip that we could easily titrate, and based on Bella's response, adjust as needed. Bella just seemed really tired, and really sedated all day. I think the weekend of withdrawals into yesterday really wore her out.

We ended up greater than -100 yesterday in fluid ins and outs, but today we'll end up just over +100. But, combined with her insensible losses, a net zero for two days minus a couple hundred mLs a day is a pace we sill be happy maintaining if we can.

Thank you for your most honest and heartfelt prayers and energy. In this present moment, please focus on one thing:

Bella's capillary leak is completely healed by tomorrow, as are her kidneys, and she begins to pee tomorrow.

Please hold this thought and none other for the next 24 hours. As a result of this true statement, the house of cards will fall and Bella's complications from BMT will all but go away. Specifically, Bella's blood pressure will return to normal, and she will begin to peeeeee!!!!

Thanks for holding this space for the next day. I am a firm believer in the energy you send out. There are enough of you, and your intensity with which you offer your love is second to none.

Bella's Fabulous Fall Socks of the Day!

Angelique and I have a nickname for us as a couple; Team Heam. Long story, but our motto/slogan is "Together, there's NOTHING we can't do!"

Well, I feel the same way about our international Team Bella. Together, there is nothing we can't do!

P.S. Angelique and I like the Bella tour idea... in a few years... So keep that vision coming as well!

P.P.S. One day, Bella will say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away.

God night.