Wednesday, June 17, 2009
At least, I think it's the 17th. I'm pretty sure it's Wednesday right now also.
We found out yesterday part of the biopsy results. "There was an absence of collagen VII in the immunomapping..." Dr. Metz rambled on. "Collagen VII connects the dermis to the epidermis," she went on to say. "This indicates that Bella has the Dystrophic form of EB."
My heart just dropped into my gut and my arms got cold.
"They weren't able to determine subtype do to some [blah blah blah] so they are redoing the second test and I'll let you know what it is either when I see you next Tuesday or before."
So, now the hunt for the next clinical trial of bone marrow stem cells takes place. In the mean time, there is another piece of the story that unfolded so fast, that I still am unsure it even happened.
As I sat in the dentist office two days ago awaiting an emergency crown, I called my friend Joe Polish, a close friend and marketing guru, to vent a little. Joe realized he was in over his head, that he had never been through anything like this, so he said, "I'm gonna put you in touch with someone who can better talk to you right now. His name is Sean Stephenson. I interviewed him recently and we've become great friends. Sean has a rare bone disease that left him with 200 fractures by the time he was 18. He's 3 feet tall. He's now a motivational speaker and Psychologist. Can you hold? I'll try to 3-way him in on the call."
As the nurse stands in the doorway waiting for me, I am introduced to Sean by Joe during taping of an A&E special they are doing on him right now. Sean gives me his cell number and says, "Any friend of Joe's is a friend of mine, and if there's anything I can do to bring peace, I will."
3 hours later, I come home from the dentist and hunker down for another long mostly sleepless night with a colicky baby wrapped in bandages.
The next morning (yesterday), I get a text from Joe "Did you call Sean?" I hadn't. It's too tough to make a single phone call right now at night. So, I call Sean on the way home from dropping Ali off at daycare.
We spend the next 45 minutes in an extraordinary conversation about what is at stake, who to BE in the face of this, and what there is to do. Sean says, "Don't listen to the Doctors, I was supposed to only live 24 hours." He follows with, "The only prognosis I listen to is the one I like!!" At this point, I still don't even know Sean's last name, when Joe said it, it went right by. I just had a hand scribbled name "Sean" and a phone number to call. Sean tells me that he wants to put me in touch with his Doctor, a microbiologist by the name of Robert Young. Sean started seeing Dr. Young about 5 years ago, and he hasn't broken a bone since. Not bad for someone who broke over 200 during the first 18 years of life. Sean said he'd let me go so he could call Dr. Young for me. A minute later, (10:04 to be exact) Sean calls back and says, "Dr. young is in London right now, but he said if you call him at this number in exactly 30 minutes, he will take your call."
It was during that 30 minute wait that Dr. Metz called me with the bad news. Without getting dramatic about it, we were hoping maybe Bella had the simplex version of EB which should could most likely grow out of. If it turns out to be Recessive Dystrophic EB (RDEB), it is fatal with subjects dying from malnutrition due to the erosion of the esophagus, infection from open wounds and/or resistance to antibiotics, or an aggressive skin cancer that usually comes in during adolescence. Most RDEB kids to live to adulthood.
So, at 10:34, I call the number and a man picks up the phone. It's Dr. Young. I explain who I am and he asks me to tell him what's going on with my daughter. Dr. Young is clearly a renegade. Within the first two sentences, he says, "Don't listen to the doctors. They don't have a clue. Here's what you need to do, you need to strengthen your daughter's blood. You strengthen her blood you strengthen her skin. Mom needs lots of green juices and get off sugar. Sugar is poison."
He then goes on to give me specific sprays he produces that he says will help Bella's mouth and skin be more blister resistant. He would like to see her blood tests results and any panels that have been done.
10:48. What just happened?
Yesterday Ang and I were faced with doing Bella's wound care all by ourselves. Bella was awake and crabby, and we just didn't know how we were going to pull it off, but we were literally running out of time before we had to go pick up Ali so we just went for it. Well, all I can say is that Bella is freakishly strong, and not just muscularly, but constitutionally. She was a trooper. I also want to publicly thank the angel that was in the room with us. I don't who it was, but Ang and I were not alone, and Bella was somehow calm and soothed the whole time. (She went right back to screaming her head off 5 minutes later). At the end of the procedure, I felt closer to Angelique than ever before.
Total time of procedure? 50 minutes.
So, in all this there is ups and downs, Bella sleeps all morning while we run around trying to keep the house/ laundry / bills / paperwork / research / pumping / feeding up to speed, then turns at 8 pm into the most irritated, upset little girl who can't be put down for more than 5 minutes till about 4 am.
We know of the clinical trials at U of M and Stanford. There is also one at Rady's in San Diego where I interned and I am looking into that today. Now that we know the main subtype of EB, we can navigate what options there are. Really, until these bone marrow stem cell transplants occurred, all there was to do is bandage and love your kid and keep 'em as comfortable as possible for however long God intended them to be here. Now, with this new breakthrough, there is hope for a tomorrow beyond unending discomfort.
NOW, STANDING IN THE FACE OF ALL THAT, I SAY WILL YOU PRAY WITH ME?
One day, Bella will look back and say, "Yeah, when I was born, I had this rare skin condition, but when they took me home from the hospital, it went away."
The body IS a miracle. It does miraculous things every day. It defies "the experts" every day. God has the power to produce all the collagen VII God wants. It is to be His will. Sean told me yesterday, "Pray for a miracle. You HAVE TO CHART A COURSE. God may come and adjust the winds on you, but you HAVE to at least CHART the course."
Thank you all for helping my family "CHART THE COURSE."