+287, December 3 – Time to Go Back to NY

Wow it has been a long time since I wrote anything. I keep telling myself I have to be better about this. I am sorry but it has been busy around here. Since I last wrote anything, we’ve sold our New York apartment, rented a new one, sold our car, and leased a new one for the drive home. Yes, we are headed home to New York City in two weeks time. It will be nice to be back in New York amongst friends and family and away from this cold, cold weather. There are certainly things that we will miss about Minneapolis, but we won’t miss a high of 9 degrees in the first week of December.

Rafi has gone through a tough stretch but we are hopefully beyond that and into a healing mode. Of course, the very powerful antibiotics she is now on will certainly help. She continues to be her own worst enemy by literally scratching herself until she bleeds. Her skin is still very fragile in areas and of course she knows those areas well. With new open wounds come infections and with a still forming immune system (minus the B cells thanks to rituximab) she has a tough time fighting off the bacteria. We always know what is coming down the pike when she wakes up sweating. It is always a portent for higher fevers during the day. With that in mind, we were very proactive in getting enough medical justification together for the $1,000 antibiotic, Zyvox. Insurance just loves cutting a check for that one, but they always do, albeit kicking and screaming. I think we’ve beaten them into submission, because we didn’t even get a request for justification this time. I love that we’ve gotten the insurance company into a state of learned helplessness.

So, Rafi’s temperature curve was slowly on the rise until one day she spiked a 101.6 fever. Thankfully Tylenol took care of that and the next day she had a 100.4 while on Tylenol. That’s the day we started the antibiotic and she hasn’t had a fever since. Her self inflicted wounds are starting to look better, except those on her feet. The poor little one just has fragile feet. We hope over time enough collagen VII will build up down there.

Yesterday we had our final appointment in Minneapolis with Dr. Tolar. He considers Rafi’s transplant a success as we have evidence of collagen VII where there once was none and evidence of anchoring fibrils where there once was none. Rafi’s internal organs are all functioning very well, and she is actually growing for the first time in over a year. We have a lot to be thankful for, mostly for having such a strong kid. Rafi will certainly end up being one of the success stories from this trial. It’s amazing to me the events that have happened since Rafi was born with regards to this transplant. I remember reading about the first transplant here when Rafi was still in the NICU in New York. I remember promising Jackie that I would get us here for this procedure. I remember writing a long paper to the insurance company justifying the need for them to pay for this experimental treatment. I remember getting the call from our transplant coordinator telling us that the transplant was approved and having tears roll down my face. I remember the days of chemotherapy, of the terrible effects of those drugs, of the healing, of the wonderful doctors and nurses. I remember having the fellow, now an attending, tell us that in 3 minutes time, Rafi would be intubated to save her life from pneumonia. I remember the look on the faces of all the doctors and nurses who saw the image of her lungs and you could tell they didn’t think she was going to make it. I also remember the look on all their faces when she recovered so quickly. I’ll never forget the fear and the anguish this procedure brought on my family. But in the end, I’ll never forget looking at the picture Dr. Jakub Tolar sent me that showed a bright red line at the dermal epidermal juncture, representing collagen VII, and him writing to me, I think you should have a scotch. And now, the story continues……

I will try to post more often but the next few weeks are going to be very busy. Maybe the next post will be from our new home in New York City. Same old town, new apartment. A new start for the little one.

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