+238, October 15

We have been out of the hospital for a little bit now. We got the blood infection under control with a lot of IV antibiotics. Actually, we just finished the course of medicine a day ago so it is nice to not have to hook her up every 6 hours. On top of all that, Rafi was having these episodes where she couldn’t swallow anything, including her own saliva. Everyday, we would have these episodes that could last 5 or 6 hours at a time, where Rafi would just drool. This went on for a full week. At some points, the mucus got so thick, well I don’t need to go into too much detail about that. We didn’t know if the cause of this was a stricture in her esophagus, blistering, fungal or viral. In order to try and rule things out, we scheduled an esophagram. This is where Rafi swallows some contrast and they xray as she swallows to see if the cause of this is a stricture in her esophagus. We did this yesterday and as it turns out, the past stricture seems to have gotten better and her throat has opened up a bit. This was a little surprising to us, but we’ll take it. AS it so happens, these episodes stopped three days ago, so we will take that too.

If you remember, Rafi had to have some infusions of Rituxan to get the Epstein Barr virus under control so it didn’t turn into non-hogkins lymphoma. Rituxan destroys the B cells, which are part of the immune system responsible for killing off infections. Her last infusion was August 10, and she still has no B cells and we are seeing a major difference in areas of her skin. I postulate that these B cells play an important role in skin fragility, because there are areas of her skin that are more fragile than pre-tansplant. Conversely, there are some areas of her body that look like completely normal skin. So, in order to try and help her along, we are going to have and infusion IVIG on Monday. An IVIG infusion consists of the donated B cells from 1000 people. It is very similar to getting a blood product, like red cells or platelets. The hope is that these B cells can help Rafi fight off any infections for a period of time, until her new, thanks to the parents of a little german girl who donated their umbilical cord blood, B cells can come back. In general, after Rituxan, it takes about 6 months for those ever important B cells to populate the body.

It is important to say with all this in mind, that all of Rafi’s cells that she produces are of donor origin. Meaning the transplant has worked for her. The chance of her losing the transplant at this juncture is very low. At the last skin biopsies, the skin chimerism showed 20% donor cells in the skin. This is still great news. We know that after a little Rafi will be back to where she was a few months after transplant. The Rituxan set us back 6 months, but we always knew for every 2 steps forward there could be 3 or 4 steps backwards.

For those that don’t know, you don’t always take steps forward when going through a stem cell transplant. Unfortunately, on October 11, Anabella Ringgold, an incredibly cute one year old, lost her battle with EB from complications stemming from the transplant. She was patient number 11 in the trial, and the third casualty. We have become very friendly with her family as they have gone through the procedure, and we feel just horrible for them. Tim, Bella’s dad, continues to find the silver lining in everything, including this tragedy. We wish them the utmost luck and courage in dealing with their loss and in trying to get back to life without their darling daughter.

This past weekend, we had some friends in from New York City with their little girl, Lillie Ann. Lillie and Rafi were in the same playgroup back home and we have become very close to her parents, Julia and Ben, over time. They drove out from New York, 1200 miles one way, to spend some time here. It was great to see them and for Rafi to play with Lillie for a few days. When they had to jump in their car for the long journey home, Lillie and Rafi broke down in tears and had temper tantrums because they didn’t want to be separated. I can honestly say that it was incredibly nice to witness a temper tantrum. This will be the only time you ever hear me say that. Now next weekend, Jackie’s father and sister will be here and I know that will make Rafi very happy.

Ok, I really have to catch up on some work now. I will absolutely post more frequently, I am sorry that my laziness has made so many worry so much. Furthermore, I will post some pictures of Rafi and her buddy, Lille Ann.

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