In the Name of Luck

One phone call can change everything. Our free day exploring the lovely city of Duesseldorf went up in smoke after Dr. T called to say she had gone over Kairit's MRI very carefully in preparation for Wednesday's procedure. She assured us that we did not need to be stressed but did want us to return to the clinic for another consultation.

One of the things that struck me about the X-Cell Center is how differently it operates from a doctor's office or clinic in the United States. You don't have to go through a number of secretaries or front office people behind closed walls with often-closed windows. There are nurses in the hospital area but the doctor comes in herself, even to the waiting area and greets you. Dr. Tamaschke invited us into her office but not before asking us if we wanted any water or juice.

It seems that Kairit has a sort of "sling" in the area near where the occipital implantation was to take place -- basically an obstruction that made it too risky to implant there. So we were back to either a lumbar puncture or a new option that was offered to her. Kairit did not need to make an immediate decision but a timely one was necessary. Dr. T said Kairit could undergo stem cell implantation via neuroendoscopy. This is a surgery requiring anesthesia and a hospital stay for 48 hours. Dr. T. has done over 600 of such operations during the last 10 years, many on children.

Needless to say, the thought of brain surgery can take one's breath away. However, as Kairit, Anto and I processed the explanation of the procedure and the potential of the help it might bring, we decided a leap of faith is sometimes needed in the face of dire circumstances. I asked Kairit how she felt after the doctor left us alone for awhile so Kairit could ponder her decision. She said now that she was here and despite the extra cost (an additional 10,000 euros) she wanted to try the newest procedure with results that have shown to be promising. No one said this was a cure but patients had shown improvement and could do stem cell treatment again. Perhaps in a year, new research would show even more promise.

When the doctor returned later, Kairit gave her the thumbs up. We then met a charming anesthesiologist who went through an intensive questionnaire with Kairit who had never had any surgery previously. He told her what to expect tomorrow and gave her the routine instructions prior to anyone having anesthesia. He promised me he would take good care of my niece.

Next, the driver took us to another facility nearby where Kairit was filmed as her walking and balancing abilities were tested. She also had to fill in a form asking many questions about the use of her hands, legs, etc. By this time Kairit was worn out physically and emotionally. Khalid Sousi, the physiotherapy specialist, showed us a film of a Norwegian man about 45 years of age who also had ALS and underwent the same procedure that Kairit is now scheduled to have. In the before footage, the man could not walk well and needed to hold the handrails. In the after (6 days later) he was walking much better without the use of the rails. Kairit was asked to return paperwork with the same questions and a film of her condition six months later if she were unable to return to Germany for the follow-up.

Just before the driver came to pick us up and return us to the hotel, Khalid asked if we knew the meaning of Kairit's name in Arabic. We did not. He said, "In Arabic, Kairit means lucky." I nodded, "From your lips to God's ears!"