More news from NYC

Nov. 25-Dec.3, 2008

Nicolas was moved from ICU on the evening of Nov.25 to the 4th floor transplant unit. This was around the time of the American Thanksgiving and that night there was a dinner for parents and family, too bad both Sebastian and Nicolas were still off solids...

Our days on the ward followed a pretty regular routine. Every morning since the surgery Nicolas had an ultra sound of his abdomen, always to check for good blood flow through the veins etc. He'd started all his medications (anti rejection, anti biotics, nutrional, blood thinners) up in ICU and we are getting the hang of it. The first week is critical, but it's not going to be for many weeks before things really are determined. Nicolas' liver function tests have seemed to be in the normal range so far. A constant tweaking of medication will be par for the course.

Sebastian was discharged on Thursday, Nov. 27 and his brother Pino and girlfriend Wincy arrived to look after him at the Ronald Mcdonald House. They were able to stay for 10 days and were a huge help, doing laundry, grocery shopping, cooking and driving Sebastian and myself to and fro through NYC traffic. It was wonderful to have a bit of home here in NYC, they were great company and it was amazing that they both could take the time off to be with us.

On the home front, our other children have the whole Glebe community looking out for them. Lynn is still managing to keep her head above the water, lovely meals come most nights, Sasha's social calendar is full and Sophie's is too full (keeping up with school work is never easy). Thanks to all our friends I'm not worrying about them (too much), we try to Skype as often as we can but there's no internet access in our room. Very frustrating.

We learned this week a little more about the upcoming stem cell transplant. The schedule is that Nicolas will have surgery on Dec. 7 to have 2 separate lines put in. One will be for the collection of stem cells (they want to have what are called rescue cells)m the other line will be used for the next 3 months for all of his bloodwork, IV meds, etc. He will be given a growth factor to stimulate new blood cells to develop before the collection.

Nicolas should be admitted on Dec.14 for the week of conditioning before the transplant. He'll have an intense dose of chemo to bring his immune system down so that it will accept the new one (Sebastian's). His dad will have also been given the growth factor and his collection takes place about 5 days before the transplant. If all goes to schedule Sebastian will be heading home to be with the other kids.

Unfortunately Nicolas will have to stay in hospital for a period of 30 days, without being able to leave his room. His immune system will be very compromised. When he heard this, he was naturally very upset, but in the meantime he's become more familiar with the idea and I think he'll be ok. At that point he'll be up in Oncology and the nurses and doctors are amazing there, they really make the patients a part of their family. Actually all the nurses, doctors, support people are great, but up in Oncology the nurses don't rotate as much and they really get to now the patients and families.

After the 30 days, Nicolas will have to stay in the New York area for an additional 2 months. We're looking into places for the months of February and March, big enough for the whole family to come down for extended visits. So I'm putting the word out, if anyone knows about apartments/houses in NYC (preferably) or within an hour drive of the hospital, I'd love to hear about it.

Lots of love and big hellos form the Big Apple, Kathrin, Nicolas and Sebastian!