Thursday, August 20, 2009

The Port

The latest medical drama is that Amani's port doesn't seem to be working. We spent over four hours at UCSF on Monday trying to get his chemo. In the end, they had to put an iv in his hand! We had the port put in so that he wouldn't have to go through that. It was very sad - but as always, he was an excellent sport. The nurses joke about how hard it is to get him upset. We are actually on another iv chemo break until September 8th. He is weaning off the prednisone right now, and is down to only 2mg a day. He will stop completely until the 8th, and then will be on 20mg per day for 5 days, every three weeks. I have labeled the calendar in multiple colors so I won't forget which medication comes on what day and in what dose. He will remain on an antibiotic every Friday, Saturday and Sunday for many more months. He will get a CT scan in December to make sure that his treatment has worked. At that point we can start addressing the fact that the little guy isn't growing. The chemo has made him gain weight, but he really hasn't grown more than a half or quarter inch in the four months he has been home. But, that will be looked into at a later date!

Here is a photo that needs no more explanation than to say, "the boy has three sisters!" And boy did those sisters have fun with this Amani photoshoot.

Saturday, August 1, 2009


I wanted to take a moment and talk about how wonderful it has been to watch the bond forming between my boys. Jordan was the little brother but never had a brother until Amani came along. It was all girls, all the time! I expected that the boys would be good playmates when Amani got a little older - but it is already starting to happen. They really love to horse around together, ride the plasma car, run, chase, etc. This was the relationship that started out a little rocky. After Amani having me to himself for two weeks, he was not at all pleased when we got home and Jordan jumped into my lap. In fact, Amani bit Jordan our first night home. Bret and I were so sad! We were devastated that Jordan would be greeted with an angry bite after he had expressed a lot of concern about my time and attention when I was in Ethiopia. There is still a little jealousy on Amani's part, but we are making it clear that there is plenty of "mommy love" for everyone.

On the health front, we are on break from iv chemo until the 17th and we are starting to decrease the amount of prednisone he takes everyday. In about two months they will do a full body scan to determine if the LCH has responded to the treatment.

I will leave you with pictures of the brothers. They are so sweet!!!!