DAY + 9

This morning Brendan felt well enough to spend some time with the music therapist. Together they are making a music CD using a computer program. Brendan gets to make and mix some very strange sounds.

Overnight, Brendan developed a rash all over his body. This morning, his blood counts started to show signs of engraftment. If his blood counts continue to improve tomorrow, we can start getting excited that maybe his new marrow is beginning to work. Engraftment is very exciting but like all Brendan’s treatments, often, while you hope that something good is happening, there is always the possibility of serious complications around the corner. While engraftment is a very big possibility, there also is the possibility that his body will try to reject his marrow. This is called graft versus host disease (GVHD). This is a complication which can be very mild or extreme to the point where it is life threatening. Overall children who have cord blood transplants have less GVHD. We won’t now how severe his GVHD will be until he has engrafted. Every child is different.

Brendan’s ‘spaceship’ continues to grow. He now has so many pumps running that the nurses have had to add another pole. The doctors are very happy with Brendan’s progress and are amazed at his resilience. He still struggles with high fevers but even these seem to be improving. He now has IV panadol which works most of the time but unfortunately his fevers break through before the next dose is due. His fevers are very high and make him feel miserable and sick.

What is left of Brendan’s hair is beginning to fall out. He has lost his beautiful long eye lashes.

We can tell that Brendan is feeling better today. He is becoming more argumentative.

The medical staff here at the Sydney Children’s Hospital are getting to know Brendan better. They have commented several times on 2 things about Brendan. They say he is bright: Nurses laugh about how many questions Brendan asks about various procedures and how he corrects them when he feels like they are not getting some detail quite right. The doctors have also noticed. After Brendan had (accurately) answered a question put to us by a doctor about his weight (measured twice daily), the doctor commented that it was unusual for kids in treatment to remember vitals statistics such as their weight or what their temperature was at the last ‘Ob’. The other thing staff have been saying is how ‘stoic’ Brendan is. His pain tolerance is high and although he may argue and question, he doesn’t complain.

That’s our guy.

Love to all from Richard, Anna and Brendan