DAY 35

Brendan has continued to struggle with fevers and feeling unwell. Over the week he will have several tests to try and find out why. He is showing signs of Graft Versus Host Disease of the skin and the gut. Tomorrow he will have his skin and bowel biopsied to check for GVHD.


Graft-versus-host disease: A complication of bone marrow transplants in which T cells in the donor bone marrow graft go on the offensive and attack the host's tissues. Graft-versus-host disease (GVHD) is seen most often in cases where the blood marrow donor is unrelated to the patient or when the donor is related to the patient but not a perfect match. There are two forms of GVHD: an early form called acute GVHD that occurs soon after the transplant when the white cells are on the rise and a late form called chronic GVHD. (http://www.medterms.com).

Brendan’s nasogastric tube became dislodged on the weekend. He was given the chance to try and eat or have the tube replaced. The fear and the thought of having the tube replaced while he was awake has been enough for him to begin eating again. He has to show on his nutrition charts that he is eating a little more every day. He is slowly increasing his food intake with foods he enjoys.

We were told today that due to Brendan’s complications we would be staying in the isolation room for another month. Brendan has also shown signs that a bone in his leg has an infection. This was detected by a bone scan. The doctors are looking for all possible sites and causes of infection. Any time Brendan has a diagnosis of another possible complication, another team of doctors gets involved. It’s becoming a bit of a joke over which specialist team hasn’t seen Brendan in the last month and a half. Every time the doctors find or suspect something, it has to be checked, biopsied, grown and looked at by a specialist. The whole process takes days.

Brendan is feeling really down at the moment. He is not his usual chatty self. He doesn’t want to talk to anyone and says he doesn’t want anything. It feels like every time we see a little bit of our old Brendan back he is hit with yet another complication.

Some good news is that Brendan’s white cell and neutrophil count continue to slowly rise. He is well on the way to engraftment.

LATER IN THE DAY

Later in the day Brendan's doctors told us that Brendan has a virus called Adenovirus.

Adenoviruses are a group of viruses that infect the membranes (tissue linings) of the respiratory tract, the eyes, the intestines, and the urinary tract. Adenoviruses account for about 10% of acute respiratory infections in children and are a frequent cause of diarrhea. http://kidshealth.org

Adenovirus has serious complications for children with suppressed immune systems. Tonight Brendan will be given an anti-viral medication. The discovery of the virus helps to explain why Brendan feels so unwell. The doctors are happy that we found the virus early on and not in a few days time when he may have been extremely ill. Tonight will be a night of little sleep, too much medication and large amounts of needing help with toileting.

Richard, Tara and Kieran all return to Sydney tomorrow. Kieran and Tara will start school at the hospital school on Thursday and Richard will stay with Brendan so I can get some much needed sleep.

I hope I have some better news soon.
Cheers from Anna