JULY 19th

DAY 106

I wonder when you stop counting the days? I must ask the docs. Brendan's last marrow biopsy showed he was in remission. "Cured" is still another 5 years away. The marrow did show some dysplastic cells. Brendan's doctor thinks this is because he has immature marrow. Brendan has been at home most of the time since the 11th of July. He had a short stay in hospital due to a chest infection. The stays are shorter now due to the fact that he has a good white cell and neutrophil count. We are spending a lot of time in hospital as an outpatient. Brendan is finding it increasing difficult to be patient with the various clinics we need to attend. Yesterday he had a great tantrum which let all of the second floor know that he did not want to wait anymore and that he hated the hospital. Of course everyone around you looks at you as if your child is an alien. I really can't blame Brendan. We spend hours waiting only to be told that we can go home soon as long as we do one more thing. The one more thing becomes extended and before we know it we have been at the hospital for 5 hours.

Brendan had his hearing checked on Thursday as Richard and I were concerned that he was saying "what did you say" a lot. Brendan has lost some hearing due to radiation and chemo. He can hear vowel sounds but cannot hear many of the consonants. We are due to have more appointments with ENT specialists to do final testing and to have Brendan fitted with hearing aides. Sadly this is not uncommon for transplant children. Brendan's kidneys have also been under considerable stress. We have had extra appointments to closely monitor his blood counts. So far we have got everything under control by drastically increasing his fluid levels and reducing and stopping some of his medications.

While Brendan is still very physically fragile, he is beginning to need more mental stimulation. Our social worker and a local cancer support organisation is organising a home tutor for Brendan. It will be good for us both to start having some structure in our lives that is not medically focused. Brendan only has two more weeks left of a drug which stops him from being able to get out and about more. We both plan to go to the movies when the school holidays are over and see Kung Fu Panda together during the day. This will be the first big outing Brendan has had for a long time.

Brendan's new post transplant doctor and myself went through the letter from Sydney hospital. It describes and explains Brendan's transplant. It really is amazing what he has been through. I am glad that it is hard to remember how long Brendan was very ill for. It does not feel like 7 months of hospital care. It just feels like everything happened in another time. This year I really will be able to say "where has this year gone and is it Christmas already".

Life is slowly moving in a positive direction. Will keep in touch.

Love Anna

Kieran and Brendan at home