JULY 29TH

Brendan and I did get to Kung Fu Panda together. We went on a school day and shared the cinema with 3 other people. Afterwards we had a look at toys in Target. It was really nice to get out together and do something that was fun.

Last Friday Brendan was admitted back into hospital as he had a fever and was feeling unwell and not eating. Today is Tuesday and nothing has really improved. He has high temperatures and bad migraine headaches. Today he had another line placed into an arm vein. This is called a pic line and lasts about 6 months. Brendan has become very anxious about blood tests and has had several botched attempts at cannulas in his arms. He is finding it more and more difficult to deal with invasive tests. He is also finding it difficult when doctors tell him one thing and then change their minds and do another, or the situation changes and he needs to have tests done that were not required the day before. Everyone needs reminding that he is only 6 years old and sees the world in black and white. The pic line in his arm will elevate a lot of these problems as he can have his blood tests and be given fluids through the pic line.

The staff on the ward have been kind to us and given us a room with a view over a park, which they know I love. You can open sliding doors and let the sounds and smells of the local area into your room. It also means you have more control over the room's temperature.

For now we will wait to see what the tests results show us. Tomorrow Brendan will have a CT scan to check his body for any inflammation. It's hard to believe that less than a week ago we started talking about sending Brendan going back to school part time. That is still a little way off at the moment.

Hopefully the docs will find something soon and we can get our little man home and feeling better soon.

Love to everyone Anna

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

HOME SINCE FRIDAY

DAY 104

Brendan and I have had 4 blissful nights sleep in our own home. Friday was quite a day. It took the day to prepare us for discharge and we left the hospital with a car full of medical eqipment. Everything seems to come in huge boxes. We had a quiet but happy and healthy weekend at home. Brendan's SA grandparents came to visit and life felt more relaxed than it has for some time. Brendan has been enjoying home cooked meals and his appetite is slowly increasing. For the moment Brendan and I will visit the hospital Monday, Wednesday and Friday. Hopefully, by Friday, he will no longer require IV drugs so our visits will be shorter rather than whole days. Everyone has commented how well Brendan looks considering what he has been through. He still badly needs some meat on his bones. He looks so tiny and fragile but he does have his big shiny brown eyes back.

Tomorrow Brendan will have another bone marrow biopsy to check to see how his marrow is progressing. It will also help to tell us which cord was the one that become his marrow. It will also tell us how healthy the marrow is. Brendan has started to reduce his anti-rejection drugs. Hopefully we won't get any late rejection problems.

Brendan and I are enjoying a day at home not doing anything much. It has been a long time since we have been able to do nothing in our own home.

Cheers from Anna

DAY 100

Hooray! Brendan has made it to DAY 100. Everyone views this as an important milestone but I am still unsure as to why it is so important. Brendan and I have had 2 visits home. Our dog Rosie was very excited to see us. Home still looks like home, except our neighbours had a working bee and painted the outside of our house while we were in Sydney. It looks FANTASTIC.

Brendan will be discharged from hospital to home tomorrow. We haven't been able to talk and make plans with Brendan's doctor as he has had a cold. Tomorrow we will discuss with the doctors what happens next. I have read so much information on and about transplants but have read nothing on what happens after 100 days. I do know that from next week we will visit the outpatient clinic on Monday, Wednesday and Friday.

Brendan is in high spirits. He is chatty and very much the little boy he was before he became so ill. Tomorrow we will go home with an armful of drugs, a naso-gastric feeding pump and a wheelchair and beginning the journey to recovery.

Love to you all I will try and get some photos of Brendan with his new hair for the next blog entry.

Love from Anna