BRENDAN'S 7TH BIRTHDAY

Brendan turned 7 on Thursday August the 14th.

He celebrated with a special Chinese dinner of dumplings and pork buns and a chocolate birthday cake with his family. Brendan chose the dumplings and pork buns for his special dinner.

On Friday Brendan spent 2 hours at school. He shocked his teacher and I by standing on the stage at assembly with all the other children who had recent birthday's while the school sang happy birthday. He even said his name and age into a microphone. We then celebrated with his class with a number 7 chocolate birthday cake. On Sunday Brendan celebrated his birthday again with a chocolate castle cake with some of his Adelaide relatives.

After another hearing test and a visit to an ENT doctor it is clear that Brendan has significant hearing loss and needs hearing aides. We are waiting for a referral to Australian Hearing who will fit and supply and take care of Brendan's hearing needs. He will need hearing aides for the rest of his life as the damage done to his ears is permanent.

Brendan's blood counts have been very good this week we only need to go to the hospital for one check up. Brendan has been putting on weight and even growing a little in the last week. His stomach is a bottomless pit. After months of not eating wanting to eat all the time is taking some getting use too.

Our plan is for Brendan to attend school as much as possible. I will stay with him for a while and be there in case I am needed. When the teachers feel Brendan is ready I will leave him at school just like any other kid. Brendan needs to get back to school ASAP so that he can begin reestablishing friendships.

We are dealing with a lot of anger from Brendan at the moment he can throw a huge patty when he wants. I think that as he has energy for huge patty's we need to help him us his negative energy towards something more productive. He doesn't know where this anger is coming from. He has every right to be angry.

For now Brendan is doing well. All we can hope for is that this will continue. We expect many hiccups as Brendan's new immune system develops. Unfortunately you have to get sick to get a better immune system.

Hope everyone is well

Love Anna

HOME AGAIN

11TH AUGUST

Brendan came home on Saturday. All up we had 2 weeks in hospital. Brendan is tolerating his new milk feeds well and has energy again to chat and play. Today he is saying he is hungry and is asking for food.

His doctors are very happy with his blood counts and have suggested we start having weekly check ups. We will wait to see if this will happen. On Thursday we will have Brendan's hearing further investigated. Hopefully we will have a better idea of how damaged Brendan's hearing really is.

Brendan's doctor told us that his new marrow has the same DNA as one of the cords, which is good news as this shows that the transplant is successful and Brendan has brand new marrow. "Out with the old and dodgy" I say.

Brendan is very excited about his upcoming birthday. He is counting down the sleeps. It is lovely to hear Brendan talking about his future.

Will keep you all posted.

Love Anna

7th of August

We didn't go home as planned and are still in hospital. We are all working hard to get Brendan well enough to go home on the weekend. Brendan's diarrhea is not caused by Graft versus Host but by a nasty gastro bug called Rotavirus. On the Monday we were due to go home, Brendan looked worse, was losing what tiny amount of precious weight he had and was feeling too unwell to want to go home. The doctors put Brendan on complete gut rest and started him on TPN (Total Parenteral Nutrition). All his fats and vitamins and minerals are given to him through his vein. Thank goodness we put the Pic line in. Within 24 hours of TPN Brendan started to look better and 2 days later we are talking about getting him back on overnight milk feeds and home on the weekend.

We have been able to stop Brendan's anti rejection drugs as there is no sign of Graft Versus Host. It is great to be able to stop the drugs but he still remains on a lot of prophylactic drugs as he will remain immunosuppressed for another 6 to 12 months. We are making plans to take a birthday cake to Brendan's class next week. It has been a long time since he has seen his friends. Brendan's name has been called on the class roll everyday this year and everyday his little friends reply "Brendan's not here today". Brendan wants Mum to make a number 7 cake to share with his class mates and a castle cake with a dragon as his special cake to have with his family. All we need to do is get home so we can get busy baking. Hopefully our next bit of news will be that we are back home and outpatients at the hospital again.

Will put some photos up of Brendan's when he is 7.

Love to everyone.

Anna

ONE HOUR LATER

Went out for a walk while Brendan was having a nap. Found out when I returned that Brendan does not have Rotavirus as it was a 'false positive'. This at least means that we are out of isolation. Unfortunately we cancelled his small intestine biopsy due to the Rotavirus, so now we are back to not knowing what he has and is still causing the horrible diarrhea. We seem to be having one of those weeks where everything is a little upside down. Our concern is that Brendan's treatment has caused damage to his intestines. The roller coaster ride continues.

Love Anna

3rd August

Brendan has been in hospital for 9 days. A CT scan discovered he had sinusitis. He has started on appropriate antibiotics and nasal washes and drops to clear up the infection. He will see the ENT doctors in about 2 weeks to establish how much hearing he has lost and what needs to be done for his hearing.

On Friday Brendan had a bowel biopsy. We are awaiting the results. If the results are positive Brendan has Chronic Graft Verus Host of the gut and will need to go on immunosuppression drugs. Unfortunately these drugs mean that every time Brendan is unwell it will mean a trip to hospital. I long for the days when a panadol and a day off school and he is well again to come into our lives. If the results are negative then the reason for Brendan's terrible diarrhea is not really resolved. It could be the antibiotics or just the large amount of drugs he is on I just hope that we find out very soon.

Brendan has not been an easy patient over the past week. His doctors are concerned he is depressed. Our plan is to try and re-establish friendships as soon as possible. Brendan needs some one to one kid time. Brendan has not played with another 6 year old in 7 months.

There is talk of us going home tomorrow but we are not holding our breath.

I hope we are home really soon.

Love Anna.