MARCHING ON

Brendan is now in the full throws of chemo. Most of his hair has fallen out (he still has kept a small amount of hair all over his head). He no longer has any white cells to fight infection and has been having nutrients via a naso-gastric tube. He has really slowed down. He fells unwell a lot of the time but still has the occasional bursts of energy. So far, Brendan is having all the 'normal' responses to chemo. He has prophylactic medication to stop him from catching any nasty germs. His food tastes have changed, he no longer wants his favourite food and finds delight in food he normally would not really be interested in. We contantly struggle to get him to eat anything, so we wait until he feels hungry. The gaps in his appetite are filled using a nutritional supplement. This has helped Brendan to maintain his weight and even put some weight on.

Brendan's days continue to be filled with constant medical care. We have found the only time to get any sleep is between 2.00 and 6.00 AM. The rest of the time there are machines that seem to be beeping a lot plus he also needs a lot of physical care. Overall he seems to be coping. He still loves a fight about his mouth care and really enjoys that Tara and Kieran are home again and visiting him most days.

Unfortunately some of his medication makes him extremely emotional. He can swing from happy to angry with little help. I find this part very tiring. Normally Brendan is a very compliant kid with all his medical care but now it seems everything is a constant battle.

Tomorrow (Wednesday) Brendan will have a bone marrow biopsy. The biopsy will determine Brendan's next treatment. We will either be heading to Sydney soon or we will be staying in Adelaide for more treatment. The decision will be made once Brendan's marrow has been veiwed by his doctors.

We will keep you informed
Much love Anna

TROOPING ON

Brendan has finished his 10 days of chemo and come through it all with amazing stamina. He has suffered the usual effects but still remains mostly positive and happy a lot of the time. His hair has began to fall out and his mouth has sores that are very painful. He is still eating and has a love for freshly cooked bacon. The smell of the cooking bacon in the parents room gets the staff and often the other kids on the ward wanting bacon as well.


Brendan can no longer leave the hospital for visits home as he now has no immune system to fight any bugs that may come his way. He enjoys playing any electronic toy he can gets his hands on, and fills his time either playing his electronic equipment or doing things with Mum and Dad.

He is really looking forward to Tara and Kieran coming home. He really misses them. Brendan misses contact with other children. I'm no good at talking about PSP Lego Star Wars games. Camp Quality arrived at the hospital with a special gift for Brendan: his own PSP (Play Station Portable) and several games to help fill his time here in Adelaide and in Sydney. Brendan was so excited and has had his nose stuck to the screen a lot of the time.

Richard and I are now taking turns at staying with Brendan overnight. You rarely get any sleep that is more than 2 hours long. There seems to be constant beeping of machines or Brendan needing some sort of nursing or parent attention. Fortunately the ward is not up and running until late in the morning. All day is spent with Brendan attached to his fluid and medicine pump. He is often tangled up in tubes and has very limited movement. He is still overjoyed by the fact that all his blood is taken from his central line and not from his veins. He loves the idea that no one has to stick him with a needle.

Overall Brendan is doing what the doctors expect. He has the usual 'hiccups' that all children having AML chemo suffer. He still remains positive and is often very cheeky with the nurses. He will correct the nurses during hand over time if they don't get something right. His positive attitude is very contagious, he still loves a good argument but will do what ever he is asked (most of the time).

Brendan's home away from home.

Brendan relaxing and watching TV

Hope everyone is well. Will post again soon.

Love Anna and Brendan

OUR LITTLE TROOPER

Brendan started his chemo on Friday, 11th of January. After 6 days of intense chemo he was finally detached from the pump that was administering his drugs. He ran around his room in delight as he was free from continuous high levels of fluids and free from being continually pumped full of chemo drugs. He will continue chemo for another 6 days and then he will receive supportive treatment while his marrow recuperates. Brendan is holding up remarkably well. He has been home on several day visits and is still his happy self most of the time. He continues to receive red blood cells and platelets as he needs them.

He still surprises and amazes us with his easygoing nature and only making a fuss when he is really distressed. He hates having 4 hourly eye drops and having his chest dressing changed. Having surgical dressing ripped from his skin is what he really hates the most.

He had all the nurses laughing while he was under sedation for a lumber puncture - he decided to be the 'smooching kisser' and wanted to hug and kiss everyone.

Brendan is at the point in his treatment when all the nasty side-effects start to emerge. It is difficult to get him to eat as he has stomach pains. For now we can bring him home daily for a visit until he is no longer well enough to leave the hospital.

His oncologist is telling us that he is planning for Brendan to only have one round of chemo and then to go to Sydney for his transplant. Sydney is holding a bed in the transplant unit for him.

Brendan will have another bone marrow biopsy after his 20 days of recuperation and then the decision to do another round of chemo or go to Sydney will be made. Until then, we have decided it is too hard to try and make any plans so we will just let things happen and deal with them as they occur. Cancer has this amazing ability to change its course whenever it chooses.

Love to everyone

Cheers from Anna.

Our contact details and postal address at the hospital are:
Adelaide Women's and Children's Hospital
Brookman Ward (Room 7)
72 King William Rd
North Adelaide 5006
Ph:08 81617000

CHEMO STARTS
After our news that we were not going to Sydney as planned, we spent a day and night at home reorganising our lives. Kieran, Tara and Richard have gone to Sydney to help celebrate Richard’s nanna’s 100th birthday. Kieran and Tara will then go to the NSW South Coast with Richard’s family for the rest of the summer holidays.

After our short stay at home, Brendan returned to hospital to start his chemotherapy. Brendan was started on an internationally recommended chemotherapy protocol for Acute Myeloid Leukaemia (AML). Brendan will have 10 days of chemotherapy drugs followed by 20 days of recuperation. Over this time he will suffer all the horrible chemo side affects. After 30 days he will have another bone marrow biopsy to see how the treatment is working. He will then start another 30 days of the same protocol with the hope that the AML will then be in remission. Once he is in remission, we can head to Sydney to have his transplant. Over the last few weeks another potential bone marrow donor has been found. We now have time to follow up and see if they are a suitable match.

Brendan will be in hospital for the duration of his treatment in Adelaide. We will have a very small window of opportunity to have a few day outings with him before he becomes too unwell to leave the hospital. For the next few months, Adelaide Children’s Hospital will be his home. Brookman ward where Brendan is staying has a very caring a supportive environment. He has a room with a balcony and a view over a park. He has every electronic toy and game imaginable available to him.

So far Brendan is tolerating all the horrible medical procedures in his usual relaxed style. When he makes a fuss, it means he really needs our support. His time revolves around routine treatments that keep him well and reduce the chemo side effects and filling the long days with activities, games and electronic toys. He needs regular red blood cell and platelet transfusions. Even though Brendan has physically slowed down a lot, he has still managed to charm the nurses with his happy and cheeky personality.

Richard will be in Sydney for a night and will then return to Adelaide to finish things at work. He will then take some time off so that we can both care for Brendan when his chemo hits him full on. Brendan has accepted the changes in his usual relaxed way. He is sad that he won’t see Kieran and Tara for a few weeks.

We are hoping that our lap top computer can be set up to the hospital’s wireless internet soon. This will mean we can that we can keep Brendan’s blog up to date and send and receive emails without having to go home.

Will keep everyone up to date when we can.

Much love from Brendan and Anna

NOTHING SEEMS TO STAY THE SAME

While Brendan was in Adelaide hospital having his pre-transplant tests, it was discovered that his Myelodysplasia syndrome has progressed to Acute Myeloid Leukaemia (AML). The diagnosis of AML changes things significantly. Brendan now needs several courses of chemotherapy in Adelaide and for his AML to go into remission before he can have his transplant. We are now dealing with a new illness with a whole lot of new complications and consquences for Brendan.

Today we are unpacking for Sydney and re-packing for a long stay in hospital in Adelaide. Our lives have been turned upside down in the last 48 hours. The doctors have sent us home for a night and a day. I am taking Brendan to have his hair cut very short, so that when his hair falls out in about two weeks it will be less traumatic for him.

Today we are all very sad and asking ourselves all the "what if"questions. Tomorrow we will begin our journey in supporting Brendan though his chemotherapy.



Our contact details and postal address at the hospital are:

Adelaide Women's and Children's Hospital

Brookman Ward (Room 7)

72 King William Rd

North Adelaide

5006

Ph:08 81617000



Please do not send flowers to the hospital as they are not allowed on the oncology ward.

We can still be contacted by email, mobile and home phone.



I will keep everyone informed as much as possible through the blog.



Cheers from Anna, Brendan and family.

WERE ON OUR WAY

On the 10th of January Brendan will be heading to Sydney for his Cord Blood Transplant.

On New Years Eve, Brendan was taken to hospital as he was very unwell. He stayed in hospital for 2 days for observation and a blood transfusion. His condition over the new year made it clear that he now urgently needs a transplant. Fortunately, a bed has become available in a transplant room for Brendan at Sydney Children's Hospital Randwick. He will being the next stage of his journey sometime in the week beginning the 14th of January.

Once we have settled into Sydney I will post our contact details on the blog.

For now we are spending most of our time at the hospital as Brendan is having his

pre-transplant work up done in Adelaide. In our spare time we are packing and organising for our trip to Sydney.

I will keep everyone posted.

Cheers from Anna