GOING TO SYDNEY

On Thursday, after Brendan's latest bone marrow biopsy, the decision was finally made that we would leave for Sydney soon. Brendan's marrow has been completely destroyed by his latest round of chemo. The doctors describe his marrow as "empty". There are no leukaemic cells left in his marrow. There is also none of the good cells left. His is having regular blood and platelet transfusions and is staying in hospital as he has continued to suffer with headaches and is very susceptible to infection and is generally very unwell.

The plan is for Brendan and I to fly to Sydney on Tuesday morning. Brendan will be admitted straight onto the cancer ward. Richard will follow us on Saturday morning. He is going to wait for his parents to drive across from NSW and finish his bits and pieces at work and at home.

Over the next few days, it is hoped that Brendan's marrow will begin to rebuild itself. On Wednesday, in Sydney, he will have another marrow biopsy to check that conditions are favourable for transplant. He needs to re-grow his marrow without any leukaemic cells. If he has leukaemic cells in his marrow then his AML is resistant to chemotherapy and we will come home as a transplant will not work and the cancer will have won.

Hopefully this won't happen and all will go to plan and his marrow will return without the nasty cells and we can get on with the transplant and start the journey to curing our little boy.

This week has been a difficult week. Brendan has been very unwell and required a lot of care from the medical staff. He is still suffering from very painful headaches but he has managed to fight off a nasty bacterial infection. Now he is unwell due to the fact he has no marrow. He spends a lot of time sleeping but still manages to fight the staff and me when he doesn't want to do something. He is continually fed via his nose tube. While his weight remains stable, he looks very skinny and fragile. He still has a light covering of hair on his head which amazes us all and is very happy that he still has some left for now. Brendan is very happy that we are finally leaving for Sydney. I hope that this will lift his spirits and make him feel a little better.

This weekend Richard will be at the hospital and I will spend the weekend packing and organising for Sydney again. I will post our contact details on the blog after we have been in Sydney for a while and have found our way around a new hospital.

I look forward to filling everyone in from Sydney.

Love Anna.

IN and OUT of Hospital

Friday-Brendan has finished his second round of chemo and is waiting for his next biopsy. He has spent most of the last 2 weeks in hospital. We tried to get him home after chemo had finished but that only lasted 12 hours due to a fever sending him back to hospital.


Wednesday-Brendan is home today. We are watching him carefully as he can become ill very quickly. He has no white cells to fight infection so is very limited in the places he can go. At the moment, it is home and the hospital. He would love to catch up with some of his friends but the risk of infection is too great. He is happy just to be at home. When the doctor asked if we wanted to stay in hospital and have day visits or try and come home, Brendan was very clear that he wanted to come home and sleep. It was a real treat for me to sleep in my own comfy bed and to actually sleep without being disrupted by the many beeping machines.


This round of chemo has knocked Brendan again. Fortunately this is due to all the normal side effects. He remains very pale, tired and is really stuggling with his emotions due to the high levels of steriods he is on. He had a severe reaction to a platelet transfusion which caused the most amazing hives all over his body, Brendan would of ripped his skin off if he could. This means that he will have to be carefully monitored and medicated before any platelet transfusions in the future.

Friday-This is my third attempt to try and finish this blog entry. On Friday night Brendan became very unwell with a high fever and a bad headache with light sensitivity. During the day I had spoken to several friends and family about how well Brendan was doing (I spoke too soon). Brendan has been re-admitted to hospital. In Emergency, it was decided that due to his low platelets they would do a CT scan to check that he had not been bleeding into his brain but would leave the lumber puncture for now. After a day of worry it was found that he had a bacteria that is normally found in all our bodies in his blood. This was great news as it can be treated with strong antibiotics. For the last few days, Brendan has been sleeping and battling 39+ fevers and a bad headache. Today (Sunday) Richard and I will swap over. Richard spends the weekends with Brendan when he is in hospital and I send the rest of the week with him. This is so Richard can go to work. We are keeping most of Richard's leave saved for when we eventually get to Sydney.

I hope he will feel better in a day or two and that he has a chance to spend even a small amount of time at home before before we head to Sydney.

It is amazing how time goes so fast when Brendan is in hospital.
Will fill you all in soon.
Love Anna.

BIOPSY RESULTS

Brendan's biopsy results showed that this blast cell count had improved. The blasts have dropped from 60% to 22%. While the results are good, Brendan is not in remission and needs more chemo before we can proceed with his transplant. He has been detatched from his machines and is home for the weekend. He was so excited to be coming home, he really was jumping for joy. He came home on Friday night and will return for his next round of chemo on Monday.

The plan, as of today, is that Brendan will have another 6 days of chemo (different from the last chemo); be in hospital for around three weeks and then, if he is in remission, we will finally make our journey to Sydney.

Our hope is that he will breeze through the next round of chemo. He did really well with the first round. We won't know how he will react because the chemo they are using this time is quite strong and is a different combination of drugs.

Brendan's appetite has returned. He eats a very selective combination of foods. He loves potato nuggets, bacon and apricot delight. He constantly craves salt and will scrape every last grain from his plate. While in hospital he still has his naso-gastric feeds during the night to help him maintain and even gain weight.

For now, we are going to enjoy the weekend and catch up on sleep before we start all over again.

Hi to everyone

Love Anna