DAY 65

Brendan's fevers are slowly but surely disappearing and he is spending more time awake engaging with us. It's really nice to have him back. Tara came to visit Brendan today during her school break and when she asked Brendan how he was feeling, to Tara's surprise, he said "fine". He has been on small walks around the ward. Lots of families are happy to meet Brendan in person at last. I asked one of Brendan's doctors what would Brendan need to do to get out of hospital and go home.

He needs to:

• Have no fevers
• Be on oral medications
• Be able to tolerate 12 hour night naso gastric feeds
• Be able to drink 250mls of high calorie shake during the day, plus eat other foods
• Have stable blood counts (Brendan's platelets are still not stable this maybe due to his fevers. Fevers tend to chew up platelets).

Ronnie Mac house is organising a small apartment for Brendan, Richard and I and a bedroom in the house for the older kids to sleep in. The apartments are very small but are attached to the main house and the kids will be close by and be able to contact us by phone. That way we won't be living on top of each other. Kieran is in isolation at the house at the moment as he has a cold.

Hopefully the worst of everything is behind Brendan. I really, really hope that our little man can continue to improve. The journey back to full health for Brendan will be a long one. I hope his recovery is faster than the long journey we have been on. We also hope that there is no more surprises and some time without fevers would be fantastic.

Hopefully from here I will continue to be able to tell everyone good news.

Love from Anna.

DAY 62

After a few days away and some help from some good friends, I am feeling a lot better.

After being away for a few days my hope was that Brendan would be feeling better. A lot of the side effects from a drug he was taking have improved but the fevers have remained. We have watched Brendan slowly become more unwell over the last two days. Fortunately, a blood culture returned as staph positive (he should be feeling lousy and have a fever). Brendan has a infection in one of his lines. He has been started on a course of IV antibiotics and should be feeling better in a few days. Staph infections really knock kids with a compromised system around. If the infection cannot be brought under control through the use of antibiotics, then his line will be removed again so that the source of infection is removed.

We hope to see a little more of the Brendan we know and love in the next few days.

Love Anna

DAY 60

Anna came down with a head cold on Wednesday ( Day 57) which meant that she was not able to have contact with Brendan until she had recovered. Anna, along with the two older kids, stayed with friends in Gosford where she has been taking a much needed break. I have been 'holding the fort' in the meantime. Now that she is feeling better, Anna will be returning with Tara and Kieran later today (Saturday).

Brendan will be very happy to see them all again.

The results of Brendan’s last bone marrow biopsy on Tuesday 20/5/08 ( Day 56) indicated that he is leukaemia free and that there has been no re-occurence of the Myelodysplasia. This is brilliant news. However, there are ongoing issues and difficulties with Brendan still struggling with fevers, upset stomach and diarrhea.

Brendan’s medical team have rationalised Brendan medication regime, ceasing or reducing the drugs that Brendan no longer requires. We are hoping that some of Brendan’s ongoing symptoms are medication side effects and that cutting down on the drugs that Brendan is receiving will reduce the diarrhea and the fevers.

The diarrhea does seem to be finally slowing down. Brendan’s appetite is returning with Brendan asking for food (he has been eating rice crackers, McDonalds and asking for hot chocolate). Although Brendan is still struggling with temperatures, they are less severe and not as constant as they were. We just hope that these improvements are sustained and continue.

Over the last few days, although Brendan is still ‘down’, he has been a little easier to get involved in things. We have been building cardboard spaceships, have finished reading "The Magic Pudding" and have nearly finished off a cardboard model of Willy Wonka’s chocolate factory.

Although we have made significant progress towards Brendan's recovery , we still have a way to go yet.

Richard

DAY 56

Brendan has moved rooms in the ward. He has engrafted and no longer needs to be in a transplant room. He is still in isolation and has a room and bathroom to himself. The new room number is Room 8. Please do not use the old number as another family will be using the transplant room.

Our new phone number is: 02 93821746.

Brendan’s fevers have continued constantly for weeks. All the cultures, biopsies and tests have come back negative. Tomorrow Brendan will have a bone marrow biopsy to look at his new marrow. This is to check to see how things are going and whether there has been a return of the MDS. Brendan’s doctor does not believe that the cancer has returned. The biopsy is to put all our minds at rest as to why he is continuing to have fevers and to help his doctors decide what to do next.

The next place to look for the cause of the fevers is the drugs he is on. The two main drugs he is taking are to stop him from rejecting his marrow. One of these will be stopped soon due to Brendan engrafting. The question is, will either of these medications be positively identified as the culprit behind his never ending fevers. While Brendan continues to have fevers, it is very difficult for him to really feel any better.

One of the Dad’s from Ronnie Mac house described our lives as ‘Ground Hog Day’,
(that movie with Bill Murray). Every day we wake up and everything is the same over and over again.

We all hope that very soon we will have the answer to Brendan’s fevers. He is still very down and I have asked for the hospital psychologist to get involved. Brendan seems to be stuck and cannot see his way out of being sick. He is starting to watch a bit more TV and enjoys seeing Tara and Kieran. He doesn’t have the energy to do much else except sleep and rest. Hopefully, by the end of the week, we will have a better idea of what can be done to stop these horrible fevers.

Will post on the blog with any news
Love from Anna

DAY 50

It’s hard to believe that we have been living in the same room for so long. Brendan’s blood counts continue to rise and his white cell count is in the normal range. We have lost the mother ship and it has been replaced with a single pole again. Brendan has had some time detached from his machines and has been able to spend small amounts of time out on the ward balcony.

Unfortunately his fevers have continued and in the last two days he has become unwell again. The respiratory team have reviewed him today and have decided he needs another lung investigation. Brendan’s doctors think he has a lung virus which has been very difficult to diagnose. He continues to sleep a lot and feels unwell. He has no energy to play or interact for more than a very short while.

Brendan went to theatre this afternoon. The respiratory doctors found some “muck” in Brendan’s lung. This was removed and will be cultured. They also washed Brendan’s lungs out with saline water which will also be cultured to look for bugs. His doctors are hopeful that this will give us the answer as to why our little man is struggling to get well.

Kieran and Tara have settled into school and are making new friends. They have adapted to living in Ronnie Mac house and visiting the hospital several times a day. They enjoy the special dinners put on at the house by different companies. We have all met some lovely people at the house. Everyone has a story to tell and everyone is very supportive of each other.

Brendan is now half way through his recommended days in isolation and half way through his stay in Sydney. We hope to hear in the next 48 hours the results of his lung investigations.

Talk to you all again soon,
Love Anna

DAY 42 and
DAY 43

Brendan has continued to show us that his marrow is continuing to grow and make new cells. Cell regrowth from cord blood is notoriously slow and Brendan is proving the literature correct. He is still struggling with fevers. They are relentless. The fevers are really getting us all down. Brendan is really struggling. He is very down and seems very sad to me. We all miss his laugh. The fevers take away any opportunities he has to enjoy himself. The thoughts the doctors have had is that Brendan could be having fevers from a drug reaction. They have listed off about 5 possible causes - the best being the drug reaction and the worst being the return of the leukaemia. Unfortunately, the drug that could be causing the fevers is important in ensuring that Brendan's blood cell development continues on an upward trend. Without this drug, his cell counts would drop dramatically.

Brendan's nasogastric tube has had to be replaced as he is becoming malnourished. He has tried really hard to eat and drink enough so that it did not need to be replaced. He also needs the nutrition to help him feel stronger which will also help him feel better. Tomorrow he will have his first outing from the room that does not involve a medical test in another part of the hospital. Brendan will have some time outside on the ward balcony with his family. He has been in the transplant room for over 2 months and has been in hospital for 4 months with only about 3 days at home during that time.

Brendan's hair is now falling out weeks after his chemo and radiation. Replacing it is very thick black hair. His eyebrows are about twice their normal size. Brendan will become very hairy. The hair is due to an anti-rejection drug and will fall out once the drug has ceased. He will then get his post treatment hair. It is anybody's guess as to what it will look like. His eyelashes are growing back and seem to be growing overnight. They are growing a lot faster than the hair on his head.

For the next few days we need to try and pull Brendan out of his depression. The last few days have felt like he doesn't want to do this anymore. We need to help him find some of his amazing energy to take on and combat anything that gets thrown at him.

Love to everyone from a very tired and worn out Anna.

Day 43

This morning Brendan got dressed for the first time in many weeks. He walked to the ward verandah and had a KFC lunch with Mum, Dad, Kieran and Tara. Brendan requested KFC. He ate a good lunch. Overall, his day has been better. He has been introduced to a nutrient rich drink called a "moo shake". The shake and nasogastric feeds will be enough to give him his daily calorie count. Any other food he eats is a bonus.

The doctors are reducing the drug that may be causing his fevers. I also have requested that we give Brendan Panadol before the fevers get too high. We know that he has fevers and that they are not stopping. The fevers are really wearing him out. He needs a day without feeling terrible for most of the day. Brendan is sounding a little brighter today. He had a large dose of red cells this morning and is talking a lot more than he has in days. Lets all hope for some happier days for Brendan.

Love Anna

DAY 38

GREAT NEWS

Brendan has engrafted. This means that Brendan now has the beginnings of a functioning bone marrow. The criteria used by medical staff to define 'engraftment' is Brendan achieving a neutrophil count of 0.5 or above on 3 consecutive days. Brendan achieved this milestone yesterday. This means that Brendan 'engrafted' 34 days after receiving his cord blood transplant ( Day 0). The transplant team count backward from the 3rd day of measured levels of 0.5 or greater on Brendan's neutrophil count to arrive at an 'engraftment' date. (See the lovely graph that I coaxed Tara into preparing at lunchtime today between school sessions).

Although this is a relief and hugely encouraging, we are not 'out of the woods' yet. Although his diarrhea is improving, Brendan is still struggling with temperatures ( up to 40 degrees last night). These symptoms appear to be a result of a combination of the virus identified in Brendan' bowels and Graft versus Host disease. Further testing has shown that the virus is not present in his blood or anywhere else in his system at the moment.

Overall Brendan seems to be on the mend. He is becoming more active and engaged every day. He is particularly enjoying the company of Tara and Kieran, now that they returned to Sydney. Brendan is well enough to be completely fed up with life in isolation on the ward. When asked this morning by the head of oncology how he was feeling, Brendan replied,

" I just want to go home"

We all know how he feels. It is a long haul but we getting there.

See you.

Richard, Anna and family.