DAY 35

Brendan has continued to struggle with fevers and feeling unwell. Over the week he will have several tests to try and find out why. He is showing signs of Graft Versus Host Disease of the skin and the gut. Tomorrow he will have his skin and bowel biopsied to check for GVHD.


Graft-versus-host disease: A complication of bone marrow transplants in which T cells in the donor bone marrow graft go on the offensive and attack the host's tissues. Graft-versus-host disease (GVHD) is seen most often in cases where the blood marrow donor is unrelated to the patient or when the donor is related to the patient but not a perfect match. There are two forms of GVHD: an early form called acute GVHD that occurs soon after the transplant when the white cells are on the rise and a late form called chronic GVHD. (http://www.medterms.com).

Brendan’s nasogastric tube became dislodged on the weekend. He was given the chance to try and eat or have the tube replaced. The fear and the thought of having the tube replaced while he was awake has been enough for him to begin eating again. He has to show on his nutrition charts that he is eating a little more every day. He is slowly increasing his food intake with foods he enjoys.

We were told today that due to Brendan’s complications we would be staying in the isolation room for another month. Brendan has also shown signs that a bone in his leg has an infection. This was detected by a bone scan. The doctors are looking for all possible sites and causes of infection. Any time Brendan has a diagnosis of another possible complication, another team of doctors gets involved. It’s becoming a bit of a joke over which specialist team hasn’t seen Brendan in the last month and a half. Every time the doctors find or suspect something, it has to be checked, biopsied, grown and looked at by a specialist. The whole process takes days.

Brendan is feeling really down at the moment. He is not his usual chatty self. He doesn’t want to talk to anyone and says he doesn’t want anything. It feels like every time we see a little bit of our old Brendan back he is hit with yet another complication.

Some good news is that Brendan’s white cell and neutrophil count continue to slowly rise. He is well on the way to engraftment.

LATER IN THE DAY

Later in the day Brendan's doctors told us that Brendan has a virus called Adenovirus.

Adenoviruses are a group of viruses that infect the membranes (tissue linings) of the respiratory tract, the eyes, the intestines, and the urinary tract. Adenoviruses account for about 10% of acute respiratory infections in children and are a frequent cause of diarrhea. http://kidshealth.org

Adenovirus has serious complications for children with suppressed immune systems. Tonight Brendan will be given an anti-viral medication. The discovery of the virus helps to explain why Brendan feels so unwell. The doctors are happy that we found the virus early on and not in a few days time when he may have been extremely ill. Tonight will be a night of little sleep, too much medication and large amounts of needing help with toileting.

Richard, Tara and Kieran all return to Sydney tomorrow. Kieran and Tara will start school at the hospital school on Thursday and Richard will stay with Brendan so I can get some much needed sleep.

I hope I have some better news soon.
Cheers from Anna

DAY 30

The last few days have been difficult. Brendan has remained unwell most of the time. He has had his central line replaced as the pic line was a possible source of infection and only has a short life. Brendan was quite excited about having his central line replaced as it meant that he could have free arms again.


Today Brendan had another visit to theatres as the respiratory team needed to use a bronchioscope to look at Brendan's lungs for a possible source of infection. Brendan has continued to fever at high temperatures and has developed a persistent cough. They did find an area of inflammation and have sent a sample to the lab. So far, there has not been any viruses detected. We are waiting to see if it will grow a bacterial bug. It is still difficult to detect infection in Brendan's body as he still does not have enough white cells or neutrophils to develop pus or swelling due to an infection.

Since day 25 there have been several occasions that Brendan has been feeling well enough to sit up in bed or have something to eat.















Brendan eating an icecream.







Brendan and Kieran playing on the
laptop.


The 'mother-ship' has dropped from 10 pumps down to 7 pumps. Brendan no longer requires 24 hour pain relief and has stopped his IV nutrition. All Brendan's nutrition is through his nasogastric tube. When I asked the dietatian what Brendan should start eating we were told junk food - anything that is tasty. Brendan has lost a lot of his taste due to his treatment and needs strong tasting food.


While we continue to battle the continuous setbacks, we know that Brendan is getting closer to engraftment every day. It has now been a month since transplant day. We still have another possible month to go in his transplant room. We hope it will be less.


Cheers to everyone
Love from Anna

DAY 25
A ROLLERCOASTER RIDE

Over the past few days Brendan has been feeling a lot better. His white cell count has been up and he is beginning to show signs of a neutrophil count. He has started to drink juice and has had a handful of chips on a few occasions. He is spending more time awake and is interacting with everyone around him, even arguing with Kieran. Small activities still wear him out. Bathing and daily care is a major exhaustion for him.

While everything was looking up, last night Brendan began to become unwell again. The difference between yesterday and today are startling. He has developed a fever, a pain in his side caused by a swollen spleen and is sleeping as he feels so unwell. Today will be a day where he is constantly disrupted by tests to try and find out what is wrong. Brendan, as always, is a great patient. He rarely complains, never whines and when he does we sit up and take notice.

Transplant is always described as a rollercoaster ride. You can be excited at blood results in the morning and worried sick by the evening. The whole process is really taking one day at a time and sometimes you need to break the day into small pieces as there can be so many things that can be worrying in one day. One day can bring a multitude of emotions. Just when you find yourself feeling safe and smug something comes along and smacks you in the face. So many things can go wrong that are caused by his own body or by the stress we are putting on his body.
I am sitting next to Brendan watching his nurse doing his line change. He has so many lines that they become impossibly tangled in a very short period of time. The whole process can take over an hour and needs to be done every three days. His entire lines together look like one stringy puzzle maze.

Hopefully, next week Brendan can have his central line replaced. The trick will be to ensure he is well enough to cope with a general anaesthetic. If his pic line is causing the trouble, then it will need to be removed before his central line has been replaced. This then makes us all wonder how he will get all the drugs he needs.

Brendan loves having Kieran and Tara here. Tara has returned to Adelaide as her school choir is going on a tour of Alice Springs. She will be back to start school in about a week and a half. Kieran is with us and even when Brendan is unwell, he likes watching Kieran play on the computer and chats to him. He really enjoys having some kid company. The kids have been enjoying Sydney. This is the first time that they have spent any length of time here. We have been taking turns with them visiting the sights of Sydney. We are all getting into the rhythm of living at the hospital and caring for Brendan and each other. I hope that my next blog will tell you all that Brendan is feeling better.

Cheers to next time
Love Anna and family.

DAY 19

The removal of Brendan’s central line has made a great difference. He has not had a fever in three days and is looking a little better. The doctors are beginning to reduce his pain medication as he is always sleeping and Brendan keeps saying when he wakes up that he is tired. The trick is to balance his pain medication so that Brendan's pain is managed but not so much that he is always ‘stoned’, so that he can spend some time playing and chatting. Brendan’s room is strangely quiet and I miss our chats. When he is awake he has been enjoying making Lego ‘Exoforce’ characters with Richard and myself.

Brendan’s doctor told me today that hopefully Brendan is over the worst of the transplant and that he is now well enough to begin making white cells. Brendan will remain in isolation until he has a neutrophil count of 0.5 for 3 consecutive days. Presently his neutrophil count is 0.0. Neutrophils are a type of white cell that ingest and destroy bacteria. There is still a long road to travel. He still has to reach 'engraftment', (he is still engrafting). We also have to see how his body reacts to engraftment and see to what extent his body will try and reject his new marrow. For now we sit and wait. His doctors hope that he will be feeling a lot better by next weekend. Brendan's white cell count has continued to rise and fall. His count has remained low as many of his white cells he had have been busy trying to fight off his central line infection. Today's count shows a trend towards his count improving daily.

Although I was told by several doctors that Brendan would lose all his hair, to date he still has a small layer of soft and fuzzy hair all over his head. He has no eye lashes but still has eyebrows. He looks very unusual without his eye lashes. He is still very bloated from fluid retention and is on an average of about 20-40 drugs a day. The amount of drugs will be reduced as Brendan improves. A lot of the drugs will become oral once he can tolerate food in his stomach. This will mean less beeping pumps in Brendan’s room. A friend visiting said we should put a close-up picture of Brendan’s pumps on his blog as it was unbelievable unless you saw it in person.

Brendan spends a lot time sleeping at the moment. His movements are confined due to the large amount of tubes attached to his lines.

Next to him on his bed is a Lego creature he had made with us.

KIERAN and TARA arrived on Saturday. They will be staying with us for the at Ronald

MacDonald house until we go home. It is still impossible to make plans in relation to the amount of time we need to spend in Sydney. Tara and Kieran will attend the hospital school and will continue with their school work from their high school in Adelaide. Over the holidays, we plan to explore Sydney with the older kids. They have never spent much time here. Tara is going to return to Adelaide for a week to attend an Alice Springs Tour with her choir from school. Richard and I have adjusted how we spend time in the hospital. The parent who sleeps in Ronnie Mac house will care for the older kids that day and we will change over in the evening. The nights with Brendan are too exhausting to then try and be rational and reasonable with two teenagers. We are going to spend the next week readjusting our lives so that we can all work together and help make Brendan's time in Sydney a little more fun. Hopefully he will feel well enough soon to enjoy Tara and Kieran's company.

Will keep you all posted

Love Anna

DAY 14

The last few days have been very difficult. Brendan has continued to have high fevers, rigors (uncontrollable shivers) and has been feeling unwell. The doctors have tried every possible antibiotic to try and stop the possible infection. Every test (culture) they have run comes back negative (so far). Sometimes children have fevers during transplant that cannot be explained. The other difficulty is that as Brendan has an extremely low white cell count and no neutrophil count he does not have the swelling and pus he would normally get with a bad infection.

On Monday morning, it was decided to take out Brendan’s central line from his chest as the skin surrounding the line was red and swollen and very painful. The line may be the source of his infection. The central line is the line that all Brendan’s bloods, medicines and nutrition are administered through. This meant that he had to have a general anesthetic. He now has a pic line. A pic line is a line which runs internally along a vein from the inside of his elbow to his heart. They also placed in two other general lines into his veins to help with the amount of drugs and supportive care Brendan requires. Unfortunately, the pic line was not in the right place when it was inserted, so Brendan had to have another general so it could be replaced. By the end of the day Brendan was a fevering miserable mess. He was now hours behind in his medicines and blood products. Richard spent the night listening to Brendan’s ‘spaceship’ beeping. Brendan now has 9 pumps running almost continually with medication, blood products and nutrition. Out of a 24 hour day there is about two, two hour windows when his pumps are not beeping intermittently.

Brendan spends most of his days resting. He spends very short periods of time watching TV or playing computer games. He is still struggling with diahorrea and is swollen from excess fluids. He pulled the last of his beautiful eyelashes out himself today. The one thing he enjoyed (his daily shower) has been taken away for a while. His lines are wrapped in bandages which can’t get wet. His shower was a place where he had some privacy and some space away from other people.

Richard and I are feeling the effects of missing so much sleep. When you sleep in Brendan’s room the ‘spaceship’ sounds off a sporadically beeping alarm which gets louder if it is not seen to within a certain time. Our room is almost sound-proof so the nurses can’t hear the beeping. Every second night we get a good nights sleep but even that is not enough anymore. Our accommodation at Ronnie Mac house has made a difference. Our room is quiet, safe and comfortable. The house is always full of families with amazing stories. For now, we are taking what each day throws at us. Brendan is overall a week ahead where he was expected to be at this stage in his white cell count. If we can find out what is causing his infection and control his fevers he will be a much happier little boy.

Lots of hugs to everyone
Love Anna

DAY + 10

WE HAVE LIFT OFF

Brendan is showing a clear rise in his white cell count today. With his rash and his white cell count we can now say that Brendan's stems cells have engrafted. This is great news as he is only at day 10 and it was not expected that we would see any signs of engraftment until next week.

Brendan is doing OK. His body is covered with a rash. He is struggling with diarrhoea and feels fairly miserable. He is good at sleeping when he feels unwell. For now, we watch and wait and deal with his discomfort as best we can. The oncology staff are very good at trying to make sure Brendan is in as little discomfort as possible. While they keep on top of things, Brendan is clearly in discomfort a lot of the time. He does have small periods of time where he sits up in bed playing computer games or watching TV.

I will keep everyone posted as to how Brendan is doing.

Hi to everyone.
Love Anna.

DAY + 9

This morning Brendan felt well enough to spend some time with the music therapist. Together they are making a music CD using a computer program. Brendan gets to make and mix some very strange sounds.

Overnight, Brendan developed a rash all over his body. This morning, his blood counts started to show signs of engraftment. If his blood counts continue to improve tomorrow, we can start getting excited that maybe his new marrow is beginning to work. Engraftment is very exciting but like all Brendan’s treatments, often, while you hope that something good is happening, there is always the possibility of serious complications around the corner. While engraftment is a very big possibility, there also is the possibility that his body will try to reject his marrow. This is called graft versus host disease (GVHD). This is a complication which can be very mild or extreme to the point where it is life threatening. Overall children who have cord blood transplants have less GVHD. We won’t now how severe his GVHD will be until he has engrafted. Every child is different.

Brendan’s ‘spaceship’ continues to grow. He now has so many pumps running that the nurses have had to add another pole. The doctors are very happy with Brendan’s progress and are amazed at his resilience. He still struggles with high fevers but even these seem to be improving. He now has IV panadol which works most of the time but unfortunately his fevers break through before the next dose is due. His fevers are very high and make him feel miserable and sick.

What is left of Brendan’s hair is beginning to fall out. He has lost his beautiful long eye lashes.

We can tell that Brendan is feeling better today. He is becoming more argumentative.

The medical staff here at the Sydney Children’s Hospital are getting to know Brendan better. They have commented several times on 2 things about Brendan. They say he is bright: Nurses laugh about how many questions Brendan asks about various procedures and how he corrects them when he feels like they are not getting some detail quite right. The doctors have also noticed. After Brendan had (accurately) answered a question put to us by a doctor about his weight (measured twice daily), the doctor commented that it was unusual for kids in treatment to remember vitals statistics such as their weight or what their temperature was at the last ‘Ob’. The other thing staff have been saying is how ‘stoic’ Brendan is. His pain tolerance is high and although he may argue and question, he doesn’t complain.

That’s our guy.

Love to all from Richard, Anna and Brendan