DAY + 6

It has now been six days since Brendan's transplant. He is in the full throws of all the horrible stuff that happens to you in transplant. Brendan spends his days in bed doing very little. He is really suffering from the side effects of chemo and radiation.

He can no longer eat or wants to drink and relies on nutrition through his central line. His mouth, throat and gut are covered in very painful ulcers. He is given strong pain killers to stop the pain of the ulcers. He is suffering from very high fevers that are caused by an infection which have come from his own skin. Brendan relies on us for all his needs. It takes two of us to help shower him as the "space-ship" has to be moved by one person and the other one watches over Brendan. Just walking to the bathroom and back is exhausting for him.

We all get very little sleep. Richard and I take turns to stay overnight with Brendan. The one who does not sleep over, sleeps in our room at Ronnie Mac house. This way we get to sleep every second night. Our days are spent caring for Brendan and the one who has had very little sleep the night before comes and goes as they need to. We try and have dinner together and see Brendan before he settles down for the night.

Brendan is not at all demanding, rather it is his illness that is demanding. The next few weeks will be like this. For now (it is still very early days) he seems to have avoided some of the life threatening side effects of his treatment. He is on an amazing amounts of anti-bacterial, anti-viral and anti-fungal medications. His medications seem to go around the clock. He relies on all his blood products being given to him via his central line as he has no marrow to make any of his own.

Brendan's special spark has gone. He is very flat and very quiet. He is comfortable as long as one of us is around. He doesn't mind us coming and going as long as he knows where we are. He has asked me several times recently why can't his life be "normal". I tell him we are here to make him better so that his life will be "normal". Each day is different and in one day so many things can change. Brendan can be sitting up in bed chatting and the next moment he is fevering and very unwell. All we can do is take everything as it comes.

Will keep you all up to date on Brendan's progress.

Love Anna

TRANSPLANT DAY

TUESDAY 25TH MARCH 2008.

At three o’clock on Tuesday afternoon Brendan received his new stem cells. They arrived frozen in liquid nitrogen and were thawed in warm water next to Brendan’s bed. Brendan received two cords which were frozen into 5 small bags. His room was full of doctors and nurses. There were friends and student nurses watching through Brendan’s window. Brendan sat and watched the first bag of cord blood go into his central line. By the second bag he was feeling unwell and went to sleep. He had been given medications so that he did not have an allergic reaction to the cord cells which made him feel sleepy. He also had high blood pressure which is caused by the preservative that the cord cells are stored in. The preservative smells like creamed corn. When you are sitting in his room you can’t smell it but if you leave the room and then walk back in or sit close to Brendan then the smell of corn is very distinctive.

The trolley with Brendan's cord blood cells

The frozen cells

Cells after thawing

Removing the cells from one of the bags

















Injecting Brendan's cells through his central line

Brendan sleeping through the transplant

The cells will take anywhere from 10 to 35 days to engraft. We will know that his marrow is engrafting because there will be a rise in his white cells. Brendan is now very susceptible to infections and complications and is becoming more unwell each day. He refuses to eat, so is now relying on naso-gastric feeds and nutrition which is run through his central line. He is beginning to show signs that mucositus is a problem. Mucositus is ulcers in the mouth, throat and gut. They are extremely painful and cause a lot of distress in children. He will be started on morphine today to help with the pain. Brendan is very weak and wobbly and is sleeping a lot. He still has enough energy to boss around the doctors when they come to visit in the morning.

One of Brendan’s doctors is looking into sending Brendan’s DNA to the USA for testing for some new periodic fevers that have been discovered. There is no guarantee that his fevers will not return after the transplant. Having an answer will mean that he can be given the right medication to stop the fevers. We would really like to see him off the steroids as they have so many long term complications. It would also be nice to have an answer to his unexplained fevers especially as there is no guarantee the fevers will stop after the transplant.

Brendan has the most amazing machine unit in his room. It looks and sounds like a space ship. All Brendan’s drugs, nutrition, blood products and fluids are pumped through machines attached to the unit. The unit is so big that you need to turn it sideways to fit through a doorway.

Overall Brendan’s doctors are happy with his progress. He sleeps when he needs to and plays electronic games when he has the energy.


From now on, I will talk about Brendan on the blog using numbers. The day Brendan received his cord blood cells is described as day zero the next day is day + one each day post transplant is counted. Day + 100 is a very special milestone to a transplant child and their family. It is a major step towards recovery and one we hope to be celebrating in 98 days time.

Congratulations to Shaun and Danielle (Shaun is Brendan’s special friend who is also his Camp Quality companion) on the birth of their beautiful daughter Lana. We all look forward to meeting her.

Love to everyone
Cheers from Anna, Richard and Brendan.

HAPPY EASTER

Today is Easter Sunday. Brendan had his last dose of chemotherapy this morning. The Easter Bunny left eggs all over his room and during the day he left special surprises in the two-way cupboard that allows access between his room and the ward hallway.

The chemo and the radiation have started to take effect. While Richard and Brendan were organising an Easter gift for the nurses, Brendan felt ill and then vomited toxic vomit all over the nurse’s Easter eggs. Luckily, Mum brought two bags just in case. Brendan is refusing to eat so has started on 24 hour naso-gastric feeds. He is on large amounts of IV fluids to protect his bladder and flush the chemo from his body. Even having a shower wears Brendan out. He is sleeping on and off during the day. Overall his emotions are more stable since going off the high doses of steroids he was on. He is happy and chatty (though such times are becoming less frequent). Brendan is very easy to read when he is feeling OK: he sits in bed chatting to whomever is around; when he is unwell he hides under his blanket and tells you how he feels but mostly wants to be left alone. His favourite phrase is ‘GO AWAY’ when he fells unwell. He never whinges and has a great medical vocabulary - just now he is discussing the side effects of chemo with his nurse.

Brendan has been having lots of fun showing his nurse his favourite “You Tube” sites. His favourite is a song about banana phones sung by Harry Potter puppet characters. You can find it at: www.youtube.com/watch?v=JKf7pPj6T7M . It makes him laugh each time he hears it.

Lots of people have asked us about how Brendan’s transplant is going and how it will be done. What we understand is that the chemo and radiation have destroyed Brendan’s marrow. Without a transplant, the chemo and radiation doses he has received would be fatal. Brendan’s marrow space is “empty”. Now that Brendan’s marrow has been destroyed, the plan is that it will be replaced by new marrow which will grow from the cord blood stems cells he will receive on Tuesday. Cord blood will be given to him through his central line. The stem cells in the cord blood somehow know to go to the empty space in Brendan’s marrow. Some time over the next 10 to 35 days we will hopefully see signs that his marrow is beginning to engraft. First we will see a rise in his white cell count and his neutrophil count. This means that all is going to plan. Until Brendan’s marrow begins to recover, he is in danger from a multitude of issues. He could reject his new marrow or he could have no marrow recovery at all and the transplant could be a failure. The list of concerns and issues goes on forever; we really have to take each day as it comes – one step at a time. We are only at the beginning of a very complicated and worrying process. Every day will be a new day. Brendan will be given blood products to replace the blood he is not making. His own body is a major threat: all the bugs that normally live in harmony in his body could take the opportunity to take-over and make Brendan very sick.

Everything is going to plan for today. Tomorrow, Brendan can rest and recover a little before his big day on Tuesday.

Happy Easter to all our friends and family
Cheers from Anna





















I have added an information sheet on Stem cell transplants for anyone who is interested:

FACT SHEET STEM CELL TRANSPLANTS

A stem cell transplant (also called a peripheral blood stem cell or bone
marrow transplant -BMT) is a medical process used to treat a range of life
threatening diseases, including leukaemias, lymphomas, myeloma and other
serious blood disorders, and some solid tumours.
•
The purpose of a stem cell transplant is to either cure, or induce a long-term
remission of a disease.
•
A stem cell transplant involves replacing the primitive blood-forming cells (or
stem cells), usually found in the bone marrow with healthier stem cells. It is
from these cells that our blood cells (red cells, white cells and platelets)
develop. Stem cells may need to be replaced because they have been
damaged as a result of high doses of chemotherapy or radiotherapy in order
to treat the underlying disease. High dose therapy may be used to treat
disease more effectively, giving some patients a better chance of cure or long-
term remission. Stem cells may also need to be replaced if they are diseased
(for example in leukaemia) or defective (for example in aplastic anaemia).
•
Stem cells can be collected directly from the bone marrow, from the
bloodstream or from the umbilical cord blood of newborn babies (cord blood
transplant). In most cases stem cells are collected from the bloodstream via a
large vein.
•
Unlike a solid organ transplant (for example a heart or lung transplant), a
stem cell transplant is not a surgical procedure. The stem cells are given as an
infusion through a vein (intravenously), like a blood transfusion. From here
they make their way to the bone marrow where they recommence the
processes involved in blood cell formation.
•
Transplants can be autologous – where the patient is their own stem cell
donor, or allogeneic – where the stem cells are donated by another person
(a stem cell donor).
•
In an autologous transplant the patient’s stem cells are collected in advance,
frozen and stored and returned to them after they receive high doses of
chemotherapy. Most people have a single autologous transplant. Others may
have two or more autologous transplants, over a period of a few months. This
approach, called staged autologous transplantation, is used to help reduce the
chance of some diseases coming back (relapsing) in the future.
•
In an allogeneic stem cell transplant the most suitable donor is usually a
family member, often a brother or sister whose stem cells are as close a
genetic match (tissue type) as possible to the patient’s. This is called a related
or matched sibling donor transplant. However, only about 1 in 3 patients has
such a donor, so the donor may be an unrelated, but matched volunteer. This
is called a matched, or voluntary unrelated donor transplant (MUD or URD). If
an exact match with the patient’s tissue type cannot be found, a partially
matched donor can sometimes be used.
•
A mini-allogeneic stem cell transplant (also called a reduced intensity or
non-myeloablative transplant) uses lower and therefore less toxic doses of
chemotherapy and radiotherapy. This may be an option for some older
patients, or those with certain health problems who cannot tolerate a standard
allogeneic transplant.

Over 1,000 stem cell transplants are carried out in Australia each year. The majority
of these (over two thirds) are autologous transplants.
•
Stem cell transplants are carried out in specialised transplant units in metropolitan,
and in some regional hospitals (autologous transplants only). Care is provided by a
group of specially trained doctors, nurses, social workers and other allied health
professionals who together, make up the transplant team. Most metropolitan
hospitals have nurses called transplant coordinators who will help make
arrangements for the transplant.
•
Allogeneic transplants are associated with significant short and long-term risks. The
risks increase with age so they are generally only offered to people under the age of
60 years (a mini-allogeneic transplant may be offered to an older patient).
Autologous transplants are less complex and generally carry fewer risks. The
degree and severity of complications and side-effects depends on several factors
including the type of transplant and high-dose therapy used, the age and general
health of the patient and the stage of the disease being treated. The time to
recovery varies but may take as long as 12 months. During this time the patient will
see the doctor on a regular basis.
•
There are separate Leukaemia Foundation booklets called ‘Understanding Autologous
Transplants– A guide for patients and families’ and ‘Understanding Allogeneic
Transplants – A guide for patients and families’, which provide more information on
these types of treatments.
For further information, booklets or support, please contact the Foundation:
1800 620 420 or www.leukaemia.org.au
Updated: September 2007

LAST TOTAL BODY RADIATION

This afternoon Brendan will have his last total body radiation (TBI). For the last few days Brendan's has had twice daily anaesthetics followed by 45 minutes of preparation and then 45 minutes of radiation. The last two anaesthetics have been OK. The previous few really knocked him around. He has woken up angry and very hard to console. We needed to wait for the drugs to wear off. Fasting all day is hard for him and he is talking a lot about being able to have heaps of chocolate. He spends his time watching TV or playing computer games. He doesn't have a lot of energy. Overall he is doing OK. The radiation is knocking him and now he has started chemo as well.

Brendan is looking forward to Easter. We have had to reassure him that the Easter bunny will find him in hospital and that his eggs will be hidden in his room as he does not have a garden. Brendan is really quite concerned that he will be missed by the Easter Bunny.

Richard and I moved into more suitable accommodation. We are now staying at Randwick's Ronald McDonald house. The house is on the grounds of the hospital. We have a lovely airy room with our own bathroom. You can contact us on ph: 02 93821604 at the house. The phone number is a direct line to our room. We are staying in Rm 4.

The last few days have been really hard on all of us. Putting your child through radiation is a very difficult thing. We will be glad when this part of his treatment is over. Brendan is now in full isolation. If he leaves his room for treatment he must wear a mask. Everything is cleaned with alcohol wipes and everyone's hygiene must be of a high standard. After this afternoon Brendan will have four days of chemo to go.

Talk to you all soon.

Cheers from Anna.

REMISSION

Today we found out that Brendan’s leukaemia is in remission. His marrow showed a normal blast cell count of 1%. His marrow continues to show signs of Myelodysplasia. This is what was expected.

Brendan will begin his transplant conditioning on Monday. He will receive 6 rounds of total body radiation over 3 days which includes a general anaesthetic each time. This will be followed by 4 days of chemo, a day of rest and his transplant on the Tuesday after Easter. We then have a long wait for the cells to engraft in the marrow space before we start seeing signs of marrow recovery.

We are very pleased that our 'living in limbo-land' is over. Brendan is very well and back to his usual chatty self. He is getting on with some school work and enjoying getting out of his hospital room. Today we went back to Coogee Beach. We had fish and chips by the beach and then got Brendan to have a paddle in the sea. He was initially very reluctant to go into the water but by the time he had finished he was wet and sandy from head to toe.

The news that Brendan is in remission is fantastic but what lies ahead takes all the joy out of his recovery. There are no guarantees that his cancer will not return in the future. There is no guarantee that the cells will engraft. The list of horrible side effects and problems Brendan may suffer seem to be endless. 35% of children who undergo a transplant do not survive. It is almost certain Brendan will lose up to 20 IQ points and be sterile due to the total body radiation.

Brendan does have some very promising signs going into transplant. He is well, in remission and has a good weight. He understands much of what is being said about his illness and is very comfortable discussing what is going to happen to him. He is happy as long as no one is trying to put a tube down his nose or stabbing him with a needle.

We are going to spend the weekend trying to get out and about. We need to stay close to the hospital because Brendan's doctors are withdrawing him off his steroids and he may have a reaction. We're going to try and enjoy Brendan's last few days of freedom. On Monday he becomes isolated in his room for about 2 months. His visitors will be restricted and no children other than Kieran and Tara will be able to visit. There is a phone and an intercom in his room so that he can talk to people through his rooms windows.

For now, the news is positive and when this is all over there is a good chance that Brendan will be cured.

Love to everyone

Anna

SYDNEY WEEK 2

Richard arrived on Saturday as planned.We are all getting into the routine of the ward. So many things you assume will be the same as Adelaide, are not. We are getting used to the way the ward is run. Everyone has been helpful, kind and supportive.

Brendan's health has improved over the past week. He no longer needs antibiotics and his white cell and neutrophil counts are rising every day. This means his bone marrow is recovering. The biopsy tomorrow will give us all a clearer picture of what we do next. If all goes well, Brendan's pre-transplant conditioning will begin on Monday.

He is a lot happier within himself and has gotten some of his spark back. He really struggled for the first few days but gradually has come out of his shell. He now talks to people and communicates his needs without being angry all the time.

We have spent the first week getting to know the local area. Brendan (with wheelchair), Richard and myself walked to Coogee Beach and back on Monday. It was lovely to be out in the fresh air by the beach. Sydney beaches really are beautiful. There is a good choice of local restaurants and everything we need is a walk or a short bus trip away.

Brendan has been enjoying decorating his room. He decided that Pokemon characters should be painted on his window .

Brendan painting his window in his room to make it feel less like a fish bowl.

We can now all be contacted by email as we have now gone wireless. Brendan loves the idea of being able to play lots of internet games. He has been playing Dalek games on the Doctor Who website this morning.

Will be in touch soon.

Love Anna, Brendan and Richard.

SYDNEY AT LAST

Brendan and I arrived in Sydney on Tuesday morning. Brendan was admitted straight onto the ward at Sydney Children's Hospital. After a couple of days he has settled in and begun to get used to his new environment. He was really grumpy the first two days. On Wednesday he had a bone marrow biopsy. The plan is to wait another week, do another biopsy and hope his marrow has grown enough to start the transplant. The result from his marrow on Wednesday looks promising. He has started to grow new white cells and there appears to be no blast or leukaemic cells in his marrow.

Brendan will have another biopsy next Wednesday and if all is going well he will start his transplant conditioning on the following Monday. We may even get some time away from the hospital on the weekend before.

Overall everything is going well. It is very daunting as everything is so different to Adelaide. Brendan misses all the nurses on Brookman Ward. Everything is so much bigger and busier here.

A big thankyou to Toni for helping Brendan and I at the airport and a big thankyou to Deb for sitting with me until we got the news on his marrow.

Richard arrives in Sydney on Saturday and Brendan and I are looking forward to seeing him.

OUR CONTACT DETAILS

WARD C2 WEST Room 18

SYDNEY CHILDREN'S HOSPITAL

HIGH ST RANDWICK 2031

NSW

Ward no. 02 9382 1236

Direct No. to room our room 02 9382 1251

You can call us on the direct number to our room. We are not always there so please try again if you cannot contact us.

Talk to you all soon Love Anna and Brendan