So instead of going to him she just stood there, rooted to the spot, her own mind frozen.
Mathew climbed inside the back of the police van, trying to look back at her. She could have sworn he was trying to say sorry, but she refused to meet his eyes.
Then he was gone and they locked the door. The senior officer came over to talk to both Catherine and her grandmother, saying “We will hold him in a cell in the local police station and arrange for a psychiatrist to assess him as soon as possible and work out what to do.
“He may have to be hospitalised in Callan Park for the time being where he is not at risk of harming himself or others.”
Catherine nodded. Then realising she was still holding the gun she passed it to the officer.
The following morning a judge gave orders, that following the preliminary examination, Mathew was to be held in Beveridge House in Callan Park, a high security facility for the insane. There he was to undergo further evaluation, for an indefinite period until they determined what treatment was required.
Catherine had stood in the back of the court, unable to speak and still unable to meet Mathew’s eyes, she could find no words to say to either help or harm him, it was like his confinement and madness had frozen over a part of her soul.
It was left to her Grandmother Patsy and her own Mum to try and explain the circumstances and the need for compassion. All that day Catherine sat in a chair barely moving, leaving it to Lizzie to visit and care for Amelie and for her Gran to manage the hotel. She ate the food that was put in front of her mechanically, she did not cry, she just sat and stared and wondered where her life had gone.
Finally in the evening Lizzie came to her and made her stand up, shower and go to bed, saying. “It is time for you to return to see your daughter.”
The following day, when Catherine came to hospital to visit her, Amelie did not ask where he Daddy was. Instead she asked that her red car and also the house for it that her Daddy had made be brought into the hospital and put alongside her bed. It was as if she knew her father could not come and somehow the thing he had made for her birthday would have to take his place.
To Catherine this seemed even more heart wrenching, as if Amelie knew that this hospital room had become a final bedroom and, if she could not have her father, at least she would have something in this room that reminded her of him.
The doll’s house, with the car inside took up a big space in the room. A couple of the nurses and doctors grumbled that it was in the way, but in the end they understood that if it made this little girl happy that was a small price to pay.
Last Chance – A Transplant
Patsy and Lizzie had discussed between themselves how best to support Catherine and Amelie over this time and had agreed that one of them needed to focus on going to see Mathew every day and also putting time in at the hotel, to at least keep it turning over enough money to pay the family’s bills, and the other needed to focus on supporting Catherine and Amelie.
As Patsy knew the people of Balmain from more than four decades of living there and also had known Mathew since he was a boy she took on this part, she had spent an hour with Ella working out the roster yesterday, she had also taken it upon herself to directly manage the restaurant and catering side, though she would draw on Lizzie’s knowledge here. She would also do back up bar work as required.
In addition she had set aside two hours each day just after lunch to go and spend with Mathew, to get him to tell her about all his ideas, even his most crazy ones, until she understood both his concerns and whether he had ideas that could be useful. She would also pass on the news from Amelie and Catherine to him.
Catherine appeared to be too angry with him to talk directly to him at this stage even though Patsy knew it would pass.
Yesterday Patsy had spent over two hours talking to Mathew, telling him about Catherine and how upset she had been, telling him about Amelie and what the options there were and asking his opinion.
She had also asked him to tell her about all the things he had been reading and she found him surprisingly lucid about these though wracked by guilt about his own contribution. He told of studies which showed the effects of the chemical agents which had been sprayed in Vietnam and how he had been repeatedly drenched in them, the direct effects of the chemicals and a particular contaminant called dioxin which had definitely contaminated batches he had been exposed to. He explained how there was now increasing evidence that dioxin could damage a person’s DNA and be passed on to the children that way.
So he was sure that defects in Amelie’s bone marrow had been passed to her from him as a result of these poisonous chemicals and now they had to find a way to repair her DNA. He had read about research being done by the US and Australian Military to investigate treatments for these things and how, even though it was top secret he knew they had found things which would work and how he needed to find these.
He even told of a technique that he had read about where the cells of a healthy donor which matched the sick person could be injected into the sick person, it was called a bone marrow transplant and they were just starting to try it, mainly overseas, but also in some Australian hospitals. While Patsy did not understand the complex science she could see that this idea had logic to it. She promised she would pass it on to Cathy to tell to the doctors.
That night she reported back on all that Mathew had said, saying she wanted Lizzie and Cathy to at least ask the doctors about whether it was an option to try a bone marrow transplant.
Two days after Catherine watched the judge order her husband into confinement in a mental hospital Catherine found herself at a meeting with the doctors to discuss the remaining treatment options for Amelie. Now that Mathew could no longer participate she asked her mother to come with her, while Patsy stayed at the hotel.
The doctors explained that they had stabilized Amelie’s condition with the blood transfusion which had brought her red cell count back up to the normal range and they were now of the opinion that they should try at least one more lot of chemotherapy to see if they could get the tumors to shrink again, as they were starting to run out of other choices.
After trying a final round of chemotherapy the only treatment options that really remained were things that were little more than experimental. These included immunotherapy and some new chemotherapy agents. So they suggested they make a final treatment attempt using a really high dose of chemotherapy, along with immunotherapy as a last ditch attempt to stop the cancer or at least slow it down greatly.
Since Mathew’s outburst Catherine found herself asking more questions in her mind rather than just accepting that the doctors knew best in all things. Not that these people were arrogant or unwilling to listen, it was just that all that they had tried was failing.
So now it seemed to Catherine that all they had to offer was more of the same chemotherapy at even higher doses, combined with some new immunotherapy agents to help Amelie’s body recover.
As she questioned the oncologist explained that the purpose of the immunotherapy was to boost the production of Amelie’s own immune cells and also help the chemotherapy drugs to kill the damaged cancer cells. That way they hoped she would recover from the chemotherapy faster and the treatment would also aid the process of removing the damaged cancer cells and also getting her own bone marrow back to working properly in producing new red cells to carry oxygen and white cells to fight other diseases.
They explained that part of the problem was that the treatment was continually damaging Amelie’s own immunity to common infections and so they now had to start to be really careful that she did not catch some common disease which in a healthy person would be harmless.
Catherine and Lizzie kept burrowing in to what they were saying. Catherine said, “So are you saying that because of the treatment she has already had, along with the extra you want to give her, that something like a common cold could make her really sick and even kill her.”
The oncologist replied, “That is
often what happens with long term cancer patients, that it is not the cancer that kills them but an infection like a pneumonia which we could otherwise control. Some people even consider it a blessing when that happens as, by leading to death, it spares the person continued suffering.”
Catherine felt her mind reeling, even though she had always known that death was a possibility, their language had now changed to talking about as if it was inevitable.
Lizzie burrowed in again, “So are you saying that if we give her more chemotherapy and particularly at an even higher dose we make it more likely that Amelie will die from some other infection.”
The doctor looked a bit startled at this logical leap, “Yes, I suppose you could say that.”
Catherine continued on, “So what is the point of further treatment, more chemotherapy, if it only damages her immunity further, what is the chance that it can still cure her?
The doctor replied, “It is now less than ten percent I would think. There was originally around a three quarters chance that we would get long term remission, but I am afraid that has now become very unlikely.”
Catherine continued, “So, why are you proposing that we give her more of the same treatment? Last time it made her really sick. As well as all her hair falling out she had severe vomiting and diarrhea for days and lost lots of weight, not to mention that she felt really unwell and miserable for almost two weeks.
“Is all you are offering us? That she gets more of that only this time it will be even worse, and yet the amount she suffers from the treatment she will almost certainly die anyway. If so why are you proposing it?
The doctor replied, “We are just trying to slow the cancer down and buy her more time, maybe a few more months of life if it works really well. It would be foolish to hope for more.
“You have to start preparing for the fact that your daughter will be unlikely to make another Christmas, no matter what we do. You should prepare yourself, your husband and Amelie for this.
Catherine felt crushed, she sat in the chair with her face in her hands, she did not want to hear or think about this. She supposed she must.
She started to feel more and more of what Mathew was going through; rage against life’s unfairness, except that in his case he blamed himself too.
As she thought of him she remembered that he had told her Grandmother something that he wanted them to ask the doctors about. She must try and remember what it was that Patsy had said he was talking about and wanted to ask the doctor about, something about a transplant.
Lizzie was not willing to leave the conversation at that. “Doctor, you talked about various experimental treatments, new drugs, this thing called immunotherapy, perhaps other things. Could you please tell us all you know about these things?”
Catherine could see the oncologist now felt he was on safer ground. He started to go through and describe the other options in more detail. None of them sounded of much value to her, little more than vain hopes, unlikely to give a cure and just involve more unpleasant treatments.
Her mind was half inside her head and half listening until the words, “Bone Marrow Transplant were said. That was what Patsy said Mathew had been talking about.
She turned and looked directly at the doctor, “Please tell me about this bone marrow transplant.”
The doctor replied, “Well it is still a relatively experimental treatment. It is high risk, because it involves using high doses of the chemotherapy agents along with radiation, to kill all the remaining bone marrow and cancer cells in the body. Then, in a couple days, when all these cells in the bone marrow have died along with the cancer cells, new healthy cells are given to the person. Provided the body does not reject them and they start growing inside the person’s own bone marrow they can replace the person’s own cells from before the treatment which killed them.
“So, if we can kill all the bad cancer cells and then get the new cells not to be rejected, the result is that after that time the patient has these new stem cells in their bone marrow that are no longer their own but came from that other person. As they keep growing and reproducing they form a new and healthy population of red and white cells.
“However, the downside is that if the cells do not take then we have killed off all the remaining bone marrow cells in the person’s own body. If that happens then, within a few weeks at most, the person will die. That is because they can no longer produce the red cells in their blood which carry the oxygen, or the white cells which give them immunity or the platelets which allow their blood to clot.
“We have already thought about this option, not that we have tried it before in this hospital. But in the last few days we have been researching all other choices. However we have one big problem. In order for the new cells to be compatible and start growing in your daughter’s body they have to match her own cells in some important ways, this matching is what we call histocompatibility. It means that the surface of these cells have to appear the same as the surface of the cells in Amelie’s own body or else her own body will reject them as foreign and kill them before they can establish.
“So we have done some preliminary screening on what we call the histocompatability profile of your daughter, a thing called the Major Histocompatibility Complex.
“Your daughter has a very unusual version, something that is rarely seen in Anglo-Saxon Australians, it is more found in Pacific Islanders and New Guineans, but then she also has some European factors that are not normally found in these islander people. So, as a result, we have checked all the registered donors to see if we have a match. So far we have been unable to find anyone who appears suitable. Those few who we have found with the typical Pacific islanders complex, have the wrong factors for the Amelie’s Anglo-Saxon heritage. So, while we could try a less than perfect donor, we would have to use very high doses of anti-rejection drugs to have any chance and, even then, it is still likely to fail.
“If that happened all that would result is that we would kill your daughter even faster in trying this bone marrow transplant treatment.
“We will of course keep looking and should we find a suitable donor we will let you know. We would also encourage you to have yourselves tested along with all your friends and relations in the event that some of them have the right histocompatibility complex factors.
“But at this stage I would not like you raise your hopes about this only to have them dashed yet again. That is why I have not discussed it so far.”
Catherine nodded to the assembled group, “Well if that is all that is left to us, then that is what we must try. I do not want my daughter to have any more chemotherapy unless there is a real chance of it curing her, it is unfair on her to put her through it unless it has is a long term purpose.
“However as soon as possible I would like you to test me and see if I am a suitable donor. I am sure her father will also want to be tested as soon as possible. I will also ask all my other family and friends to do the same. So we just have to hope that one of us has the correct combination.
“Could you also keep looking in other places for suitable donors, perhaps in places like New Zealand, Fiji or Hawaii such people are with the right combination of factors are more common.
Donor Required
Two weeks went by while Catherine arranged for all her friends to be tested, Lizzie did the same with all her extended family, her mother, the other children, even Robbie though unrelated, and her uncle and his children who lived in Melbourne. There were good matches to some people except for the one critical genetic component, what the doctors called the Melanesian associated genes.
The doctors checked transplant registers in other Australian cities and New Zealand but no matches were found there either, and it was not considered feasible to look further afield as the ability to get a donor to Sydney, even if one was found, was too hard. The chance of finding a donor with the right genotype outside the western Pacific seemed remote.
At the same time Catherine and Lizzie had taken to investigati
ng everything they could find out about bone marrow transplants and tissue matching. The results were variable but when the match was good then the results were surprisingly good, up to 80% success, whereas disastrous for poor matches. They knew they could not subject Amelie to a transplant unless the match was good.
They had both become walking encyclopedias about the science of histocompatibility and understood that this thing was referred to in the text books as HLA typing and measured things called antigens on the surface of the white cells, and that they fell in groups based on four closely linked genes on what was called Chromosome 6, a particular one of the 23 human chromosomes which made up a person’s DNA. They had found plenty of people who could match Amelie for her first three genes, including Catherine’s own adopted father; it was the fourth one that eluded them in the right combination with the others.
The knowledge did not help Amelie but at least it gave her and Lizzie a common purpose and something to do in the many hours they shared, both while sitting and talking with Amelie and amongst themselves. At night they would sit up at home for hours with Patsy and they would tell her news of Amelie and their day and she would tell them about Mathew.
Catherine knew she must go and see her husband but she still could not bring herself to. On the one hand she felt anger towards him for what he had done, the putting himself in harm’s way for no purpose. But in another she felt a strange sort of admiration for his courage to risk anything to save his daughter. She also knew there was nothing he could do for his daughter right now. Therefore she procrastinated about going to visit him and trying to arrange for him to be able to visit Amelie.
She knew from her Grandma that he was mostly calm but with occasional periods of manic craziness, when he still made threats, but that these had been reduced by some medicine he was on, even though he did not like it much because he said it made him dopey.
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