Saving Zali

by Lisa Venables

  Chrissie asked pointedly, loudly and clearly if it was common practice for ketamine to be given to cancer patients without steroids. Confused and shocked, we looked at the doctors. I knew all the medications Zali was on. Steroids had stopped before we had even come into PICU. Amanda quickly grabbed Zali’s paper medical files and began to flick through pages and pages of information, searching for steroids.

  The pain director slowly answered, looking at Dr X.

  He said, ‘No, it’s not. It’s common practice to give ketamine with steroids unless there’s a reason not to give them. Without steroids ketamine can cause hallucinations. A ketamine drip without steroids would cause violent hallucinations.’

  Dr X stammered that because Zali had recently finished chemotherapy she thought she was still on steroids. I interrupted her and said that her last chemotherapy protocol had finished several weeks ago, and that she had not had steroids with this protocol anyway. It had been a long time since Zali had received steroids.

  The director then asked to speak with Dr X outside. My heart thumped hard and quickly inside my chest. I was so angry I was sick and sweaty. There was so much I wanted to say that would have been inappropriate but correct. Instead Andrew and I expressed our fury to each other quietly. Chrissie didn’t say anything further, but continued to check that Zali’s hands were restrained and organised for a dermatologist to come and see her so work could be done on repairing her skin.

  Directly afterwards we watched an earnest conversation held among all the doctors in PICU and the pain team director at the nurses’ station. Zali was taken off ketamine after this discussion and put back on fentanyl. She immediately relaxed. Within an hour her eyes were focused again and she could hear us. She stopped screaming and twisting and finally went to sleep.

  That afternoon the dermatologist came and examined Zali’s wounds as she slept. These new wounds provided an open port for viruses and infection to enter her body if they weren’t managed properly, so it was important to try to get them to heal.

  He prescribed a mild clear cream to keep them moist. He also said that the fish oil in her total parenteral nutrition (TPN) liquid food would also assist in healing the wounds but that they probably wouldn’t seal properly until Za’s overall health began to improve. He explained that a small amount of ketamine was very useful in a children’s hospital because it caused memory loss. When Zali had to be conscious for something painful or scary this was the drug of choice to minimise any further trauma. In small amounts it wasn’t usually a problem, though even the first time she’d had it for her ultrasound she had hallucinated that the fish on the mobile was floating past her. In large amounts such as in a drip, without steroids, it could cause formication.

  Formication is the tactile and visual hallucination that insects are crawling on or under the skin. This was why Zali was wriggling so much on her back and trying to scratch her skin. For three days she had been screaming because she thought she was covered in insects. The cruelty of it was overwhelming for us, and the damage she had done to herself posed a significant risk of infection she had no ability to fight. The horror of such a hallucination for a two-year-old took my breath away.

  That evening when the rounds were being done, Dr X led the team but stayed outside our room and kept the glass door closed. She checked twice that it was completely closed and turned her back on us to address the team.

  I opened the door and stood immediately behind her, watching and listening. She explained that Zali had calmed down after having her treatment changed and that the wounds she had inflicted on herself were being treated. As she quickly raced through the rest of the Zali’s day I interrupted. Loudly.

  ‘What she meant to say was that she mixed Zali up with another patient and thought she was on steroids for ketamine when she wasn’t. She has been hallucinating about insects under her skin for days.’

  Dr X’s face went white and I watched anger storm across it. The other doctors in the team discreetly moved on to the next room. As she turned to face me she was met by my look of pure fury. Her humiliation and anger at being exposed was no match for a mother’s outrage that she had hurt my child through pure arrogance. If she’d had any decency she would have spontaneously combusted under my glare. Andrew, who was standing next to me, was shaking with fury. His enormous hands were clenching and unclenching into fists.

  ‘You fucked up,’ Andrew seethed. ‘You don’t know what the fuck you’re doing.’ Andrew breathed heavily through his nose. Everyone was silent, anticipating what would come next. I was worried he would punch the wall. I watched as he used super-human strength to pull himself together.

  ‘Fuck off out of my sight,’ he ordered her.

  That was all that needed to be said. After a week of battling this doctor who hoped to make her name by revolutionising Zali’s treatment, she finally left us alone and we never saw her again.

  Chapter 35

  Friday 17 July 2009, 76 days in hospital

  29 days in PICU

  The next day we called Sharon the play therapist to ask her to come and see Zali. The play therapists are incredible. They usually play with the child for about twenty minutes to half an hour, distracting them from what is going on around them, or assisting them to understand it through play. They encourage the parents to have a break while this is happening but I always stayed with Zali. They brought toys with them and had toys the children could borrow.

  Sharon’s visits always cheered Zali up, but it had been a long time since we had seen her. I saw Sharon arrive at the front desk with her big clear box of toys. Zali saw her too and started waving to her. As Sharon was directed to our room I watched her walk over. Her face and body were a swirling mix of emotions and for a moment I didn’t think she was going to come in.

  As she opened the door a tiny bit and put her head in she asked softly if it was all right to come in.

  ‘Of course,’ I replied. ‘It’s great to see you. Za was really looking forward to this today.’

  She started to cry as she entered the room. ‘Oh, I’m so glad you’re still here. I didn’t think she had … I’d heard that she … I just didn’t know if she was still in the hospital.’ She pulled herself together.

  ‘Hello, Zali, it’s good to see you. I’ve brought you some toys to play with today. Should we have a look?’ she continued as if she was just a childcare worker addressing a toddler in a centre. Zali responded as if she was just a child playing with new toys and nodded eagerly to see what was in the box.

  Sharon played with Za for about fifteen minutes before Zali was too tired. When she finished she gave Za some bubbles and some clear containers of paint that had been watered down and had glitter added. When they were shaken the glitter fluttered around and coloured bubbles formed. These were Zali’s favourite toys and Sharon had picked them out carefully for maximum pleasure. Her kindness made Zali’s day.

  Chapter 36

  Monday 20 July 2009, 79 days in hospital

  32 days in PICU

  And then there was Mercy. Mercy, Mercy, Mer-cy.

  Mercy was part of a group of Asian friends with melodic-sounding names. There were Ang, Fang, Hang, Hung, Ung, Ong and Mercy. They were like the classic perfect Asian students at school. They worked very hard. They were never tired in the middle of the night. They did everything 100 per cent perfectly, but when there was no work to do they loved a laugh and a gossip.

  Mercy in the coffee world would be a ristretto. Short and very strong. I had never met anyone as intense as her. She was a short Asian lady with thick straight black hair and perfect posture. The first time Za had her we had a massive blow-up. Well, I thought it was a big argument. I think that’s just how Mercy gets her point across, no hard feelings intended.

  Andrew was already in the room the first time I met her. As I entered the room with our coffees, I gave my hands two squirts of the antibacterial pump near the door and came in. Mercy upped me immediately. She told me I couldn’t have a coffee in the room. Th
is was an emergency burns treatment unit and what would happen if I spilt the coffee on Zali? She went on to say that she had seen this happen before in this unit and I had to drink my coffee outside.

  I was annoyed and just dumped my coffee in the bin outside the room and re-entered. She watched me and I watched her. She then told me if I wanted to come into the room I had to go outside and clean my hands properly. The two squirts from the dispenser were only for emergencies. I had to wash my hands properly in the way outlined on the wall for two minutes to make sure my hands were clean.

  I was getting pretty peeved by now and left to do so but not happily. As I came back into the room for a third time I didn’t close the door properly. Mercy got up and closed the door. She told me that every time I came into the room I had to close the door properly so it was sealed. The room had negative pressure. I didn’t understand what negative pressure was. She explained that it meant the air conditioning didn’t blow into the room, possibly carrying with it viruses from other areas, but only blew out, leaving the air in Zali’s room as virus-free as possible. When I left the door open it didn’t work properly and viruses entered through the air.

  By now I was well and truly frustrated with her. I felt like she was accusing me of being deliberately careless and glib about my daughter’s health. I asked her what about the doctors who didn’t clean their hands properly when they came in, or when a big group of them came in and left the door open?

  She was equally fierce about this. She demanded to know who had done this and when. I outlined that at each round they often all came in, a group of at least six. They didn’t wash their hands, but just squirted a bit of antibacterial cleanser onto the palms of their hands. One of the doctors I was talking about was working that day.

  Mercy immediately left and challenged him. I could see them from where I was sitting. He was taller than her but I could see he felt very small right then. As she talked to him in an animated way he just nodded. He had a couple of goes at saying something but it was to no avail. There was absolutely no chance to interrupt her. She had her say. He nodded that he had heard her and walked away, and she came back into the room. After washing her hands thoroughly and closing the door completely behind her, of course.

  She told me she only cared about Zali and doing what was the best and right thing for her. Zali had a virus that wasn’t going away and this was very bad because she was already so unwell. She was sorry if I wasn’t happy but she was going to take very good care of my little girl. She said she knew I would understand because I loved her too and only wanted the best for her.

  I could see in Mercy’s determination that she would absolutely do the right thing for Za. Once I got over my shock I couldn’t help but like her. When we had Mercy everything was done quickly, correctly and 100 per cent in Zali’s best interests. She was a ristretto but by gosh she was good, and her intense desire to be perfect still makes me laugh today.

  My mornings in PICU were able to start a bit later, at about 7.30 am, when I’d arrive and get a layperson’s briefing about the night before. I asked about Za’s blood counts and played with her for a little while. Because she woke at 4.30 am for a morning X-ray of her chest and lungs she usually went back to sleep at about 8 am for an hour. Andrew came into the hospital at about 8.30 or 9 am. This was perfect, because I was able to have a quick brekkie with Lachlan at the hospital and walk him to school. Even when neither of us was there for a small amount of time, Za was constantly being taken care of by the nurses.

  Chapter 37

  Friday 24 July 2009, 83 days in hospital

  36 days in PICU

  Zali had many specialists working away in their offices and laboratories on things that were going wrong with her body. Most of the time I couldn’t keep track of what was being done and by whom, but I knew and trusted that the cumulative result was that Zali was still alive after such intense morbidity. People had come because of calcified bedsores on her back, and her high heart rate was always of interest. Her arteries were always being checked by ultrasound because of her blood pressure problems, and something was always being added to some IV to balance out some problem. There was always work going on behind the scenes that we weren’t aware of.

  Viruses were our constant enemy. It was hard to tell if the virus Za had was the same one this whole time. Sometimes there was more than one. Antibiotics were pointless for fighting a virus but they did keep further infection at bay. The most worrying antibiotic was gentamicin, a broad-spectrum antibiotic. The side effects can be deafness, so the levels that were building up in Za’s body were carefully measured.

  For most of the time we were in hospital Zali was on antibiotics. The viruses caused the symptoms of LCH to intensify, caused further infection in her body and possible septicaemia. They were causing fevers and challenging her non-existent immune system, which made her already fast heart rate increase.

  None of these effects were taken lightly. In PICU they decided to tackle the problem. I guess with so much that couldn’t be fixed quickly it presented one of the few opportunities to resolve something. Whispers of a Dr Melanie Wong had been swirling around us for a while, and several specialists mentioned that she would be the person to fix the virus. Professor Kellie was consulting her, the PICU doctors were speaking with her, and every specialist who came was interested in what she would have to say and how it would affect their work. Rumours of her expertise in this troublesome field spread and increased around us until everyone we knew was mentioning that we really must see Dr Melanie Wong.

  Like the mysterious Yoda from Star Wars, one morning she appeared at our door in a cloud of mist with the sunlight shining in from behind her. No, she didn’t appear like that. But the eminence associated with her made her arrival feel like that. She just opened the door and came in like everyone else. I’m sure when she’s brushing her teeth in the morning she doesn’t feel this special, but to us it was the pinnacle of a long build-up.

  Dr Wong was the laboratory director for the Immunology Department. She was a very short, petite, in-control woman of incredible status. To a family fighting cancer, immune function is everything. It is the marker of health. It keeps viruses at bay, and lack of it causes an inability to recover from chemotherapy and steroids. Dr Wong was one of only seven specialists in the Children’s Hospital at Westmead in this significant area of study.

  She told me she had been kept appraised of Zali’s case. The best solution she could think of would be a treatment of IgG (immunoglobulin G). She offered it as if it was a very simple treatment for a complex problem. She was almost embarrassed by it.

  The theory behind this treatment was that Za was suffering from a virus that exists in the community. As someone with an uncompromised immune system fights the virus they develop specific IgG antibodies that circulate in their blood. Zali would get a combined IgG donation from four blood donors. It comes in a pack similar to a blood donation except it looks like egg white. IgG is one of the blood products taken from a donation. By taking four people’s IgG, Zali might get the antibodies from one of those people who fought the virus, and if we were lucky all four people may have fought it. If she improved only mildly, one of those people would be contacted by the blood bank and asked to donate just their IgG, which could be taken regularly to support Za.

  We were going to borrow some immunity. Well, not borrow, because we could never give it back, but that’s the thing about generosity in hospital. You can never repay the people who help you when you’re there. Every day I was blown away by the generosity of people who donate blood. I don’t even think they realise how generous they are being.

  The treatment began that afternoon and it was hard to tell straight away whether it was working. But the next day when I arrived at 6.30 am I had a new Zali. She was bright and perky and smiling. She felt a lot better and even her skin colour was better. Her energy level was higher and she hadn’t had a fever at all during the night. I was amazed. Her blood count showed she still had the viru
s but was improving. The following day she had another treatment of IgG and the virus was gone. It was incredible science. We had borrowed the immunity of four people and they had pushed Za over the line and given her some strength to keep going. If she had strength, I had strength. If I could keep going, my family could keep going.

  What an amazing woman Dr Melanie Wong is.

  After this visit, we were very lucky to have a nurse with Mary Poppins-like qualities to care for Zali. As I came into the room one morning I could see that we had a new nurse I hadn’t met before. I could see Zali watching her and smiling as if she were an old friend and the new nurse introduced herself to me as I entered. Her name was Tina. She was in her fifties with short dyed red hair. She wore sensible round glasses and sensible shoes and had an overall sensible demeanour. I was a little intimidated by her apparent severity. She definitely didn’t look like the type of nurse who would buy Za bubbles on her day off, or indulge her to keep her happy. I wasn’t sure what Zali saw that was making her so relaxed but I soon found out.

  Tina was rock solid. She had been a nurse her whole working career and was an expert who gave lectures to doctors and nurses alike in particular fields. She was often off training and lecturing on new techniques, technology and theories to captivated audiences.

  Nothing ever went wrong when Tina was in control, and this security and dependability rolled out of her in confident waves. Zali had now been in the PICU for more than a month and it was making people very nervous, but not Tina. She was thoroughly in control of a situation that often easily got out of control. Throughout the day Tina would write up various requests for doctors and place orders for blood products and medication. Her reputation always preceded her, and these requests and orders were filled in quickly and delivered immediately. She organised Zali’s medications and monitored, picked up and resolved problems before Zali even noticed anything was wrong.