The Ties That Bind

by Lexi Landsman

  Then they were on the ground, their backs squashing fallen grapes beneath them. After, they lay naked and looked up at the glassy sky through the tangle of vines, and Frank had never felt so whole.

  23

  THE ONLY thing worse than discovering their child had cancer was learning at the same time that his best hope of survival would come from the cells of someone else. And if those cells weren’t found within his family, they would have to pray that among millions of strangers around the world, they would find one perfect stranger to be his perfect match.

  Courtney and David sat across from Doctor Cooper, Matthew’s haematologist, as he explained the outcome of Matthew’s tissue-typing results. Courtney was hanging on to his every word hoping that in the next sentence he would offer them a straightforward solution.

  ‘I’m going to try to simplify this as best I can. We each have several proteins or markers located on the surface of our white cells,’ Doctor Cooper said, drawing diagrams on a notepad to illustrate his explanations. ‘The one of particular importance is called HLA, or human leukocyte antigen. These markers have the ability to tell the difference between your cells and someone else’s. There are six HLA antigens that have been identified as having an important role in transplantation.’ He wrote down twelve letter and number combinations. ‘We inherit a set of six – called a haplotype – from each parent, so six from our mother and six from our father. We know that the more of these antigens that match, the better the engraftment of donated marrow.’

  Courtney was staring at the doctor doing her best to follow even though she could hear rushing in her ears. ‘What is engraftment?’

  Doctor Cooper raised his thick grey eyebrows as he spoke. ‘It’s when the donated cells make their way to the marrow and begin producing new blood cells. A close match between the recipient and donor reduces the risk after transplant that the patient’s cells will attack the donor’s cells or vice versa. That’s why it’s crucial to find a donor with as close to a perfect HLA match as possible.’

  David rhythmically twitched his leg and she could feel it tapping against her ever so slightly, the movement an echo of the unease she was feeling, as if her insides were swaying from side to side, back and forth, churning like a wash cycle.

  ‘How do we find that match?’ David asked.

  ‘This is where it gets tricky to explain. There are so many HLA combinations that the best odds of matching occur in a sibling with the same parents. As you have no other children, we’ll have to look on the registry of volunteer donors. Even though there are twenty-five million people listed, a lot won’t have complete HLA details because they were typed years ago and HLA typing is a rapidly advancing field. So, let’s say we find three possible matches worldwide. Chances are we’ll need to conduct further typing to confirm the match, and in an ideal situation, after further investigation, at least one of those possible matches would be willing and able to be a donor.’

  Courtney felt a wave of relief. Twenty-five million people meant twenty-five million chances of finding a match, and those numbers seemed promising.

  Doctor Cooper put his pen down and clasped his hands. It was only slight but Courtney noticed the subtle change in his body language, a sudden tenseness in his jaw, the way he held his head, the sense that this was the part of the consult he had been avoiding. ‘However, you’ll recall that we asked both of you to be tissue-typed after we got Matthew’s results back. That was because half of his HLA antigens were commonly occurring and half were very rare. That meant that we saw much greater difficulty finding a match for Matthew on the donor registry. We’ve found that the HLA haplotype he inherited from you, David, is a common one. But the haplotype he inherited from you, Courtney, is rare.’

  Courtney rubbed her eyebrows and squeezed David’s hand. The man had quashed her optimism in just a few words. ‘What does that mean for Matthew?’

  ‘We will certainly search the database, but with this rare HLA type and given that Matthew has no siblings, we recommend that you ask your relatives to be tested. We’ll need to put together a family tree and see if we can find a blood relative who shares your rare HLA haplotype and also has the common one that Matthew has inherited from David. We wouldn’t normally do this, but with Matthew’s unique case, I think it’s worth the chance.’

  David’s leg twitch became more intense and Courtney rested her hand gently on it to try to calm him. ‘And what happens then?’

  ‘You and your relatives have the choice to be tested purely for Matthew or you can also sign up to the bone-marrow registry in the hope that you might be able to help someone else in need in the future.’

  ‘We’d definitely like to join the registry,’ Courtney said, speaking for them both. ‘We’d do anything to spare anyone else going through this.’

  The doctor opened his drawer and handed them some pamphlets. ‘That’s very kind of you,’ he said, smiling. ‘Testing is a simple blood test. And there is now another option besides bone-marrow harvesting when donating. You’ll find some information in the pamphlets about a non-surgical procedure called apheresis, where blood is taken out of one arm and filtered through a special cell separation machine that removes the stem cells and returns the remaining blood and plasma back to the donor.’

  Courtney wiped her sweaty palms on her jeans and closed the booklet, looking around his office for the first time since she sat down. It was large, with blue walls that were adorned with certificates and children’s paintings. How many families had sat there, she wondered, like they were now, hoping to find the markers in someone’s blood that would save their child’s life?

  ‘So, should our next step be contacting my relatives?’ David asked.

  The doctor shook his head. ‘No, not your relatives, David. Only Courtney’s side of the family.’ Doctor Cooper turned now to face Courtney. ‘Because Matthew inherited the rare HLA type from you, Courtney, your relatives will have the greatest chance of being a match.’

  Courtney rested her head in her hands and David rubbed her back. She could feel the tears coming, thick and fast, a tsunami of emotion welling in her eyes.

  ‘Courtney’s adopted,’ David said softly. ‘We don’t know anything about her family.’

  Courtney was glad her eyes were covered so she wouldn’t see the doctor’s changed expression at the revelation. He took a long pause before speaking.

  ‘I see,’ Doctor Cooper said finally. ‘Well, there’s no harm, David, in having your relatives tested. And perhaps, Courtney, you could look into your adoption and maybe track down your family. But even so, family testing is still a long shot. Normally non-sibling relatives are no more likely to match than strangers. It’s only Matthew’s combination of a common haplotype from David and a rare one from you that makes it worth pursuing at all.’

  Courtney wiped her eyes and looked up through the fog of her tears. Doctor Cooper unclasped his hands and sighed heavily. ‘Look, I could give you the statistics, but when it really comes down to it, this is a game of luck and chance. The key is to remain hopeful.’

  Courtney left the doctor’s office resolved to contact all of David’s relatives. If this was a game, she would do whatever she could to stack the cards in their son’s favour.

  24

  DAVID stepped outside their home to get some air. He stood in their driveway and gazed back at his house that looked the same and yet felt completely different. He had a strange out-of-body sensation, as though he were watching himself through someone else’s eyes. He wanted to go for a jog to escape his thoughts but instead he found himself dialling Doctor Anderson.

  When the receptionist answered, David lied and said it was urgent.

  ‘Is everything okay?’ the doctor asked hastily.

  ‘We haven’t told Matthew about his diagnosis yet,’ David said plainly, without even going through the pleasantries. He had the sense that he would come to know this doctor well, so why hold back phone calls like this one?

  There was a pause on the phon
e and David wondered if the doctor was annoyed. ‘Parents never know how to tell their children,’ he replied patiently. ‘We don’t have the words to say these things. Some parents prefer it if I tell them. Would you like me to do that?’

  David thought for a moment and then realised that would be even more cowardly. ‘No,’ David said, ‘we’ll tell him ourselves. But thank you.’

  ‘You should tell him soon,’ the doctor cautioned. ‘It can be very overwhelming to see the other children in the ward, especially since most of them are further along in their treatment. It’s best to prepare him.’

  ‘How do they cope? I mean, he’s just a child. How are they supposed to absorb something so life-changing? So scary.’

  ‘Children are surprisingly resilient. It takes a long time to absorb. Every child is different, so there is no right way to break the news. You and Courtney are wonderful parents and all he needs to know is that you’ll be right beside him through everything.’

  David’s heart felt heavy when he ended the call.

  ‘David,’ Courtney called out from the front door, catching him staring into the distance. ‘I couldn’t find you. Come in, we’re about to eat,’ she said as she walked towards him. ‘I just finished calling the list of our,’ she hesitated, correcting herself, ‘of your relatives.’

  Courtney’s face seemed to have aged overnight. The usually faint frown lines on her forehead were more prominent and she had dark bags under her eyes.

  ‘Everyone?’ David asked.

  ‘They all agreed to be tested.’

  David felt awash with an emotion he couldn’t quite pin down. Relief? Dread? Hope? Everything felt muddled. He was surprised Courtney had found the strength to make the calls.

  ‘Thanks for doing that.’

  ‘You have twenty-two relatives that meet the donor criteria.’

  He kissed her freshly washed hair, feigning a sense of hope despite knowing that the odds of an extended-family member being a match were incredibly slim.

  ‘My dad wants to be tested too. I didn’t have the heart to tell him that there’s no point. I haven’t counted him in the number of relatives.’ She covered her mouth with her hand, the way she did when she was anxious. ‘It’s such a shame,’ she said after a long silence.

  ‘What’s a shame?’

  ‘That you have twenty-two chances of saving Matthew and I have none.’

  ‘Courtney, don’t be like that. We’re not on teams. We’re in this together.’

  ‘I know,’ Courtney sighed. ‘It’s just that he’s inherited the rare HLA type from me, which means it’s my relatives who would have the greatest chance of being a match and I have no blood family. It’s so frustrating not knowing anything about my genetics. I just feel so disempowered. By the way, I told your relatives that we hadn’t explained it to Matthew yet. So, they know how important it is to keep it a secret.’

  David’s chest tightened. It felt like there was a crack all the way down his ribcage around his heart. He didn’t want to tell her what the doctor had just said but he had no choice.

  ‘Courtney, Doctor Anderson said that we should tell him now. We can’t wait for the family to be tested. We need to be truthful with him.’

  Courtney leaned against a tree, steadying herself. ‘I’m not ready for this,’ she whispered. ‘We need more time.’

  ‘We don’t have more time,’ he whispered back.

  ‘We’ve always done everything right,’ Courtney sighed. ‘He’s been such a good child. He’s never done anything wrong. What did we do to deserve this?’

  David wondered the same thing. ‘Nothing we’ve done has made this happen. We just need to stay positive.’

  ‘How will we tell him, David?’ Courtney asked, her eyes welling up.

  ‘I don’t know. We’ll have to find the words.’

  She stepped forward and hugged him. They held each other and David buried his head in her neck, breathing in her vanilla and rose scent.

  ‘I’m just not ready for this,’ Courtney whispered again. He could feel her body trembling and then she suddenly went still.

  ‘Mom,’ Matthew uttered as he stood in the doorway, looking at them in confusion. He took in his mother tears, their embrace, his father’s red eyes. A glaze of worry set into the folds of his expression. ‘Why are you crying?’

  David couldn’t speak. He looked at Courtney. ‘Sweetheart,’ she said, her voice delicate, ‘your father and I have something we need to tell you.’

  25

  MATTHEW had always been an inquisitive child. Like his father, he liked to understand how things worked instead of learning parrot-fashion. So, all through his son’s childhood, David had fielded his many questions, ranging from why the sky was blue, why humans had two legs and dogs had four, and how aeroplanes stayed in the air, to why dinosaurs were extinct and what formed rainbows. There were many prickly moments when David found himself making things up just so he didn’t look like he was unsure of the answer. David was quick to buy Matthew general knowledge and ‘how things work’ books, which his son had read every night until he became obsessed with soccer. Just three weeks ago, Matthew had gone with David to work during his school holidays and proceeded to ask an onslaught of questions about eyes. At least it was one area in which David did have most of the answers.

  David had been annoyed by Matthew’s endless questions that day, but now he would answer any question his son had, over and over and over again, just to have that life back. He would do anything not to be standing in his son’s room trying to find the right words to tell him he had cancer.

  Matthew had an enormous grin on his face. When David said they needed to talk to him about something serious he had jumped to a very different conclusion.

  ‘The scout called, didn’t he?’ Matthew said beaming. ‘I knew you were acting strange for a reason. He asked me to try out? Come on, tell me.’ Matthew spun his soccer ball around on his finger. ‘Spit it out, Dad. I’m dying to know.’

  Dying. The word was a knife. His son was so blissfully unaware of how much was about to change. David felt sick all over, as if he were in the throes of an illness. He felt feverish and flushed, nauseated and edgy. It wasn’t fair that he had to dash his son’s dreams with a single word. It wasn’t right for a parent to have to tell their child they were sick.

  ‘That’s not what we wanted to talk to you about,’ David said seriously.

  Matthew still smiled. ‘Come on, Dad. Stop mucking around. I know that look you have, you get it when you’re lying.’

  Lying. Another word that stung. Was his son perceptive enough to suspect his parents had been hiding something from him? David couldn’t bring himself to say the words out loud.

  ‘I’m sorry, Matty, but I wish that’s what we were here to tell you.’

  This time Matthew seemed to register the bluntness of his tone, and his smile quickly faded. ‘It’s about Granddad, isn’t it? Is he sick?’

  No, but you are. ‘Granddad is fine.’

  Matthew let out a breath. ‘Whew, ’cause I promised him I’d play for the Miami Cubs in his lifetime.’

  Courtney looked at David, her eyes urging him on. They’d rehearsed what they would say, how they would say it, but David still felt unprepared.

  ‘Matty, you’re sick.’

  Matthew laughed. ‘That’s it? I know that. That’s why I’m not at school. But I’m better now. If this is about doing my homework, I’ll do it this weekend before I go back.’

  ‘You know how you had that test last week in your hip?’

  Matthew nodded.

  ‘Well, we got the results and they show something that we weren’t expecting. They showed,’ he paused and tried to keep his voice steady, ‘that you have cancer.’

  David had prepared himself for a stream of questions, but instead his son went mute, his body stiff. He looked like he was holding his breath.

  ‘You’re going to be fine,’ David added quickly. ‘You just have a hard road of treatments ahead. Do
you know what cancer is?’

  In an instant, his son’s expression had morphed from one of glee to shock. ‘Yes. It’s what grandparents get. I thought children couldn’t get it.’

  ‘There are lots of different kinds of cancers,’ Courtney said, relieving David of the pressure. ‘Anyone of any age can get it.’

  Matthew’s face went pale, tears pooled in his eyes. ‘But why do I have cancer?’

  This time, David couldn’t make up an answer and he couldn’t distract his son with another interesting fact. He stared down at the blue of his son’s eyes. Eyes that could see through a lie.

  ‘I don’t know,’ David admitted, ashamed that he really didn’t have an answer. ‘It’s not your fault. It’s not our fault.’ He saw Courtney cup her face in her hands. Usually, she would be the one doing the talking, but now words seemed to have escaped her. ‘Doctors don’t know why people get cancer. They just do.’

  He could see his son was struggling not to cry. His face was flushed pink and he looked away. ‘What is cancer?’

  ‘You have cells in your body that have lots of jobs to do to keep you healthy. And they need to work together. Cancer comes from cells in your body that don’t act properly. These bad cells can make the good ones sick, so the doctors give you medicine to bring back the good ones and get rid of the bad ones.’

  Matthew was listening intently. ‘I don’t understand.’

  David went to the cupboard to get the sweets, containers and bottle of water he had ready to help Matthew understand his illness in a simple way. He poured the bags of sweets onto a tray. ‘Okay, we all have a blood factory. It’s how our blood is made.’

  He put the containers on the tray. ‘Take some of these red candies and put them in the first container.’

  Matthew rummaged through the bag and put four red jelly beans into the container. ‘Those are your red blood cells. Red blood cells give you energy. Now put some white candy in.’