Читать книгу Get me to 21 - Gabi Lowe - Страница 16

CHAPTER 8

Natalie’s Circle of Love

The 4th of January 2011 was one of our last long lazy summer days at Plett that year. I was lying mesmerised by the rhythmical sound of the ocean when, from inside a beach bag under our brolly, Stuart’s cellphone rang loudly. He grabbed it and hopped up. “Hey, Shirl,” he said, smiling broadly and wandering off up the beach to catch up with his sister’s news. “How are you doing?” I could hear his voice fading as he strolled away.

Shirley and Stu had grown up together in Camps Bay. In true “big brother” fashion he would tease her, chase her, aggravate her and protect her. He was adventurous and mischievously naughty, but the siblings were very close. We saw the three of them regularly in Cape Town – Shirl and her daughter Natalie and son Kola.

“Hey, what’s up, Shirl?” Stu asked warmly.

In her usual style Shirley first checked in to see how we were all doing, but by the time Stu walked back to us 10 minutes later his smile had gone. I knew immediately that something was horribly wrong. His tanned face was pale, and he looked shaken. He told me that 10-year-old Natalie was battling to breathe and had been slated for emergency surgery that night. No one knew what was going on, but X-rays had revealed a large tumour inside her chest that doctors believed needed to be operated on immediately. I thought I had heard wrong. I made him repeat it. How was this possible? We were together at Christmas lunch just a few weeks before and Natalie was fine.

We were in shock. We spent that evening processing the news and finding a flight to get Stu home fast. He flew home the next morning and I followed with the girls a few days later.

Jen had her last romantic kiss with her surfer-boy on the balcony in the soft rain just before we left, but the girls were silent on the way home in the car. There was no thumping music or carpool karaoke. We dreaded what we might get home to. Salty kisses and holiday romance faded quickly into the distance as we drove towards Cape Town.

That beach phone call was a lightning bolt of brutal reality, which changed our lives forever.

The results of the initial surgery were not good. The part of the tumour that had been pressing against Natalie’s windpipe, which was why she was having trouble breathing, was just the tip of the iceberg. The real threat was to her thoracic spine. Six vertebrae were affected. The results of the biopsy were shocking. Natalie was diagnosed with a rare bone cancer called chordoma. There were no known cases of chordoma in South Africa and the local doctors offered little hope for a cure. The life of our beloved niece was in danger. None of us could get our heads around it.

Within hours of the diagnosis, Stu’s cousin, Dr Greg Kew, offered to take on the role of family advisor. We needed him to help make sense of the medical language and understand the implications. Finding the global expertise that Natalie needed was an epic process. Ultimately, Natalie’s unusual case gained the attention of global chordoma experts in Europe and America, who believed she could be saved.

Natalie’s treatment would include a combination of proton beam radiation, not available in South Africa, and dangerous, outlier surgery. The tumour needed to be removed “en masse”, which included removing seven affected vertebrae in her thoracic spine. This had never been done before. Three different multi-disciplinary teams proposed three different approaches. Choosing the right team of doctors, the right hospital and the right city in the world was a minefield, but Shirley was unstoppable. She was a force of nature. Stuart would sit with her late at night through some long and emotionally tough phone calls talking to each team of doctors. It required grit to examine the facts and assess every detail of the various surgical approaches.

We didn’t yet know where Natalie would go for treatment, but we did know that once she left South Africa there would be no medical aid cover and the cost of care as an international patient would be beyond any of our means. If Natalie was to have a chance, we would need help, not only raising money, but also with finding accommodation and support in a faraway place. We needed to reach out, to share the story and ask for help.

The family went into production mode. Within days we set up a trust and a website to launch Natalie’s Circle of Love. I watched Shirley agonise over her first blogpost on the website. What do you say and not say when the truth is so brutal? How do you find the words to ask for help? It was hard, but the outpouring of love and support was overwhelming and deeply humbling.

Shirley sold her home to free up funds and I helped her find a rental flat close to Ali. It needed to be a lock-up-and-go, immediately available and all on one level. We had to factor in the likelihood that Natalie would be in a wheelchair when she returned from surgery and balance urgency, efficiency and the many practical arrangements that needed to be planned for, including our girls and nine-year-old Kola beginning the school year.

Within a few weeks we held our first fundraiser at the Baxter Theatre, an evening of theatre sports played by generous, talented friends to a full house. It was an emotional, laughter-filled event that provided a huge boost of love and support and some of the funds vital for those first expenses.

By early March it was decided that Natalie would be treated in Boston at Massachusetts General Hospital. Shirl and Nattie needed to get to the US as quickly as possible and would be away from home for at least three months. Friends and family rallied around us, and people we didn’t even know came forward to ensure that Shirley and Natalie would have the softest landing possible in Boston. In the days before they left we held a sunset picnic at the top of Table Mountain to say farewell. I have a pic of that night that I treasure. The evening sky is crimson red and Natalie, flanked by Jen and Kristi, is lying atop an ancient cannon, smiling to the camera, arms spread out wide as if she is flying. Shirley and Natalie boarded the plane the next day and we were left trying to hold the pieces of our family together.

Natalie’s diagnosis changed me profoundly. I hadn’t experienced anything this hectic in my lifetime. Helping to run the Circle of Love, advocating for Natalie, and raising funds became part of my life.

I was astounded at how our friends stepped up to support us during the tumultuous years that followed. There were so many acts of lovingkindness. My friend Nici conquered the icy open water swim from Robben Island to Green Point to raise funds for Natalie. Friends donated to her trust, hosted their own events, donated products, trips and paintings for auction, and helped sell tickets to our fundraisers. It was truly humbling.

Some profound connections developed during this difficult time. One such connection was with my neighbour, Mary. Over the years our families were friendly but not particularly close. When Mary had gone through chemo a few years earlier, I was glad to be able to bake her an apple crumble or take a casserole for the family on treatment days. I had so much respect for how she got through her battle with breast cancer. So when Mary suggested we start walking together more regularly as a healthy way for me to manage my stress, I jumped at it. What started out as walking became “wogging” – a rather pathetic combination of walking and jogging – and then after a while running. I never imagined I would become a runner, but I grew to love it. We went consistently three to four times a week and slowly Mary’s friendship developed into a lifeline for me. Because she lived so close and our time together was so regular, she knew all about the complexities I was dealing with.

By then Glynis, who had covered for me at Woolworths when I went on maternity leave, had left the business world and was a qualified and practising clinical psychologist. She was another lifeline for me in a world turned upside down. Glynis knows how to listen in a way that few people can, without any shock or judgement, and gives astute and caring advice. I needed that. I also grew even closer to my beloved friend Vanessa, for whom nothing was, or ever is, too much to ask. She had a deep understanding of the challenges our family was facing as her stepdaughter had been seriously ill for many years.

There are so many significant relationships that carried me through that time and I really don’t know how I would have coped without them. No one should have to walk alone.

By April, Natalie had completed proton radiation and she underwent two very long and dangerous surgeries one week apart. It was beyond intense, but the ground-breaking procedures were declared a success. Everyone was elated! After she stabilised, Natalie was fitted with a halo brace – a brutal experience in and of itself – and she began the long and extremely challenging road towards recovery. By May, she was transferred to a rehabilitation centre where she would re-learn to sit, stand and walk.

There were highs and lows, and complications, and it was challenging in the extreme. Shirley lived in the hospital with Natalie, constantly at her side. In the meantime, we worked hard to raise additional funds and sponsorship to ensure they had regular visitors in Boston. Being able to count down the days to see Kola and spend time with him, or be uplifted by visits from loved ones, made a big difference.

We had no idea at the time what further tragedy awaited us.