Hidden in Plain Sight
Complaining of nothing more than a 'tummy ache' Williams father stopped at the local hospital for a quick check-up on the way to school. Totally unexpectedly, tests discovered a massive tumour on Williams kidney and a further 9 tumours in his lungs. He was diagnosed with stage 4/5 Wilms cancer at just 7-years-old.
William spent a year in treatment, underwent multiple operations (including kidney removal) and protracted chemo & radiation therapy
He beat the odds only to suffer a relapse 1 year later with the emergence of 2 new tumors in his lungs. Following another year in treatment including lung surgery and ICE chemotherapy he suffered yet another relapse within months.
With no treatment options left William underwent surgery to remove part of his lung and an autologous stem cell transplant to strip out and re-grow his bone marrow in the hope of beating the disease.
Every Parents Nightmare
An active, sports minded little boy (football, swimming, hockey, etc.), William was diagnosed with nephroblastoma (commonly known as: Wilms) back in early 2018 at age 7yrs.
Complaining of no more than a “tummy ache” his father took him to the local hospital where, out-of-the-blue, an x-ray picked up a massive, and previously undetected, solid mass on his left side.
The family were immediately taken to the acute care centre of their regional children’s hospital (some 400kms away) for further testing where it was confirmed that the tumor was haemorrhaging and that his life was in immediate danger.
William was sedated and over the following days a specialist team was put together to conduct an emergency operation to remove the tumor and his kidney in order to save his life. Sadly, in the intervening period it was also discovered that the cancer had metastasized and William had a further nine tumors in his lungs.
From being on the football pitch, swim club and hockey arena one day, he was suddenly facing life/ death surgery and diagnosed stage 4/5 cancer.
After a period of analysis, the medical team elected to remove the tumour and kidney (nephrectomy) first before pivoting to the lungs at a later date. Unfortunately, two surgical procedures were abandoned as, due to the size of the tumor, and the protracted period that it had been left undetected, it had ‘fused’ itself to multiple internal organs (including Williams spleen, pancreas, diaphragm, lower stomach, upper colon).
As a result, he was treated with chemotherapy in an attempt to shrink the size of the tumor in the hope that it would peel itself away from his other organs. Initial rounds of chemotherapy failed and William had to endure protracted and successive treatment cycles but to limited effect. Ultimately, the medical team elected to press on with surgery despite the significant risks to his life as to not do so carried greater risk. Thankfully after a lengthy surgical procedure, the tumor and kidney were removed on the third attempt (and 12 weeks of cumulative chemotherapy).
Following a period of convalescence, the medical team pivoted and William was once again subjected to further chemotherapy in conjunction with radiation therapy as the medical team tackled the 9 tumours still growing in his lungs.
The radiation treatment extended to the maximum permissible range but despite its intensity it sadly proved ineffective. However, the repeated rounds of chemotherapy were relatively successful in that 7 of the 9 lung tumors were eliminated. However, 2 remained.
The medical team believed the tumours to be so small that they posed a negligible risk and decided to forego more treatment in favour of a period of convalescence and analysis. William and his family were finally sent home almost a year after they had arrived but they were required to make the 400km round trip, every three months, for tests and evaluations. William returned to being more like a typical kid although the risks of another break-out of the cancer remained high at 30-35% within 3 years. However, the family was happy taking the 65-70% odds that he would be okay.
Sadly, on the one-year anniversary of discharge Williams medical examinations showed that the 2 remaining tumors had begun to grow once more and he had relapsed.
Given that there were 2 tumours a decision was made to adopt a twin track approach. Firstly, to remove the smaller tumor surgically in order to conduct an biopsy in the hope of gaining some immediate insight as to the nature of the cancer and possible treatment approaches. Secondly, to leave the larger tumor in situ and treat it with more intense chemotherapy in the hope of collecting data on its response (should the cancer return elsewhere). The lung operation went relatively smoothly and after a period of recovery the team pivoted as they had done before to the concentrate on the remaining tumor and William endured the full six cycles of the very powerful ICE chemotherapy regime. The treatment lasted eight months and, sadly, at the end it was discovered that the tumor had only reduce in size by about 45%.
The family were once again discharged to an uncertain future whilst the specialists assessed the situation and monitored the remaining tumor through active observation as they formulated a plan. Throughout this period, the family returned to the hospital regularly to analyze the status of the tumor and initially the remaining tumor remained static. Unfortunately, only after four months after the discontinuation of treatment the tumor began to grow ‘rapidly’ again.
The re-emergence of the cancer after so much treatment (2.5 years) was a significant blow and the hospital stated that any intended course of action should be viewed as a ‘last treatment option’.
It was suggested that William receive a three-stage treatment program over ten months consisting of; a) a further 2 cycles of chemotherapy to consolidate his medical condition still further; b) lung surgery to remove Williams right middle lobe (lobectomy) which contained the tumor itself and: c) high dose chemotherapy supported by a stem-cell transplant designed to strip out his bone-marrow, take his immune system ‘off-line’ and then ‘reboot It’ in an effort to clear out any cancer that might be remaining.
In essence the plan was to remove the cancer that could be seen and attempt to eliminate the cancer that could not be seen. The treatment was draconian and carried considerable health risks over both the short, medium and long term (including multiple organ failure, numerous secondary cancers such as bone, blood, brain and bladder and impotency, etc.) but the choice was stark and in the context of a last resort, utterly necessary.
Once treatment began the family braced themselves for the challenge that lay ahead. Whilst the chemotherapy itself was lighter than previous years it was still difficult to navigate due to the cumulative effects of drug administration over the 2 preceding years. In addition, lung surgery, and subsequent recovery, became more challenging due to his reduced constitution from the chemotherapy treatment administered in the months immediately prior to surgery. However, William stayed the course and once fully recovered ‘high dose chemotherapy’ was administered and the family watched as his heath, by design, deteriorated and his immune system collapsed. Throughout the third stage of his treatment William was in full isolation in order to reduce the possibility of infection. With no immune system even the slightest bacterial or virus infection would be fatal. During this period William developed a number fevers due to infection although thankfully these life-threatening situations were overcome.
Ultimately, he survived the program and his family are so thankful that he/ they have made it this far. With all options now exhausted William and his family continue to attend regular testing and evaluation every 3 months and are hopeful yet realistic about the future.
Presenting: abdominal and lung Wilms tumors
Read more about Williams' story from 'a parents perspective':