MICHAEL, GERARDINE AND CONOR REIDY:Biopsy and CAT scan confirmed everybody's worst fears
ON THE DAY he was born in January 2004, Conor was just on the third percentile for both weight and height. By his fifth birthday in 2009, he had made it up to the 10th percentile, which means only one in 10 children of his age was smaller and lighter than him. While he had a healthy diet, he was always very reluctant to feed himself. Nevertheless, Conor generally had good health apart from an eye infection when he was two years old.
By April 2009, Conor had just completed his second term of junior infants in St Mary’s National Boys’ School, Booterstown. For about two weeks before the Easter holidays, he had complained about relatively mild tummy aches and he had begun to sweat very heavily through his head in bed at night. However, on Good Friday morning in 2009, Conor complained of a very severe pain in his stomach and this resulted in a mid-morning trip to the family GP. From there he was referred to Crumlin Hospital for further investigation.
By mid-afternoon a series of tests (blood, X-ray, ultrasound) indicated the seriousness of the situation. Conor had a major growth in his liver. Within a few days, a biopsy and a CAT scan confirmed everybody’s worst fears. Conor was diagnosed with a very aggressive form of liver cancer known as a Hepatoblastoma. This is the most common malignant liver tumour of early childhood with an incidence of about one per million of population. Crumlin Hospital has dealt with about 25 cases since the early 1990s.
Luckily, this type of cancer has its own unique bio-marker, Alpha fetoprotein (AFP). Under normal circumstances this bio-marker should be less than 10. Conor’s value was almost 800,000. Hepatoblastoma cancer cells can spread to other areas of the body including the lungs. Thankfully there was no immediate evidence of this. It did, however, take quite a while and several tests to confirm that for sure.
A key concern was whether or not Conor’s was an anaplastic cancer. This is a cancer which does not appear to resemble the tissue of origin. This is a rather aggressive tumour in its behaviour and is very difficult to treat. The four samples taken in the biopsy showed no evidence of this and indicated that the tumour would probably react well to chemotherapy. However, only time would tell for sure.
The large size of the tumour, which was in both lobes, was of great concern, as was the presence of tumour in the hepatic portal vein. The portal vein is very important because it delivers about half of the oxygen and about three-quarters of the blood supply needed by the liver.
Conor’s oncologist, Dr Jane Pears, and Prof Martin Corbally, consultant paediatric surgeon, said the treatment would be high-risk chemotherapy, followed by a liver transplant and a further course of chemotherapy.
Chemotherapy started just six days after the initial hospital referral. This was administered through a permanent chest Hickman line.
All going well and according to plan, the full course would take nine weeks and there would be an assessment of surgical options at that stage.
As it happened, after just seven rounds of chemotherapy it was clear that Conor’s body wasn’t able to cope with the protocol. He had picked up a number of nasty infections/viruses, he developed a clot in the right atrium of his heart, he suffered a permanent partial loss of hearing at the high-tone level, there was some evidence of renal damage and the anti-sickness drugs couldn’t prevent a rather dramatic loss of weight. A decision was taken to revert back to a less severe protocol.
Notwithstanding all the adverse side effects, there were glimmers of hope along the way. A number of very dramatic falls in the bio-marker were recorded early on, indicating that the tumour was reacting very well to the treatment.
As there is no paediatric liver transplant programme in Ireland, Conor travelled to King’s College Hospital (KCH) in London for an assessment at the end of July.
Prof Nigel Heaton (KCH) confirmed the likely need for a transplant while stressing that every effort would be made on the day to limit the operation to a resection if this was at all possible. Within a matter of days, Conor was placed on the transplant list with the highest order of priority due to the nature of his cancer. We, as his parents, were not given the option of enrolling on the living donor programme as it was felt that a suitable liver, from a non-living donor, would more than likely become available within two weeks.
On August 11th, just five days after being placed on the transplant list, an early morning phone call came through, confirming the possible availability of a liver. We were immediately transported, with Conor, to London by the Air Corps air ambulance service. By 5pm that evening the suitability of the organ was confirmed, surgery started at about 5.30pm and Conor was transferred back to the paediatric intensive care unit just before midnight.
Conor made a very good post-op recovery and was moved from intensive care to the paediatric liver ward within two days. Initially, the blood test results were very encouraging and it appeared that Conor could return to Crumlin within three weeks.
On the 10th day post-op however, Conor showed signs of acute liver rejection and he had to be given high doses of steroids for three days. This didn’t go quite according to plan and a second anti-rejection drug had to be introduced to supplement the main anti-rejection medication. Thankfully, that worked and the likelihood now is that he will be on a combination of both of these drugs for the rest of his life.
As the liver function test enzyme results dropped steadily towards the normal range over the next few days, a decision was made to discharge Conor back to Crumlin to finish his chemotherapy treatment. Conor was back in Dublin almost one month after his transplant and his treatment recommenced within a few days. A few weeks later, chemotherapy treatment finished and his AFP bio-marker reading was at long last under 10. By this time, he was under the care of Dr Annemarie Broderick, consultant gastroenterologist.
Very frustratingly however, for everybody concerned, Conor’s liver function test results failed to decrease to within the normal range and there was an almost constant fear of organ rejection for us. Matters were also complicated by the fact that Conor inherited the Cytomegalovirus (CMV) with his new liver. CMV is by far the most common infection in solid organ transplant recipients and requires a prolonged dose of treatment.
By Christmas Eve, a further biopsy confirmed that Conor was going through a second round of acute liver rejection. This required another three days of high doses of steroids over the Christmas period. As before, progress with lowering the liver function test results throughout the spring was painfully slow, with many worrying fluctuations. During all this time however, Conor’s overall health continued to improve and he was well enough to return to school in senior infants for short days at the beginning of the new term after Christmas.
By the end of April 2010, a further biopsy showed there was no evidence of rejection, acute or chronic. The conclusion was that Conor would probably continue to have higher than normal liver function test results without doing any apparent damage to his new liver. Thankfully, as it happened, that marked the beginning of the long- awaited and sustained gradual downward trend in the results.
Some of the side effects of Conor’s treatment were also quite evident at this time. He was very lame and his left leg was particularly weak. Physiotherapy sessions at the hospital were gradually improving this. However, there were a number of setbacks. Conor fractured two bones in his left ankle due to a fall in mid-February and two months later he fractured a bone in his right wrist. These breaks were as a result of the osteoporosis that he had developed arising from his poor diet, lack of exercise and the use of steroids.
A decision was taken to stop the steroids, which were originally intended to be long term to increase the efficiency of the anti-rejection medicines. It was also decided to start Conor on bisphosphonate treatment comprising of four intravenous doses at three month intervals.
Conor acquired new digital hearing aids in March 2010 to compensate for his loss of hearing at the high pitch tones. These will be a regular feature for the rest of his life along with the soundfield system which will move with him from classroom to classroom.
There have been a number of very positive milestones through the year. By the end of March, there was no further sign of the clot in his right atrium, the CMV virus was not detected and tests showed that there was only relatively minor renal function damage as a result of the chemotherapy. Conor finally got rid of the feeding tube in March and returned to a more normal diet. This coincided with slow but steady improvement to his fitness and energy levels along with sustained weight gain. He is now up to the 25th percentile for both weight and height.
The Hickman line was finally removed by the end of June, marking a return to more normal living, and Conor was well enough to join his first class peers in school on a full-time basis from September.
Just before Christmas, the liver function test results were at their lowest level since this journey began. The most important achievement of all, however, is the bio-marker evidence that Conor has been a cancer-free zone for well over a year. Long may that last.
Michael and Gerardine Reidy have written a book in Conor’s name, based on their experiences, A Lot Can Happen in a Year and a Half. All proceeds from the sale of the book will help fund cancer research and treatment at Crumlin Children’s Hospital. See original writing.ie.
