Kael playing trains at Brisbane hospital
Kael Benjamin Lee Lovelock, born July 7th 2006 in Mount Isa, Queensland, Australia.
About a week or two after birth, Kael started to get a rash through his eyebrows and his hair, down his back, across his groin, behind his ears, under his arms and behind his knees. The local chemist and paediatrician said that it was heat rash. Moisturiser got rid of the rash on his forehead and controlled the rash on his head and ears. Chamomile lotion got rid of the rash on his back and controlled the groin, under his arms and behind the knees.
Kael's ears became very waxy from a couple of months old and we were told it was to do with his teething.
At 8 months, the local GP John Warren was a little worried about the wax but the middle ear was fine, so not to worry.
While on holiday visiting relatives in Victoria, within a couple of hours a lump the size of a golf ball appeared behind his right ear. That night and the following day, Kael was very ill and did not move much. Dr Austen Erasmus, the Paediatrician at the local Sale City hospital thought the rash was a type of Streptococcus infection which had caused a lymph node infection behind his ear and the extra wax.
About this time, we discovered that Kael's second cousin once removed, Damien Skeates had died of "cancer" in 1977 at age 1. This put more urgency into the matter.
Once back home in Mount Isa (2,700kms/1700 miles), Dr Erasmus telephoned to check on Kael and was quite concerned that the lump was still there. He contacted Dr Warren who referred Kael to Dr Ross Gallery, head surgeon at the Mount Isa Hospital. He ordered a CT scan and referred Kael to Dr H. Stalewski in Townsville (900kms/560 miles). Dr Stalewski is in private practice and referred Kael to Dr Lyndsay Allan at the Mater Hospital in Townsville. He was then referred to the ENT department of the Townsville Base Hospital where we were told that it was possibly LCH and to look up as much information as we could on the net.
Kael was then referred to the Head Neuro Surgeon, Dr Neil Cochrane and was in surgery for four hours to remove an Eosinophilic Granuloma and the bone around it. The granuloma was attached to a main artery and had to be cut away. A special plate was put over the hole and Kael required a blood transfusion.
A day after the surgery, Kael attempted to walk for the first time. The staff at ENT cleaned the wax from Kael's ears and said they were surprised that Kael could still hear.
Back to Mount Isa where Dr Habab took blood tests and then called to say that the liver bloods were suspect. He had already called Townsville and wasn't happy with the response and asked permission to contact the Brisbane Royal Children's Hospital. We were then put on the next flight to Brisbane (1800kms/1100 miles) to see specialist Dr Helen Irving in the Oncology Banksia Ward. Dr Irving ordered CT, MRI and full body x-rays, bone marrow and liver biopsies and a tummy ultrasound. This revealed that the liver and spleen were enlarged, lower right lung infected, liver infected and sclerosing and Cholangitis (infection of the bile). Kael may need a liver transplant in the very distant future.
Kael then underwent six weeks of Chemotherapy. This would determine his survival. A port was surgically attached to the major artery to Kael's heart so weekly Vinblastine could be administered. Kael also had to take Prednisone (immunosuppressant) three times daily, Septrin three days a week to prevent pneumonia, Nilstat four times daily, Zantac to stop stomach ulcers and use clorex mouth wash to stop mouth ulcers.
After six weeks the results from a CT, MRI and Ultrasound came back excellent. No hystiocytes could be found. Kael now has an 80% chance of a full recovery and LCH not returning. Kael now has 6MP (6-mercaptopurine) chemotherapy drug at night, Vinblastine three weekly, Prednisone three times daily after the Vinblastine. Kael was then allowed to return to Mount Isa. Next trip to Brisbane, Dr Peter Llewyndon performed a gastroscopy to determine the extent of liver damage and to see if there were any varicose veins in the oesophagus. No veins were found and the liver damge was not as bad as first thought. Treatment is on-going with regular trips to Brisbane.
Kael would like to thank his father's employer, Xstrata Copper for their generosity, understanding and sympathy during this saga.
4th Sept 2007 The lump on the side of Kael's head reappears but we are told it is only fluid in the wound.
27th Sept 2007 Kael back in Mount Isa hospital with an infection in the wound.
28th Sept 2007 Kael and his mother fly out to Brisbane to find the source of the infection. Kael very grumpy.
2nd Oct 2007 LCH returns - Dr Helen Irving considering the options.
4th Oct 2007 Kael is bound up for a CAT scan. Screams at his mother who he thinks is trying to kill him. More blood tests and then a blood transfusion because he has run out of blood.
8th Oct 2007 Double lung biopsy and bone marrow tests. Awaiting results.
12th Oct 2007 LCH in the lungs and bone marrow. Chemo didn't work. Kael needs more transfusions. Going to try other drugs.
20th Nov 2007 Waiting on surgeons to decide whether to remove Kael's spleen as it has swelled and poisoning his system. Kael now very swollen and weighing 13kgs (29lb)and hurting all over. Getting very little sleep and can't eat much. Old family friends keep popping in which is great.
22nd Nov 2007 Can't operate as he is too weak.
23rd Nov Doctors try radiation therapy.
24th Nov Drugs port blocked, Doctors going to try another type of Chemo.
2nd Dec 2007 Kael a little brighter and allowed to venture outside for a short period.
Dec 2007 Kael has another round of Radiation treatment for his swollen spleen and Chemo for the LCH. Regular infusions of blood, platelets, Albumin and antibiotics.
24th of December, 2007 allowed out of hospital to return to Ronald McDonald house with daily trips back for blood tests and transfusions.
Xmas dinner at Ronald McDonald house and a trip to the park in central Brisbane. Trips to other parks, shopping centres and Alma Park zoo. Eating out at an Indonesian restuarant and a Sushi restuarant. Slowly getting better but still jaundiced. Spends one night with parents and next with grandparents to share sleep time around.
Many thanks to all the medical staff at Royal Children's including Dr (Prof) Ross Pinkerton. The nursing staff are all great and welcome Kael in everyday.
26Jan08 Australia Day allowed out to visit Thomas Tank Engine.
13Apr08 After many sessions of Chemo, Kael seems to be on the mend but there is still evidence of the LCH in his Bone Marrow. Hopefully he will be able to come home for a couple of weeks.
28Apr2008 Kael started to walk today but couldn't catch the pidgeons.
7th May 2008 Back to Brisbane for more Chemo and tests.
June 2008 Kael allowed out to visit the Botanical Gardens and go for a steam train ride around Brisbane with Opa and Oma.
Sept 2008 Kael has been great with no sign of LCH in his blood tests and light maintenance chemo only.
16th Sept Kael has a temperature and admtted to Mount Isa Hospital. Hospital staff here have no experience with LCH so Kael and Tennille are sent by Royal Flying Doctor Service to Longreach to be met by the Oncology Air Ambulance and taken to Brisbane.
22nd Sept infection under control and Kael allowed out of hospital for the day to go shopping. Gets to handle a black python from Crikey Australian Zoo.
Jan 2009 met by cousins Dominick and Savanna for a trip to Lone Pine Koala Sanctuary and then to Seaworld.
Feb/Mar 2009 in and out of Mount Isa and Brisbane hospital with high temperatures.
April 2009 The temperatures were caused by a Parvo (!) infection. Kael is now back in Ronald McDonald House in Brisbane with a staph infection but doesn't have to go into hospital.
June 2009 Kael and cousins go for a ride on the last steam loco to be built in Queensland. Then to the Cloncurry Show to see the local animals and go for rides on the side shows.
Feb 2010 Kael is doing well but has the occassional visit to hospital with infections. Travelling to Townsville for Chemo now which is 900kms closer.
July 2010 Kael goes back to Brisbane Royal Childrens Hospital with pneumonia. Okay to come home again after a week in isolation.