Kael Lovelock and Histiocytosis
Kael Lovelock and Histiocytosis
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Kael playing trains at Brisbane hospital
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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 Domanick 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.



Comments (68) | Add a Comment

What a harrowing start to life! Thanks also need to go to Kael's brave parents and grandparents, and their optimism for a bright future for this little striver.
Thank you for the details of his symptoms and treatment. This is information that will be helpful to all parents of little ones .
Bettine Lee | bettine_lee@internode.on.net | September 01, 2007

Hi!
Our little girl also has LCH. We will be thinking of you all! Kael is a cutie! We just want you to know that there is hope. Zoe took her last chemo treatment and was declared "in remission" on June 6,2007. We know that this disease is tricky but we just enjoy everyday that we have with Zoe Kay!
Blessings!
The Bittinger | bittinger3@bellsouth.net | September 13, 2007

Hi Kael and family,
I am sad that Kael is back in the hospital. Please know that we are thinking about you all and they can figure out this infection!
Blessings,
David, Kayla, and Zoe Kay
Bittinger | bittinger3@bellsouth.net | September 30, 2007

Kael's name means "Warrior" and that is what he is. When he should have been sick he was strong, playfull and happen. After surgery he was up and trying to walk. He never gives up. He is my little warrior who will fight no matter what and I love him soo much.
Tennille Lovelock | nei_07@hotmail.com | October 02, 2007

I am Kael's mother and I would like to thank everyone at the Royal Childrens Hospital for everything that they have done for us. With out them Kael would not be getting better and my husband and I would have lost the plot along time ago. They really care and to them you are important and not just another patient.

Tennille Lovelock | nei_07@hotmail.com | October 02, 2007

We would also like to thank the staff at Mount Isa Base Hospital for rushing Kael back down to Brisbane when the "infection" took hold.
Peter Roberts | imogiri@bigpond.com | October 02, 2007

Hi I am Kaels aunt Andrea. When Nei first told to me that Kale was sick I was shocked to hear that such a beautiful georgous outgoing happy little boy (baist i am loud to be)was not well. Looking at him u would not have thought this... Although he hasnt responded well to the first lot of treatment there is no doubt in my mind that he will have what it take to fight this crappy disease... Being 2000klm away from Phil Nei and Kale makes it very hard u feel helpless, u dont want to ring everyday and ask "is their any changes or how is he doing " I know it would get exhausting constantly repeating the same thing ova and ova to everyone... So I want u guys to know I love u three very much and would move heaven and earth for u guys... And Kale my little poohbear fight this thing , get rid of it....
To all those who have posted on this site and have given +ve feedback thank you .. Kales family is greatful...

Luv Aunty Andrea.... C U soon .. XXXXXXXXXOOOOOOOOOXXXXXX
Andrea Mitchell | ammitch@hotmail.com | October 04, 2007

Oh sweet Kael,
I am so sorry to read that this yucky disease is back... We are praying for you and your family. Please tell your mommy that she can email if she just needs to "talk" to another histio mom. I know just how hard it seems sometimes. I've been on this journey with my daughter for over a year now. It's been very, very trying at times, but for now Zoe is doing ok. She's off chemo right now, trying to see how her little body is going to be. I hope you are having a good day..
Blessings to you and your sweet family,
Kayla
Bittinger | bittinger3@bellsouth.net | October 07, 2007

Hi guys!
I just wanted to stop by and say that I am thinking about you all! It will nice to "hear" from you the other day via email. I pray that Kael will soon be able to go home.. I know you guys must be exhausted.
Blessings!
Kayla Bittinger | bittinger3@bellsouth.net | October 30, 2007

Hey Guys!
I just sent you an email. I am going to post Kael's site on the histio board, so everyone can keep you guys in their thoughts. Please know that I am here for you even though we are miles and miles apart!
Blessings,
Kayla and Zoe
Bittinger | bittinger3@bellsouth.net | November 21, 2007

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Allyson Hitt | allyson_hitt@yahoo.com | November 21, 2007

Hi Peter
Just got off the phone with Jenny.
My God I am so saddened by the fate of this gorgeous little boy.
What a journey to have to take in life!
I send Kael, his parents and the family at large my deepest and most sincere wishes and blessings
may the little darling be allowed to fully recover and have a life of joy rather that illness and pain.
I send you all as much love, strength wisdom and courage to help you through.
Love & Light
God Bless
Ellie Schuhle

Elisabeth Schuhle | efe@aaws.net | November 22, 2007

Lovelocks,

Hello, it has been a while since I have spoken to you guys. I had no idea what was happening to you and your family, and I am very glad that you got in touch with us. If there is anything that my husband and I can do, please let us know. We hope that everything goes well with Kael, and that the "warrior" in him is alive. You will be in our prayers.

Love, The Buck Family
Kyle, Amy and Dylan
Amy | amytbuck@hotmail.com | December 28, 2007

Hey sweet Kael and family,
We think of you everyday and wish nothing but great "sun shiny days" for the year 2008! I so enjoy talking to you Nei, I think we've been a great help to each other on this histio journey we are both travelling!
Love,
Kayla
Bittinger | bittinger3@bellsouth.net | January 04, 2008

Hi Phil, Nei and Kael,

We all miss you guys and we hope that you are all able to return home very soon. We know Kael is built tough, just look at his dad, he is what legends are made of. We wish you guys the very best and send our love to you, and your little man!

Love Brighty and Leigh
jason and leigh bright | jasonbright36@gmail.com | January 22, 2008    Next