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), 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). 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) 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.
Comments (19) | Add a Comment
Not sure why my (very long) message came out as gobbledy-gook, but my daughter Ivy had a similar relapse. Please check out her story and email me if you'd like.
Allyson Hitt | allyson_hitt@yahoo.com | November 22, 2007
Allyson Hitt |
allyson_hitt@yahoo.com |
May 7, 2008
Hi my name is Bronwyn I have a 7 1/2 year old boy William, and last week we got to meet Kael at the RCH, as we had our normal checkups, William also has Histio and has been coming to the RCH for nearly 6 1/2 years, We also have the same great Dr Helen Irving, it was Dr Helen that introduced Kael to us, finally after hearing lots about him. William also had a liver transplant 3 years ago and all going good so far, he is still very small we can't get weight on him he only weighs 19kgs.
It was great meeting them and having a chat, it was a shame we didn't have more time to talk, but hopefully we will talk on the phone and emails, I hope the 2cda works and you can go home for a while it certainly is a very long process, and very hard on family and friends seeing our loved ones in pain.
Take Care
Lots of Love from your new Histio friends
Bronwyn and William
Bronwyn Latter |
bron130@hotmail.com |
April 21, 2008
Hey guys!
Nei, We haven't "talked" in a while. I am glad to read that there is NO LCH in Kael's Bone Marrow! YAY! I do hope you guys get to go home soon.
Love,
Kayla
Kayla Bittinger |
bittinger3@bellsouth.net |
April 15, 2008
dear Roberts,
Sorry it has been along time to hear you. I was shock to know Kael's deasease. How sad is his mother!I know you and your family are good people. I hope he will get well soon! I am sure God loves your family. I can't imagine your heart! My son has the same age with Kael and he is happy enjoy his childhood . I hope Kael will get better as soon as possible so he can enjoy his life as my son. I will pray for him.
love,
henny,eko,jasmine and rifky
henny |
heny_rosella@yahoo.co.id |
January 25, 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
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 5, 2008
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 29, 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
¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿¿
Allyson Hitt |
allyson_hitt@yahoo.com |
November 22, 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 22, 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
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 8, 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 5, 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 2, 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 2, 2007
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