Support fund for Luke
I wish I was writing this update to share wonderful news all round, but sadly this new post is very far from that. In my first explanation below, I mentioned that Luke was finishing off his chemo before being able to be with Colleen and the boys in Brisbane. Everything ran quite smoothly and he joined his family during Christmas/new year. Things started falling into place and due to family members doing some shifts at the hospital with Joel, Colleen was even able to spend some small periods of time out of the hospital with Luke and Beau, plus Luke was also able to have some much-needed Daddy and son time with Joel at the hospital.
I also mentioned in the original post, Luke was required to have a course of chemo which brought back terrific results and the tumor had shrunk. Then, a few days ago, Colleen noticed some worrying differences with Luke. He was bruising easily and his right side was weakening rapidly. Doctors did blood tests and brought the MRI (which he was due to have later this month) forward. Afterward, on the 4th January, Luke began having seizures and was eventually admitted to the Wesley Hospital in Brisbane. He has received the results of the MRI and the tumor has advanced quite rapidly. It is with a heavy heart that I am posting this write-up to inform you that the tumor is now at an inoperable stage.
In Colleen’s exact words, this has shaken them all to the core and not something they had expected, given such good results only 3 months earlier.
Doctors are wanting to start Luke on another type of treatment. This medication, they were told, could give Luke a 50/50 chance of working. But our Luke, is a battler and together with his determination and the help of the treatment he is in no way giving up without a fight!
Joel’s treatment is going as well as can be expected so far. He has had the Umbilical Cord Blood Transplant and so far, has proved quite successful, yet still a very long road ahead for this little champion. Hopefully within the next few weeks if all goes well, he may be able to leave the hospital and hopefully begin staying with his Mum, Dad and big brother, Beau in their unit in Brisbane. Joel has proved amazing strength. Just like his Dad and his awesome Mumma, he has fought tooth and nail through his treatment and continues to be the happy smiling cutie he has always been.
One of the major hurdles they are now facing yet again, is the cost Luke’s treatment. This is not covered with PBS at all and will put them out of pocket by tens of thousands of dollars yet again, which is on top of the expenses that are coming their way with little Joel’s treatment, general living expenses as well as travelling between hospitals.
Because of so many hundreds of extremely generous donations, the money raised so far has been extremely overwhelming for Luke and Colleen. Each and every single donation and peoples’ generosity has been treasured by Luke and Colleen, as well as so many well wishes and heart-warming messages. The money raised so far has certainly helped ease a burden, to make living expenses a lot easier during their time in Brisbane. That is all due to so very many kind- hearted people. Words cannot express the kindness that people have shared to this family.
Luke’s horrible set back is obviously very, very unexpected and if anybody at all could possibly help out again, each and every dollar will be a tremendous help to go towards Luke’s treatment and other expenses that may arise. As I have said before, money doesn’t take away the nightmare they are going through, but it will help out this beautiful family, to at least ease one burden, so any help at all would be greatly appreciated.
Support for Luke and Colleen Angus and Family.
For those who don’t know this family, I would like to introduce you to Luke and Colleen Angus and their 2 boys, Beau, aged 3 years and Joel aged 14 months. This beautiful little family live on a beef cattle property south of Charters Towers, Qld. Colleen, with the 2 boys in tow, enjoy every opportunity possible to get out of the house and work by Luke’s side as they undertake everyday station work together, and tackling any trials and tribulations that may come their way.
Over the last few years, they have been dealt with some terrible blows. Luke was diagnosed with a brain tumour and most recently their youngest son has been diagnosed with a very rare disease called Mucopolysaccharidosis (MPS) Type 1 Hurler Syndrome.
So, what can we do to help?
Feeling like Lance and I are, you might be thinking, “What can we do?” So, we have done some homework and looked into several ways we can help them. We decided to contact Colleen and ask her if we could organize raising some funds for them, for everyday living expenses, parking, taxi services and much more that I couldn’t even begin to imagine. When I first approached them, they were extremely reluctant, saying that there are people out there worse off than they are!!! I went on explain that they are very near and dear to all of our hearts and most of us, in and around their lives are healthy and quite simply……just want to help in a small way by letting them know we care and are thinking of them daily. Although we can’t make this horrible nightmare disappear, we can try and help to make their life and stay in Brisbane, just a little bit easier. I tell ya though it took me some talking!!
The following are more in-depth details of the battle Luke, Colleen and family have come up against and unfortunately, it is still ongoing.
In 2010 Luke was diagnosed with Stage 2 Oligodendroglioma (brain tumor) and in December of 2010 he had a resection, which involves removing a tissue known to be cancerous. This was followed by radiation and chemotherapy in 2011. Then in 2012 he required a second resection, where doctors needed to remove a larger area and as a result, this has affected Luke’s speech and the normal everyday use of his right hand and arm. This second resection was more successful thankfully, and Luke was in remission for 4 years. Then at the beginning of 2016, the tumor returned and Luke was required to go through a series of chemotherapy rather than another resection. He is still undergoing chemo, though recent good news has been delivered and due to the treatment, the tumor has shrunk. He is due to have an MRI in January 2017, to make sure the treatment is still working.
More recently, in October of this year, a week after his 1st birthday, Joel was diagnosed with a very rare genetic disease known as Mucopolysaccharidosis (MPS) – Type 1 Hurler Syndrome. This is an extremely difficult disease to explain and I will try and keep it as short as I can, yet as explanatory as possible.
This disorder covers a wide scope of severity. In some people, the brain may be affected with some physical symptoms, yet in others it maybe only physical symptoms affected, not the brain. The physical symptoms can include eye and hearing problems, bone and joint malformation and heart and breathing difficulties. The rate of the disease progression can vary.
There are 3 categories of MPS 1: Hurler Syndrome, Hurler-Scheie (pronounced Shay) and Scheie Syndrome. Hurler is regarded as the most severe and the brain is affected.
As with other MPS disorders, MPS 1 is caused from a buildup in the body’s cells, of long chains of sugar molecules known as mucopolysaccharides. Muco – meaning thick jelly like consistency of the molecules, poly – meaning many, and saccharide – the sugar part of the molecule. Mucopolysaccharides are used by the cells to build connective tissues in the body, such as skin, muscle, cartilage and bone. They also help many other functions including, growth control, organ development and signaling between cells.
Once the mucopolysaccharides have completed their job, they are then transported to the lysosome which contain enzymes that break down the mucopolysaccharides and in turn are continually recycled. The absence of a specific enzyme means no breaking down of the mucopolysaccharides, therefor they stay stored in the lyosomes, which continually build up, interfering with normal cell functioning causing many physical malfunctions as mentioned above.
As the variation of severity is wide, it is difficult to be precise of life expectancy. Some with Hurler Syndrome have lived to adulthood, though the quality of life declines, due to the deterioration of the brain. If the brain is not affected a normal life span could possibly be expected though significant physical problems which require on going treatment could develop.
At present, Colleen, Beau and Joel are in Brisbane where Joel is at the very early stages of treatment at the Lady Cilento Hospital. Luke is unable to be there due to the chemotherapy treatment he is undergoing. This is extremely difficult, upsetting and tiring for this very close-knit family.
As there is no cure for this disease, there are treatments that can give Joel relief, as well as possibly give him a better quality of life. One option is a Haematopoietic Stem Cell Transplant (HSCT) which is known as Bone Marrow Transplant or an Umbilical Cord Blood Transplant. These operations are extremely intense and require many weeks in isolation, meaning very long hospital stays, as well as infections and complications have been known to arise. Another hurdle is finding an exact donor (family members tested came back negative). They have found the transplants to be quite successful in children under the age of two and finally some terrific news has arisen! They have recently found out that he will be receiving a FULLY matched cord blood transplant in the coming weeks!!
Studies have shown that if successful, there can be many positive outcomes! The transplants could possibly improve life expectancy and/or many of the physical features such as harshness of the facial features, hearing, enlarged liver and spleen and heart functions!
At the moment, Joel is undergoing his treatment and although he is only at the very early stages, so far it is going as well as can be expected and he is handling it like the true champion that he is!
Your donations would be greatly appreciated. Thank-you kindly.