Just before Christmas in 2016 Calvin had a friend mention to him that he looked unwell (Anaemic) so he underwent a blood test to see if the Myelodysplastic Syndrome (MDS) that he has been living normally with for a years had changed.
This disease affects the production of normal blood cells in the bone marrow. In MDS, abnormal bone marrow stem cells produce increased numbers of immature blood cells (called blast cells). These cells do not grow properly and often die prematurely. This results in lower numbers of normal, mature red blood cells, white blood cells and platelets being produced. The blood cells that do survive are often of poor quality, are abnormal in shape and appearance (dysplastic) and unable to function properly.
MDS patients have the potential to progress to Acute Myeloid Leukaemia (AML) if the percentage of blast cells increases to a dangerous level.
The results of Calvins test showed that his MDS had worsened significantly and quickly since the last test. He underwent a bone marrow biopsy to enable the doctors to get clearer and more detailed information. This biopsy clarified that he was now in the extreme high risk category.
The specialist immediately applied for a stem cell (bone marrow) transplast which was granted by the Cancer Board and Calvins fight began!
He was monitored closely and received countless blood and platelet transfusions (thank you to all you blood donors xx) in an attempt to keep his body functioning.
On April 26th 2017 he was admitted into Flinders Hospital to begin treatment.
The first step was intense Chemotherapy intravenously 24/7 over a full week to kill off the cancer cells in his blood and bone marrow.
He responded well to the Chemo but unfortunately had a severe anaphylactic reaction to one of the drugs used to fight infections and a rare terrible rash covering most of his body (sweets syndrome).
As with all chemo patients he had horrible side effects and was extremely unwell.
Once the treatment was completed he came home under strict instructions as his immune system was non existent. The blood and platelet levels were closely monitored and there were many more transfusions.
The aim was now to increase his blood levels and health to a point that he was well enough to undergo another course of Chemo and the stem cell transplant.
On the lead up to his transplant we attended appointments with a new specialist (Professor Peter Bardy). He gave us all of the information regarding the risks and procedure of the transplant. The risk was incredibly high. So high that Calvin made the heart breaking decision NOT to go ahead with the transplant.
His family understood his decision but were devastated.
Over the next few weeks there were many conversations with family, friends and transplant survivors and eventually he changed his mind.
On 7th July 2017 Calvin was admitted to the Royal Adelaide Hospital to begin treatment leading up to his transplant. He received another 7 days of intravenous chemo to kill off any new cancer cells and was placed in a special sealed area of the hospital. This time he was stronger. He surprised us all with his strength and determination. The nurses were calling him a freak and one even named him a Minotaur (head of a bull and body of a man).
Finally on July 12th 2017 his blood counts had risen enough to receive his stem cell donation.
The cells came all the way from Europe on an emergency flight and arrived in an esky!
Once the transplant had taken place it was up to Calvins body to take them into his system and allow them to become his new cells. This part was very scary as we didnt have any idea how they would be accepted.
There were more transfusions to help things along and a long recovery . The side effects from the anti rejection drugs were terrible but he stayed strong with family visiting every day (fully masked).
Thankfully everything went perfectly to plan and his blood counts rose very quickly. He was well enough to leave hospital in record time.
Since then he has followed all the possible guidelines and put all his strength into recovering. Ongoing monitoring of his blood and specialist appointments at the Royal Adelaide Hospital have been difficult to organise with me trying to continue working but somehow we have managed. His improvement was gradual but he felt like he had beaten it. He was feeling great and considering trying to start working little by little to try and get some income generated.
So that was Calvins story up until this new year....
And then it all changed.
Just after 2018 began we had noticed his colour slowly depleting and the doctors were closely monitoring the changes. On 3rd of January he received a call from his specialist asking him to come into the hospital for a transfusion as his haemoglobin, white blood cell count and platelet levels has depleted rapidly since his last blood test. On the 5th of January he had another bone marrow biopsy to allow the doctors to see what has happened.
Yesterday we attended an appointment at which we were told that the disease had returned.
The donors immune system has not sucessfully taken over from his own. He will be needing regular transfusions again. The bone marrow taken last week was not a clear sample so they will require another one next week (his 8th).
Hopefully he can still recover from this. There are more treatments and drugs that they think may stop the disease taking over if we act quickly.
So here we go again...........
We have been stretched to our limit financially.
I have started to put assets up for sale but I know the market is not great at the moment and a quick sale usually results in a much lower price.
We have struggled to keep our building business which employs Calvin and 2 others running over the last year or so. We havent been able to draw any income for quite a few months.
The bank helped by holding our mortgage repayments for 3 months in July and then halving them until Christmas but that agreement is about to finish.
I have run out of paid leave at my job and expect to have to take some unpaid leave in the near future to support Calvin.
We have little super due to being self employed for 30 years. Our retirement fund is a holiday house on Kangaroo Island which Calvin built from scratch. It is his pride and joy and where he eventually hopes to spend time recovering. We would be devestated to be forced to sell it to keep our house.
It is a strange feeling, asking for financial help. It has always been us donating to others in need and now the shoe is on the other foot.
We are hoping to raise $25,000 as soon as possible through this page to be able to make an up front payment of 12 months mortgage on our home.
This would allow us to keep our business running without needing to draw a wage and keep our employees in work. It would also prevent us having to sell our retirement nest egg.
It would allow Calvin to concentrate on his health instead of finances and heavily reduce his levels of stress in turn helping him to keep fighting as hard as he can. This is what I am hoping for the most.
Calvin and Sue Wright
- Tricia Smith
- Sankkirtana Sellvakumaran
- Helen Mehbrei
- Claire Elton
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