Steve remained strong in mind until the very end. He passed away on Sunday 19th July 2015 surrounded by his wife and family.
On behalf of Amanda, and both Steve and Amanda's families, thank you to everyone who has given in any way you have been able to.
Steve will be deeply missed and never forgotten.
Hi All,
Thanks once again for all your continued support during this trying time. Steve had a CT scan on the 16th February with the results showing a slight reduction in each tumour on his adrenal glands, a small new legion in his brain (the size of a pin head) and a 1mil growth on the other small legion in his brain. So quite mixed results. Conclusion from the meeting with the Oncologist is to continue as is for another 3 months with another scan at the end of May. That scan will dictate whether the drug is working effectively enough or not and what course of action we will take next.
However, the next scan results are already in jeopardy as the Public and Private health system have run out of Trametinib nationwide!! Trametinib was the pill introduced alongside Dabrafenib to counteract side effects and prevent the cancer from getting too smart and building up an immunity to the drug. Steve has not received his Trametinib dosage for 3 weeks now. We asked the Oncologist why there is a nationwide shortage and they advised it is because everyone who is taking this drug in NZ has received it on compassionate terms which means no funding from the Government and the drug still hasn't had FDA approval. The drug company makes this drug when they have some 'down-time' aka not on the top of their priority list as they're not being paid to do it. We are quite frustrated with this as it is putting Steve at higher risk and he is already experiencing stronger nausea and headaches - which he has never had in his life! We have enquired about other treatment options but we are not allowed on these until the current treatment has been medically proven to 'fail' given that, it's still not a guarantee as to whether we will have another option other than chemo - 40% success rate!
I am now hunting down natural remedies! I was very inspired by a documentary about Anders Ferry and Ben Williams - two men who survived Glioblastoma aka The Terminator which featured in the NZ Herald not too long ago. This type of cancer is very aggressive and people with it usually only survive 12 to 18mths. The health system could not help them enough and basically closed their doors, their only choice was to explore natural options to help them battle their cancer, I have included the video in this post if you wish to watch (1.5hours long).
Our plea is for the NZ Government to recognise the value in the many natural remedies out there and provide Kiwis options when treating their cancer, not just being put through a system like a herd of sheep waiting for the next trial to finish and drug to be approved.. Some people don't have time to wait, we need to action before it's too late and another life is lost in the name of science.
Love Amanda & Steve
- Steve's condition:
So far Steve is progressing well on the Dabrafenib/Trametinib medication prescribed by Auckland Oncology and is not having any side affects as yet. He is also seeing the benefits of having Intravenous Vitamin C twice weekly. He still does not have much of an appetite and is requiring a lot more sleep than usual as he is often fatigued. There are occasional good days now where he is more mobile and alert.
- ‘Give a Little’ page:
From Steve and Amanda: “We are both blown away by everyone’s generosity and so happy to have reached our initial target of $5,000. We would like to make a special mention to all at the Tutukaka Coast Community Church who have given, we haven’t met you yet, but you have all been so amazing with your support, financially and your prayers. Thankyou!
Thanks also to all of our family, friends, and work colleagues for your support. You are the people that bring the sunshine to each day whether it be by your donations or little texts you send or your words of encouragement and helping us stay on the positive road”.
- Medical/Treatment Update:
Steve is due to meet with Mike McCrystal on the 22 December for his first check-up since starting the Dabrafenib/Trametinib treatment. This will be predominately around making sure there is progress and everything in his body (organ wise) is doing okay and responding to the medication. Steve and Amanda were advised earlier on in the piece by the oncologist that these particular drugs do not have a long life-span. That is, they tend to work very quickly and produce results but only hold everything ‘at bay’ for a certain amount of time. More research needs to be done to establish how the treatment can be made more viable as a long term solution.
- Their Financial Plea:
Please share this page with people you know that may be able to help out. As Steven and Amanda are only living on Amanda’s wage now, with a mortgage to pay and no financial help from the government or insurance, they are unable to cover mortgage costs or any of their day-to-day expenses, not to mention the cost of the treatments. We want to give Steve the best possible opportunity at becoming Old Man Steve. As has been said before – “you don’t go to war with only a few soldiers, you rally all you can get”, and that’s what we want to do – to attack and beat this cancer!
Merry Christmas from Steve and Amanda. A massive thanks for your love and support.
An update on behalf of Steve and Amanda...
- Steve's condition:
Very tired and fatigued at the moment, Steve is unable to eat very much due to frequent nausea and has lost some weight (currently trying to manage this), too much activity wears Steve out quite easily. Steve is off work indefinitely, and Amanda is off work at the moment also. Both of their employers (Agility CIS and Chorus) have been incredibly understanding and accommodating.
- Give a Little page:
From Steve and Amanda: "We would like to thank everyone for their contributions so far. Whether you know us personally or not, we've been blown away by people's generosity. It means so much that people are thinking of us and care about helping us through this time. Thank you for all of your kind, encouraging, humorous messages and financial help.
- Investigations:
On the date of initial diagnosis it was picked up on a PET scan that there was the presence of cancer in Steve's brain. Steve was referred to have an MRI. The results show that there are 3 small metastatic nodes in his brain. Chemotherapy/surgery are not deemed necessary at this time.
- Treatments:
Steve's treatment is being overseen by Dr Mike McCrystal, specialist oncologist, at Auckland Hospital. Due to Steve testing positive to having melanoma gene mutation (BRAF Mutation Test), he will start a course of gDabrafenibh (B-RAF inhibitor) and gTrametinibh (MEK inhibitor) medications on Friday. This treatment is designed to target the growth of metastatic melanoma carrying the B-RAF V600E mutation in the cells/DNA. This treatment is not funded by the healthcare system in NZ.
Steve will be closely monitored. There should be noticeable improvements within a matter of weeks, and within a couple of months the oncologist will know how the melanoma is responding to the medication. In addition, Steve is also having a high-dose Vitamin C intravenous (IV) infusion twice a week. This is considered a safe, complementary treatment. The aim is to support Steve's immune system, which needs to be as strong as possible to fight off the cancer. There have also been claims that it can assist in the reduction of cancerous tumours.
All in all Steve and Amanda are coping well and they have fantastic family support near by. They are taking each day as it comes and staying strong for each other.
Many thanks again for assisting them in the fight!
