Post Number 35 - Sebastian and Me

Many people often ask me "How is Sebastian coping with everything?" and seeing as though I haven't written much about him, I thought I would take the time now to tell you a little more.  Sebastian is in his first year at school (Reception) and he has taken to the change extremely well, despite finding out about his father just two weeks in!

He makes friends easily and is a good student.  He proudly shows his reading level to be at 5 and his school gives him all the support he needs to thrive.  He has so much going on in a week with sport, Japanese, maths, computer room, singing, music,show & tell (with specific topics) and library, that his school life is never boring.

There has however, been moments of uncertainty which of course, he has felt.  He never says much, but I feel him cling to me, not in the physical sense, but always wanting to spend time with me.  I managed this by doing special projects with him such as a huge mural painting where we both drew pictures and then painted. It took several weeks to complete and now hangs proudly in our kitchen.  We also do daily gratitude at dinner time where we all express what we are grateful for each day before we tuck in to our paleo dinner.

The most important thing is to ensure we keep the lines of communication open and that he feels that he can talk to us about anything at any time.  Never have we shushed him or told him to be quiet.  We always try to listen to everything he says and make him feel that he has been heard.  We find this to be the most effective way, although sometimes we all need a little peace and quiet, so we might say "alright, well that all sounds wonderful, but let's eat our dinner now and then we can do something special together before bed" or something like that.

I have watched Sebastian's relationship with his father deteriorate quite considerably, almost to a point where he almost ignores or seems to forget that Mark is in the room.  This hurts me greatly as his bond with his father used to be very strong.  I first noticed this when he told me that I was his favourite parent.  This shocked me as I am usually the task master and Mark would always be the one who would do the fun stuff with him.  I remember being jealous about this a while ago, but now I am the one having special moments with him and playing in the land of Skylanders. 

A few weeks ago, a very strong migraine completely crippled me.  I had to lay down and rest and while I tried to get someone to pick up Sebastian from school, it just didn't work out.  Feeling a little better after the rest, I went to school.  As Sebastian came running out of his classroom, I felt the colour leave from my face and my body grow weak.  I grabbed him quickly by the hand and pushed my way through the crowds of doting parents and headed for a bench next to a garden area where I threw up.  Sebastian was horrified that his rock-solid mother had fallen ill.  I sent him to fetch a glass of water and some tissues and he ran to get help.  Later that evening, we had a big talk about being sick and how even Mummies fall ill too sometimes.

Another way Sebastian copes with everything, is by feeling like he also is a contributor in the household.  He has daily jobs to complete and he helps out with other things as they arise.  Each morning he makes his bed, turns off his heater and opens his curtains.  Recently, he has started making our bed as well, unassisted and without being asked.  He is so proud of himself and we always tell him how grateful we are of the extra effort he puts in.  He also helps me with the dishwasher and clearing the table after meals.  He dresses himself and packs his own schoolbag.

He has grown up so much over the past six months and we couldn't be prouder of the boy he has become. There is still much re-bonding that needs to occur between him and his father, but that will come in time.

As for me, some days are still a struggle.  While Mark has made some huge leaps and bounds in his condition, this week has been particularly tough. Mark has been feeling quite tired for the last four days and tends to withdraw.  When he is feeling down, I also go down with him and some days I have just wanted to walk away.  I get short, snappy and grumpy and just down on the whole world.  Just yesterday I scratched and dented my car in a significant way.  I felt so angry about everything.

Waiting to be served at the supermarket, I looked into the trolley of a lovely middle class looking women with a lovely dressed kindy aged child.  The child was crawling dangerously on the seat of the trolley, the trolley overflowing with groceries.  I couldn't help but notice the massive box of Corn Flakes, the large box of ice-cream cones and the equally massive box of small packets of chips that was teetering on the top of the trolley.  I looked down at my trolley full of vegetables and other organic specialty products and just wanted to scream.  Why?  Why is it when we have been eating healthy and nutritious food for the past three years, are we having to deal with this?  WHY!!!! I wanted to scream at the lovely lady and to everyone in the entire supermarket...DON'T YOU KNOW WHAT YOU ARE FEEDING YOUR FAMILIES???  Throwing my bags into the car, I backed the car out, only stopping at the sound of the thud of hitting the car park pillar.  Furious at myself, I burst in to tears.  It's just not fair, we are doing all the right things, why is he sick, why is he so tired, why why why?

So yesterday I had a little "self-pitty" party and today is a new day.  After crying away all the anger, I feel somewhat better.  Certainly the paleo lifestyle is agreeing with me and I feel lighter on my feet and just an overall feeling of wellbeing.  But everyday is still hard work and last week I committed to two subjects at college which are due to start very soon.  At the time, Mark was feeling well, happy and relatively mobile and even quite self-sufficient, so it seemed safe to make this commitment. But now I wonder if I have made the right decision, but if I don't study, I feel I WILL go completely mad.  I need to get out and socialise with people.  Everyone I know seems to have their own problems, issues or busyness.  People often say, "What can I do?" or "Yes, lets catch up" and then I never hear from them again.  I don't blame them or get angry as I do understand, but I have to do what is right for me and what makes me happy.  Going to college makes me happy.  Meeting likeminded people, makes me happy.  Forgetting about my difficult life for a few hours, makes me happy. So I guess my decision stays and we see what happens over the coming weeks. 

Maybe all we need is a carbohydrate rich lunch! Some chips, bread, rice and pasta and all will be well again! ;-)

Post Number 34 - From Hoplessness to HOPE!

There has been so much development in the last three weeks and I am pleased, relieved and proud to say that we now have three practitioners who are all working together to cure my husband.  Yes you read correctly, "cure".  However, we are talking about a disease that does not have a cure, cannot be surgically removed and cannot be cured or reversed by the modern practices of radiotherapy or chemotherapy, so how can this happen? Can it even happen? Modern medicine would say NO, but I say, Why Not?

It's a giant, complex puzzle, but with the right practitioners on board, we believed anything possible and certainly worth investigating every option.  The Chinese doctors have been working their magic and after two and a half weeks of modifying and testing the homeopathic detox remedy, Mark's kidneys finally starting working properly and heavy metals began appear in his urine.  They also worked on toning his body and increasing his energy levels as well as ensuring his body was ready to accept any kind of medicine to treat the tumour.

Another doctor we have been seeing is a holistic GP in the Adelaide Hills.  He has been ordering all kinds of blood tests to further pinpoint exactly what is going on within Mark's body and making any corrections necessary with IV infusions, specific supplements and diet.  Through his investigations he found a gene mutation which explains the thickness of his blood, which had shown up on a live blood analysis, and also explains the meridian blockage.  The effects of this mutation can easily be managed by high doses of folic acid, which should also help with his fatigue.

The third practitioner is a Naturopath who has treated brain tumour patients in the past.  He provided us with information on a compound called dichloroacetate (DCA) which has been studied overseas with great success and there are clinical trials currently underway in Australia, but of course we didn't have any time to waste, so we began treatment immediately, under his guidance.
http://www.abc.net.au/news/2014-10-27/cancer-drug-trial-to-start-in-canberra/5842910

Within 24 hours of Mark taking the DCA we noticed an improvement.  One good day followed another and another and each day his mobility improved slightly and he started feeling stronger.  Not even a week later, he was walking down the street at Stirling, when the previous week, the walk out to his office and back to the house again meant complete exhaustion for the rest of the evening.  The changes have been nothing short of a miracle and it couldn't have come soon enough.

Life had become so challenging and I had been struggling with the mental and physical stress of caring for him and for Sebastian.  Endless trips to practitioners and to and from school had taken its toll on me and weekly I would experience migraines, which I had been free of for years.  Each night I would collapse with exhaustion after constantly being on the go from 7am to 9pm.  I was only days away from calling palliative care and seeking some sort of live-in nurse or daily help.  While the Carer Support was helping, I was and still am struggling with other people in the house.  Last week I was privileged to receive the use of a gardener for three hours.  I felt so lucky to have access to this at no charge and set him to work with a list of tasks to complete.  However, days later, when I finally had the time to look over what he had done, I found that he had not completed what I had asked and in fact, has now created an even bigger workload for me, as he has raked up all the existing mulch and left me with nothing but dirt in a large, inaccessible part of our garden.

Similarly, carers have thrown away some of my expensive ingredients, put things away in places which are now a mystery and not followed instructions, leaving more work for me to do upon my return.  Exhausting is the only word I can use to describe the last three weeks.  In-between all of this, I needed to finish two final assessments for College and failing to do this would mean failure of the subject.  Again the migraines came, but with appointments starting to ease, I made the time and completed the work, albeit not at the standard I would have liked, but hopefully good enough to pass.

Last week saw Mark turn 38 years young and I felt compelled to create some sort of memorable celebration for him.  I contacted a select few of his closest friends and asked if they would join him to commemorate his birthday.  Our kind and generous neighbours allowed us to use their "man shed" which is fully equipped with pool table, dart board, lounges and beer fridge and the afternoon was a great success.  Clearly Mark's energy levels were at their peak as he made his way up the hill to the shed, then down and up again several times within the two hours to use the toilet in the main house.  Surprisingly, he made it through the afternoon and did not even seem to feel the effects of such a huge day the following morning.


I feel I want to scream from the rooftops "He's Healed, He's Cured!" but I must remain calm and realistic.  It is still very early days and even if the tumour regresses (which we feel it has), this does not necessarily mean it will be cured or gone completely or even forever.  But, what is important, is that we continue to look at Mark's health in a holistic way.  While DCA may be making a huge impact, it is most likely due to the initial work done by the Chinese doctors, the supplementation and constant watch on his condition by the holistic GP as well as the change in diet toward a low carb, low sugar and higher protein (paleo fits this the best).  As for me, some days are easier to manage than others.  Some days I turn into a screaming banshee if someone demands just one more thing from me or rolls their eyes at the food I have prepared or gives a big sigh when I say "it's time for bed", but I am doing the best I can with the resources that I have.  Seeing Mark improve every day and seeing him try to help me, gives me strength and helps me to push on.  The love we have for each other keeps us going and keep us trying to achieve all we can each and every day.  It may seem an impossible task at times, but looking back at how far we have come in such a short time, gives us hope that there will be a future worth looking forward to, but for now, we take it one-day-at-a-time.