When your life goes places others can’t see!
I end with the loudest longest scream you can imagine, the most gut wrenching, energy depleting, soul exorcism cry for a different reality.
I begin with the scene which demands the first of a year, a lifetime, of broken promises: “We think its something sinister” is how the surgeon described the black mass showing on my daughters x-ray. Ruby looked at me for reassurance. We were on a day visit to the hospital to try and sort Rubys sore shoulder out — it was the first week of 2017. Summer holidays here in New Zealand.
Ruby and her older sister and I had just returned from spending New years Eve in Auckland with their Grandfather as it was also his birthday. Being teenagers the kids just wanted a quick trip and back to their friends. I stopped at Hobbitville on the way back and I should have realised then how sick Ruby was as she screamed like I have never heard her scream that she didnt want to visit Hobbitville and to keep driving — her reaction made me feel sad and small.
We went home from hospital that evening — they wanted us to stay for a full set of scans but they had made it clear it was cancer and I explained that Ruby needed to be home with her dog and her Mum and sister — we returned the next day to complete the scans. Everyone at Wellington hospital treated us with care and efficiency — no waiting for anything so we knew it was serious!
Within a day or two we were flown to Auckland Starship hospital. Ward 24 so we were still “normal” — I stayed with Ruby in her room. Her biopsy was booked for the next morning, a full surgery on her upper right humerus under General Anesthetic. I asked the surgeon if the biopsy was necessary, “couldnt we just take the affected bone straight out, wont the biopsy just spread the cancer” I said — he pointed out to me that the cancer cells have already most likely spread into the bloodstream.
I dont remember everything from that first week other than Ruby walked right into Theatre the next morning, she put herself on the operating table and we locked eyes and told each other how much we loved one another as the white anesthetic travelled up her arm with her telling me how cold it felt.
The nurses were wonderful to Ruby on ward 24 — the next evening ward 27 (oncology ward) sent a nurse down to collect Ruby, the biopsy had confirmed osteosarcoma. Ruby rarely showed sadness, but she was frightened and sad to leave ward 24. We all told her how ward 27 is the beginning of her getting back to school, getting rid of this bone cancer. Her mum and sister and I were all frightened too, we had been sheltered from cancer and had no experience of the bald, tube ridden cancer world — we all knew that elevator ride up to level 7 was taking our normal lives away. It felt like a step into the abyss— but we all wanted to get this nightmare over with, get Ruby’s arm fixed — you see — she was totally well at this stage other than a sore shoulder. On the fourth day after her biopsy Ruby was asked to walk into theatre once again, once again she bravely walked in. This time to get her port put in (the port is a semi permanent tube surgically inserted into the chest which provides iv access just below the skin via inch long port needles). That first stint in Starship hospital was eight nights. I stayed each of those nights wanting to protect my special little girl. I had become so anti chemo over the preceding years of natural health study and was now faced with having to sign off on it all. The head adolescent nurse explained to me how she has seen chemo work. I explained to her I just need Ruby to believe it — and believe it she did.
Ruby was in pain from both surgeries but the chemo started and it did her head in. The constant interruptions from nurses giving meds and four hourly obs seemed to deprive us of any sleep. Then a cherie early morning doctors visit (they tried just once to bring in seven registrars but I told them this is not a circus and to leave) where they wonder why you are tired. One of those first week nights I had taken the pan to the sluice room (had to take all the urine, every chemo stay for weighing) and was so tired and exhausted, I had no idea which room was ours — a nurse placed her hand on my back and guided me to the right door saying “don’t worry, I’ve got your back” — that act of kindness and words of support stayed with me for a long time, never had I needed it more in my life.
It was six or seven weeks before we got to fly home with Ruby after that first run of treatment. We would stay down the road from the hospital at Ronald McDonald House (cant praise this service enough) so that in between chemo treatments, which were five days and nights in hospital each time, Ruby would stay with us down there and her mum and I tried to split the nights up on the ward while the other cooked down at RMH.
The shock, exhaustion and being a newbie meant that it took us some time to work out how to make life on the ward a little easier. We learnt what meds Ruby wouldnt take, what made her feel worse, better, how to switch the beeping and alarm noises off on the chemo pumps so as to cause less stress while waiting for a nurse (they dont show you these things, just expect you to figure it for yourselves). Each new round of chemo meant having to establish ground rules with the nurses re meds — especially learning to time them with obs, that gave Ruby more sleep instead of being woken up separately for both.
The oncology “team” explained to us that Ruby had an eighty percent chance of surviving her cancer. In hindsight I realise now that estimate was grossly overstated and the statistics included all bone cancers, not just the very aggressive form of osteosarcoma Ruby had been diagnosed. But at that time we knew no better and tried our best to support Ruby through thirty two rounds of chemo. Incidentally I had written in my notebook the two chemicals I would not allow her to have but soon found that both those chemicals were prescribed — I focused on the stats given us and tried to go with the flow. I focused instead on ensuring all Rubys procedures in hospital were done with the utmost care and diligence and in most part the staff understood and responded with empathy and skill.
So to recap: we were in shock regarding her diagnosis and six month plan of surgery and chemo. We were shell shocked by lack of sleep due to the helicopters landing all hours below her windows, continuous beeping call buttons and pumps on ward, endless meds and obs — BUT we were positive and set to get Ruby through this ordeal and back to her life!
End of Part One.
I will come back and rewrite from this point in the detail I had intended so that the family members who stayed away and the friends on the outside can get an understanding of what Ruby went through. It is important to mention the financial support Ruby and her Mum and sister received from our local community and wider friends — it enabled us to all be with Ruby and even though at times it was easier with just one of us around I know Ruby would not have swapped those times around as she loved family no matter what was said or going on.
But for now I am consumed with guilt and sorrow — you see for some strange twist of fate I had made a new friend two years prior who had lost her husband to cancer and together we researched and learned what we could about preventive health and treatments. I had watched the first run of “The Truth about Cancer” series and read many accounts from alternative doctors and people who had cancer experiences. I was already consuming apricot kernels daily (after seeing the English couple who cured both their cancers with Amydalin post chemo failure). My diet was vegan and I was juicing regularly (still is and am). I had friends who had died from cancers, some quickly and some after many years of so called remission. My father has lived with cancer for over ten years but he never had chemo. What I was in agreement with my new friend was that chemo does not cure cancer in most cases — at best it can give you additional time but at a huge cost to your bodies general health.
So heading to Auckland Starship with my wonderful daughter I was determined that the two chemicals written in my book would not be given to her — of course both were. They swayed me by telling me Ruby had an eighty percent chance of survival — which I believe is false for Osteosarcoma but perhaps accurate for all bone cancers overall. At eighty percent odds which parent wouldnt back their daughter to win? It seemed achievable so we progressed down the funnel. Ruby had drunk juices from me and even eaten some kernels at this stage but once the chemo started it knocked her for six. It took all her effort to maintain some weight between chemo weeks as food was difficult to eat and keep down — the nausea and loss of appetite for Ruby was huge. Within a few sessions Rubys blood was taking longer to recover enough for the next session — so the sessions became delayed while we lived in fear and stress with her neutrophils often at 0 and at severe risk of infections she wouldnt be able to fight, and bleeding noses as her platelets fell, no energy as her red blood cells died and couldnt transport her oxygen. Chemo was a nightmare for her and inevitably for us all — Ruby and I would fly up from Wellington with her bloods still low, shuttle in to Ronald McDonald House at bottom of Grafton Road — walk up to clinic, often wait for up to two hours to be seen, then port accessed etc… it is a big needle and one afternoon they took six attempts to get the needle in correctly with one nurse freaking Ruby out by saying her port must have flipped — so a trip down to X-ray to prove her wrong thank god!
During the so called “breaks” (often in Wellington hospital for platelet and blood transfusions) she would take a few supplements to try and help like curcumin and she would do three nights taking artemisinin but for that to have any effect the theory is you need to preload with iron and we were trying to use an iron tonic which she couldnt keep down — later we used iron tablets (probably only 2 or 3 times) but generally she didnt preload in the later months. I ordered some artesunate from overseas as this is far more effective than the natural artemisinin we were using — it was stopped by customs and Rubys doctor wouldnt sign off on it asking the Starship pharmacist to come up with a scientific reason as to why he wouldnt (anyone interested should look at Artemix as it has all three derivatives of artemisinin — but study dosage, sad that customs most likely would have let this pass boarder as is sold as supplement but I never tried). I felt a lot of opposition to the kernels I had and knew Ruby couldnt swallow or eat them — she wouldnt allow them in a smoothie either but she was hardly drinking those as it was. Her mum was very anti the amygdalin (kernels) and there was huge stress already for everyone in between the chemo weeks and double that during the chemo weeks and hospital stays. If it sounds like I am reaching for excuses I am desperately tying to understand why I didnt proceed with B17. I found this article online http://www.charlottereeves.com.au/blog/2011/05/update-albert-is-cancer-free/ and sent it to Starship 6/9/17 and saved links for purchasing the viles to inject. I vaguely remember trying to figure out how to give vitimin C by iv and I am sure I dropped this idea as the evidence I was reading was that vitamin c could in fact hinder the chemo effectiveness — however I should have revisited that once chemo was stopped. As for importing the B17 (which is amygdalin which is from apricot kernels) I can only think I was focused on getting the artesunate- my brother even made a trip to the states late last year and would have been easy to get him to bring some back — but I didnt do it, I remembered the Charlotte Reeves (I had correspondence with her at the time to confirm story) dog success article just last week… and I am beside myself for not seeing such success staring in my face the whole time.
Rubys last months were aided by cannabis oil — she did not have to go to hospital — the oil in my opinion cleared the fluid in her lungs to a comfortable level where her coughing stopped. She had some great days especially her sixteenth which I dont think would have been possible without the oil. I regret I didnt introduce the oil many months sooner but was advised by her Oncologist that it could be made from mouldy leaf putting Ruby at great danger when her neutrophils were low. However there again I ended up learning to make it (so much reduced risk of bacteria) and should have done so many months earlier. I had become convinced in her final months that the oil was reversing her cancer, that it could cure her by stopping the cancer progression and if it cant grow it dies. But this delusion of mine perhaps stopped me from seeing she needed more — maybe even at this late stage the B17 could have worked. My belief though is that both B17 and cannabis need to be given prior to metastasis because that is what they are best at preventing.
When the bone analysis report came back showing a poor response to the chemo I should have risen and acted on what I had been shown over the previous two years. I should have stopped the chemo there and then before metastasis allowing her bone marrow to recover and started the oil, B17, Vc. Each night I stayed in the hospital during chemo sessions the light behind her bed would flick on then off again — didnt matter what room we were in it happened.
“Why didn’t the chemo work?” Ruby quietly asked me one day — all I replied was “I don’t know” — I should have been stronger at that point and at least tried to get her onboard with the kernels — I didnt want to cause her any further stress, I just wanted her to enjoy some time, there was no time, she was still recovering from the chemo… I am so sorry Ruby. I know you trusted me. In hindsight it seems so ludicrous that people were concerned about cyanide from the kernels — the cancer was not responding to the chemo. I suppose it gets to a point where you just dont want to lose someone so much that any risk becomes too great, although we allow the greatest damager which is the chemo of course. What if… what if… what if I had at least got her on the cannabis earlier while still on standard chemo rounds: would the chemo have been more effective — we were so damn scared of infections when really as had we discussed it all openly we may have all decided the risk worthwhile- so that now I also feel that our dysfunctional family unit was a reason we didnt work together to offer Ruby a wider spectrum treatment.
The oil and B17 (“Second Opinion” about the cover up of Sloan Ketterings B17results with mice trials and subsequent flawed human trial where its ability to halt metastasis could not be measured as all cases were late stage where metastasis had already occurred). B17 has also been added to most of Gerson Practitioners schedule although not officially part of the diet) certainly could have been given alongside her standard treatments of chemo and the oil may in fact have aided the chemo effectiveness (there is one fully documented case in which Bonni Goldstein M.D. successfully treated a teenager with osteosarcoma stage 4/5 with oil while undergoing palliative chemo in her book Cannabis Revealed) — so there was no reason to stop what everyone else felt was right — there was every reason to add what only I knew could help — and I didnt… and shes gone!
She had a stroke the day after her sixteenth birthday — it seemed to progressively take her away over the next two days, no movement on her left side, but she was lucid and talking well, no more oil as swallowing capsule too dangerous — the flem returned to her lungs, she wasnt upset or panicking, I slept next to her, my left hand fingers entwined with her right right fingers, I would kiss her hand and she would kiss mine — that night she woke me, I had time to get her mum and sister but we could not stop her going, it was all too quick, she had been so wonderful on her birthday, my brain just couldnt, cant compute the sudden loss (of course you had to see her on her birthday to appreciate why it seemed so sudden).