This nightmare continues........

This morning I was delighted to receive the letter of apology from Galvez Hospital, where they admit that they had not checked baby Aiy�la as per their own protocol. At the time of reading the letter, I actually thought that life might be taking on some kind of normality.

Clearly I was wrong.

Earlier this week, I went to the local health centre to register the baby so she could be seen by a pediatrician. Unfortunately we failed, as we noticed that the children's hospital in Malaga, sent Kyla and the baby home with the wrong patients details. Our medical form with all the medical history was for a child called 'Mohammed'. With all the paperwork ( and anyone having any kind of experience with any authorities in this country, will understand when I say ' with the huge amount of paperwork' Kyla and Dan received, they did not notice that they were given the wrong paperwork.

This meant that the local health centre would not / 'could not' register Aiy�la and therefore no pediatrician would see her. Kyla had an appointment to see the doctor in the Malaga hospital tomorrow for a heart and leg scan as well as blood test. That was the plan.

But, this morning Kyla noticed that the leg with the Thrombosis was swollen and red. Kyla has been giving Aiy�la daily injections in her leg. ( I take my hat off to her, I am not sure I could do it, but as there are no health visitors or any other nursing support here, parents have to do it) We really thought the injections were helping, but then why is the leg swelling up suddenly. They took the baby back into Malaga hospital and are waiting to see a pediatrician who will also hopefully carry out a leg scan.

I just want this lovely beautiful baby girl to be alright. We all do. I can't remember being more stressed then I am right now. Watching the suffering and not being able to do anything about it, is so awful.

I am due to have Herceptin again tomorrow ( if my veins are ok), but actually just want to be with Kyla, Dan and the baby.

Someone please give us a break! Enough is enough!

So sad.........

I want to dedicate this page to Dolly, who I wrote about last summer. A courageous, brave,  fun loving young girl has lost her life to cancer a few days ago.

Dolly was first diagnosed  with junior Sarcoma in her right elbow at the age of 6 years old. She went through chemo three times between the ages of 6-17 years. She suffered through 14 operations to try and save her arm, but eventually had it amputated a couple of years ago, when chemo did not help. By the time she was 19 years old,  after a routine scan she was told that she had Metastasis in her lungs. The doctors advised her to have a fourth chemo session. They told her that the chemo should kill her before the cancer would, but it was the only thing they could offer and that there was no cure. They informed her that if she did not have chemo she would only live another couple of months. Dolly started her fourth chemo round, but she got so sick, lost weight, all her hair and decided not to continue. After nearly  14 years of on and off of Chemo, which had not helped and being told that nobody could help her cure the cancer or prolong her life, she turned her back on conventional medicine.

This is when Dolly decided to try Cannabis oil instead.  For the last 18 months, she lived a happy life and even though she only had one arm, she made the most of her borrowed time.  During the time she took Cannabis oil, she was pain free and as care free as she had ever been.

Even though she lived nearly a year and half longer than the doctors predicted, she started the Cannabis oil too late, it prolonged her life, but did not save her life.

A tragic end, the last 4 weeks, she suffered terribly, she struggled to breathe and was in terrible pain. The last 2 weeks, she said that every time she fell asleep, a man was trying to take her away and she did not want to go. A brave little fighter until the end.

But, her name will live on. The Calvia Lions in Mallorca, where she lived, are going to start 'The Dolly Sanchez Cancer Fund', which will be a permanent fund to help finance 'poor' people with cancer to buy things like decent wigs, semi-permanent eyebrows etc.  Dolly would have been so happy to know that in her name, help will hopefully be offered to other youngsters suffering from cancer.

Home..........sweet home..............

Yesterday afternoon we all went home!  After a heart scan and a scan in the leg , where they confirmed that Aiy�la has Thrombosis as a result of the operation, it was agreed that Aiy�la could be released, as long as they could check her again on Monday morning.  
Hearing this, felt like heaven!

The last two weeks, we feel we have all held our breath, life simply stopped and everything we did, every thought we had, was just focused on this tiny little baby in hospital, as well as her mum and dad.

She is home and hopefully life will take on some kind of normality again.

I would like to thank the many many friends and family who have supported us in their different ways over the last few weeks. I know from friends, that people we have never met, were praying for us (and whilst I myself am not a �believer, I can�t help but feel, some �magic� / �miracle� has happened), researching and sending us information, constantly supporting and contacting us.  I am so grateful for the support during what seems like our darkest hours.  My cancer journey seems nothing compared to what this little girl and Kyla and Dan have been through.

The last two weeks, I have to admit, I had no time or interest to think about myself or my progress. I simply functioned, and living in Malaga for this time, we did eat out a lot. This meant I ate �normally� again, as I have prior to me being diagnosed with cancer.  I struggled with this. The food around us, so often is not pure and healthy and the long term effects can�t be positive on our bodies.

I had scrambled egg ( not as lovely as the eggs my chickens produce J), but nevertheless I figured I could not go wrong with that. I did go wrong, the cook had added sugar to it.  Maybe in the past I would not have noticed, but not having had sugar in 9 months, I can now identify it quite easily. Why? Why would anyone add sugar or was it sweeteners?

This got me researching again. I spent nearly 30 years using �Canderel� sweeteners in my tea and coffees. Probably 4 little pills per day. I always had a �sweet tooth�. One of the components in Canderel is Aspartame. Until I started looking into this, I have never heard of it.  

Aspartame causes cancer!

This Is Your Brain on Aspartame

If the prospect of cancer is not enough to deter you from drinking diet soda or consuming processed foods sweetened with artificial sweeteners, consider the effect that aspartame has on your neurons and your cognitive function. In a study published in Redox Biology, researchers found aspartame may essentially program your brain cells to die.40

These biochemical and mitochondrial changes alter the functional activity in your brain, resulting in altered neuron function and neurodegeneration. The researchers theorized the results were from the effects of methanol molecule or the metabolite, formaldehyde or formate. This study also demonstrated that long-term use of FDA approved levels of aspartame distort your brain function.41

Another compound found in aspartame, phenylalanine, is delivered in excessive amounts and depletes your brain of serotonin, possibly one of the factors responsible for the increased number of people suffering from depression who regularly eat foods sweetened with aspartame.

A study planned by Case Western researchers was designed to evaluate the effects of aspartame on the mental health of their participants.42

However, this study was halted early by the Institutional Review Board citing safety reasons and severity of reaction to individuals who suffered from depression when exposed to aspartame. Reports of neurological and behavioral disturbances after ingestion of aspartame include an increase in headaches, migraine headaches,43^,44,45,46 insomnia and seizures.47

Another study demonstrated that a high-aspartame diet resulted in more headaches, irritable mood, depression and poor performance on spatial orientation tests.48 A large concern is that the �high-aspartame diet� consisted of half the amount of aspartame the FDA considers safe for daily ingestion.

https://youtu.be/TB6L9S_jc5E

By Dr. Mercola

Artificial sweeteners such as aspartame are typically used to sweeten so-called "diet" foods and beverages in lieu of sugar or high-fructose corn syrup (HFCS). The idea is that reducing your calorie consumption will result in weight loss.

However, research has completely demolished this notion, showing that artificial sweeteners actually have the converse effect; they actually lower appetite suppressant chemicals and encourage sugar cravings and sugar dependence, thereby raising your odds of unwanted weight gain.1^,2

Research has repeatedly shown that artificial sweeteners promote insulin resistance and related health problems just like regular sugar does, including3^,4,5 cardiovascular disease, stroke6^,7 and Alzheimer's disease.

While poor diet is a major driver of Alzheimer's in general (the primary culprits being sugar/fructose and grains, especially gluten), the key mechanism of harm here appears to be methanol toxicity � a much-ignored problem associated with aspartame in particular.

In a previous interview, toxicology expert Woodrow Monte, Ph.D., (author of the book "While Science Sleeps: A Sweetener Kills"8) explains the links between aspartame and methanol toxicity and the formation of toxic formaldehyde.

A small result......

I met with the head of the department in Galvez Hopsital today.  A lovely lady called Angela Leon.

After asking her to explain their protocol when a baby is born, we soon established that the hospital did not follow their own protocol. According to Angela, the pediatrician should have checked the baby the morning she was born, which did not happen.
I remember and also told Angela this, that the pediatrician in the dreaded night ( when we weighted for 4 hours for the ambulance arrived) had told Kyla that she had emergencies to deal with that day.

I personally fail to see how this could be an acceptable answer, when Kyla's and Dan's baby needed an urgent heart operation the day she is born, how this is not classified an emergency.
I also addressed the behaviour and actions of the rude nurse, who told Kyla that she was 'starving the baby'.


To cut a long story ( meeting ) short, Angela Leon, apologised officially and admitted that they made a mistake and that they acted inappropriately. I have asked for a written apology to be sent to Kyla. She is the one who suffered most as a result of the pediatrician who could not be bothered to check the baby and the rude nurse, and the wasted hours of worrying in hospital about the fact that the baby would not wake up and did not feed, not to mention the traumatic 4 hours when we had to wait for the ambulance to arrive, whilst we are not allowed to see the baby.

I have to admit that after my  meeting with Angela Leon, I did reflect on the difference between Spain and the UK. The approach today was almost naive and sweet. At no point did Angela consider that by putting the hospitals apology and admission of their oversight in writing, that some people might use this document. I have no intention of doing anything with the apology, other than to give it to Kyla and to move on, but could not help thinking that if this had happened in the UK, I doubt that anyone would have been prepared to admit their mistakes in writing for fear of it being used against them.
I was happy with the result of my meeting, because it is important to me that Kyla does not blame herself for a second. It is so easy to blame yourself, even I have blamed myself. Why did I not spot it? I gave birth to three children myself, surely I should have noticed that something was wrong?

A good day..........

After a more of less sleepless night, spent on the floor for Kyla ( we brought in a mattress from home) and on the chair for Dan, the cardiologist finally arrived today. He confirmed that he was happy with the result of the operation. Baby Aiy�la is nearly 'wire / tube free' tonight. They removed the oxygen, the feeding pipe, the drip ( which was connected to her head) and various others tubes. She is no only left with the heart monitor attached to her foot.  This is fantastic news, as Kyla can pick her up easily now, which has made all the difference to feeding her.
Gone are the bottle of expressed milk, baby Aiy�la is feeding from her mum! Thank heavens!

Tomorrow the doctor will show Kyla and Dan how to inject Aiy�la into her leg daily, to avoid possible thrombosis. This is where they entered during the operation in order to get to her heart.

Fingers crossed we are on the 'home run'. Wouldn't it be amazing if we could all go home by the weekend. We know that the baby has to be checked by the doctors once a week, which is fine and we are delighted that they have requested this.

There have been some funny moments today, when Dan and Geoff were left in the hospital room by themselves to look after the baby. I had my meeting with the manager of Galvez Hospital and Kyla had an appointment with the gyny to check her stitches. This left the two men in charge.
Murphy's law, Aiy�la needed a major nappy change ( due to having had a good feed from mum) and then needed feeding with a bottle. I would love to have been a fly on the wall. Listening to the men's report later this afternoon, I think panic set in and it was the blind leading the blind. Thankfully both the men and baby Aiy�la made it through the afternoon.

..............lost for words............

As Kyla can't pick the baby up due to the many wires, and the nurses won't help her lift the baby out, therefore she tried breast feeding standing up in the middle of the night.

Can my poor daughter sink any lower?

Understandably, standing up whilst trying to breast feed a new born,  who is attached via various wires to the wall unit, proved impossible.  ( Show me a mum who could have mastered the art of that one!)
This left Kyla with no choice in having to call a nurse asking her to bring her the milk ( labelled with Aiy�la's name), which she had expressed earlier in one of her bottles.
The nurse promptly returned with a bottle of milk, sadly not with Kyla's, but that of another mother. When Kyla pointed that it out to the nurse, she was met with the same shoulder shrug as last night and then disappeared, leaving Kyla with a hungry crying baby.

Word are starting to fail me...................

Testing times...........

I am struggling to accept the medical system here. The doctors in the hospital are excellent, demonstrated by the successful operation.

When I consider however what has happened today and how Kyla was treated, I struggle not to rush into the hospital now and to pull the nurses over and have a chat. ( putting it politely)

I can only assume that they are understaffed and overworked, but is this no excuse for rudeness and most of all non-communication? Surely anyone working in this field has some kind of compassion? ......or am I asking simply too much?

This evening at 19.00pm, Kyla was told that the baby was being moved to another floor and that she needed to stay with the baby 24/7 ( this is after previously being told she could only visit for an hour), as there was only one nurse on the floor. Whilst that might seem a half reasonable request, after all that must mean Aiy�la is getting better, Kyla walked into a room with a chair.
The nurses then proceeded to roll Aiy�la's cot into the room and plugged the various cables and tubes into a wall unit. ( I should add that the tubes are on her right hand and right foot, but the cables were plugged into the left hand side of the wall, making it impossible for one person to lift out) and without an explanation left the room.

Kyla was asked them if they could help lift the baby out if she needed to feed, to which she received a shoulder shrug. Lovely touch. Kyla did try and call the nurse when the baby needed feeding, but they would not come as they were too busy. This resulted in Kyla having to bottle feed her, which for any mothers reading this, upset her hugely, as she really wants to hold and feed the baby, her new little baby girl.

Kyla is worried about the tubes and cables, the lights and bleeping and has no idea what they are for and how to move the baby, but getting hold of the one nurse on the unit is proving to almost be impossible.

If I try to focus on a positive here, then I have to assume Aiy�la is improving, otherwise surely she would not have been moved to another floor? I hope. As for finding a doctor, this seems to be like finding a needle in a haystack.

We are all stressed out and are  feeling  helpless................ tonight. Tomorrow will be another day and I intend to find a doctor. I am not leaving until we have spoken to one, we have not had a medical update since Friday, which in my book is not good enough.

Researching again.........

I came across this article on Facebook, ( never believe anything you read on Facebook, which is why I looked into it a little further .........)

http://www.naturalnews.com/036526_cannabinoids_breast_milk_THC.html


(NaturalNews) Woven into the fabric of the human body is an intricate system of proteins known as cannabinoid receptors that are specifically designed to process cannabinoids such as tetrahydrocannabinol (THC), one of the primary active components of marijuana. And it turns out, based on the findings of several major scientific studies, that human breast milk naturally contains many of the same cannabinoids found in marijuana, which are actually extremely vital for proper human development.

Cell membranes in the body are naturally equipped with these cannabinoid receptors which, when activated by cannabinoids and various other nutritive substances, protect cells against viruses, harmful bacteria, cancer, and other malignancies. And human breast milk is an abundant source of endocannabinoids, a specific type of neuromodulatory lipid that basically teaches a newborn child how to eat by stimulating the suckling process.

If it were not for these cannabinoids in breast milk, newborn children would not know how to eat, nor would they necessarily have the desire to eat, which could result in severe malnourishment and even death. Believe it or not, the process is similar to how adult individuals who smoke pot get the "munchies," as newborn children who are breastfed naturally receive doses of cannabinoids that trigger hunger and promote growth and development.

"[E]ndocannabinoids have been detected in maternal milk and activation of CB1 (cannabinoid receptor type 1) receptors appears to be critical for milk sucking ... apparently activating oral-motor musculature," says the abstract of a 2004 study on the endocannabinoid receptor system that was published in the European Journal of Pharmacology.

"The medical implications of these novel developments are far reaching and suggest a promising future for cannabinoids in pediatric medicine for conditions including 'non-organic failure-to-thrive' and cystic fibrosis."

Studies on cannabinoids in breast milk help further demystify the truth about marijuana

There are two types of cannabinoid receptors in the body -- the CB1 variety which exists in the brain, and the CB2 variety which exists in the immune system and throughout the rest of the body. Each one of these receptors responds to cannabinoids, whether it be from human breast milk in children, or from juiced marijuana, for instance, in adults.

This essentially means that the human body was built for cannabinoids, as these nutritive substances play a critical role in protecting cells against disease, boosting immune function, protecting the brain and nervous system, and relieving pain and disease-causing inflammation, among other things. And because science is finally catching up in discovering how this amazing cannabinoid system works, the stigma associated with marijuana use is, thankfully, in the process of being eliminated.

In another study on the endocannabinoids published in the journal Pharmacological Reviews back in 2006, researchers from the Laboratory of Physiologic Studies at the National Institute on Alcohol Abuse and Alcoholism uncovered even more about the benefits of cannabinoids. These include their ability to promote proper energy metabolism and appetite regulation, treat metabolic disorders, treat multiple sclerosis, and prevent neurodegeneration, among many other conditions.

With literally thousands of published studies now showing their safety and usefulness, cannabinoids, and particularly marijuana from which it is largely derived, truly are a health-promoting "super" nutrient with virtually unlimited potential in health promotion and disease prevention.

Be sure to check out how juicing raw marijuana leaves, which contain a diverse array of health-promoting cannabinoids, is an excellent non-psychoactive way to prevent and treat a host of diseases, including cancer: http://www.naturalnews.com/035759_cannabis_juicing_health.html

Sources for this article include:

http://www.sciencedirect.com/science/article/pii/S0014299904007423


Learn more: http://www.naturalnews.com/036526_cannabinoids_breast_milk_THC.html#ixzz4YZDCsfaz


Well that is heartening to read! Little Aiy�la and I have a lot in common!!!

Little milestones.......

Baby Aiy�la is still in the intensive care unit, BUT............ Kyla has been able to feed her a little.
This is great news and we are hoping that they will remove the 'feeding pipe' this coming week.

We are also told that Aiy�la might be moved to a 'lesser intensive care unit' tomorrow.  I don't understand how many levels of intensive care units the hospital has, but if she is moved then this is a small step in the right direction.

Kyla has spent all day in hospital, ( nobody else is allowed in during the day), which meant Dan went to work and caught up with Kyla and Aiy�la this evening.

Dare we hope that maybe by next weekend, we can all go home???

Rhea sadly, after a week here, had to fly back home to the UK. Her employers have been amazing in that they let her stay here all week. So sad though, Rhea still has not held the baby!

I can see us buying shares in EasyJet, maybe she can come back when Aiy�la is allowed home.
Jack's arrival next week, might just be perfect timing to meet his little niece.

I am also looking forward to meeting the head of Galvez hospital this coming week. It will be interesting to hear about their 'protocol' and processes when a baby is born. As Kyla saw nobody for 14 hours after the birth of Aiy�la, I wonder if there is a 'protocol'. We will see...............

Light.......at....end...........of ........the .........tunnel........

Dare we say and think it?

Great news, the ventilator was removed this afternoon and little baby Aiy�la is breathing by herself. We are so relieved and over the moon. She is still connected to many cables and oxygen, looking so lost in this room of bleeping instruments which keep flashing ( randomly to us) at different intervals, and we hope that over the coming days more tubes and cables will be removed.

Unfortunately as nobody explained to us what the tubes and cables are doing, as it appears that different nurses look after different parts of the machines.

What makes a doctor become a doctor?

What makes a nurse become a nurse? What makes a surgeon become a surgeon?

Is the love for the job, the fact they want to save lives?  Do they only concentrate on the patient in front of them?

They should, right? After all that is the most important part, they are saving lives?!

But, were it the compassion? Is it really just a �job� to them? Of course, I am not talking about everyone we have met. But there are some that sadly damage the reputation of those that I am talking about.

The cardiologist who operated little baby Aiy�la this morning was lovely, warm and filled us with confidence and positivity.

We have been told that this Maternity Hospital here in Malaga, has an excellent reputation, which is so good to hear. After all, the medical care is the most important thing, but������..

Why, did nobody tell Kyla what to do in the room where the milk is expressed and what to do with it, other than stick the small plastic bottle in her handbag?

Why, did nobody show Kyla how the baby needs to be taken out of the plastic cot? (not an easy task, when trying to avoid the many tubes getting stuck or tangled)

Why, did nobody tell Kyla that the uncomfortable upright plastic chair next to the baby, could be reclined, to make it more comfortable when trying to nurse the baby?

Why, did nobody tell Kyla who was doing what with the baby? (people in different coloured uniforms appear without saying a word, changing tubes, settings etc)

Why, did nobody take Kyla to the intensive care unit to show her where the baby was? Explain what the wires meant? (Quite frightening when you see your baby for the first time all �wired up�)

Why, is a message given to the parents, purely factional without any empathy? ( first time parents, with a 4 day old baby , having undergone a 3-4 hour heart operation)

Kyla and Dan were met by a new doctor who took over the evening shift, who did not know Aiy�la�s name or Kyla and Dan�s name, who without any introduction  or eye contact, delivered the following message: 

�Tonight is critical, she is stable at the moment, but, if she needs any emergency heart surgery they will call you. The valve seems to be open and closing, but this could change, she is on the ventilator until we can confirm that everything is functioning�.  

Whilst  the update was great, the harsh way in which the message was delivered could have reduced the more faint hearted to tears..

Kyla asked:  �Is she stable?�, �yes, for now�

�Did she have a scan?�, �yes�

�Is the valve working, i.e. opening and closing?�, �yes but, it could fail�

He did volunteer: �We had to give her help to pee, she has a catheter�. Kyla had to question if that is normal to which he said �Si�. (why mention it then?)

We are all well aware that our little baby has had a massive operation and of course the next 48 hours are crucial, I guess it is the bedside manner, or lack of that makes this so much harder. Just a little bit of compassion would go a long way, but clearly that is too much to ask.

Tomorrow is another big day, another mile stone to reach.   

A little bit of good news......

We were called back to the waiting room just now and were met by the cardiologist, who confirmed that they managed to open the valve by 8mm. Success so far!
Now we are waiting to see if the valve is closing by itself.

One step taken in a long and windy road.

Thank you for all the messages!

Lindsay's word just now : 'I'm now going to sob some more, in happiness'

Still waiting...

Last night Kyla and Dan were told to be in hospital for 08.00, which they were. 

This morning at 08.00 when they arrived, they were told baby Aiy�la had developed a temperature and they were not sure if the operation was going ahead. They proceeded to do some 'tests'  and Kyla and Dan were asked to leave the room. They were then asked why they were here waiting........ why? Because they were told to..... eventually at 09.00 they wheeled her incubator out of the intensive car unit and heavyhandedly ( if this is a word) proceeded to smash it into the door frame. Twice! Christ! You would have thought that even the most junior nurses would have some kind of antenna, aiming to avoid the concrete pillars, swinging doors, exit signs and door frames. Particulary when the parents are watching. 

I realise that in the overall scheme of things this is not important, but still.

So, I had Herceptin and as the nurse said ' el ley de Murphy' ( Murphy's law), two veins they tried , failed. On the third attempt they managed to get it in. Out of all the days.

I still managed to argue with the oncologist, who is insisting that I have a biopsy. I accepted the referral letter, just to get out of there as quick as possible.

So here we are waiting, in a coffee shop. Drinking tea! 

Something that dawned on me the last few days, which is so obvious but took me by surprise is that as grandparents, nobody wants to talk to you. Logical, but it had not dawned on me until it was spelled out by the doctor: 'Parents only'! I wanted to scream out, ' I am the mother'! Kyla's mother and she needs me!!!!  I suddenly feel transported into another generation, the old one, the grandparents, cast aside, no influence.... sounds dramatic, it' s not. I smile at myself to think , I could just do what I always do: organise and problem solve. Geoff and I are helpless 'bystanders' . Actually we all are.

So the waiting continues.

I am overwhelmed by the kind warm support we have all received from friends and family. Whilst we are not a religious family, we have many friends who are. There are from what I believe literally 100s of people are praying for little baby Aiy�la. So if there is a god, then now is the time............ 

Waiting...............

Surreal is a word that sums up today.

Walking through Malaga, a place we love and know so well, is a strange feeling. I see so many new mums with babies in their prams, families with small toddlers all enjoying the beautiful sunshine. I feel strange walking amongst the crowds, and wish we could be carefree and simply be......

Kyla and Dan keep going to the hospital to see baby Aiy�la, who loves a cuddle with her mum, but won�t feed. Sucking seems to be to much hard work for her at the moment.The rest of us are not allowed in to see the baby.

Today I had my blood test for tomorrow, because unbelievably out of all the days, I am having Herceptin the same time my granddaughter is being operated on. I managed to change my appointment, to 09.00am, and hope to be out of there by 11.00, so I can get across town to the children�s hospital.  I just cant believe my luck, that out all the days, I have to have Herceptin. The oncologist refused to move my appointment by a week and I actually did not have the energy to argue with him.

Lindsay, who arrived last Thursday, the day Kyla went into labour ( she actually came out for my Birthday, which I happily cancelled), flew back this evening. It was wonderful having her here, she managed to make us laugh, when really we just wanted to cry. All of us are staying in our apartment in Malaga ( which was designed for 2 people, max 4, but definitely not 6), has actually been a �bonding and at times funny� experience. �Camping� springs to mind, but in times like this, all of us sticking together is proving to be therapeutic and comforting.

Gods knows if we will get some sleep tonight, Aiy�la�s operation starts at 08.00 and is likely to finish at 12.00, hopefully with a successful outcome.

Interestingly, I emailed Galves hospital, asking them for a meeting. So far I have not had a reply����..

More tomorrow. No Cannabis oil tonight, otherwise there is no chance of me getting up early. Instead we are drinking wine tonight and toasting our little granddaughter, who lying by herself in this huge baby unit.

From bad to worse............and beyond..........

My conditions is nothing compared to what we experienced the last 3 days.
Our daughter Kyla was due to give birth last week. Her contractions started the night of the 2 February and we arrived in Galvez hospital at 02.00. By 05.00 a beautiful baby girl was brought into the world, weighing 3 KG.  I consider myself so lucky to have witnessed the birth of my granddaughter. Something I will cherish forever and never forget. We were over the moon. Life could not get much better, seeing our daughter and son in law with their little baby daughter.

Sadly, our joy did not last long.  All day nobody came to see them, no midwife, no nurse,  no paediatrician. All day, Kyla tried to feed her daughter, who would not wake up.  She simply slept.  At 19.00 a nurse entered and asked Kyla how often she had fed the baby, to which she explained that she had tried to feed the baby, but that the baby would not feed, as she would not wake up. The nurse replied � if you don�t feed your baby you will starve her�, making Kyla feel as if she failed her new born baby. The nurse disappeared and came back with a baby bottle of formula  milk, she  picked the sleeping infant up and forced the bottle into her mouth, with the result of the baby, Aiy�la, bringing the small amount of milk up again. This was repeated twice, after which even the nurse realised that the baby , which had turned blue, was not feeding. The nurse took the baby , informing us that she was going to �check the baby out� and left the room.

2 hours later, when we still had not heard from anyone, we called the nurse back via the emergency bell, as we could not find anyone in the corridors. A paediatrician  turned up to inform Kyla, that the baby needed to see a cardiologist, as there was �something wrong with the baby�s heart�. She told Kyla that she could not see the baby and that they were going to call an ambulance in order to transfer the baby to a children�s specialist hospital. This was at 22.30. By 23.00 when the ambulance had not arrived, we started to worry. We asked the nurse and paediatrician to call the ambulance again, as we were starting to get concerned. In fact we asked them to hand us the baby, so we could drive it to the hospital, but they refused.  100 (that is what it felt like),  phone calls later, the ambulance arrived at 03.00. 4 hours later!
We followed the ambulance to the children�s hospital, which was only 2 km down the road and watched with horror as the baby was wheeled into the intensive care unit. We were not allowed to see her and by 05.00 in the morning were asked for a meeting with the cardiologist, a lovely caring lady. She told us that little baby Aiyala had �severe pulmonary valve stenosis�. I googled it immediately, which I shouldn�t have. I read that it is not difficult to spot a baby with this condition, as they have difficulty feeding, often look blue, sleep all the time etc. Any half qualified nurse should have been able to spot this, if she had bothered to look at the baby.

So our beautiful granddaughter has been in the intensive care unit since Friday night/ Saturday morning.
Kyla has been trying to express milk to try and feed the baby, but she is sleeping most of the time and it feels impossible to try and wake her.
This morning, Monday, 2 cardiologists and 2 surgeons met, in order to discuss the plan of action. We met with them after the meeting and were told that the operation was set for Wednesday morning, 08.00. They will try to enter a wire into her vein in the groin, feed it through to her heart and will try to balloon it open. We pray this will work. There are risks of course, but both the cardiologist and surgeon we spoke to, filled us with confidence in their ability. Apparently the hospital carries out well over 100 operations of this type every year. If this does not work, then after a few days, they will have to carry out open heart surgery. We can�t begin to even get our head around this, as it means stopping her tiny heart, which is not something the doctors want to do. We just hope that the operation on Wednesday is a success, but who knows, we will have to wait.

Waiting is one of the worst things, seconds feel like hours. Hours feel like months. We have lost track of what day or time it is, we are numb.

I have asked myself so many times over the last couple of days, Why??? Just simply why??? What have Kyla and Dan done to deserve this? What has this tiny little baby girl done to deserve this? Words fail me. 

Interesting to note, that the hospital release papers of the Galvez hospital, stating that 'the baby left with no known issues'. They will be hearing from me, when this nightmare is over!

One step forward............ and one step back.......

So how do you know you are cancer free? ������. A question I have been asked many times over the last couple of weeks. A very good question.

The answer is , I don't / won�t, and I am okay with that.  For me the price to find out, is too high. Whether a PET scan or biopsy or mammogram, all can cause or spread cancer if it is in my body.  So for now, I will continue to do what I am doing and I will continue with Herceptin as long as my veins play ball.  I will not accept a plate under my skin in order to administer the IV.

A couple of weeks ago I underwent a test called �Thermal imaging�. For anyone who has not heard of this in the medical field, nor had I, until I started researching it. 

http://www.faim.org/medical-thermal-imaging-for-preventative-screening

Medical Thermal Imaging for Preventative Screening Kimberly Schipke

thermalimagebreasts.jpgImage courtesy of Carol Chandler, D.O.M. and Kimberly Schipke, M.S.

Image #1: Using medical thermal imaging, the neovascularization of breast cancer can be seen in the earliest stages when the tumor outgrows the host blood supply with no pain and with no exposure to ionizing radiation.

With over 8,000 journals published worldwide, medical thermal imaging has plenty of research to support its use for non-invasive and preventative screening. Most recently it has been promoted for use in early detection of breast cancer.

Using medical thermal imaging, the neovascularization of breast cancer can be seen in the earliest stages when the tumor outgrows the host blood supply with no pain and with no exposure to ionizing radiation. Clinical thermographers can also monitor areas under the arms where mammograms are unable to image which increases the potential for early detection in those areas. Cancer treatments can be monitored for new blood vessel formation and recession. The physiology and energy consumption of the tumor can be used to help examine growth.

No painful compression of the breasts is required for thermal imaging. Women with breast implants should consider using thermal imaging to monitor for infections due to implant leakage. The fatigue rate of the encasing material (approximately ten years) and the length of time the implants have been within the body affects its resistance to impact. The annual exposure to the high compressive force of the mammogram could cause cracks which lead to a further degradation.

My results came back ok, What I mean is that they did not see any cancerous growth. It was an interesting experience. I had to remove all clothes from my upper body and 'cool down' in what I call a 'freezing room'. Weird sitting topless by yourself in a freezing room. After a view minutes, ( I guess when I was considered to be 'cool' enough), I basically had my picture taken from all angles. Arms up , front on, arms up , sideways, arms up from the back.
A few minutes later, I could see the images for myself. ( I decided not to post mine on here, as looking at my imagines, clearly my topless glamour days are well and truly over!) The above photo from the website is a good example though. I am delighted to say that this is not my image, as the one above is not good news.

As I understand it, cancers are 'cold', but likely to surround themselves with 'hot food'. Blue therefore is bad news. I had not blue colour anywhere and have received my report, that basically states, that they can't find any tumor activity, but that I need to keep an eye on both breasts. Well that one is obvious. But, good news.

So, if that is correct then here comes the next question.... Now what!?
Yesterday I had the scan underneath my armpit, where I located a lump as big as a golf ball. 2.7x1.7cm to be precise. The doctors who carried out the scan, was very keen to carry out a biopsy, which of course I declined. He could not confirm by the scan only, if this was a new tumor or what it might be. His recommendation was to take a biopsy and to cut the entire thing out.
Well, I have been around for long enough now, to understand why he would say that. It is his job! That is how he earns his money, 'detect and cut'.

I have decided to do neither, but to leave it. Instead I will repeat the thermal imaging in three months, to see if anything has changed and in the meantime carry out lymph drainage by myself. ( I watched a video on YouTube, seemed straight forward.) I have warned Geoff that if I find I can't do it, he is next in line to help me. Besides that I am still looking for a professional to carry out lymph drainage, but that too is a challenge here. I have spoken to a few people who offer it, but when questioned they are not qualified, they did the same as me, read up on it and watch a YouTube video.

I feel for my family, because I think they would have preferred me to have the biopsy, mainly to get clarity, which makes sense. But, as Geoff said last night, 'It is your body' and he is right. I thank them for their ongoing support.

At times this 'journey' feels like on hell of an emotional roller coaster.