Please pray for us…

Good morning everyone.

The biggest thing for us is the waiting part… We take everyday as it comes at the moment… On Friday during Chiane’s op they also did a lumber punch. For those of you that do not know what a lumber punch is – they draw fluids from your spine. Why only now and not earlier? Because of Chiane’s diagnosis. The cancer that Chiane has in her brain is rare. There are so many different types of brain cancer. It depends where it sits in the brain and the histology (how the cancer functions/grows/thrives/causes/etc) of the cancer. Chiane has sPNET. The medical field world wide knows very very little about sPNET. The prognosis of it, the histology, how to nail it…they know a lot, they know what it is NOT! With every study/clinical trail/research/protocol 1 or 2 children make it but majority of children in the same trial do not! They can’t understand it and there is no comparisons. This thing “has a mind of it’s own”. What makes sPNET even worse is the fact, that it sits in the part of the brain where “all the fluids collect”… The fluids that run up and down your spine… sPNET is known to produce cancers cells…and if Chiane’s brain cancer has started to produce cancer cells it means the fluids in her head and spine are cancers… How do they test if you have cancer in your fluids that run down your spine…. Lumber punch… We will know by Wednesday if she has cancer cells in her spine. In your spine you have stem cells.

Stem cells have the remarkable potential to develop into many different cell types in the body during early life and growth. In addition, in many tissues they serve as a sort of internal repair system, dividing essentially without limit to replenish other cells as long as the person is still alive. When a stem cell divides, each new cell has the potential either to remain a stem cell or to become another type of cell with a more specialized function, such as a muscle cell, a red blood cell, white blood cell or a brain cell etc… IF her sPNET started to produce cancer cells, then her stem cells will be cancers, which means her whole body will become cancer… Spine cancer… Leukaemia…it is know within sPNET, that majority of the children that do not make it, is because of secondary cancers that start after chemo and radio therapy. 9 months after treatment is completed, there is a period where everyone holds their breath and crosses their fingers… Because in majority of cases of sPNET “relapse” takes place. What does relapse mean? It means the cancer comes back MORE aggressively, often spreading into other parts of the body with secondary cancers (other types of cancers). If relapse takes place,percentage of children that made it is 0.5% (of the 7% in sPNET cancer) What is the life expectancy if she relapses? …. 13 months….

Stem cells are distinguished from other cell types by two important characteristics. First, they are unspecialised cells capable of renewing themselves through cell division, sometimes after long periods of inactivity. Second, under certain physiologic or experimental conditions, they can be induced to become tissue- or organ-specific cells with special functions. In some organs, such as the gut and bone marrow, stem cells regularly divide to repair and replace worn out or damaged tissues. In other organs, however, such as the pancreas and the heart, stem cells only divide under special conditions. The brain and spinal cord together make up the central nervous system. If Chiane does have cancer cells in her central nervous system – we have a serious serious problem. Why? Because they plan to harvest her stem cells before therapy starts…and they want to pump it back in to her body after therapy is completed, because the chemo and radio will kill all existing stem cells; her bone marrow etc; she will have no immune system.

If the lumber punch results come back and they say that they have found cancer cells in her fluids… It will not be good news…

If it is clear and her stem cells are cancers free… We have a shot at it. You may ask what are her chances then…. 7%…..

The medical world knows very, very. very little about sPNET and they have thrown millions and millions for dollars/pounds at it to research it; to understand how this thing works. We are aware there is currently 156 research study centres world wide trying to understand it. For the last 16 years the medical field has lost it’s battle.

Why do a few children make it? They don’t know. Why does majority die… They don’t know.. With every study they learn more and more, and with every trial they exclude more things that it is not…but they have NO clue how to treat this thing effectively.

Let’s talk statistics….
sPNET makes up 5% of all brain cancers.
95% are all other Brain cancers.

Of the 95% of other brain cancers… 62% makes it…

Of the 5% of sPNET…if you isolate that 5% into 100%…7 makes it IF there are no cancer cells in the spine, and 0.5% makes it if there are cancer cells in the spine…

So in greater scale of things, if we throw all the brain cancers together with the world wide statistics for cancer research and we work out the ratio as a whole… If we include sPNET with all brain cancers…

Her chances are…0.35% in the greater scheme of all brain cancers if her lumber punch shows it’s clean and there are no cancer cells…

And her chances are…0.025% if the results come back saying there are cancer cells…

When will we know? We have been told early part of this week. Your guess is as good as ours.. Today? Tomorrow, Wednesday?

What we ask as a family is: if you could all pray with us that the results are not positive for cancer in her spine please? 0.35% is a better chance than 0.025%…….

The next 2 days… The waiting game… It is something you can not explain as a parent…when you look at your child… A gift from god… An angel… Your angel… Looking so healthy, playing as if nothing is wrong… And you know… It is not the case…

We will NOT let this thing get to us. We will stay positive and we will be happy, every day spending our time to make our kids laugh, to make them feel our love and to be there for both of them…miracles happen every day! We will believe and one thing we will have is hope!

1 COR 13:13…
“And now these three remain: faith, hope and love. But the greatest of these is love.”….

We will not lose our hope and we will not lose our faith….and we will love them through all of these dark hours… But right now… Today… Tomorrow… We can do with some good news and we ask that you all pray with us that Chiane’s lumber punch result is negative! Please…..


Posted on July 11, 2011, in News from Chris. Bookmark the permalink. Leave a comment.

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