Tough tough tough decisions…..

We have some good news – the cancer has not spread…. Its still local (in the brain).

The bad news is… Although the cancer has withdrawn (got smaller)… The cancer is still there… That is not good news!

The thing that really gets to this type of cancer in very few success cases, is radiotherapy…chemo doesn’t…

We have a very very very serious problem now, because the cancer is not completely gone which means it will start growing at some point and now, her cancer is radiated… And a completely different beast to deal with… This was my biggest concern from day one…

So the options we were given were:
1. They release us and we are free to go to the Burzynski clinic…
2. We continue with Thiotepa

It’s easy to decide right? No it’s not…

19th of September she had a clear MRI, 5 weeks later it was spreading and she had seizures… This MRI was not clean, and the cancer is now radiated which means 5 weeks from now… We will be in a lot of trouble based on the “pattern” this cancer has shown. This cancer is extremely aggressive and we look at months that Chiane will have. We spoke to the Burzynski clinic prior to yesterday’s meeting at GOSH and their feeling was, if the MRI is clean we should go so that they can start… If the MRI is not clean, it’s bad news as it will not give them enough time to do what they got to do… For the Burzynski clinic to do what they got to do, they need a clear MRI (in her case) to give them 3-6 months to do their thing, but if it’s still there it’s too aggressive to swing it around in such a short period of time…

So, yesterday was a very long and serious meeting to discuss how we can push this cancer back to buy us mire time… And the answer was Thiotepa. No other chemo will now push this cancer back… The only chemo that can is Thiotepa…

We raised our concerns as a lot of children die because of Thiotepa, not of cancer and GOSH also stated that Thiotepa is “a very serious toxic drug and nothing comes close to it”…
They stated that “the risk of Thiotepa is double that of her brain operations” this chemo can either push the cancer back, or kill her…

We spoke openly and freely and the general feeling was, we were ALL sitting on the same side of the table discussing the best way forward… There was no shields, everyone was open and receptive to ideas and we felt, for the first time we were all one team and the focus were, “how do we stop this thing”.

GOSH did not “sugar coat” anything and we felt all politics was left by the door… It was a very good feeling in very bad circumstances. We felt like one team…

Here is the problem regarding Thiotepa. It’s the daddy of chemo’s…what will it do to her?

1. Thiotepa “attacks fast growing cells in the body” (because this cancer is fast growing cells) which also means it will attack fast growing cells in her body… And the fastest growing cells in her body is the mouth, throat and gut (gut lining)….which means her mouth will be raw and covered in sores, her throat will be sore and her gut lining stripped. This drug is very toxic and homeopath will have very little effect…which means Chiane won’t be able to eat for weeks! She can’t consume any food as she will have no gut lining to protect her stomach…she will be fed through “intravenous feeding” meaning through her blood stream, not her stomach…
2. It wipes out her bone marrow and platelets for 4-6 weeks and this chemo is different than all the others, she will have zero levels for a long time… Should she start to bleed she will bleed to death and they won’t be able to stop it…this is why she can’t eat food… If any food she swallows scratch her throat or gut, even something simple for example as a popcorn shell or a tablet! There will be no gut lining protecting her which means anything causing a scratch inside her will cause her to bleed to death and a lot of children die once they get Thiotepa because they bleed to death internally in their gut and they can’t stop it, she will have no platelets and it will be game over….
3. She will have no immune system and compare to other chemo’s previously, this one will knock her back so badly her body will have no bone marrow, no defense system, no neutrophils, no White blood cells and a cold can kill her… If she picks up any infections, any bacteria or any viruses we are in trouble… A lot of children die after receiving Thiotepa because they get a viral or bacterial infection if these kids do, there is nothing that can be done and they die of the infection not if the cancer…

It was a very very serious meeting; there were moments of silence and everyone knew this is very tough decisions… And GOSH made it clear there is no guarantee she will pull through… As a lot can go wrong and Chiane will either “survive Thiotepa” or die from it…

We discussed what can be done as a precaution to eliminate  the above and increase her chances of surviving Thiotepa and they stated that a few factors will play an important role for her to pull through…
1. She can’t eat or drink anything as it can cause her death… Not even tap water… It can kill her (normal tap water has a lot of chemicals and is ok if you have a gut lining but lethal if you don’t and the chemicals in normal tap water can eat away at her gut and cause her to bleed). She will be given special water prepared at the hospital…
2. They will transfuse her CD34 cells that was harvest and frozen back in to her body to “kick start” her bone marrow to rebuild itself but it will be a slow and long process to have a defence system again…
3. All precaution will be taken by anyone dealing with Chiane from a “clinical level” not to give her a infection…

Tough tough tough decisions…..

So our options are:
They stop and we are free to go! But Chiane will have months to live and it’s not enough time for Burzynski to do what he has to do. Even if we get on a plane tomorrow… it’s not enough time. The cancer is now very aggressive and radiated… It will grow at the speed of lightning.

We do Thiotepa and Chiane will either make it and pull through, or she won’t… The chances are 50/50 for her to survive Thiotepa, and GOSH stated they will do everything in their power to help her pull through but the risks are high and stakes are enormous! If she pulls through Thiotepa, it will buy us at least 6 months to a year… Which will give us the time to go to Burzynski…

So in short,
1. We stop all treatment now and it’s over in a few months and we were given this option… We can stop now. they won’t force us to go through with Thiotepa as it can kill her…
2a. OR, we continue with Thiotepa and Chiane will either die because of what Thiotepa will do to her (bleed to death or die of infections as a lot of children do die weeks after receiving Thiotepa)
2b. She pulls through after receiving Thiotepa and this chemo will push her cancer back for at least 6 months to a year…

No one forced us to go with option 1 or option 2. It’s our choice which way we want to go…We will enjoy Christmas… Make the most of it…

Clear our heads for 2 or 3 days… Then  we tackle the above.

Chris

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Posted on December 22, 2011, in News from Chris. Bookmark the permalink. Comments Off on Tough tough tough decisions…...

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