Hana’s Brain Tumour Regrowth: The Action Plan

Hana Tumour 2016How to make a decision on your child’s health when 1. You don’t like any of your options 2. You know that whatever you chose, the fallout will most likely impact upon your child for the rest of their lives?

After the devastating fallout from Hana’s first surgery to remove her tumour my husband and I have taken our sweet time to decide on the best course of action this time round. Luckily, the medical professionals we have consulted with regards to her treatment have supported us in this. We will not be rushed, or hurried this time round and thankfully Hana’s tumour is small enough to allow this, unlike last time.

Our aims are to:  Minimise any further damage to ANY part of her brain, and, only take action if action is needed.

We have been intensively researching treatment options of all types, from conventional and mainstream to newly emerging non-tested treatments to the alternative. I have also lost count of the professional input we’ve had from neurosurgeons, oncologists and radiation oncologists around the world. Together with these opinions, our accumulated evidence base (in the form of studies, articles and book chapters) we have put together a plan.

We have come across molecular targeted radiation for tumours, ultrasound and some other newly emerging treatments however the biggest bulk of ‘evidence’ available occurs within the realms of surgery and radiation.

Let’s look at the two main treatment options available for Hana’s type of tumour:

Radiation Oncol AppointmentRadiation

Hana’s first neurosurgeon recommended radiation for this regrowth, and his opinion was supported by every radiation-oncologist that we contacted for input. Along with surgery (and chemotherapy for malignant cancers), radiation is one of the main treatments available for cancer.

How does it work?

Radiation, in the form of X-rays, is sent through the brain, through the tumour and back out of the brain. The rays pass repeatedly through, all meeting at the point or area of the tumour, so it is this point that gets the highest amount of radiation. However, even though this radiation is more intense at the site of the cancer, a large area of other brain tissue is also irradiated as the rays must enter and exit the brain in multiple locations. Available here in Australia is Gamma Knife and Stereotactic Radiation.

Proton Beam radiation is slightly different to conventional radiation in that the protons enter the brain, reach their maximal strength at the site of the tumour before pretty much being exhausted, preventing a ‘exit’ point from the brain. This is called the Bragg Peak. Proton Beam isn’t available here in Australia although worldwide has been increasingly recognised as something that should be given to children with brain tumours due to the fact less brain tissue is irradiated.

What is the Fallout of Radiation?

Everyone copes with radiation differently and it depends what body part is irradiated. Obviously irradiating the brain is pretty massive and changes can be huge this is especially so for children who are likely to exhibit great neurocognitive changes after radiation.The fallout can occur years after treatment,

High dose radiation is an established carcinogen. Many recipients of radiation to the brain experience future brain tumours years later – some benign, some malignant. We have decided AGAINST radiation – more on why below.

 

Surgery

OK this doesn’t need explaining…but it’s worth mentioning ‘surgical approach’. For Hana’s first tumour she had an open craniotomy – her skull was opened transversely and the surgical tract extending through the frontal lobes, severing the corpus callosum in order to get to the extensive tumour (which infiltrated the optic chiasm, third ventricle, pituitary, hypothalamus all the way down to the pons area in the brain stem). This is enormous surgery and as you know the collateral damage was massive.

This time round we have had a surgeon propose the supraorbital approach, this means going in above the eyebrow, under the frontal lobe down to the pituitary area. This approach should affect less brain tissue than the previous however carries risks of damaging the optic nerves and senses of smell. Obviously if the frontal lobe was handled it could also be damaged. Then there are the usual risks of surgery – death, stroke, meningitis and the lot.

Anti-Cancer Regime

I don’t think we really have long enough between scans to properly initiate a powerful anti-cancer regime and allow it to have an impact but nevertheless I did quickly put together some well known anti-cancer supplements and healing regimes that I hope will help in the long run even if this time round the tumour can’t be halted in it’s tracks, here is a non-exhaustive list:

Energy Healing

We have started Energy healing – this is a HUGE topic and there is no room to go into it here so I’ll save it for another blog post…All I can say is, WOW.

Supplements 

Tumeric (as Theracumin – whole turmeric is a bit too high in phenols for her)

Vitamin C

Activated B’s

Magnesium orally and as daily Epsom Salt baths

Co Q 10 (she takes Ubiquinol)

K2 and Vitamin D

Selenium

NAC (n-aceytl-cysteine), which is the precursor to Glutathione

Frankincense Oil: I use the highest grade oil I can find by Doterra (which doesn’t come cheap at $150 for the teeny bottle). According the input I’ve had and research I’ve accessed Frankincense is one of the few oils that can be taken internally and there is a growing body of research suggesting it has strong anti-cancer properties. However, until more is known on the systemic effects of oral consumption of this oil I am sticking to topical applications (on the temples and cranium) and using an oil burner. SHe will absorb at least some of it this way through her skin and lungs.

Homeopathic Banerji Protocol: I’ve had some fellow alternative health care practitioners get very excited about this unusual use of potentised remedies in brain tumour treatments. However I’m gutted to observe that Hana feels very unwell on this regime. The naturopath overseeing this has given us some remedies to help her cope with side effects but the impact on the regime on immediate quality of life has made it very hard to stick with. So at the moment she is getting intermittent doses which won’t work to their best ability, I know.

Ketogenic Diet: As sugar fuels inflammatory insulin we keep Hana on a very low carb, keto diet. Unfortunately, due to her hyperinsulineamia as a result of the hypothalamic damage Hana’s insulin is still high even when she is in ketosis which is extremely frustrating. :-((

 

How this impacts on Brain Healing

One of the major reasons we have decided against radiation time round is related to brain healing. We are continuing to treat Hana with low level laser therapy to help facilitate brain healing and I simply can’t see how radiation and using laser for healing can possibly go hand in hand, the laser would surely be mitigating the effects of the radiation. The whole point of radiation is to slow down and kill cellular growth (this impacts healthy as well as diseased tissue) – often over a period of years. Whereas laser stimulates cellular renewal! How could we subject Hana to weeks of radiation, in the aim of it slowing down cellular growth whilst at the same time stimulating it with laser!

Whereas if we opt for a surgical approach we can use the laser almost immediately post op to help reduce pain, swelling, inflammation and risk of infection before continuing our brain healing regime in the weeks, months and years that follow.

Countdown to next MRI…

Hana will have another MRI in a few weeks to assess growth. If the tumour is stable we won’t act. If it has grown then we will opt for surgery and facilitate healing with Low level laser therapy before continuing on her anti-cancer regime (which will expand as the months go on and my research increases!).

Thanks for stopping by and for catching up with the latest. Lots more posts lined up for the near future so keep looking out! Remember to check in with me on my Facebook page, I really love to ‘meet’ my readers there. 

 

 

 

 

 

 

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  4 comments for “Hana’s Brain Tumour Regrowth: The Action Plan

  1. John Dixon
    March 27, 2016 at 9:36 am

    Get well soon Hana, I wish you guys all the best and sincerely hope you get a good some good news soon. Stay strong And fight on! If I can help please let me know, I don’t have much but I will do what I can. Please send me how I can donate something to help. John

  2. Frances Beato
    March 27, 2016 at 10:36 pm

    Hi Naomi,

    Like Hana, our daughter has had a Craniopharyngioma too but, her hypothalamus wasn’t damaged during any if the ops. Her’s was damaged by the tumour itself as ithe cyst was at least the size of an orange when discovered and the contents were all crystallized. Yvette is now almost 34 years old.

    After seeing doctor upon doctor upon doctor it took crisis point, just before her 14th birthday, for her to be diagnozed. She was under Professor Besser at Westmead Children’s Hospital who told me that he had never operated on this type if tumour before. It was 3 weeks, after many tests, before she was operated on. Prof Besser was unable to remove her tumour the first time and so it was drained. It grew back again on 2 occasions and the reservoirs that were put in place during the first op never worked. She ended up having 28 sessions of Radiotherapy. They do not do this many sessions anymore as it causes problems later on.

    Yvette started having some problems that I can trace back to at least 2007 but, in the last 12 months she has now been collapsing more frequently. It is getting worse and worse. The doctors have no idea what is going on which for me is very scary and I don’t know where to turn. According to what I have read it most likely has been brought on by the fact she has had 3 ops and most of all by the fact she had 28 sessions if Radiotherapy.

    I have found out that this type of brain tumour is rare and Yvette’s is made rarer because her hypothalamus was damaged by her tumour. I have read that there are only about 140 cases a year diagnozed in America so here in Australia it would be far less.

    I hope by sharing this with you it may help you make a decision regarding Hana’s brain tumour regrowth.

    Should you wish to contact me later by phone, please do not hesitate to let me know. I realize that it is very hard to get support here in Australia. The only support we received in the early years was through Camp Quality.

    Kind regards,
    Frances

    • Naomi R Cook
      March 29, 2016 at 1:27 am

      Gosh Frances, what a journey you have been on. I’m so sorry to hear how alone you were in it. I’ve been lucky to connect on Facebook with the international cranio group but of course these options weren’t around for you and you must have been so utterly alone, it’s heart breaking! Thank you for your kind offer of a phone call, it is so good to know that there are fellow cranio parents out there to connect with – family, really. xx

      • Frances Beato
        April 1, 2016 at 10:26 pm

        Hi Naomi,

        When I wrote to you I forgot to mention that we did have a lot of support for the first 6 weeks that Yvette was in hospital when she was first diagnozed.

        What gave Yvette pleasure and our other children, was attending many events held by Camp Quality. Yvette went on several trips with them. She especially loved Norfolk Island. I know they are in NSW but, I’m sure they are in other States as well. I would recommend them to anyone as they have trained staff to look after the seriously ill children.

        Yvette was never invited to be apart of Canteen which for her was disappointing. Since Camp Quality we had very little support for a long time but, we now we do have some through Yvette and my Bible Study a Group.

        I got a bit of a shock yesterday as I had just spoken with her and was making my way to her. When I walked into the aisle she was in I saw her on the floor surrounded by 4 Woolies staff members. They were wonderful and did everything they could do to help us. I had only had her in Emergency the day before.

        We are still waiting for more tests to be done as they don’t think Yvette is having seizures. I haven’t skept all night as I have been thinking about what has happened. I decided to do some more research and I think that I may have come up with the answer. I had overlooked Narcolepsy because the doctors dismissed the idea. I read a paper written by a German whose surname is Muller on Daytime Sleepiness in Patients who have had Chikdhood Craniopharyngiomas which have damaged not only the pituitary gland but, also the hypothalamus. He talks about those who are obese and have sleeping problems. Yvette has Sleep Apnoea. She wakes up off and on all night. He goes on to say that patients who have this problem have a lack of Melatonin which causes daytime sleepiness. He says this is known as Secondary Narcolepsy which is rare.

        I am really hoping that I have the answer and I want to share all that we find out as it may help others who find themselves in a similar situation.

        I did send an email to join an International Craniopharyngioma Group but, I haven’t heard back from them as of yet.

        All the best for Hana. I am praying for her and the rest of you too.

        Love from,
        Frances

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